I am submitting my history to help others and to see if someone else may have some insights or answers for me.
- 1963 - Brain concussion with torn and detached retina from 60 mi. per hr. head on collision. Head hit steel dash board and also forehead filled with blood. No seat belt.
- 1985 - Had an episode later diagnosed as Chronic Fatigue Syndrome (CFS) while working in a plastic molding company. Possibly due to chemical /fume exposure. Continued working.
- 1988 - 2nd minor episode of CFS. No balance or vertigo problems except for a 3 week minor episode after a 7 day cruise.
- 1991 - (Nov 8) First major onset of Mal de debarquement (MDD) after trip to Mexico involving boat and plane travel, diesel fumes, and HEAVY MOLD exposure along with a very dirty air conditioner unit where I stayed for one week. Duration of constant motion was 7 months, although I managed to continue working despite a return of CFS.
- 1993 - (Aug. 31) - 2nd major onset of mal de debarquement after 3 day sailing outing with diesel fume exposure and a moldy cabin. Subsequently the 4th episode of CFS set in accompanied by Fibromyalgia (FM). All three were severely disabling and I had to quit working. Vertigo continued until March of 1994, but the CFS and FM continued to be disabling. I also became aware of my Multiple Chemical Sensitivities and IGE Mediated allergies which included allergies to mold.
- 1996 - (Mar 20) Onset of major tremors after traveling 8 hours per day in the car for two days. It felt like someone had put quarters in a vibrating bed when I laid down. I was very limp and fatigued the next day. Prior to this trip I had attempted to take the tilt table test for neurally meditated hypertension because I was feeling like blacking out when standing up from a chair and when bending over. Was unable to take the test because of the vagus response and my blood pressure fell too low. The vertigo resolved itself as soon as I completed the car trip in 3 more days. . This minor episode time was accompanied by inner tremors, nausea, and spastic colon pain. Minor flareups of tremors continued until the next major episode 3 months later. I was also exposed to a propane gas leak, a forest fire and fire retardants of several weeks duration. These may have been triggers because they occurred immediately preceding the next major onset of MDD (see below).
- 1996 (June 15) - 3rd major onset of MDD, subsequently followed by CFS and flareup of FM. Each episode seems to be longer in duration, severity, and something new. Although I am not certain of the trigger this time, I had made a 4 hour mountain driving trip a few days earlier, staying in a high desert town at 4500 feet, was under significant stress, lost a full nightUs sleep the night before onset, was making short trips on mountain roads, and may have gotten dehydrated. This episode was accompanied by postural vertigo and extreme sensitivity to light, sound, and motion. (hyperacusis?)For example, I could not look at a ceiling fan moving, and even a child walking across the room felt like an entire earthquake. I had to be pushed slowly in a wheelchair to get my groceries. That was on a good day when I could get out of the house. I used a hiking stick (cane) to go short distances and in the house. After 9 months of no relief , I discovered through my support group a medication Trilifon(Perphenazome) 2 mg., gradually increased to 6 times per day and eventually tapered down to 3X a day. This helped me with the nausea and balance and I slowly began to walk normally again. I understand it works by blocking the stimuli to the brain. I was also treated with Florinef for my low blood pressure(neurally mediated hypotension) . I suspect in my case there is a connection between the two. My energy increased and I could begin to bend over again, and my feelings of blacking out dissipated. As of now, Aug. 14, 1997, I still am on the Trilifon 3x a day and have no major rocking sensations. I do have what I describe an inner tremors. This feels like a vibrator being turned on inside my body or and inner earthquake.( usually only noticeable when I am still) Also this is not usually visible to the naked eye. The tremoring can be felt inside my brain, the trunk of my body, arms, legs, or all over at once. At first it felt like the furniture was vibrating or moving. This can last anywhere from a few minutes to 3 or 4 hours. Other medications that help are Soma for the tremors and Fiorinal for the migraines. It seems like the inner tremors must be part of MDD or related to it. Can anyone give me any help on this or clues where to find out? Tremors will also wake me up in the middle to the night. The tremors also seem to be set off by travel in the car (after disembarking), exertion, stress, or lack of adequate rest. HAS ANYONE ELSE HAD THESE? HELP! I feel like I am in jeopardy of MDD returning until I find the answer or it subsides on its own. It appears to affect my strength, muscle coordination and balance. An answer may allow me to return to work.
Can anyone answer any of the following? Is there any known connection or correlation between mal de debarquement and any of the conditions listed below or do any of you or your patients also suffer from these. Please elaborate.
- Chronic fatigue syndrome
- Fibromyalgia
- Multiple chemical Sensitivities or Environment Illness
- Intercystitical cystitus
- Candidiasis/systemic fungal infections
- Chemical poisoning or exposures
- IGE Mediated Allergies
- Mold intolerance or sick building syndrome
- Low blood sugar/hypoglycemia
- Low blood pressure/neurally mediated hypotension
- Hypothyrodism
- Head and or eye injuries
- Postural vertigo
- Migraines
- Depression
- What part of the brain is affected by MDD?
- What are the names of medications used to suppress inner ear or block adaptation to inner ear signals?
- Is there any known effect from the use to Testosterone in Estratest tablets on MDD?
- Is there any difference between postural vertigo and postional vertigo?
- What is migraineous dizziness?