I am 19. I have been dealing with constant, ever present MAV since shortly after my 17th birthday- or at least what I believe what is MAV. I won’t bore you with my medical history because it is long and arduous and quite frankly depressing.
On a daily basis I suffer from disequilibrium when walking. I walk across a solid floor and I feel as if I am sinking into it. This has severely limited my mobility. Finally, in January, in coordination with my school’s department of disabilities I was able to begin college. It’s been hard, if I walk too much, my other senses act up, noises become too loud, lights too bright and I have trouble focusing. Additionally, I get periodic episodes of positionally related vertigo.
I have, however been able to function somewhat. I try to maintain a stabilized blood sugar, avoid long walks, sleep as much as possible and surround myself by positive, supportive people. This is hard however, most teenagers feel invincible and do not understand my constant struggle. I’m on 5 mg lexapro (I’m very sensitive to medication) to help with the ever present anxiety. I feel like it has helped by somewhat muting my emotions. I also take Migrelief, Butterbur and COQ10.
NOW here is the current situation that I am desperate for some feedback about:
Last week I went home for spring break and saw my neurologist. She decided that since the lexapro was not helping my balance I should try nortriptyline. I am obviously stupid and do not follow directs very well. She told me to switch from one medication to the next without skipping any days. I decided to not take anything for 4 days, try and give my body some time to detox before beginning the nortriptyline.
Sunday, I felt terrible. Monday, I made the 4 hour car trip back to school. Since them, I have had significant problems even walking short distances. ADDITIONALLY, AND EVEN MORE TROUBLING- I AM FEELING THE ROCKING WHEN I AM SITTING OR LAYING DOWN NOW TOO. I am terrified this will not subside. At least in the past when I would get bad vertigo attacks I knew my vestibular system just needed a few days to readjust itself and I had to wait it out. This is something I’ve never experienced before.
My theory: 4 days off the lexapro left my brain lacking serotonin. My brain was already vulnerable when I entered the car- THEN four hours of constant motion made the situation worse.
I’m worried I developed some weird Mal De Embarquement variant. I’m so scared and panicked. I was just learning how to SOMEWHAT live my life with this disorder affecting my mobility and NOW I can’t even SIT in peace? what will I do?
I spoke to my neurologist monday before I had formulated this particular hypothesis. I’ve been taking 10 mg of the nortriptyline and 5 mg of lexapro since monday (it is now saturday) no improvement.
scared, so scared.
Thanks for listening,