DO I have MAV?

Hi everyone,
I am so excited to have found this site!! I have been suffering from 24/7 rocking, vertigo, dizziness, fatigue, brain fog for now 9 years. AAAAH…9 years. Kills me to say that. I am 33 years old and it feels like a life time. I have been through the doctors as it sounds everyone else has. It all started happening after a trip to thailand where i was traveling for 3 months. I have always been very motion sensitive (car sick, never able to go on amusement park rides) but it began to worsen and then persist after boat trips or bus journeys but would always resolve within a few hours. Until I was on my way to India and came over very strange on the airplane. Wasn’t sure if I was going to faint, couldn’t tell if the plane was falling through the sky. I actually can’t remember much of this flight at all. Maybe blocked out the scary experience. I thought maybe it was panic, as I was on my own, or perhaps a brain tumor. I forgot to mention that I had an awful headache in thailand, where i was in bed for 6 hours. I have only probably had 4 memorable migraines in my life, which is why up to this point I have never mentioned them to any doctors, but the one in thailand was def one of those memorable ones. As a teenager I also sufferd from headaches probably weekly which they put down to hormones and pending menstration. So back to india. I got off the plane and felt much better,but then 3 days later thought the ground was on a slant and felt like i was walking like a crab. I went home and had all the tests done by a neuro and the ent and everything was of course normal! and i was diagnosed as being stressed, anxious and suffering depression… hummmm. Accepted and tried bunch of anti depressants with little relief, but at least i could cope better with it. Still taking zoloft 12.5 tiny dose, but have just had my second child!!! Crazy me! Feel like have to keep going to stay sane and can’t let it take me over as i was always told it was in my head. Excited to now think that maybe there is an answer and something that could possibly help me. I live in NY and have appointment with D newman in feb. I know other poss diagnosis is MdDS, but sounds like you gotta give meds a try. i am really interested in the Alph PXP Julie. wonder if you can take that while breastfeeding as i would love to keep it up… otherwise will be weaning in a few months. Post baby my symptoms have really increased from 5 to a 8… could be lack of sleep and hormones shifting about??? Glad to find i am not the only one, but so sorry to hear that others are suffering. Hope to find some relief. I feel that this is my big secret for fear of judgement that people think i am crazy, so nice to talk!!! Do you think i have found my diagnosis?? Should i tell doc i know what i have or wait for his diagnodsis?? thank you thank you
nadia

Nadia,

As you may have read, MAV’ers seem to have there own individual symptoms, mine–head spinning, but I do not have any problems with balance at this time, I have trouble sleeping, and I do get a migraine every so often if the spinning gets out of control, but most of the time it is a dull ache that is presistant, and I don’t pay much attention to it. You will find others who, see movement, have trouble with their balance, and on and on. Make sure when you see your Doc. to let him/her know that you experience migraines every so often, or if you have a headache most of the time, and what you take, or if the throbbing is so common you do not pay attention to it half of the time.

This site is wonderful, and look forward to your many post, and keep us updated. A young wife, mom, with young children my heart goes out to you :!:

At first, I was going to suggest maybe MDDS because your symptoms seemed to be triggered by long periods of travel. But then you mention a few things that are known to be migraine triggers and the motion sickness. I really couldn’t tell wich of the two you have, but I would lean towards MAV because of the migraine triggers.

Since you are nursing, I would probably stay away from the meds for now. It sounds like you have been doing a lot of reading on this site before you posted, so it sounds like you have educated yourself to the limit of what we have here. As you are aware, the only way to truly diagnose MAV is to treat the symptoms as if they were migraine related, and if things get better, then it was a correct diagnoses, if not, move on and keep looking.

9 years, I hope that you have found the right information to take to your doctor, and that things get better soon.

Brian

I know that a lot of people with mdds (at least as a diagnosis) have been helped tremendously by mav medication (veraprimil or topamax). If you do have migraines it’s something you wan’t to get under control, regardless of mdds or mav. That’s my thought at least. If mav, then it’s the way to treat it. If mdds then it may be the migrains that keep you from compensating.
I know what it’s like to be young and dizzy. Not fun. My dream was to travel the world, now that isn’t going to happen anytime soon.

/ Mikael - mdds or mav, who knows? Certainly not the ENT I saw today, was clueless lol.

Nadia gave me a brief summary of what her day was like symptom-wise and it sounded exactly like mine. It sure sounded like MAV, but I’ve never doubted my MAV diagnosis. I have wondered, because in addition to feeling the motion, i also see the motion, whether i have overlapping MDDS symptoms, although I never had any precipitating travel and Nadia sure did!

Newman is the one who believes in tiny doses of Zoloft, true? Every MAV doc has his own favorites, Topamax, Effexor vs. Zoloft, then the calcium channel blockers and beta blockers, although down at Hopkins they take the more conservative approach and start you with calcium channel bockers or beta blockers and then move up to TCAs, not sure about Effexor, then on to Topamax.

You will learn so much on this forum Nadia - welcome! I remember how excited i was to at last find this forum!

Julie

Thanks for everyones input. I find the symptoms so difficult to explain, but reading others posts has really helped put it into words. For me the fatigue and brain fog is by far the worst. I just look forward to my bed!! I find taking a nap in the afternoon (when I get a chance) really helps reset me for the rest of the day.
Been talking to Julie about starting the ALpha PXP after checking all is ok while breastfeeding. Excited to see if I have similar results. Maybe I won’t need to see Dr Newman in Feb.
Nadia

Nadia…i have read where many people with Mal de debarbqument are helped by anti-anxiety medication…valium, xanex, etc. But some Mav people like myself are also helped by anti-anxiety med’s.
Joe