Mal De Debarquement Forum

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Hi, I have been trying to help my mother who has Miniere;s Disease. She has just had a bout of it for about a week. she is very depressed, and none of the local doctors have been any help. Up to this time, she would get a bad episode, sometimes requiring a shot, and then it went away. This one was different. She has been feeling slightly dizzy all the time. Every day she has a vertigo episode. She has been housebound, afraid to leave, not knowing when it will hit. When she called her doctor (on Wednesday), he said, "Wait until Monday and see how it is". The specialists he sends her to take hearing tests, and say well, there is really nothing that can be done. She cut out an article telling about endolymphatic shunt, and labyrinthectomy, and vestibular neurectomy. I have been on the internet for a long time now, trying to find a list of specialists that work with this kind of problem. I learned that I am looking for an otologist or neuro-otologist. Where can I find a list for our area. Help! We live in Ephrata, PA., close to Lancaster, an hour away from Philadelphia and Harisburg, I can get to NY or Baltimore & Washington. Would John Hoppikins be a place to start? We've already been to Hershey Medical Center. Any help would be appreciated. Thanks
Cindi
USA - Saturday, October 18, 2003 at 10:28:04 (EDT)

Spammers have started attacking the boards. They caused us to lose all comments before 2002 (if anyone has copy of the comments up until September, 2003, please let me know). It will likely be a neverending battle too - I have put in one little preventive fix to see if we can stop them.
Evan Torrie
Campbell, CA USA - Sunday, October 05, 2003 at 20:00:50 (EDT)

ATTENTION: To those who are suffering from the rare syndrome, Mal de Debarquement, this site has been hijacked by pornographers. For help with your syndrome, please investigate other resources until this site is fixed.
bobbi
USA - Sunday, October 05, 2003 at 11:26:33 (EDT)

ATTENTION: To all those with Mal de Debarquement Syndrome. This site has been hijacked by pornographers. Please try to find other resources until this site has been fixed.
Annie
USA - Tuesday, September 30, 2003 at 13:19:07 (EDT)

I have been a memeber of this support group for over 2 years and just want to ask the person/people responsible for trashing our site to please stop. This is a very rare syndrome and we need to have a safe place to go for people seeking answers to their health issues. Thank you.
Marla Cruise
USA - Monday, September 29, 2003 at 20:44:49 (EDT)

Hi I have had a sore throut for abou 2days I was wondering how to cure it with-out going to the Dr.? thanks
Bethany (bethany_20022001@yahoo.com)
Stilwell, ok USA - Sunday, March 10, 2002 at 21:00:02 (EST)

Hi, I have been trying to help my mother who has Miniere;s Disease. She has just had a bout of it for about a week. she is very depressed, and none of the local doctors have been any help. Up to this time, she would get a bad episode, sometimes requiring a shot, and then it went away. This one was different. She has been feeling slightly dizzy all the time. Every day she has a vertigo episode. She has been housebound, afraid to leave, not knowing when it will hit. When she called her doctor (on Wednesday), he said, "Wait until Monday and see how it is". The specialists he sends her to take hearing tests, and say well, there is really nothing that can be done. She cut out an article telling about endolymphatic shunt, and labyrinthectomy, and vestibular neurectomy. I have been on the internet for a long time now, trying to find a list of specialists that work with this kind of problem. I learned that I am looking for an otologist or neuro-otologist. Where can I find a list for our area. Help! We live in Ephrata, PA., close to Lancaster, an hour away from Philadelphia and Harisburg, I can get to NY or Baltimore & Washington. Would John Hoppikins be a place to start? We've already been to Hershey Medical Center. Any help would be appreciated. Thanks
barbara (balilley@yahoo.com)
Ephrata, PA USA - Sunday, March 10, 2002 at 12:44:34 (EST)

My MDD started 10/20/01 after a 7 day cruise. I tried EVERYTHING! I had all the tests....Finally after falling so many times and feeling like I was one big bruise, out of desperation I went to see a balance specialist. I was put in bed with valium and tigan. That didn't work. I was switched to Librium and Tigan and bedrest. That slowed down the rocking, but my brain was so fuzzy I was unable to function. I found another MD who has a lot of patients with MDD. He started me on Elavil 10 mg at night. After 3 nights, the rocking stopped. I am now weaning off of the Librium and I am still not rocking. This doctor explained that MDD is a neurologic problem and while the Elavil will control the symptoms, the MDD may not go away. I don't care. I feel like a human again. He also explained that once you have MDD, if you go back on another cruise, you have a high chance of it returning. Beware. Good luck all of you. My bruises are finally fading. Nancy Gomez, RN, MSN
Nancy Gomez (dngomez@cox.net)
Lake Forest, CA USA - Sunday, March 10, 2002 at 02:29:39 (EST)

Marilyn Kidson, if you are checking into this site, please write me. TJ
TJ (P-TIVYE@prodigy.net)
Huntsille, AL USA - Wednesday, March 06, 2002 at 22:50:30 (EST)

Hi everyone. Great reading your comments.Hang in there and take each day ata time. I found amytriptyline helped to relieve symptons but didn't necessarily cure the problem. I've recently had physiotherapy on my neck-a wonderful new neck-if ever I get M.D.D. again I'll try this. I do have one question. Has anyone had problems with general anaethestics? Could you let me know as I'm having surgery shortly.
Robyn Cox (coxes@eisa.net.au)
Melbourne, vi australia - Wednesday, March 06, 2002 at 17:18:28 (EST)

I'm back! After writing that I was over MDD, two plus years after a cruise, I am now sad to say, "it's back". I had been sympton free for about a year, and came down with a major "cold" while in Phoenix. A Dr. friend got me Zithromax and it eventually did it's job, but... I'm rockin and rollin again! Then it occurred to me that my first episode started with a bad cold before the cruise, and I was still taking Zithromax when the ship sailed. So... could it be the Zithromax that triggered the return of MDD? At least this time I know that it can eventually go away,though the thought of another long session is depressing. Thanks for any input.
Barb Buchanan (BPB34482@aol.com)
Ocala, FL USA - Wednesday, March 06, 2002 at 10:11:48 (EST)

TO ALL VISITORS TO THIS PAGE: Like TJ, I urge you to visit the following site to get your questions answered. >>mdd-list-request@etete.com<< Most of us MdDSer's only correspond with each other at the other site. If you prefer, you can just "look in" on what we are talking about without participating openly. I did for several months before I wrote in. Since joining the "mailing list" via this site almost three years ago, this is only my second time back HERE! Tens of your fellow rockers are waiting to help with your questions at the other site. Hope to see you there soon.
Judy (judymessen@prodigy.net)
Chapel Hill, NC USA - Monday, March 04, 2002 at 22:19:35 (EST)

My wife reports the same symptoms that most of you have - swaying and moving up and down in her head at the same time. This started October 2000 after a cruise for 7 days. I would like for those of you who took a cruise to think about something ---- the sleeping arrangement on the ship. Did the bed you slept in move so that you could be away from your mate? Mine was mounted to the side of the ship parallel with the window. My wife moved her bed at a 90 degree angle to get away from my snoring. She slept across the ship - port to starboard and on her side. I slept fore and aft so that when the ship moved in the sea ( which was sometimes rough) I moved up and down and not side to side. Of course all of the doctors we have seen think that this is just circumstance - but they offer no real help either. What do you think? Also, have any of you contacted the cruise lines to see if they can offer any suggestions? It seems that this is a condition which is directly related to their industry from what I have read here and at other sites.
Don Schneider (schneid811@aol.com)
Houston, TX USA - Sunday, March 03, 2002 at 13:14:42 (EST)

Wow, look at all these new people, Join us at mdd-list-request@etete.com It is a daily chat that goes to a whole group of MDDSers' Lots of feed back, and support and a questionaire to feel out Just go to the above address and put "subscribe" in the "subject" of the letter And you will start getting all the latest news I have had mdds for four years and have recently become symptom free Read Marilyn Kidsons case history, this is what I believed helped me also..Elavil. TJ
TJ (P-TIVEY@prodigy.net)
Huntsille, AL USA - Saturday, March 02, 2002 at 18:28:11 (EST)

Okay, I found this site by accident, trying to find something to help with my condition. I had Phenmonia in Jan.1902, recovered from that alright. Then a few weeks later I come down with the Flu. Dr. said my system was low from the Phnemonia, that I hadn't had enough time to get my strenth back and when this Flu came along I got a really bad case of it. Then the dizziness started. So bad for awhile, I wanted to die. Doc. said the Flu had settled in the ear, causing ear irriation from an ear infection. I've been on Meclizine 25mg (sub. for Antivert 25mg.), and 2 different cough medicines, cahnged meds. I am now on Cipro 500mg. and Quaifenex PSE 120 (sub. for Entex PSE Tab. Ethe Ethex). My husband rented a walker for me the first week, it was so bad. Nothing has ever effected me like this. I've been out of work for three weeks now, and I hate this! Some days are worse than others. I need to get back to work, but since I'm a Sales Assocoate and work on my feet all day, I can't do it. I Lay down Or lay my head back,and feel like I'm going round & round in circles.I fell once, back against my dresser, which caused a bruse all across my back.I use a Cane for walking and balance. Along with my husband helping me out at times. I do have a history of Migraine Headaches. Any suggestions from anyone? Does this sound familiar to you all?
Ruby Rainey (rhjhrainey@sc.rr.com)
Columbia, SC USA - Sunday, February 24, 2002 at 10:49:08 (EST)

I just stumbled onto this site while researching my "dizzy" problem. I've had recurring episodes for the past 6 years. Started with a house boat vacation in Cumberland and now it recurrs whenever I fly. Like most of you I have been through all the ENT tests and MRI/MRA test (which are all normal) I'm now seeing a neurologist who wants to send me to a physical therapists. Something called the Epley Manuever. Has anyone had any experience with this therapy. Any luck or advice you could pass on? Also does anyone feel worse after having a drink or two? Thanks for any info you can pass on. Jenny
Jenny (jwilliams@gmmec.com)
Bradford, Oh USA - Friday, February 22, 2002 at 13:57:19 (EST)

I am now in my sixth week of rocking and rolling since returning from a trip to Florida. I first experienced this sensation about twenty years ago when my husband and I went on our first cruise. I had flown before and never had any problems and I have never been seasick nor had any other motion illnesses. Since that time, anytime I travel or go on long plane trips I come back with the sensation of rocking and rolling as though I were still aboard a ship. The only time I get any relief is when I am in a car. Being in a room with a lot of windows seems to aggravate the problem, also if it is windy outside the sensation is worse. The rocking lasts with me anywhere from three to ten weeks although in previous times I have had temporary relief from symptoms in the morning after a good night's sleep. This time I have not had any relief from the sensation at all and at times the rocking feels quite violent to the point of me feeling nauseous. I have been to neurologists and have had an MRI done and no abnormalities were found. It is very frustrating to have to go through this with no medical help. My family doctor had never heard of this syndrome until I printed out the website for her. I had no idea that anyone else suffered with this until I found this website and found out this had a name. I would appreciate any feedback anyone could give me. It is awful thinking you are all alone with this and that no one else understands what you are going through.
Lynne Selbst (sqdncrmn@pacbell.net)
Simi Valley, CA USA - Friday, February 22, 2002 at 12:29:21 (EST)

Please check out this website for information on Mal De Debarquement Syndrome. You can post a comment/question, etc. and interact with others who are experiencing the same problem. www.braintalk.org
T. (www.braintalk.org)
USA - Thursday, February 21, 2002 at 15:49:21 (EST)

Please check out this website for information on Mal De Debarquement Syndrome. You can post a comment/question, etc. and interact with others who are experiencing the same problem. www.braintalk.org
T.
USA - Thursday, February 21, 2002 at 15:48:26 (EST)

Please check out this website for information on Mal De Debarquement Syndrome. You can post a comment/question, etc. and interact with others who are experiencing the same problem.
T.
USA - Thursday, February 21, 2002 at 15:48:13 (EST)

Hey there you fellow "dizzies". I too have been suffering from "something" since 1987. It started when I woke up, lasted for a minute or two (violent whirling vertigo) and haven't had a severe episode since. But I have now graduated to a constant feeling of movement, not necessarily rocking but a definite movement at all times. I feel better in a moving car, but when I get to my destination, then the problem starts. Feels like my inner ear still thinks we are moving. Can't concentrate at work, use the telephone, use the computer, etc. I know I don't fit any particular category but MDDS seems to be the closest. I was leaning (no pun intended) toward certical vertigo since my neck is always sore and I found out I've got arthritis in C7 and a little bone spur. But I still think the underlying cause is the MDDS. I am going to try the chripractor this week or next and hoping it will be helpful. I am presently taking Klonopin (started today) and it seems to have settled things down a bit. I will keep you posted as to the chriro session! Good luck to all. Don't let this thing beat you!!!
Cathy (carrollce@hotmail.com)
Woodbridge, VA USA - Tuesday, February 19, 2002 at 20:49:54 (EST)

Hello all - I've been feeling the exact symptoms as described in this web site and Dr. Hains study. I was a little concerned because I thought the loss of equilibrium was related to a seizure I had about 3 years ago. I became focused on other possibilities like brain tumors, but my symptons weren't exactly like the symptoms that occur when someone has a tumor or any of the other 'normal' vertigo ailments that are studied in detail. I found this website and it is EXACTLY what I'm feeling. In a way I was relieved, but now I'm worried. I returned from a Las Vegas trip over a week ago, a quick 1.5 hour flight, and I still feel like I'm on a boat. I feel great when I drive or when I'm in the gym. I'm a budget/project planner for a large corporation and I need to be able to concentrate. I'm finding I can't do this. I'm 26 years old and relatively healthy. My husband and I were thinking of starting a family this year. Now I'm worried that if this continues it'll affect me being able to have a healthy pregnancy or be able to handle the stresses that come with parenthood. I'm very disapointed, but I'm trying to stay possitive. I have an appointment with my neurologist in a couple of days. I'm going to take all I've learned from you all to him. I'm hoping I can be cured with physical therapy. I don't want to start any drugs since I'd like to try to start a family. If anyone out there has any information on exercizes that will help, please e-mail them to me. I'd so be indebted. OH, and if there are any religious people out there, pray for me. I really want a healthy baby. :)
Val (valdezjv@att.net)
Albuquerque, NM USA - Friday, February 15, 2002 at 17:15:14 (EST)

Hello all - I've been feeling the exact symptoms as described in this web site and Dr. Hains study. I was a little concerned because I thought the loss of equilibrium was related to a seizure I had about 3 years ago. I became focused on other possibilities like brain tumors, but my symptons weren't exactly like the symptoms that occur when someone has a tumor or any of the other 'normal' vertigo ailments that are studied in detail. I found this website and it is EXACTLY what I'm feeling. In a way I was relieved, but now I'm worried. I returned from a Las Vegas trip over a week ago, a quick 1.5 hour flight, and I still feel like I'm on a boat. I feel great when I drive or when I'm in the gym. I'm a budget/project planner for a large corporation and I need to be able to concentrate. I'm finding I can't do this. I'm 26 years old and relatively healthy. My husband and I were thinking of starting a family this year. Now I'm worried that if this continues it'll affect me being able to have a healthy pregnancy or be able to handle the stresses that come with parenthood. I'm very disapointed, but I'm trying to stay possitive. I have an appointment with my neurologist in a couple of days. I'm going to take all I've learned from you all to him. I'm hoping I can be cured with physical therapy. I don't want to start any drugs since I'd like to try to start a family. If anyone out there has any information on exercizes that will help, please e-mail them to me. I'd so be indebted. OH, and if there are any religious people out there, pray for me. I really want a healthy baby. :)
Val (valdezjv@att.nete)
Albuquerque, NM USA - Friday, February 15, 2002 at 17:13:53 (EST)

R ef Joes Comments I Too Had a Hernia Operation Eversince I Have Suffered Vertigo Jim
JIM (DANKOFingers@aol.com)
USA - Wednesday, February 13, 2002 at 06:21:10 (EST)

I am so glad to have found this forum!! I went on a plane ride 1 month ago to Florida. The trip there wasnt so bad, the pressure built up but my ears never popped. It didnt effect me at all till the plane ride home. I thought it would go away, but after a week I couldnt take it anymore and went to see my doc. He said it was a ear infection and gave me antibiotics and some ear drops. It did not help, only ibuprofin gave me some temprorary relief. I went back and he said it was alergies and gave me allegra, needless to say, it did no good. He tells me it will pass but has no answers. I cannot go to work or leave the house, the dizzyness is so overpowering. It is the most dreadful feeling, I wonder some days if I can go on..... and its only been a month!! I dont know how you all have lived with this. I am 34 and never had any medical problems except for a hernia surgery 4 months ago. I had read that sometimes the anesthesia can bring about problems like this. I have another appt. with the doc and cant wait to bring alot of this info with me. I am worried about the long term effect of taking ibuprofin all the time, it cant be good from what i read, but it is the only thing that takes the pain away. Its only been a month, but I feel better knowing its not just me. You are all strong people, I wish you the best and a cure for the future. Thanks for letting me vent, Joe
Joe (cypcin@yahoo.com)
KS USA - Thursday, February 07, 2002 at 01:41:30 (EST)

Just back from a short cruise to "test drive" the elctronic bracelet my doctor recommended. Forget it!!! I wasn't too bad on the trip. The bracelet-which gives you little electric shocks,and anti-vert pills did help. Also no alcoholic beverages. But, as only you guys will understand-I'm swaying now! It seems to be worsening, especially as I sit to read, write, or do computer. So disappointing. Good luck to the rest of you.
karen (pkmblecker@aol.com)
boca raton, fl USA - Tuesday, January 29, 2002 at 15:01:07 (EST)

Hi everyone, I have had MDDS for three years now. I'm trying to locate a physician (ideally a specialist ) in Ontario, Canada who has experience in dealing with this condition and would be willing to see me. Any information in this regard would be greatly appreciated.
Bernie (bpac.desjardins@sympatico.ca)
Hanmer, On Canada - Wednesday, January 23, 2002 at 13:43:52 (EST)

I'm now taking Klonopin .05 ml every other day. I cut a pill in half and my symptoms are all gone. QUESTION FOR ALL. I HAVEN'T BEEN BACK ON A PLANE SINCE MY PROBLEM GOT WORSE. SHOULD I TAKE MORE KLONOPIN BEFORE AND DURING MY TRIP? TAKE A HIGHER DOSE OF THE MEDICINE? PLEASE HELP ME?
Eddie Goldberger (Edbethtwins@attglobal.net)
G, MD USA - Monday, January 21, 2002 at 23:10:29 (EST)

Hi all I just discovered this wonderful site yesterday after wondering what has been wrong with me for the past 14 years or so and going through all the tests and final diagnoses of "well it must be psychosomatic" etc. I have had several bouts lasting months at a time since the age of 19. I'm currently having one that started during Easter 2001. It's getting better, but I have no doubt it'll be back. It is so good to read of other people's experiences and to know I am not alone, and not insane. Thank you Evan for creating this site, you are my hero! I discovered a wonderful article on motion sickness that mentions MDD by Paul M. Gahlinger MD in Postgraduate Medicine. I guess many of you will already be aware of it, but in case not, here's the link. http://www.postgradmed.com/issues/1999/10_01_99/gahlinger.htm
catherine taylor (catherine.taylor@yahoo.co.uk)
London, UK - Wednesday, January 16, 2002 at 06:41:56 (EST)

I have just gotten rid of MDDS for the 4th time (lasted 2 months this time). Traveled to Mexico in October - went snorkeling, boating - came home with MDDS again. Knew that it would happen but like the water too much. Did physical therapy right away but didn't get too crazed with it because I knew I was traveling again in a month. Went to Hawaii and went sailing and snorkeling - even took a helicopter ride. My 'rocking' actually went away after sailing for about a week. Then it returned but after a month my symptoms(rocking,foggy brain) faded to nothing. I read that you should focus on the horizon when on the water and not look at the 'waves'. Maybe getting 'back on the boat' is an answer for some. Just thought I would throw that idea out to see if anyone else has had that experience. I am just thankful it is gone - till next time. Nan
Nan (puga@bewellnet.com)
kiowa, co USA - Friday, January 11, 2002 at 21:12:37 (EST)

I'm reporting in after comments made over three years ago. I've now had MDDS for almost 3 and a half years, with no let up in symptoms. I've been on Klonopin, Valium, and now trying Ativan (all generic). I've been on combinations of drugs that haven't worked either. I never was able to go back to work because of the rocking/swaying. My husband and I work on how to spread the work about this blasted MDDS, about which so little is known. PLEASE JOIN THE MDD-LIST SITE AND LET US HEAR FROM YOU!
Marilyn Josselyn (mjosselyn2@home.com)
Philadelphia, PA USA - Tuesday, January 08, 2002 at 17:22:24 (EST)

I am interested in setting up a UK support group, with contact just by email initially, to share experiences and medical contacts in the UK Any UK based sufferers please contact me by email at cathnorman@lineone.net
Catherine Norman (CathNorman@Lineone.net)
London, UK - Sunday, January 06, 2002 at 13:45:10 (EST)

My doctor has recommended the electronic bracelet. Anyone had luck with this for the dizziness which follows a cruise. I have no problems with nausea,but the dizziness is awful and lasts for weeks. I've avoided cruising since my last experience, but now would really like to try again.
karen (pkmblecker@aol.com)
Boca Raton, fl USA - Sunday, December 02, 2001 at 15:53:55 (EST)

Captain....You are not alone. I have the same symptoms as you. I thought I had something wrong also but I've had all the tests done and just got my diagnosis. I saw an oto-neurologist who said it was MDDS but that it was probably migraine related. So it's not life threatening, but it's very frustrating!
Heather (hfmailliard@yahoo.com)
USA - Saturday, December 01, 2001 at 22:40:41 (EST)

I have just today been diagnosed with MDDS and thought I'd look it up on the internet. I wish I hadn't now, so many of you have had such awful experiences. I have had about four short bouts, always after boat trips and lasting about a week each time. The thought that these bouts could go on for as long as some of you have experienced is quite depressing. However, I will avoid sea and possibly air travel in future. Good luck to you all.
Liz (liz@seller.co.uk)
Winchester, uk - Thursday, November 29, 2001 at 14:23:37 (EST)

I am a merchant marine captain with a possible MDDS. I still live on my charter boat but fortunately I do not have to rely on an income derived from being a sea captain. It started last year around August and was triggered possibly by an ear infection. It lasted about six months. After that I was fine for nine months of diving and sea going and almost forgot the whole thing when it came back with full force after a diving trip to the Bahamas and some rough seas. I am waiting to take another series of tests. Last year it was all negative. My doctor tells me that it is MDDS. However I have my doubts since the symptomps of unsteadiness, dizziness, brain fog almost disapear when I sit down or lay down and bonine or dramamine seems to help contrary to what I have found about MDDS. Anyone else has the same symptomps?
Captain Z (jbzeb@aol.com)
Miami, FL USA - Tuesday, November 20, 2001 at 17:38:46 (EST)

Gilligan's Island 2 hour Tour to Catalina in 1993 has me still rocking. Despite many medications, hypnosis, sea bands and accpuncture I am still floating. Pat R
Snappy (mtnsnappy@netzero.net)
running springs, ca USA - Friday, November 16, 2001 at 20:34:56 (EST)

I'm now off the Klonopin completely for the past 3 days. I feel fine and am crossing my fingers. I'll let you all know what happens. Eddie Goldberger
Edward M Goldberger (Edbethtwins@home.com)
Gaithersburg, Ma USA - Friday, November 02, 2001 at 23:46:56 (EST)

I am just writing to all fellow suffers to let you know of my experience and hope it helps in some way. This site has certainly helped me. Up to August 1998 I travelled by boat, air etc (including America) from the UK with no problems. In August 1998 I suffered a strange case of double vision plus other strange visual problems and problems with my balance. This all came on suddenly gradually getting worse over 3 days. This started to get better and did so slowly for 3 months. However, I have never properly recovered and was off work for over a year, and my balance and eyesight never got back to normal, and I have just learnt to live with my problems. In September 1999 I flew to America (9 hour flight) and within 2 days I was in a terrible state. My balance was all over the place and I was tilting and rocking to such an extent I found it an effort to do anything (even get out of bed), we ended up going home early. Fortunately I recovered from the flight problems completely within 3-4 weeks. The second time I flew was in June 2000 to Tenerife (4) hours. I was okay until about a week after when I started noticing similar symptoms as before only not any where near as bad and I could cope with them. The symptoms were as before a feeling of falling forward and rocking which was worst when sitting down. Consequently I felt fine in the plane on the way home and when I was in the car. This episode lasted for 5 months and then went away, but still came back again very lightly occassionally, but mainly I was okay. I started to look on the internet and found details of MDDS and thought that they fitted my symptoms but as this is so rare I thought I must be reading something into it and it was a coincidence. We have just come back from a 2 week cruise which was very rough and reached force 9-11 gail for two days. After getting off at the first port 4 days later I felt top heavy again and swaying. Still everyone was a bit like that. However, it is now 10 days since we returned and I am still the same, very top heavy and swaying. On the third day back my whole body started moving and trembling. The Dr. has put me on valium as I was so stressed and in such a state as I knew this time straight away what it was MDDS. This seems to have helped and although I am still tilting when walking and swaying a bit the movement when still and lying down seems to have calmed down a bit (though not perfect by any means). I am not yet sure whether the stress was making it worse or the valium is working. I will keep you posted. I have read various articles about cold sores. I have never had these in my life but I do suffer from virginal thrush. I am wondering if the whole thing started due to IVF which I had 9 months before the whole episode of my double vision and balance problems started. Has anyone else had IVF and sufferred MDDS? Anyway I know my problem with MDDS all started due to the original onset of balance problems. I had all the tests including MRI (nothing) but the only thing that has show up is antibodies in my lumber puncture. The only thing they have not ruled out is MS but so far I have not had any other signs of this., but I do definitely have neurological problems which has for me definitely set off the MDDS. Can anyone relate to this? I would just like to thanky Tory for this web site it has been a great comfort as no one including my doctor has heard of this. Lets hope we all find out what is causing it and get a cure soon. Carolyn from UK
Carolyn Marsden (countrygal_scm@aol.com)
Pontefract, UK - Monday, October 29, 2001 at 16:18:26 (EST)

My 25 year old daughter is currently undergoing tests to discover what her problem is. She has had dizziness & headaches for two months. The only time the dizziness abates is when she is actually moving while a passenger in an automobile. She had recently been on some airplane trips which she got sick on, and had been sleeping on a waterbed for about a month or a little more. Is anyone aware of a connection with orthostatic hypotension. My daughter is being treated for this condition wherein her blood pressure goes down and her pulse goes up when she stands up. I am also wondering if any you have discovered any recent - in the last year - articles in medical journals etc. on this condition. Thanks, Audrey
Audrey (andrusae@cougar.netutah.net)
Spanish Fork, UT USA - Thursday, October 25, 2001 at 18:09:55 (EDT)

Previous clip sounds desperate. True. I am on the verge of finding out what causes this and how to cure it. I hope it is not just "deal with it". After dr appts since june 2001, trust me i was not giving up. However, I was cut short by all the ridiculous doctors I allowed to investigate my problem. Today I got all of my records and am sending them to the House Ear Institute in Los Angeles. If this works for me I will post it. Today is Oct. 23, 2001. Wish me luck as i do you. Patty
PattyBuys (buyspatty@charter.net)
san luis obispo, ca USA - Wednesday, October 24, 2001 at 03:18:55 (EDT)

I have had SUDDEN onset of motion sickness from around mid~June
Patty (alicebpot.charter.net)
San Lui Obispo, ca USA - Wednesday, October 24, 2001 at 03:07:18 (EDT)

Isabel, These helped me... Otolaryngology Cawthorne's Head Exercises Http://www.entnorthwest.com/forpatients/cawthornes.htm
TJ (P-TIVEY@prodigy.net)
USA - Friday, October 19, 2001 at 23:40:39 (EDT)

*****HELP WITH EXERCISES PLEASE***** This is the second time I've suffered from MDD syndrome. Last time (back in 1997) I eventually recovered after doing vestibular rehabilitation exercises. These were sent to me by a fellow sufferer in the USA, since no-one here in the UK had heard of them. I no longer have the details of the exercises and now I'm suffering from MDD again. I would be enormously grateful if anyone out there has any information on exercises which they could send me. I know it's important to start them as quickly as possible after the onset of MDD, so please help if you can. Many thanks.
Isabel Paterson (izzipaterson@aol.com)
Dunfermline, Scotland UK - Tuesday, October 16, 2001 at 12:34:06 (EDT)

I have FMS(fibromyalgia). Didn't know I could add to my already terrible symptoms by going on a cruise. Found a physical therapist who is doing vestibular stress exercises with me. Says her helped another lady with similar MDD. She got better. I pray I will also. Mavis
Mavis Gehl (gehlm_1999@yahoo.com)
Fulda, MN USA - Saturday, October 13, 2001 at 11:50:43 (EDT)

I was diagnosed with this in January after a 6 hour gambling cruise. My symptoms are a constant dizziness, lightheaded feeling, sometimes vomitting. However, I did not want to miss out on the things I enjoy. After vestibular therapy failed & the medicines failed I decided to take my own course of action. EXERCISE & LOTS OF IT !!! I started training to run a marathon. It was brutal at first but the more I ran the better I felt. I have never been a runner before, but this was a way to get control of my life back. I finished my first marathon last weekend and my symptoms are damn near gone and I feel the best I've ever felt. There is hope, I have lived the nightmare. Good Luck to all.
Eric Charles
Detroit, MI USA - Thursday, October 11, 2001 at 18:31:55 (EDT)

It was my freshman year of high scholl. I had gotten my vaccinations, and then I started to get very sick. I couldn't keep anything down, I was throwing up every 5 minutes if not more and I was so dizzy I couldn't stand with out someone holding me up.Of course my mom's first thought was "you're making it all up, or your pregant. I knew niether one was true. We went to the doctor's so many times i was on a first name basis with all the staff.It was a military hospital so of course they thought i was making it up too. they did'nt know what to tell me. they sent me to specialists, and ran so many tests on me that i started feeling like their lab rat. they did brain scans mri's and cat scans, and even sent me to therepist, thinking it was a mental disorder. it was close to thanksgiving of my Junior year before they sent me to an ent. He immeditly knew what it was. He told me no SALT, which for a teenager is horrible to walk away from. Then I started getting heart flutters, whether that is related i don't know.My heart was about twice as fast as normal when i was sitting still, so they said no unnessisary strain on my heart,which meant no more mosh pit at the punk rock concerts for me. they also told me no more caffinee, i hate cokes anyways. The doctors put me an meclizine for the dizzines, and i was already taking valuim for my TMJ. the antivert made me sleep all the time and when i wasn't sleeping i had a hang over from the meds. My mom hated to see me like that.I wasn't able to go to school for 4 months at the end of my sophomore year. Junoir year started out ok, But then I got so sick that i literally moved my bedroom into my bathroom. I didn't go to school at all my junior year, i missed the prom and everything. close to the end of the year i got the brilliant idea to completly turn away from mundane medicine. I was riding in the car with my mom and we saw a herbal med. store, we figured why not we've tried everyhting else the no salt diet wasn't helping. we went in a the herbalist gave my two pills, one to controll my blood sugur (hypoglocimmia is a common side effect), and another pill to shrink my pituitary gland which in the words of my doc was grosly enlarged. I started taking the pills and before the end of the week I was 110% better. I even got to go to a theme park a ride the roller coasters, instead of huvering near the bathroom or tashcans just in case. I'm 18 years old now and i haven't had an episode in a while (knock on wood). It took the docs three and a half years to tell me what was wrong and then they couldn't tell me what to expcet with this problem. the herbalist knew it all. Good luck to you all!!!! I know how you all feel. Jennifer
Jennnifer Redmond (Pumpkin29445@yahoo.com)
Goose creek, sc USA - Thursday, October 11, 2001 at 11:35:17 (EDT)

Hi Edward, I am one of the few that take Klonopin. After finally finding an ENT that understood MDDS I started taking it. I started with 0.25mgs three times a day then went to 0.5mgs three times a day. I have been on it for several years and it has enabled me to deal with the horrible wobbling, etc. Most people are concerned about it't addictive qualities but my doctor said as long as I did not increase it, it would not hurt me. Since you are going from more to less you are lucky. I can't promise that it is a cure and I still have bad days, (especially during pressure changes in the weather)but I don't know what I would do if I had to give it up because it gave me a new lease on life. I do hope it continues to help you as much as you say, I know I will keep taking it as long as I can. I have been taking it for several years now. I do wish you well and hope you stay free of the horrible rocking sensations. Please keep us posted. Take care, Ann
Ann
USA - Monday, October 08, 2001 at 12:28:13 (EDT)

I started taking klonopin 4 weeks ago and my rocking sensation has dissapeared completely. My doctor started me on .5 mg in the am and .5 in the pm. I was on this dose for 2 weeks and then went down to .25/.25 for a week. Now I'm taking .25 at lunchtime and have not felt a symptom. Anyone try this approach? If so, has my rocking gone away or is it the medicine.
Edward M Goldberger (Edbethtwins@home.com)
Gaithersburg, MD USA - Sunday, October 07, 2001 at 22:44:43 (EDT)

I keep coming back to this site hoping there will be some great new miraculous ideas! Unfortunately I don't have any. My physician (internal med)has heard of this syndrome & tells me I will just have to wait it out. At least I am grateful that he did not want to try "musical drugs" wih me. That would really have done me in. (My checkup & labs are all normal). I have a history of low blood sugar & low blood pressure (not now I'm told); some dizziness in high school, nothing like this though. I'm rocking away since my 7 day cruise (I returned 9/6/01 from Alaska's Inside Passage). Symptoms same as I read here: rocking, rocking, tilting, swaying, some fullness/tinnitus in ears. Mild headache. What a trip. I am currently trying acupuncture, yoga (helps sometimes), & have an appt. with a research scientist who left traditional medicine to study herbology - is that the right word? Going to keep a diary to try to notice patterns with this. The balance rehab exercises I found on the web also help a little bit. Yes, I'm fine when I drive a car and also when I ride a horse! I really want to hear from someone who has been helped by physical therapy! Please describe helpful exercises, etc.!!
Karen (louiea@earthlink.net)
San Diego, CA USA - Thursday, October 04, 2001 at 22:05:24 (EDT)

Hello! I am 37 years old. I am having dizziness,imbalance,mild tinnitus(Left Ear),& Floating Sensation for the past 6 years. Each year, my symptoms get worse. I am taking librium (Valium Category)(10mg) for the past 3 years. In 1996, dizziness started after having flu like symptoms. Then I was admitted in the hospital took all the tests MRI,MRA,ENG,Lumper puncture,MS,Rotary Chair, and so many blood tests. All of the test results were NORMAL. I took several medicines: Serc,Stugeron, Stemitil,Hismanal,Xanax ,Tegretol, prozac& Zoloft. None of them seems to control or stop my dizziness. Most of them really made me drowsy all the time. In 1998 , I saw 3 dizziness specialists who all suggested to see a neurosurgeon to have a surgery (ie) cutting the vestibular nerve on the affected side. This surgery may or may not cure 100%. So I did not go for it. I manage to live with librium but it does not help much. I went for vestibular rehabilitation but no luck. I would appreciate if any help or suggestion to improve my conditions. Please pray for me. Thank you all Pad
R.Pad (ravi_1999_2000@yahoo.com)
Raleigh, NC USA - Tuesday, September 25, 2001 at 18:09:18 (EDT)

Michael, Labinthritis is what my GP believes my diagnosis to be, and I do have low blood pressure. He has been real receptive to the articles of Dr. Hain and Dr. Murphy and is treating me with the medications used in their studies. I am currently taking Elavil and Vioxx and I have had great improvement while on this combination. Vioxx has raised my blood pressure to more the norm... but my husband hates me being on it with all the scare about it lately. Yet, I was to the point of being desperate when I started it. I hope you find some help here. TJ
TJ (P-TIVEY@prodigy.net)
Huntsville, AL USA - Saturday, September 08, 2001 at 17:36:01 (EDT)

I just like to ask anyone who's suffering from LABRINTHITIS, if they also suffer from low blood pressure. I've been suffering labrinthitis on and off for the last two or three years and know other people who also suffer but no one seems to have an explanation for it. Intuitively I feel that it could be something to do with low blood pressure. Any information greatly appreciated - please leave messages on this board!
Michael
London, UK - Saturday, September 08, 2001 at 15:50:49 (EDT)

I'm a newcommer to this board! I've been having vertigo attacks for the past 20 years. At first - they only lasted for several days. Within the several days, there were 3 or 4 vertigo episodes each lasting 10 to 20 minutes. Currently, my episodes are occurring every weel lasting from 20 to 40 minutes. I am seeing a ENT who specializes in vertigo. I just completed 4 month of vestidular rehabilitation at Lenox Hill Hospital in NYC.Not all physical therapists are trained in the practice. Typically the exercises consist of movements that initially make the vertigo worse and balance tasks that are quite difficult. By doing these repetitively, the balance system in the brain learns to function better. Common exercises include moving the eyes from side to side, rotating the head from side to side, rotating the head from side to side while walking down a corridor, and things like this. THis therapy did not work. I had several ENG test done to measure the inner ear nerve. I was told that my left ear nerve was not working due to a prior illness or accident. I have been on all of the medications including water pills. There are no magic bullets. Surgery is an option but is not 100%.
tony
ny, ny USA - Wednesday, September 05, 2001 at 00:20:37 (EDT)

Hi everyone! To answer your questions about the blinders. Most of the time I just used my hands when I was getting dizzy in small spaces. At one time I did put some playing cards on each side of my glass's frames which gave the same effect. On the ferry, I just always made sure I had on my distance glasses and not the blended bifocals. I also avoided sitting on the side of the ferry where I could see water in my peripheral vision. When we played cards, ate, etc., I just insisted on sitting at a table in the center of the room far from the windows or I sat with my back to the water. When I wanted to view the boat ride, I did it looking straight ahead, usually at the front of the boat. Again, this is all based on my theories, but it seems to help me, and I can only hope it works for some of you. I know I was about to go mad after 5 months of MDD. I cannot imagine going years like many of you have written. Good luck.
Doug (trainfool@aol.com)
Colorado Springs, CO USA - Sunday, September 02, 2001 at 03:40:50 (EDT)

I am so glad I found this site. It is good to know that I am not crazy that I really do have all the symptoms that all of you have described. I have had this for 10 years. Have never taken the medication because I don't like medicines. My ENT diagnosed me 3 years ago and I am thinking now of going back to try the medicine he prescribed, low dose valium. My symptoms seem to be aggrivated by stress and constant motion of driving, I drive alot, so when I drive i am ok, but when I stop the car I rock in my head all over again. Talking to people is wierd too, because the dizzy rocking feeling is so distracting!!!! I guess we will continue to cope.
S. Collins (sspalmblad@aol.com)
USA - Saturday, September 01, 2001 at 15:40:54 (EDT)

I have had a few comments on the website...this I hope is the last. I can only hope....I ran into my chiropractor at an event and explained what was happening...He asked me to come see him. He said he wanted to eliminate any possibility of a neck injury. (I did have a fall before my boat ride...very very small deal and no one thought anything of it...chiropractor is still not sure there is any correlation) He did alot of therapy and I walked out a total new person. I do not know how to explain what I felt, other than I was not feeling the depression and disorientation in my head. I also did not feel the "swaying". Now I need to say that I then went on to my physical therapist who did some pretty strenuous tests and exercises...I continue to do them and will do so along with the chiropractor visits, but the physical therapy stuff made me dizzy...but it is a different dizzy than I was experiencing before. It is a funny sensation of not having total balance in certain circumstances, not an overwhelming feeling of someone having control over my body and making me sway and my head heavy. I hope I can come back to you all and say 100% for sure....but right now my bet is that this chiropractic visit has gotten me on my way out of this misery.
Kathy Covey (kathyc@bmacww.org)
Walla Walla, WA USA - Saturday, September 01, 2001 at 00:36:52 (EDT)

I want to thank Doug for his e-mail and suggestion about the blinders. I definitely think that eyesite has something to do with this. I no longer enjoy looking at the water, and anything that shimmers and moves makes me dizzy. It's probably not a coincidence that this disorder affects people mostly over 40 - that's about the time most people have to switch to bi-focals or reading glasses for near vision. When I experienced my last major flare up with MDD, I was wearing contacts for distance and using reading glasses for near vision - a system that was not working well for me. In fact, I believe the aggravation of hunting for the reading glasses, taking them off and on, etc was just adding to the stress I was feeling and in turn making the rocking sensations worse. I finally switched to bi-focal contact lenses (my optometrist said that I was a perfect candidate for them given the shape of my cornea and the type of correction that I needed). Anyway, the first week I had them I did experience some disorientation but it cleared up quickly. The contacts have been a blessing. My dizziness did not entirely disappear but it did subside to a much lower level. There is no distortion of vision with the contacts like there is with glasses. I understand that not everyone can wear the contacts but they certainly helped me. Laura
Laura (homesale1@aol.com)
USA - Thursday, August 30, 2001 at 11:05:31 (EDT)

I have been involved with vestibular therapy for a week now...no such luck, however the doc said it would be 4 weeks before I would even notice a change. I am going to schedule an appointment with a neurologist soon just to get the ball rolling. I also have had advice from my chiropractor that I should check out any neck problem....I did have a fall preceeding all this.....I will do so tomorrow. After all that I think my course of treatment is going to be a neurologist, suggestion of hormonal therapy (which I hear so much about from all of you, and ruling out of anything else this might be. I HATE this feeling and I am not willing to live with it for as many years as I hear some of you have (not that I think I know how to do that....just that I am damn mad somebody doesn't know what to do). Thanks for being there everybody. I will keep you posted.
Kathy Covey (kathyc@bmacww.org)
Walla Walla, WA USA - Thursday, August 30, 2001 at 00:32:59 (EDT)

Hello fellow rockers! I cannot believe that so many people are suffering from my same symptoms. Like many of you, my story began with a 3 day cruise back in 1995. When I got off the ship, my rocking never ended! Everyone told me it was "sealegs" and would go away after a week or so. After 4 months my ENT decided that inserting tubes in my ears to relieve a pressure imbalance may possibly help. About a week after the procedure the symptoms did begin to subside, though we now know it was just coincidental. Since then I have had 3 additional episodes. One that lasted 7 months which was brought on by a 2-hour whale watch cruise in New England. The next one was brought about by some amusement park rides I went on at Disney World. I decided that I would just keep my feet firmly planted on the ground and everything would be ok. Well, not so! At the beginning of this year I was under some major stress (death of a sibling, separating from husband of 22 hrs., plus my teenager getting in legal trouble, just to name a few!). At the end of February I had surgery. About 7 days after the surgery I began to feel the rocking begin. I was horrified! How could this be? I now know that stress can start up an attack. I have been through every test you all have had: MRI, ENG and on similar meds such as meclizine and dyazide, which did nothing. I have developed depression, was on Prozac for a while, now I'm on Wellbrutrin SR. My inability to concentrate is driving me crazy! My ENT has just ordered another MRI and ENG since it's been 5 years since the first set of tests. He's ruling out Multiple Sclerosis (which my sister has). I think he's wasting his time. I will print out all the info from this site about MDDS. He has not mentioned that this might be a condition he's looking for. Back in 1997 a doc at the Cleveland Clinic mentioned he though I could have this MDDS but told me no cure or treatment,so I didn't go back to him. Well I'm going on too long, but I just wanted to say that it is such a relief to know that others suffer from my symptoms - I thought I was going crazy! I look forward to any feedback. Thanks!
Regina (Sillasenhandzel@hotmail.com)
Cleveland, OH USA - Thursday, August 30, 2001 at 00:07:45 (EDT)

Hi Doug, Ann B. and all, At the risk of repeating myself again and again, I am glad to read your ideas about the eyes having alot to do with this mess we all seem to have. My ENT did tell me that my brain was sending signals to my eyes and thence to my feet, so I feel you have got something there for sure. I do notice playing computer games can make me dizzy but I do get hooked every now and then. I agree that taking medicine is not the entire answer but I was so desperate I started on Klonopin. It helped so much I thought I had found the answer to my prayers. The problem is after taking it for so long, it ceases to help as much and I cannot take a larger dose. It is still better than falling on my face. I would truly love to find something and if blinkers will help, so be it. Does anyone know anyone who has a mule or horse?, Maybe we can rig something up. I know it's not funny but if I didn't laugh at myself once in a while I would go crazy. Anyway, thanks for the information. When I compare notes we do have something there that is similar if only we could find the answers. Thanks, everyone, AnnC.
Ann
USA - Tuesday, August 28, 2001 at 20:01:25 (EDT)

Doug, I hope this is not a joke. If you could see me walking around wearing old glasses frames with index cards attached to to side, you would die laughing. Most everyone on this site would do anything to get rid of this everlasting boat ride. So, tell us exactly what you used for blinders, when you wore them, etc. This actually makes a little bit of sense to me as I have felt that this was somehow a mechanical rather than a chemical thing. And I am extremely reluctant to use chemicals to "cure" it since I have witnessed many severe reactions to all the wonderful new medications. Thanks, Ann B.
Ann B (annbrant@yahoo.com)
NC USA - Tuesday, August 28, 2001 at 17:51:02 (EDT)

Hi, I had MDD in 1997 for about 5 months. I acquired it after being on a houseboat on Lake Powell for 4 days. My symptoms were dizziness and feeling like I was still on the boat while on land. Driving in the car was my only relief. The more I stressed about it, because it did not go away, the worse it got. Then one day, it just disappeared. A later trip to WDW and the Living Seas building brought back the MDD for about one week! As many of you know, this is just a big aquarium. I then decided that perhaps all those tests on my inner ear that I had during my episode with MDD may not have been aimed at the right target. Has anyone considered that MDD may be caused because your eyes are seeing things move for a long period of time? Maybe it is the motion of the water, not the boat!? Then, when you get off and leave the water, your eyes and brain continue sending the wrong signals? If you have similar symptoms to what I just described, especially if you find relief driving or riding in a car, please try this. While in a room that seems to be moving, put your hands to the side of your face or head and block your side vision, or put up sheets of paper to the side of your head. Use them like blinders. Does this relieve your sensation of the room moving? It is worth a try. This focuses your vision straight ahead, like tunnel vision. I used this method, plus got rid of my blended bifocals while traveling on the Alaska state ferry system for 5 days in 2001. In 1997, my doctor told me to never step foot on a boat again, but avoiding using my side vision seems to have allowed me to enjoy the Inside Passage with my family this summer. After the voyage, I did have some dizzy sensations on land in small areas like a bathroom or a small shop, but found the "Blinder" method to relieve that. I hope this works for some of you as I understand what you are going through. Good Luck!
Doug (Trainfool@aol.com)
Colorado Springs, CO USA - Sunday, August 26, 2001 at 03:02:43 (EDT)

I just want to add that I've noticed many similarities between so many letters and my situation. I also experience migraine auras but without the headache pain. It really makes one think there must be a connection between this disorder and migraines. I have a very high stress job and that doesn't help. I love my job but I now feel like MDDS is like a stress barometer. I don't like the idea of taking medication, has anyone had any luck with accupuncture? Laura
Laura (homesale1@aol.com)
USA - Saturday, August 25, 2001 at 12:00:30 (EDT)

I have had so-called mdd for 18 months at this point. A 'Neurotologist' in Winnipeg recommended that I: 1. skating every day on either ice skates or roller blades (inline skates), 2. swimming, 3. standing on 9" cushions, 3 times a day for 10 minutes each time. Please advise if you have had any success with any of these 3 exercises. Many thanks. Colin -- coljoc@mts.net
colin young (coljoc@mts.net)
winnipeg, canada - Wednesday, August 22, 2001 at 12:58:22 (EDT)

I've suffered from MDD since I took a Caribbean cruise in August, 99. Like most of you I was fine on the trip but couldn't get my land legs back. I waited 6 weeks before seeing my doctor. He prescribed Antivert which did nothing except make me tired. He detected a heart murmur and an uneven pulse so he sent me to a cardiologist. After lots of tests the cardiologist put me on Toprol to slow my pulse and declared my heart about as fit as it's ever going to be without a valve repair. He did not feel that my heart problems have anything to do with the dizziness (which never abated)and sent me to an ENT. The ENT ran tests and diagnosed MDD. He prescribed scopolomine transderm patches and said that if I didn't get better that I could try rehabilitative exercises. The patches didn't seem to do anything and I only wore them for about 2 weeks. Interestingly, my dizziness disappeared slowly within a month - I don't know if the patches helped or if it was just a coincidence. At that point, I had suffered with symptoms for about 4 months. I managed to stay symptom free for almost a year until a combination of things occurred. My father was suffering from a terminal illness and so I began power walking as a way to deal with the stress. After walking a few days, I noticed some dizziness but it was faint and would leave quickly. Then after about 10 days of walking, MDD arrived full blown. The symptoms were really bad for about 3 months and then settled to a tolerable level although I'm not completely free of them. I've learned to avoid certain activities such as playing video games, or any activity that contains rapid, repetitive movements. I have tried the patches again but they don't help. Lack of sleep or stress always make things worse. The reason I'm writing, is most people report that walking makes them better and while I can walk at a normal rate, fast walking is a problem. I would like to exercise but I have been afraid that it will make things worse. Driving is great - I feel normal when I drive.
Laura (homesale1)
FL USA - Thursday, August 16, 2001 at 12:54:27 (EDT)

Hi to everyone! I have had my vestibular problem for the past 29 years. After an appendectomy I awoke with dizziness, swaying, etc, etc. I was sent home with no diagnosis. Over the next 20 years I saw numerous doctors to no avail. I was diagnosed with a vestibular injury 9 years ago, however I still have not had it explained to me in terms that I understand. Over the years I have had periods of relief, however, I have found that I have to be very careful in my day to day living as stress is my worst enemy. (of course I am a high stress person). Anyone want to talk? Thanks
Grace (reesgl@hotmail.com)
Kamloops, B.C., Canada - Saturday, August 11, 2001 at 11:32:51 (EDT)

Hi to everyone! I have had my vestibular problem for the past 29 years. After an appendectomy I awoke with dizziness, swaying, etc, etc. I was sent home with no diagnosis. Over the next 20 years I saw numerous doctors to no avail. I was diagnosed with a vestibular injury 9 years ago, however I still have not had it explained to me in terms that I understand. Over the years I have had periods of relief, however, I have found that I have to be very careful in my day to day living as stress is my worst enemy. (of course I am a high stress person). Anyone want to talk? Thanks
Grace (reesgl@hotmail,com)
Kamloops, B.C., Canada - Saturday, August 11, 2001 at 11:31:36 (EDT)

I have been "swaying" for about 40 days now. Went to the doctor following a long plane ride and a short boat trip, complaining of this dizziness. At first I thought I was just taking longer to get my "legs" back--- he prescribed Guifenesin and eventually (after my insistence that it was an infection in my ear....an antibiotic) That seemed to work for a few days and then it came back full blown! He referred me to an audiologist who did massive tests, determined nothing wrong with my ears and said that he felt I had this MDD....that will be what he reports to my doctor. Have had a MRI as well this week. I am sick and tired (literally on that one) of feeling "out of body" and swaying constantly...have trouble concentrating and while I have never been depressed or had any medical problems I am beginning to feel this getting to me mentally. I have contacted a local physical therapist who is trained in vestibular therapy...and he said he has heard of this syndrome. I will let you all know how this goes. What I am wondering is for folks who have had this many years: is it constant or does it come and go? For those who had it and now it is gone, how long have you been sway-free?
Kathy Covey (kathyc@bmacww.org)
Walla Walla, WA USA - Friday, August 10, 2001 at 19:21:53 (EDT)

I have been suffering for a year now from what several Atlanta neurologists believe to be a vestibular disorder. The closest any one can come to a diagnosis is "resembling incomplete MDDS" -- whatever that means. I never experience any rocking sensations, but rather a heaviness throughout my body -- particularly the legs -- accompanied by a sense that my equilibrium has been thrown off to the point where I sense movement in space and have trouble doing simple, stationary things. I can run, swim, play tennis, drive a car and walk with minimal symptoms. But, when I am symptomatic, little tasks like sorting mail, fixing lunch, folding laundry, playing guitar, wiping down a counter or making a bed become exhausting and very unsettling. I have had stretches of up to two weeks where I experience little to no symptoms -- chiefly after I stopped vestibular rehabiliation and began enjoying life again. I don't know if it's coincidental, but shortly after returning for therapy -- this time in the form of elecrical stimulation of the inner ear ("E-Stem") -- my symtpoms resurfaced. My doctor here in Atlanta suggested I contact Dr. Timothy Haine for further insights and perhaps a second opinion. Does he have a web address at which I can reach him? If any one has info. please pass it on to: P7aul@aol.com Thank you.
Paul (P7aul@aol.com)
USA - Tuesday, August 07, 2001 at 20:01:17 (EDT)

I have had tinnitus in my left ear off and on for over 6 months and I have numbness on the left side of my face including my left eye, left tongue, left jaw and left forehead. I had some pain in my left upper jaw so I saw the dentist who said my teath where fine but refered me to an Oral Surgeon. Over the past week the symptoms have progressed so I went to see my GP because I couldn't get an earlier appointment with the Oral guy. My doctor said the dentist was wrong and I should see a Neurologist and get a CT done of the Trigenial Nerve. He thinks two possibilities are something pressing on the nerve or some kind of demyelination. Any suggestions?
Karl (themunzels@bigpond.com.au)
Canberra, AC Australia - Friday, August 03, 2001 at 06:57:12 (EDT)

I have been having trouble with dizziness and a 50% hearing loss, and everyone kept misdiagnosing me and saying its all in my head. Come to find out (finally) its vertigo and labrinthitis, The infection is also in the last ear bone. is the hearing loss permanent? A specialist said its nerve damage. Maybe from this infection going on so long? thanks
Carol (Hog517@cox-internet.com)
franklin, la USA - Friday, July 27, 2001 at 17:10:10 (EDT)

Hi Nadia, I have tinnitus, which is a ringing in the ears. My only advice would be for you to see a good ENT, preferably one who specializes in balance problems. I hope it is only from the pressure change while flying. Good luck to you and let us know how you do. Ann C.
Ann C.
USA - Wednesday, July 25, 2001 at 18:31:45 (EDT)

TO ALL NEW PEOPLE THAT RECENTLY POSTED>>>>>> People do not check this area out very much...I suggest you join the e-mail list on this site, and then you will be in touch with a lot of people daily that can offer help and support.... You just need to subscribe and you will instantly get e-mails from people on this list discussing MDDS and other related feelings...GOOD LUCK REDCAT
redcat (decafcat@hotmail.com)
USA - Wednesday, July 25, 2001 at 08:51:19 (EDT)

After flying in to New York on a non-stop 5 hour flight from California, a few days later I have developed a loud hissing sound in my head (ears). I awoke with it in the middle of the night. And for a week and half now I still have it. Every now and then it lets up for a few hours. Some friends suggested that this is normal after flying in a plane. But I have to wonder why it is lasting so long. I would appreciate any comments or suggestions. My heartfelt thanks!
Nadia (Nadia@catskill.net)
USA - Tuesday, July 24, 2001 at 14:34:32 (EDT)

Please see this string of messages. It's very interesting to read.... http://66.51.124.237/~revelation/ubb/Forum4/HTML/000133.html
Toni
CT USA - Saturday, July 21, 2001 at 15:12:07 (EDT)

hang in there
colin young (coljoc@mts.net)
winnipeg, mb canada - Wednesday, July 18, 2001 at 11:59:26 (EDT)

I found this site a few weeks ago and I can't begin to tell you how much it has meant to me! First, I would encourage everyone to continue to contribute to this site, particularly if you are a newcomer or have some new information to add. I have read everything on it! The beauty of it is that the comments stay here for future use. I also joined the list-serve (mdd-list@etete.com), and it is helpful to see the ongoing comments and the support there. I waited to add my story until I had followed some of your advice and visited with the doctor again. My story is much like most. Went on 7-day cruise to Caribbean in Jan 2001 and I'm still on the boat rockin' & rollin', swinging & swaying, lurching, jerking, etc. I flew both ways & went on a submarine trip, & I think the pressure changes had a lot to do with this. I find that I have many things in common with you all; however, I'm older than most (65) and can't have very many hormones involved. I did work in a high school (teacher, then counselor) & I developed an allergy to the building. Retired last year. To travel - ha! I have had an ongoing sinus condition (rt. side only) for 4 yrs. now. Also have degenerated disks in my neck. Actually, I've always been an active, healthy person with an excellent sense of balance who always adapted to ships & boats well - never any seasickness. Appears I've adapted too well. Thought this would just go away. Went to the Dr. after 4 mo. & went through the usual routine. However, he knew what I was talking about! (I took Dr. Hain's printout just in case). He gave me the Cawthorne exercises, did the testing, & we're working on the allergies & sinuses now. I "extended" the exercises because they seemed too easy, & he approved. We agree to go the conservative route for now. No meds, but I have added ginger & ginko to my morning vitamin & supplements routine. I think they help! I feel that I'm lucky since I seem to have a classic case without other complications, I don't have to go to work each day (I do care for my 91 yr.-old mother), and so far, I've avoided any depression. Plus, I'm very lucky to have such a good Dr.(in a small town, too). Would like to know if there are any success stories, what does travel do to you, & what about swimming? This is too long! So I'll stop for now. Would love to hear from youall. (My e-mail will be different on the list serve -- it's a computer thing you know.) Best wishes! Ann B.
Ann B. (annbrant@yahoo.com)
NC USA - Thursday, June 21, 2001 at 21:31:32 (EDT)

Well I'm back friends. Guess what? I just got the results of the MRI. Now how did I know they were going to be negative. Now the doc wants to send me to see (guess what) a neurologist. I don't think I want to go there. What do you folks think. I'm headed for a 10 day trip to New Mexico with some friends Saturday. I'm going and wearing the patches and having a great time. I'll worry about all of this later unless some of you have a suggestion for me. I still have 5 days before I leave.
Nancy (nanbedan@transport.com)
Bend, OR USA - Tuesday, June 12, 2001 at 22:15:20 (EDT)

Hello to the Dizzy Clan. I just wish to post that I had the dizzy, nausea, loss of memory, blurry vision and all the rest of this crap before I ever went on a trip. From what I read, MDDS has to do with the return from a trip.I will post what is going on with me and maybe someone can help. I have been wearing hearing aids since the age of 30(now 60). I went to the family doctor and he recommended an Ear nose and throat specialist, or MRI, or a neurologist. I have been through the first two of these options awaiting the results of the MRI. I have autoimmune thyoiditis associated with my hypothyroidism. I've been on thyroid medications for many years. When the doctor came back with the blood test results that my thyroid was really off, I thanked God and figured that was what was causing the problem. No, it wasn't. Within the last several months my hearing has really gone to the bottom of the chart in both ears equally. The ENT specialist said I had labrinthitis and would be on medication forever.I'm on the scopolamine patches and can't be without them. I've been on them for 3-4 months. They seem to not work so good anymore. I have some bouts of dizzines with them on, but not intolerable. The meclizine and such does not work. My inner ears were progresively deteriorating.Now I have the shakes with this whole mess too. If the MRI results are negative, the doc wants to put me on valuim. I do not want to do this. Any suggestion or help would be greatly appreciated. I also learned some things from wearing the patches. Do not wash you hair with the patch on. The chemicals can get into your eyes and they will dilate. Also don't touch it without washing your right afterwards. I also found I was allergic to the adhesive in the patch. A suggestion was to get a sample of a nasal spray that has steriods and spray the area before attaching the patch. I've just started doing this and so far, so good. The patch will not work in any area other than behind the ear. Like all of you, I just want a solution to the problem, not bandaids. Feel free to e-mail me. I'd like to copy this whole website and give it to my doctor, but it is a little too large. Good luck to all of you for I feel what you do. Nancy nanbedan@teleport.com
Nancy (Nanbedan@teleport.com)
Bend, OR USA - Tuesday, June 12, 2001 at 15:16:05 (EDT)

I take a lot of meds for Bi Polar...jumpy legs, vertigo, tingling and stinging sensations in my stomach and muscles around my lungs, blurry vision blurry, headaches on left side of head when I eat parmasiana cheese....migraines???? Side effects to name a few. The stinging and tingling sensations in my muscles around my stomach and lungs mystify me the most along with the left sided headaches. 44 and still not crazy in 5 years now, keeping the stress way down. Does anyone have any comments!!! Thanks.
L Celentano (celentano@aol.com)
USA - Saturday, June 09, 2001 at 01:27:01 (EDT)

further to my last comment i must amend the spelling - CIGUATERA- is the correct spelling look up on web site you will be amazed at symptoms
brad baxter (awardpl@ozemail.com.au)
sydney, australia - Monday, June 04, 2001 at 05:07:00 (EDT)

M.D.D???????? I WAS DIAGNOSED WITH M.D.D AFTER ALL SORTS OF TESTS INC BRAIN SCANS ETC I HAVE SUFFERED WITH THE WOBBLES NEARLY 4 YEARS.AS WELL AS OTHER SYMPTOMS LIKE PINS AND NEEDLES THE LIST GOES ON. FINALLY WENT TO A DOCTOR WHO SAID HE DIDN'T THINK IT WAS MDD BUT SYMPTONS WERE SIMILAR I FINALLY WAS TOLD BY A FRIEND THAT I COULD HAVE CICAGUATERA POISONING WHICH YOU GET FROM EATING REEF FISH, SOUNDED BIZARRE BUT BEING AS DESPERATE AS I WAS I WAS WILLING TO BELIEVE ANYTHING. CICAGUATERA STAYS WITH YOU AS LONG AS YOU CONSUME ANY TYPE OF SEAFOOD AFTER CONTRACTING THE ORIGINAL TOXIN. GUESS WHAT! I STOPPED EATING ALL TYPES OF SEAFOOD AND ALL MY SYMPTOMS HAVE DISAPPEARED WHO KNOWS SOME OTHERS OF YOU MAY BE THE SAME AS ME. ITS WORTH A TRY. CONTACT ME ON MY E-MAIL IF I CAN BE OF ANY FURTHER ASSISTANCE TO ANYONE REGARDS BRAD BAXTER
brad baxter (awardpl@ozemail.com.au)
sydney, australia - Sunday, June 03, 2001 at 03:53:09 (EDT)

Joe Gibbens and Melissa No one really checks the forums anymore here. It's best to subscribe yourself to the e-mail list to get your questions answered. There we share lots of stuff and you can tell us what you've been going through as well. Just send an e-mail to mdd-list-request@etete.com (exactly as I typed it) and put the word subscribe in the subject line. You will start to get e-mails and it will seem that they are just random but that is b/c it is an ongoing dialogue through e-mail so just jump in and tell us your story. Hope to see you there. Toni
Toni
USA - Wednesday, May 30, 2001 at 14:34:30 (EDT)

Hi all, I HAVE BEEN SUFFERING FROM DIZZYNESS AND VERTIGO FOR ABOUT 6 MONTHS. This condition came so fast I thought I was going stark raving mad, several doctors were baffled. Finally An Ear, Nose, and Throut specialist told me I Had Whats called Labrinthitis; something about tiny crystal like structures breaking off in my inner ear and floating about! Has anyone heard about this, after reading a few of the letter posted here I'm starting to think MDD is a possability. Please Help!!! Joe
Joe Gibbens (jgibben@comp.uark.edu)
Fayetteville, ar USA - Friday, May 25, 2001 at 05:28:14 (EDT)

Hello there. After reading these comments I feel like I just met lost family members. Nobody knows how frustrating and dehabilitating MDD is until you try it! I have some questions: 1) how many of you got this affliction after a cruise to Bahamas and Caribbean? 2) what cruise line -- I heard that there were a lot of cases from Carnival cruises. 3) when did you get it? 4) does anyone have numbness in feet, even after dizzyness went away? My case started in 1994 after a Carnival Cruise to Bahamas and Caribbean. I was sooo sick for a year -- feeling at high seas, constant nausea, unable to stand in lines, etc. Went to a bunch of doctors, who put me on meclizine, allergy stuff, cleaned my ears, etc. You all know the story -- including how if you talk about being dizzy, people act like your complaining about a paper cut. I've found the following to be helpful: gingko biloba, spicy foods like jalepenos, and ginger. Sometimes, a plane trip works wonders -- or just living in a different locale. It was horrible in the Pacific Northwest, better in new york and italy. But it still kicks up sometimes...you know how this syndrome is. I hope all of you are hanging in there, i think it does fade with time; relapses have never been as severe or long as that first horrid year. Anyway, for those who got this on cruises, pls let me know: where, when and what line -- I'm looking for commonalities. Best, melissa
Melissa (mlrossi5e@aol.com)
on the road, USA - Friday, May 18, 2001 at 02:12:14 (EDT)

Toni Sorry guess I was not looking hard enough on the brain talk page..it does have quite a bit of info on MDDS...You are right...sorry...Les
redcat (adlerleslie@hotmail.com)
USA - Wednesday, May 09, 2001 at 18:05:03 (EDT)

Toni I did see the MDDS thing on braintalk.org but there was not much there. I also tried to register with braintalk so that I could put info on there and ask questions but could not figure out how to do it...Can you...Redcat
redcat (adlerleslie@hotmail.com)
baltimore, USA - Tuesday, May 08, 2001 at 15:01:10 (EDT)

There is a forum for Mal De Debarquement at the following website... www.braintalk.org Check it out.
Toni
CT USA - Monday, May 07, 2001 at 13:04:15 (EDT)

This is a forum for Mal De Debarquement at the following website... www.braintalk.org Check it out.
Toni
CT USA - Monday, May 07, 2001 at 13:03:52 (EDT)

Hello out there - I just found this website, thanks to my brother. I have not been diagnosed with anythink yet, but this sound like me. Now I know that I am not crazy. I am a 45 year old female. I have never been on a cruise, but have been on plenty of boats. I never got seasick until my daughter was born almost 6 years ago. I am a scubadiver, but haven't been on a trip for a year. I did take a plane trip in October, and my symptoms started slowly sometime after that. Beginning early November I was dizzy (for lack of a better word) constantly. I feel sometomes like gerbils are running around in my head. My balance is only minimally affected. I can get nauseaus when it is really bad. I am affected by weather changes and noise including my own voice. I am worse lying on my side rather than on my back. I am OK in the front seat of cars, but not so riding in the back. I have also notices that I am affected by the weather. I have cold spells. I thought that maybe this was related to hormones, but of course my OBGYN said no. I am not convinced. I have weird sensations like light pressure on parts of my head and face. It doesn't hurt, just very strange. I was exercising regularly, but running on a treadmill got too difficult. I switched to swimming, and will try to start back. (my husband bought a puppy, and she can't be left alone for long periods of time yet.) Exercise seems to help. Does any of this sound familiar to anyone? I would love some feedback so I can go back to my various doctors. I have had the MRI, EEG, spinal tap, various balance tests, ear tests, no diagnisis yet. I am being treated for migraine with no pain. It is constant, but ebbs and flows. Please contact me if this sounds like you. Cristy
Cristy (crispenny@aol.com)
Boise, Id USA - Wednesday, May 02, 2001 at 16:57:15 (EDT)

HELLO, IT'S LESLIE FROM MARYLAND HERE. I WAS WONDERING IF ANYONE ELSE HAS HAD SPONTANEOUS MDDS...OR I GUESS THE QUESTION IS..DID ANYONE NOT HAVE A CLUE WHEN THEY GOT THIS ILLNESS....I HAVE NO CLUE....SO SOMETIMES I WONDER IF THIS IS THE ENTIRETY OF WHAT I HAVE...JUST CURIOUS,,,HAVE A GREAT DAY...LESLIE/REDCAT
LESLIE (adlerleslie@hotmail.com)
baltimore, md USA - Thursday, April 26, 2001 at 13:31:57 (EDT)

I have had inner ear problems for 14 years, including some brain fog, tinnitis, upper frequency hearing loss. I no longer have vertigo spells; they stopped long abo. However, lately I notice a body tremor, and some shaking in hands when I use them. Awhile back I was checked by a neurologist and endicriologist, and they found nothing.I wonder if this is related to the stress of inner ear dysfunction. HAs anyboy experienced this? Please email me at mooter@fuse.net. Thanks in advance!
John (mooter@fuse.net)
Cincinnati, OH USA - Monday, April 23, 2001 at 20:13:05 (EDT)

Hi May, I haven't been able to get my e-mail sent so decided this was is the better way. I will be repeating myself to many but that's okay. Several on the forum have suggested we all take a printout of the MDDS pages to every doctor we visit. I have done that at the risk of insulting a few but most are very glad to get the information. I do take Klonopin because it is the only thing that helps me function. I do not recommend to anyone because it can be addictive. However, it has saved my sanity. I have been on the recommended dosage for several years and my ENT said it was okay to continue as long as I did not increase the dosage. I certainly don't want anyone to get addicted so I say this with caution. I am in my sixties now so I'm not as concerned as younger people should be. I do find using the computer for too long at a time bothers me and also changes in the atmospheric pressure really make me dizzier. I have had this for several years but was actually diagnosed with Menieres when in my 30's. Then in my 50,s I noticed a definite change in the dizziness, more of a balance problem.( a bad one) It is indeed a puzzlement. I wish you well and hope together all of us can find help. Take care, Ann
Ann (fcriss@tsixroads.com)
USA - Monday, April 23, 2001 at 12:56:14 (EDT)

HELLO LESLIE FROM BALTIMORE,,I FOUND THIS ON THE NET AND THOUGHT YOU MIGHT WANT TO TAKE A LOOK " Meniere's Disease -------------------------------------------------------------------------------- Meniere�s disease is classified as an inner ear disorder that causes repeated attacks of dizziness and the discomfort of fullness from the affected ear. This is due to increase pressure of the inner ear fluids. Fluids in the inner ear chambers are constantly being produced and absorbed by the circulatory system. If there are any disturbances in the delicate relationship, the result is over production or under absorption of the fluids. This leads to increased fluid pressure that usually produces dizziness, which can be associated with fluctuating hearing loss and ringing in the ear. It is rare for someone to be affected in both ears at the same time. Meniere�s disease is characterized by severe attacks of dizziness that can vary from a few minutes to several hours or even days. Hearing loss and head noise usually accompany the attacks. The dizziness attacks can occur suddenly without any warning. Violent spinning, whirling and falling sensations with nausea are the most common symptoms. For some, a sensation of pressure in the ear is usually present. Sometimes if the pressure is severe, it can affect normal activities such as lack of concentration and short-term memory loss. These attacks may occur at irregular intervals. The individual can be free of symptoms for many years at a time." I HOPE THIS HELPS JERRY
jerry (jvancamp@his.com)
silver spring, md USA - Friday, April 20, 2001 at 13:17:14 (EDT)

hello ann, this is my correct adress, please try it again, I look forward to hearing from fellow mdds patients. may
may (tar13red@aol.com)
portland, or USA - Friday, April 20, 2001 at 13:14:30 (EDT)

Hi May, I e-mailed you a note but it was returned. Is your e-mail address correct? If so it may be this computer. I'll try again if the address is correct. Ann
Ann
USA - Friday, April 20, 2001 at 12:43:41 (EDT)

Hello everyone! I just wanted to know if anyone else out there feels "forgotten"? I know the pharmaceutical companies don`t feel that our "suffering" is worth the time and money to spend on research, but I`m sure everyone who has written on this website feels differently. There currently is no "on going" research regarding mdds, or at least none that I know of. Does anybody have any ideas to share on how to get mdds on the "medical maps". I know this may not be a life threatening disease, but it does take away the quality of life for so many. It is not "living" if you are constantly living in fear or hopelessness. I want my life back, but I cannot go back in time and constantly wonder what would have happened if I never went on that plane ride 7yrs ago. What I can do is start making some noise and hope someone thinks my message is important enough to listen to. If anyone has had similiar thoughts, e mail me with some ideas. Take care everybody. May
may (tar13red@aol)
portland, or USA - Tuesday, April 17, 2001 at 00:07:07 (EDT)

HELLO. JUST FOUND THIS WEBSITE AFTER SPENDING THE PAST YEAR DESPERATE FOR AN ANSWER TO MY AILMENTS. I RECENTLY SAW A DIZZINESS SPECIALIST AT HOPKINS WHO THINKS I MAY HAVE MDD. I HAVE BEEN A MESS FOR 4 1/2 YEARS AND THE PAST YEAR HAS BEEN PURE HELL. I AM NOT CONVINCED I HAVE MDD BUT I AM WILLING TO THINK IT IS A POSSIBILITY. MY SYMPTOMS SEEM DIFFERENT. I HAVE NEVER BEEN ON A CRUISE, AND I NEVER REMEMBER FEELING ESPECIALLY DIZZY AFTER A FLIGHT. I JUST KNOW 4 YEARS AGO I STARTED BEING OFF BALANCE. IT HAS PROGRESSED TO A CONSTANT STATE OF DIZZINESS, EXHAUSTION, IMBALANCE AND FEELING LIKE I AM CONSTANTLY WALKING ON MARS OR SWAYING....WALKING IS HELL AND I SEE HERE THAT MANY PEOPLE FEEL BETTER IN MOTION...NOT ME BOY...I AM BEST WHEN I AM LAYING DOWN...SITTING CAN BE TOUGH IF THE SWAYING KICKS IN. THE WORST IS STANDING STILL......I HAVE NOSEBLEEDS, HEADACHES, EARACHES...SO ON OAND SO FORTH. I CAN BARELY WALK MOST OF THE TIME AND CURRENTLY MAY LOSE MY JOB DUE TO HEALTH ISSUES.....ISN'T THIS A BLAST....SO I WANTED TO SAY HI, TELL YOU MY STORY, AND SEE OF ANYONE HAS SIMILAR SYMPTOMS. I ALSO USED TO FAINT, BUT I HAVE PROGRESSED TO OTHER FUN TRICKS NOW. I HAVE BUZZING IN MY HEAD AND FELL LIKE SOMEONE IS PUSHING ME OR PULLING ME, I FALL ALOT...AND HAVE "DROP ATTACKS" TO THE FLOOR....HOW CUTE...DON'T YOU THINK....SO THIS IS ME....GLAD TO BE HERE AND HOPE THAT YOU ARE ALL FELLING WELL...REDCAT/LESLIE
Leslie (redcat) (adlerleslie@hotmail.com)
Baltimore, MD USA - Monday, April 16, 2001 at 15:02:09 (EDT)

Hello everyone, just found this site as well and boy am I happy just to know I`m not the only one out there with this mdds. I`ve noticed that some people were wondering if this ever goes away, and I can say yes, it does. But It can also come back ( unfortunately ). I`m a 29 year old who`s "boat ride" started about 7 yrs ago after taking a plane, train, high rise elevator ride and greyhound bus ride. Yes, and this was all in a matter a couple of day`s. Well the highlight of everything was when I got off my plane ride in Hawaii and went straight to a traditonal LU-AU and threw up on the pu pu platters. Needless to say, none of the fellow tourists had an ALOHA spirit moment. So, I came back to Oregon and was constantly floating,swaying, foggy and stressed for about 2yrs, then one day, it was gone. After that, every once in a while if I were to go on an elevator, the sensation would come back for about a day, then go away. Well, this winter I got this nasty flu everyone has, and guess what, a free ticket back on the "boat ride". At first, I was just praying that it was flu related, because people who had it were complaining of being dizzy, but when it didn`t go away, I knew this "thing" had come back. Sucks huhn? Went to go see a dizziness specialist and found out that the last few years, ent`s and neurologists had misdiagnosed me with Labrinthitis, while I really had mdds. I`m at least happy to know what I finally have and that I`m not alone, eventhough I feel like it all the time. Ever get the feeling that nobdy really understands what your going through? Sure your friends and spouses may "feel bad for you" but they can`t truly understand what`s going on, or why I`ve been crying and so frustrated recently. I`m so depressed right now, it`s almost funny. I guess I just have to believe that if it went away once, it will go away again. And for those people who weren`t fortunate enough to even have a couple years of "boat free" like I`ve had,I hope you will know that feeling someday soon. As for me, I`ve made a full circle and here I am again. But at least this time I know there are others out there with me and the right diagnosis FINALLY!!! Anyone who feels like sending me any e mail, is more than welcome to, even some words of encouragement? Boy, I`m kinda pathetic right now... Good luck to all, if anyone needs to compare any symptons ( since I do have years of this) let me know. I wish you all at least one day of rocking free, maybe if we all think positive thoughts for each other, some good will come out of our suffering. Thanks again for letting me "air" out some feelings!
may (tar13red@aol)
portland, or USA - Sunday, April 15, 2001 at 14:35:19 (EDT)

I went on a 4 day cruise a few weeks ago. After getting off of the ship, I continued to feel as if I were on the boat. The rocking has not subsided. I feel like I'm in a fog - like my head is always dreamy. I feel a bit like you do (or used to, in your younger days) when you're drunk and you're trying to concentrate on everything you say and to so you will appear sober. Unlike others, I feel worse when driving. I feel like the car is staying still but all of the surroundings are being pulled behind me. Same for walking, but less so. My right ear feels like it's plugged. I've been getting headaches, though I'm still not sure they're related. I'm having trouble remembering things. I do better (apparently unlike most others with this problem) when I sit still. Busy carpet patterns and stairs disorient me. I went to a general practicioner, who thought I might have a clogged eustachian tube. She prescribed Guaifed and said I would feel better in 2 days or so. I did not. I called my family physician and was referred to an ENT. The ENT immediately concluded that I have MDDS. He prescribed a diuretic and a low sodium diet. He also suggested that I go to a physical therapist who specializes in vestibular disorders - 2x per week for 2 months. I start that next week. I did not intend to post (especially considering the short length of time I've had this and my assumption that I will be over it shortly), but noticed some commonalities that I couldn't help but mention. I had a sinus/upper respiratory infection the week before I got on the cruise. I had finished the antibiotic by the time I got on the boat and was feeling fine on that front. Also, I do take thyroid replacement hormones (part of my thyroid was removed). It sounds as if others on the site do as well. I've also been on fertility drugs for quite a while. Any sense that there is a hormonal component to this? I've noticed several folks indicating that their symptoms get worse at certain times in their cycle, and several folks have mentioned having thyroid problems of one sort or another.
Lucie Webb (lwebb@fulbright.com)
San Antonio, TX 78205 - Friday, March 30, 2001 at 14:21:07 (EST)

I went on a 7 day cruise from Feb.11 - 18, 2001. I haven't been able to "get off the boat" since. I used the scopolamine patch while cruising to reduce the dizziness I was feeling. I was diagnosed as having MDDS this morning by an ENT specialist in my town. I am a surgical nurse and have had great difficulty trying to maintain my balance, concentration, and co-ordination. I am totally fatigued when I get home from work. Sometimes I have to crawl upstairs to go to bed at bedtime. I'll be starting a vestibular rehab course soon and will start taking low doses of valium when my symptoms are severe. I wonder if my problems started because of using the scopolamine patch since dizziness and equilibrium disturbances are listed as adverse reactions to the drug if used longer than 3 days. If anyone else got this way after using scopolamine please contact me.
Marla Cruise (Mcclogger@aol.com)
Dubuque, Ia USA - Tuesday, March 27, 2001 at 00:04:43 (EST)

I am delighted that I actually can have information on my ailment, I hope it will help me feel better for future travel. I took a flight on Feb 24th and came back on March 3rd and I am still on (a boat) the swells are finally subsiding some. The whole week of vacation I was miserable and the next week after I could not even work. The third week was awful but small improvements toward the end of that week and the fourth week improved for two days thinking it was almost gone and now I am back to the deep symptoms of week three. Over a month and still not out of the woods. I have seen two otoneurologist and an audiologist and had an MRI and nothing conclusive except MDD which is what we came up with the other 3 times that I have had these sensations. I have had MDD from a 24 hour train trip, a fishing vacation (3-4 days intermittingly on a boat) and on a previous flight. I have a severe reaction to Valium, so I can not use that family of meds. Do you have any suggestions of how to prevent this fun or what can be done to help after a trip? I am totally frustrated and do not want to hinder my husbands future travel. I am 40 years old and we live in NH with long winters, we want to get away ever Feb to warmer climate that means flight (husband gets winter depression). Please let me know any pointers you have or a book that I can obtain the most up-to-date information on this. I am very frustrated and feel like a hypocondrac (spelling?) when I talk about it to anyone including family. They do not understand how I feel and still want me to go out snowmobliling and riding in a car and even physical pleasure with a mate can be feared. I was told by the doctors the more I move the more I will prolong this and to stay as still as possible another doctor has told me to exercise and move as much as possible. Any pointers you can share with me? Thank you, Brenda
Brenda (bash@merriam-graves.com)
Claremont, NH USA - Monday, March 26, 2001 at 13:40:21 (EST)

I have had the symptoms of MDDS since returning from a 7 day cruise on Jan. 8 2001. I have a rocking sensation all the time.Sometimes I have to hold on to walk. I am a 45 year old female. I have been to a GP, ENT, Chriropractor, and Neurologist. Tests: ENG, MRI both normal. I now am starting Vestibular Rehab. The PT suggested I research this disease since I had the symptoms. Medications don't seem to help. Ten years ago I had another mysterious illness to come on suddenly. I ran a low grade fever for a year and had dibilitating fatigue. Only explanation was CFS. I think I am prone to syndromes! I teach 4th grade, have three children 23,20 and 14, husband of 25 years and am active in church. I push to work even though I have disability insurance. When I first returned from the trip, I could not concentrate and my memory was poor. Asiles in Wal-Mart and walking the the mall bother me as well as loud background noise. I also feel cold sometimes. I want to think I am better than I was two 1/2 months ago, but I may just be learning to live with this annoying problem.
Jayne Anne (msja@apex.net)
Symsonia, KY USA - Friday, March 16, 2001 at 20:27:38 (EST)

Well, I had the vestibular physical therapy session and she re-tested my balance after doing the exercises for the past 6 weeks. For example when I was first tested I couldn't stand on one leg for more than ~ 15 seconds or less, this time I could go for over 1 minute or more. She did a whole range of measurements for my balance in the beginning, and yesterday I measured at almost 100%. Unfortunately I still feel the rocking sensations, G-forces, etc. I think that the extra physical activity is the key and the head shaking exercises (she said to re-train the brain somehow)have given me the energy to fight back and be able to do the things that I enjoy doing. If anyone is interested I could send you the pages of information on the exercises. I have also seen information online. Good luck all!
Carla Strand (cmacstrand@juno.com)
USA - Thursday, March 15, 2001 at 00:02:53 (EST)

After going on 7 day cruise in June, 2000 I am still experiencing symptoms of MDD, which seem to be getting more pronounced. I was wondering has anyone tried acupunture or hypnotism? I went through all of the tests, ENG and others. The "specialist" told me there was nothing that could be done. So I asked him if vestibual physical therapy has worked for MDD. After I had the initial evaluation, I will be starting next week. To Donna - I have hypothyroidism and have been taking meds for the last few years prior to the cruise. I also have been under a lot of stress. I haven't taken anything for depression. Good luck to everyone. Thank you for this site, or I would still be wondering what is wrong with me.
Carla (cmacstrand@juno.com)
USA - Friday, March 09, 2001 at 01:39:27 (EST)

Hi Andrea and all, When I read your comments, Andrea, I realized we had another common link. I also have been diagnosed with Migraine although I only have the aura, no pain. My father had terrible headaches but at that time they called them sick headaches. I feel that they were probably Migrain but have no way of knowing. I keep finding common links and it makes me want to go into research. Unfortunately I am getting to old but I still keep reading. I hope the rest of you can find something to help you. I do take a medication which helps but most people do not want to take it because it is addictive. Good luck to all and take care, Ann
Ann
USA - Wednesday, February 21, 2001 at 08:07:09 (EST)

Hi Everyone... Just to let you know that I have been suffering with MDD for about a year now. It got so bad last year that I became agrophobic and could not leave my house. It was like these strange forces were pulling me up and down and from side to side. If a concentrated on objects they would seem to shift and spiral. I thought I was going mad. Because of my depression my GP prescibed me Flurexetine (Prozac). I have been a changed person eversince. The drug stopped my panic attacks, made me more confident and due to being happier my MDD sumtoms aleviated. I no longer had the brain fog and could go back to working with computers.I am now about 70% cured. I still have dizzy spels but it is no way as bad. I hope other people can benifit from my foundings. Please feel free to email me. It would be nice to speak to other sufferers. Thanks, Robs....
Rob (rob@toko.co.jp)
Windsor, England - Wednesday, February 21, 2001 at 08:06:59 (EST)

Hi! My name is Sonja and I just find out your site. I have been suffering from a rocking, G-force sensations since April 1999. Like most of you, I feel better while I'm in motion. The vertigo feeling is worse while I'm sitting or lying down. I have done all the tests, audiogramme, EEG, ENG, Scan (head), blood tests...For the past 2 years, I couldn't enjoy beeing at a restaurant or cafe or bar or movies or home sitting down!!! Thanks to your site, I think I'm suffering from MDD. I'm travelling since April 99 every 2 months. At one point I was travelling every 2 weeks. It is within my job to travel. Canada to the US, to Europe, to South America... (My last trip to Peru and Columbia was terrible. When I came back, I had very deap sensations of roacking and I couldn't enjoy simple dinners with friends.. It was Christmas time! I had to hold myself to the tables or walls while sitting because I though I would fall down!) Now, I have to find a treatment otherwise I will not be able to perform my job. Any solutions, anyone? Where should I start? PS I have submitted this info (MDD) to my doctor (ORL, Neurologist) to see.
Sonja Berube (sberube@sprint-canada.com)
Montreal, QC Canada - Monday, February 19, 2001 at 13:30:17 (EST)

Hi, I just found your site Tues. I have been dealing with this rocking-rolling-pulsating since 9-99. I have had every test MRI,MRA,CT, Etc. Nothing has shown but ruptured disc C6-7. I also do better driving, worse sitting or lying down. I came off a 7-day cruise, immediately boarded a plane home, have had these symptoms ever since. I feel like I need defibrallation of the cerebellum to bring it back in rhythm. I have learned to roll with the waves. I was wondering if anyone has a history of meningitis or hypothyroidism? Also, if anyones blood pressure went up when they started rocking? I had no prior bp problems. Thank God I found you.
Donna Hall (Rickhall@dialnet.net)
springfield, mo USA - Thursday, February 15, 2001 at 16:31:03 (EST)

has anyone tried sitting on one of those vibrating massage chairs? it makes my symptoms go away temporarily.
Mya (mf21@cornell.edu)
Cambridge, MA USA - Thursday, February 15, 2001 at 13:12:56 (EST)

Hi Ann, Thanks for your comments. I am going on one month now with these symptoms. A few days ago it was so subtle, that I almost thought it was gone. Unfortunately, today it is back in full force. I have been reading up on the subject and noticed that quite a few people who have this syndrome suffer from depression. I guess I can count myself lucky that this has not ailed me; however, migraines definitely run in my family. Pressure changes bring about migraines, and this could be a cause...but who really knows. Thanks again for the comments. Andrea
Andrea
Switzerland - Wednesday, February 14, 2001 at 05:58:18 (EST)

Visit www.brainktalk.org There is a forum for Mal De Debarquement...
Toni
USA - Monday, February 12, 2001 at 14:26:40 (EST)

Hi Andrea, I have had MDDS for several years and am very much affected by changes in weather pressure, I can almost predict the weather. In fact, I have thought about getting a job at a weather station but know I would be laughed at. Just kidding, but it does affect me that badly. I have also had a problem with depression recently and have seen a very good doctor who has helped me tremendously. (I have read where there may be a connection with MDDS and depression). Now I believe it. Good luck to you and let us all know how you get along. (I would love to visit Switzerland) Take care, Ann
Ann Criss
USA - Monday, February 12, 2001 at 10:39:13 (EST)

Hi there, I am a 31 year old woman in pretty good shape with no current medical problems. Starting about 2 weeks ago I started having many of the symptoms described in this forum: Constant feeling of swaying which is worse when I lay down or sit, better if I am in a car or moving around. I feel like I am walking like a drunk, but I know I am not. I am tired, and irritable, but not nauseous...I am not stressed, not do I have any other medical conditions that could induce symptoms like this. I went to the doctor to have it checked out (there is a nasty case of the flu about right now). He check my blood sugar, iron (I have had low iron before) and for viruses. In addition he did test to check my blood pressure, lungs, appendix, ears, ear pressure, eye response, coordination - everything was fine. I told him the only time I have felt like this was after a plane ride (almost always, but only lasting 1 or 2 days). What I do not understand is that most people with MDDS have recently been on boat or plane rides. I have been on neither in the last 5 months. Is there something else that can bring this on (no, I do not sleep on a waterbed). The only thing I can think of is that in this area of Switzerland, we have extreme pressure changes due to weather. Right now trees are blooming because we have a weird warm spell (not normal for this time of the year). Many people around here get headaches, allergies or painful joints when the weather changes like this. Any answers? Thanks-Andrea
andrea
switzerland - Friday, February 09, 2001 at 09:27:12 (EST)

I was reading Nan's comment and was wondering what type of physical therapy people have done for MDD? I am suposed to start this soon at Johns Hopkins and I'm wondering if it really works. I have just been diagnosed with MDD but have experienced a rocking sensation for the past two years - all of the time. Medications have not really worked for me thus far.
Caroline (Evanharry@aol.com)
Washington, DC USA - Tuesday, February 06, 2001 at 15:47:29 (EST)

GOOD NEWS! I have now been symptom free for a month after doing physical therapy exercises for 2 months. This is my third round of MDD - probably not my last. I just want to encourage everyone that it can be beaten. Physical therapy has worked twice for me now. Good Luck everyone. Nan
Nan (puga@bewellnet.com)
Kiowa, CO USA - Thursday, February 01, 2001 at 20:07:52 (EST)

Ive had MDD since June of 2000. I actually didn't know what it was until yesterday i was looking up things on inner ear infections. then i came across "MDD". all it said about it was that it is a weird kind of land sickness people get after a long flight or cruise, usually lasting months. The way it happened was, in may, i went to japan. it was a long 13 or so hour flight. i was fine. while in japan, i was fine. every day i went somewhere by train or by bus. i spent hours on trains or busses. one day was nonstop train riding, trains going at 200+ mph. then, came the long 11 hour flight back. it was the worst flight ever. it started becoming unsteady. then, suddenly, the plane dropped. my heart jumped and raced, i thought it was the end. i held onto my seat desperately. for 15 minutes after the drop, it was EXTREMELY shaky, and then it became smoother. afterwards, every little jolt set off an anxiety attack for me. when i got off the plane, i noticed i still felt like i was walking on the plane. i told my mother this, and she said she felt the same, and that it would go away. my girlfriend came to see me that night and i said "my balance is a little bit off" and she said "i can tell." after a night of sleep it went away. i didnt think anything of it at first. however, 2 weeks later or so, after smoking marijuana, i had a huge panic attack, lasting like 6 hours. i thought i was having a heart attack and that i was dying. after that, i was afraid to move. the swaying came back full force. whenever i walk, it feels like the ground is moving up and down, like an elevator, and i have a sensation of falling. this really scared me at first. for about 3 months i was constantly worried. i was literally afraid to do everything. but then, things got better. i still feel the swaying and bouncing, moving floor when i walk, and i still have panic attacks sometimes, but its better. i saw a physician, neurologist, and had an MRI, it was all normal. i just pray to god and hope it will go away completely one day.
Rob (vtaker69@hotmail.com)
Boston, MA USA - Thursday, February 01, 2001 at 14:50:04 (EST)

Has anyone ever tried the fairly new drug called Celexa? I would like to know how it worked for you. Thanks and take care everyone.--Lynn
Lynn (Follfam@aol.com)
Green Bay, Wi USA - Thursday, January 04, 2001 at 10:18:11 (EST)

Hi Lisa, I am so happy that you had a great time on your cruise. I was thinking of you because the doctor who diagnosed my MDDS told me of one of his patients who happened to be wealthy so (he or she)just went on cruises most of the time to avoid the MDD symptoms. I suppose it is similar to feeling better when you are riding in a car. Anyway,I'm glad your trip was not spoiled and I sincerely hope you keep getting better. There is always hope isn't there. The best to you and Happy New Year. Ann
Ann Criss (fcriss@tsixroads.com)
Corinth , MS USA - Monday, January 01, 2001 at 20:15:31 (EST)

My cruise was very interesting. For the first two days, we were sailing on very rough seas. Everyone else was stumbling all over the place and getting seasick. And although I boarded with my usual rocking symptoms, I was ABSOLUTELY FINE. I didn�t even take my valium for two days! I was actually able to explain to my family what I was feeling for the past 2 years. They couldn�t believe that I�ve been living my life constantly feeling like I�m on high seas. Actually, I recommend that a cruise on stormy seas for any healthcare professional who says �I don�t know what to do with you� so they can feel what it�s like. This experience was incredible and I decided that if I�m going to live with MDD, I should get a job on a cruise ship. Once we got off the boat in Nassau, I didn�t have sea legs or any residual rocking sensation even though other passengers did. About three hours later, the normal symptoms came back and I took a valium. But once I was back on the boat, the rocking of the ship seemed to remove my symptoms. Of course, I couldn�t tell if I was feel the motion of the boat more than anyone else, but I really don�t think so. Now, I am slightly symptomatic but NOT more so. Very curious indeed. Has anyone else experienced this type of alleviation of symptoms? So, I did wind up enjoying myself despite the dread I had as the trip approached. I hope everyone had a happy holiday season and let�s hope this year finds us all a cure!
Lisa Stofko (lastofko@aol.com)
Yonkers, NY USA - Monday, January 01, 2001 at 13:13:01 (EST)

Just recently I was informed by an ear,nose, and throat doctor that I had MDD. I just went on my honeymoon a month ago and my husband and I took an all day cruise and a couple of hours after departing the boat I had the sensation that I was will sailing. Anyways, it's a month later and I am still sailing. I went to my internist initially and she put me on a medication similar to Dramamine that made me feel worse. Anyways, I am now on Elavin and I feel a lot better. This actually happened to me four years ago after a cruise and it lasted for a month and then disappeared. In the future I think that I will have to avoid boats because I hate feeling like I am swaying all of the time.
Joanne Ginsberg (jginsberg2001@yahoo.com)
Germantown, MD USA - Friday, December 22, 2000 at 14:29:31 (EST)

Hi, I just wanted to tell everyone that I spent the last 2 years on 1 milligram of klonopin every night and I felt great! Now I am a week of being off of it and it wasn't easy getting to this point. I think the drug has been great, but I would caution anyone trying it to stay on a small dose. It is not easy to get off of this drug. Good luck to everyone and time will tell if I need to try klonopin again. Take care...Lynn
Lynn (Follfam@aol.com)
Green Bay, WI USA - Thursday, December 21, 2000 at 22:34:05 (EST)

Does anyone know of a doctor in NY who is willing to treat an MDD patient? I used to work at NY Hospital-Cornell and saw 2 neurologists, an ENT, and an otologist. None could give me a diagnosis. The second neurologst referred me to the Vestibular Rehab Clinic at NYU where I was finally diagnosed by a physical therapist. She recommended an ENT at NYU who is now totally not interested in my case (How many times have you all heard "I don't know what to do with you"?). I left in tears. He referred me to Johns Hopkins but I would hate to go to Baltimore every time I need my Valium (2 mg 3x/day) refilled. I would like to try Klonopin but my ENT was reluctant to prescribe it this morning. (This guy is not happy that I've read more of the literature than he has). By the way, after two years of symptoms, I am reluctantly going on a cruise because I never told my family about what I'm going through and my uncle thought it would be a nice way to spend Christmas. I leave on Sunday and am dreading it!!!!! Wish me luck...and thanks for all of your input to this comments page. At least, I feel a little better emotionally knowing I'm not alone. Lisa
Lisa Stofko (lastofko@aol.com)
Yonkers, NY USA - Wednesday, December 20, 2000 at 16:49:23 (EST)

I just received an email regarding my last post, asking what medicine I took to help get over mdd. I wish it was that easy. I did not take anything except my usual vitamins and ibuprophen. The latter put me in the hospital with bleeding ulcers. Had surgery, with complications that kept me there for a month with nothing by mouth except "limited" ice chips. Not a fun time. Somehow I doubt that was what cured me, but who knows about this strange affliction? Barb Buchanan
B arb Buchanan (bpb34482@aol.com)
Ocala, FL USA - Wednesday, December 20, 2000 at 14:44:46 (EST)

Good News! I first posted in August 1999. Very typical case. 69 year old woman, 7 day cruise, etc. I asked that if anyone got over MDD to please come back and tell us. Well, I think I'm over it. I was so used to it, that it finally dawned on me, I'm walking straight, and don't feel dizzy! Since I posted, I have retired, moved to FL and survived a very bad session with bleeding ulcers with complications. Was in the hospital for 28 days. Unheard of in this day and age. But..... I'm not dizzy!!! I just shared this with my new MD in FL, and he said he had another patient with the same condition and was going to share my good news with her. May it give you comfort and hope too. Thanks to the people who responded to my original post. It helped tremendously to know that I was not alone, and that there was some chance of recovery. Thanks again, Evan, for hosting this site!!! Happy Holidays! Barb Buchanan
Barb Buchanan (bpb34482@aol.com)
Ocala, FL USA - Thursday, December 14, 2000 at 20:25:37 (EST)

It has been a very long time since I have added a note. I saw a vestibular specialist this past week and was informed that I have endolympathic hydrops, MDD, and benign paroxymal positional nystagmus. All of these may lead to a diagnosis of Waardenburg's Syndrome. This syndrome is something one is born with, genetic in other words. I have some of the characteristics of this syndrome with a large birthmark on my skin, blue eyes, and one non-related item my father has Meinier"s Disease. I have chronic swaying and rolling, ear pressure and fullness. The specialist thought that maybe some vestibular therapy might help my MDD symptoms. The only medication I am on is Lasix for the hydrops.
Arnold Bunting (buntinga@juno.com)
Oregon City, Or USA - Saturday, December 09, 2000 at 14:40:05 (EST)

I started on Klonopin on Friday, and my balance is great!!! Good luck to the rest of you. Regards, Susan
Susan Belmore (susan.belmore@midata.com)
franklin, wi USA - Monday, December 04, 2000 at 15:51:26 (EST)

I can't believe it. Chances are I have MDD based on a conversation and multiple testing like all of you have had. I can't even get into a specialist until August of next year. I have heard that 1 mg. Klonopin a day stops this madness. I hope that helps the rest of you. Do any of you know if your general practioner is willing to let you try this without even understanding MDD? My e-mail is susan.belmore@midata.com
Susan Belmore (susan.belmore@midata.com)
brown deer, wi USA - Thursday, November 30, 2000 at 16:20:55 (EST)

I'm responding to Marla's problem (pain in one eye & temple). I have this problem on my right side. I saw a physical therapist who specialized in TMJ disorders (I have TMJ as well). She taught me some techniques for relieving the muscle constriction. By using these techniques, I've kept the symptoms under control for over six months. Unfortunately, I don't think I could describe them adequately. Also, cranial osteopathy was very good for symptom relief. You can find a D.O. (Doctor of Osteopathy) that does cranial therapy on this site: http://www.craniosacraltherapy.org/ (click the Practioner Referral button).
Laura (laura_iverson@yahoo.com)
Santa Clara, CA USA - Monday, November 20, 2000 at 14:15:41 (EST)

Hi Rob, I have had this dreadful malady for several years and know how frustrating it can be. My suggestion for you would be to see an ENT who specializes in balance disorders, also make a copy of Dr. Hain's page with you. I have started taking a printout to every doctor I see. Some may look at you and say nothing but most will appreciate it. I saw a neurologist recently for another reason but took him the printout. He had just seen a patient with the same symptons as mine but didn't know what it was at the time. He was so very appreciative he was going to call his patient. I do not know the ending to this, but hope I helped even one person that day. Sometimes it just takes patience and a small miracle or two. I didn't mean to say so much but wanted to share this. I am on medication but most people don't take it as it can be addictive. I just hope you find a good and understanding doctor who will help you. Please don't despair, I know how hard it is but don't give up, Take care and God Bless. Ann
Ann C.
USA - Sunday, November 19, 2000 at 11:33:36 (EST)

I have been symptoms free for over a year. I went to Cozumel and spent a lot of time in the ocean snorkeling. Now my MDD is back. (talk about a sick way to prolong your vacation feeling!). But I am doing the physical therapy exercises again and I KNOW that I will win again. Already I have some days that I don't even feel the rocking. Then other days that I feel like I am still on the water. I just wanted to encorage you to not let it get you down. Let's all just ROCK ON!! Nan
Nan (puga@bewellnet.com)
CO USA - Saturday, November 18, 2000 at 00:12:30 (EST)

I typen in the wrong e-mail address on my last letter. Here is the correct one. Apodaca_1@email.msn.com!
Kellie Apodaca (Apodaca_1@email.msn.com)
Westminster, CO USA - Friday, November 17, 2000 at 15:58:49 (EST)

Hello everyone! I am a 29 yo female who has been suffering for 4 years now many symptoms described here in these letters. As with some of you I dont really know how mine got started. I read most of your letters and was very moved because I too suffer from dizzyness and imbalance visual disturbances, heavyness in the legs and arms, weakness, tingeling in the hands, feet, and head as well as bizarre headeaches and a feeling as if my head is being squeezed or very full. I have not yet been diagnosed with MDD but have been to an ENG, Neurologist, with no results but to find most all testing to come back within normal limits. I will be going to see an ENT in December. I just want to let you know that we are not alone in this battle for our lives. It is the Lord God who will make a way for us, who will give wisdom to those who ask and who will ultimately gives us peace during the worst attack. Finding peace in Him and through Him will drive out that fear of feeling so out of control with a situation you have absolutely no control over. God IS our ultimate healer! He blesses us with Doctors and they can be of great help however, they dont have all the answers, but I know who does!! The bible tells us in 2Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith. Also, in Isaiah 40:31 it says - Those who hope in the Lord shall renew their strength; they will soar on wings like eagles they will run and not grow weary and they will walk and not be faint! The Word of God tells us that we can do ALL things through Christ who strengthens us, not some things but all things! We together can take a stand against this horrible disease that the enemy has afflicted us with and begin to uplift, encourage and pray for one another! Should anybody out there reading this feel compelled to email me back to just talk and encourage one another or if anyone would just like some one to pray with them especially during those days that are so frustraing, fearful and terrorizing then please email me or you may phone me at 303.487.0070 my name is Kellie! May God bless you ALL!!
Kellie Apodaca (Apodaca_!@email.msn.com)
Westminster, CO USA - Friday, November 17, 2000 at 15:52:53 (EST)

After going on 7 day cruise in June, I am still experiencing symptoms of MDD, which seem to be getting more pronounced. I was wondering has anyone tried acupunture? I went to a specialist at the UW Vertigo Clinic, and had to show him the scientific paper printed from this site by Dr. Hain. The specialist tried valuim in a very small dose, I felt no effect. I also tried not taking hormone replacement for about 3 weeks. I noticed that others have commented on having a thyroid problem, I am being treated for a low thyroid and take synthroid. Good luck to everyone. Thank you for this site, or I would still be wondering what is wrong with me.
C MacMillan (cmacstrand@juno.com)
Issaquah, WA USA - Friday, November 17, 2000 at 13:14:18 (EST)

I need some help here guys...it is coming on 3 years since I started suffering from Vertigo/dizziness. I have had a CT scan, ENT, Neurologist, eye doctor....and a complete exam from my general Doctor. I am FRUSTRATED. I have done nothing about it for the last yr and have just dealt with the frustration. I need some help...anyone have an idea?...Should I see an allergist? Any help would be so appreciated. rob_in_van_98@yahoo.com
Rob (rob_in_van_98@yahoo.com)
Surrey, BC Canada - Thursday, November 16, 2000 at 17:33:24 (EST)

Oops - see below - I got my email address wron! It should be as per this comment. Perhaps my concentration is going too.........
Krys (krys@cybercritter.co.uk)
Southampton, England - Tuesday, November 14, 2000 at 14:33:33 (EST)

I began suffering vertigo - feeling I am swaying and about to fall over and tremors in my head - suddenly six weeks ago. The only change in my lifestyle that I can note is that I began travelling several times a day to and from my office on the 16th floor in an elevator. I have previously suffered from a continuing feeling that I am still on a rocking ship at sea, for several days after disembarking from a 33 hour sailing on a large ferry ship. My doctor doesn't have a clue. Have any of you guys out there suffered MDDS from riding in an elevator? It doesn't seem to be a major cause of this distressing condition, but it seems possible.
Krys (krys@critters.co.uk)
Southampton, England - Tuesday, November 14, 2000 at 14:25:56 (EST)

Hello. I posted last May. I have been an MDDS sufferer for almost 3 years. I take 1mg of Klonopin a day. I have a question: when my prescription was winding down (pending a Dr. authorized refill) I cut my dosage in half. I noticed feeling strange...lightheadedness, muscle aches, and heightened MDDS symptoms. My question is, does anybody else have experience with klonopin withdrawal symptoms (it was mentioned in a recent post)...what are the consistencies? Any help would be appreciated. Thanks!
Tommy Gamard (gamard@yahoo.com)
New Orleans, LA USA - Friday, November 10, 2000 at 10:36:18 (EST)

Hi everyone! This is my first time in the forum. I hope everyone is doing well. I have been experiencing my MDD symptoms for a couple of years now. I had two other shorter episodes after house boat trips without being diagnosed. My current episode has stemmed from a ferry ride to Alcatraz island. A short trip that has turned into a long ride with MDD. I was finally diagnosed. Too little too late it seems though. I wish I could sue my family doctor for not being able to diagnose me. If I had known I would have never got on a boat the last time. Have never really tried any drugs for my symptoms. I always seem to feel better when I am exercising regularly. I also seem to not notice my symptoms when I am engages in some sort of activity. Anybody else ha