2 years ago, I had constant dizziness that lasted 3 days before completely vanishing. I didnt know what caused this dizziness but I never worried about it since it went away so fast. Then 1 year ago, I started having extreme vertigo episodes. These episodes went away after a few months but let me with constant dizziness, especially when I move my head or my eyes. My ENT just suggested the possibility of MAV, but he wants to do an ENG test before making the official diagnosis.
I dont have typical migraine headaches, but I sometimes get nausea and agonizing sharp pains behind my eyes when I am on the computer too long, I dont know if this is migraine related or not? Additionally, I always have a feeling of pressure in the back of my head and my eyes dont feel like they focus properly.
While I am waiting for the official diagnosis from my ENT, I decided to experiment with diet modifications. So far, the only trigger I have experimented with is caffeine, I suspected this was a trigger because I used to drink a lot of caffeine. I havent had any caffeine for 16 days and I would say I my dizziness has lessened by 20%-30% already. The associated symptoms (head pressure and problems focusing eyes) have not improved, and I actually notice them more since the main symptom of dizziness is less severe. I know I should start experimenting with MSG and dairy products soon, but its just so difficult to cut these out of my diet!
I am confident that I can resolve my symptoms because I have already gained some relief just from diet modifications. Since I demonstrated that my dizziness CAN improve, I hope that pharmaceutical treatment (and possibly more diet modification) can resolve the remaining 70%-80% of dizziness (and associated symptoms) that diet modification alone cannot resolve.
A few other “associated symptoms” that I have experienced:
When my dizziness gets worse, I can always feel my heartbeat in the back of my head.
When I used to drink caffeine, my eyes would have a subtle random nystagmus.
Brain fog and a feeling of derealisation.
During the past 24 hours, I have ate several migraine triggers and my symptoms seem to be worse today. I ate some cookies with chocolate, ice cream, and some yogurt. I suspect that either the dairy or the tiny bit of chocolate I ate are a trigger for me.
Thanks! I hope something good will come out of this junk, I read your post about you finding a good relationship because of your MAV. I wish something like that would happen to me haha.
Have you had good results with your treatment? I cant wait to try some meds, I am very hopeful that they will be useful.
I had a pretty bad migraine headache today. Ive had a few migraine headaches in the past year, but I didnt know it was a migraine. I thought these were tension headaches. But its definitely migraine because I get head pain behind my eyes and forehead, nausea, light sensitivity, and motion intolerance. Strangely, my chronic dizziness does not get worse during migraine headaches. However, he motion intolerance during a migraine headache makes me nauseous whenever I move.
So this is actually good news because it pretty much proves that I have MAV!
I didn’t think I had migraine headaches either - I thought mine were sinus headaches. A lot of us with MAV (or as my neurotologist calls it, Migraine Associated Dizziness) don’t have the severe type of headaches that one usually thinks of as migraine headaches. If you can still function (don’t go home from work, don’t have to go to bed, etc.), you may not think it’s a “true” migraine headache. You can feel pretty lousy, but tell yourself it’s some other kind of headache, like I did for years.
It’s really an eye-opener to find out you’ve been a migraineur, isn’t it? And if this explains your dizziness, you may be well on your way to getting that problem reduced or solved too. Hope so! Mine is almost completely under control with Topamax. Good luck!
Thanks! I hope something good will come out of this junk, I read your post about you finding a good relationship because of your MAV. I wish something like that would happen to me haha.
Have you had good results with your treatment? I cant wait to try some meds, I am very hopeful that they will be useful.
— End quote
Honestly - my relationship was like winning the lotto, I just couldnt believe that something so good could come through all of this. But it just shows you anything can happen. I find that Paul takes my mind off of it so much that when I’m with him, I can almost forget about it (unless I’m having a really rough day).
As for the meds - get on them as quick as you can. I was dealing with this crap for 4 months before getting on meds and I thought I was going to die… even the first few weeks on the meds nearly wiped me off the planet! I’m on Nortriptyline and now at 40mg per night.
It has made a HUGE improvement but I’m still far from 100% and there is still a lot of stuff I cannot do - but I’m not at death’s door anymore or bed/housebound which is a massive plus!