Hey all, well after a bit of trial and error with a few docs I got to a neuro oto today and within 5 mins of reading my symptoms and talking to me he diagnosed me with MAV. It was a bit of a shock to say the least. Symptoms are mainly as follows
Base of head/skull pain
Noise and light sensitivity
Tinnitus and ear pain
Most of these symptoms are in what I would call the brutal/debilitating stage. Currently cant work or drive a car due to them, so I’m kind of housebound at 29 years old. Let me say going from a type a personality too so many limitations is really difficult. I am on amitriptyline to start and am about to begin the recommended diet, any tips would be appreciated. I’m also a diagnosed celiac, so that will make the diet a bit challenging to have to eliminate more things. I’m happy I found you all, as having people who identify really helps. Hope to chat with you all in the future
I would just like to say that I am a NCGS MAV sufferer and doing the diet gluten free is not as bad as you might think. I’ve been strictly gluten free for over 10 years so eating gluten free is second nature to me.
You will be okay on the diet. Just think about how you figured out how to live gluten free and apply that to the migraine diet. It will take a little time but you can do it.
For me, I’ve been on a very limited diet for over six months during this relapse and saw only small benefits…whereas the first time I was diagnosed I ONLY did the diet and had success for many many years. This time I’m on nort along with the limited diet and the nortriptyline has helped more than the diet.
Amitriptryline is a good place to start. I only partially follow the migraine diet. I think I’ve worked out which are my triggers and which aren’t. I maintain nutritional ketosis. It’s a bear, but worth it.
You might have an atlas orthogonal chiropractor check out your neck. Base of the skull neck pain could be an out of alignment atlas. My neurologist sent me to this type of specialist chiropractor and it made a big difference.
That’s the type of chiro I just went to. Except it’s upper cervical blair method. The Dr who is the long time expert did c1 and c2 adjustment and I felt amazing. Then his partner adjusted c3, and instantaneously, symptoms came back. They are holding off in me for a week. I want to get the first guy to put it back!! Lol!
Hammet, I did the migraine diet along with meds with my initial diagnoses. Not everyone reacts to all the triggers, so eliminating one of them at a time is best to see. Most reactions will come on in 24hrs or less for me. Some I can have in low quantity, and some not at all. I make my own stock and sauces. I cannot eat fast food at all. Frozen dinners off limits for me, except for a few without additives like Amy’s (tho the sodium is mega high). No Chinese and no soy for me. No red wine except high quality pinot noir. Avocados are ok for me, minimal nuts and citrus, 1 cup coffee, but no more. Some recent new triggers for me are yogurt and EGGS! I love eggs and this one is hard!! I agree that the diet had more impact when I was first diagnosed. Not as much anymore for some reason.
I love my doctor. She is a really holistic thinker. Which may be because she’s a neurology nurse (ARPN) rather than an MD. Her MD clinic head told her to kick me to the curb because I don’t fit the classic migraine mold. My doctor wouldn’t have it. She sent me to all the normal testing (optometry, audiometry, VEMP, MRA/MRI with contrast, blood work for autoimmune) and to the AO chiropractor. She wanted to rule out everything. My atlas was way off (subluxed in the parlance). The AO chiropractor did very specialized x-rays and told me it was off in two different axis and was putting 6 times the normal pressure on my spinal column. When she fixed it, I could actually feel the release of my CSF as it drained out of the back up in my head and went down my spine. That was weird and hot. Ick. Anyway, I feel way better after a few months of treatment. I can tell when it’s off because it causes MAV to go crazy. I didn’t used to be able to turn my neck. Now, I’m largely pain free and flexible.
I had bouncy vision earlier tonight. You’ll hear each doctor say a different subset of symptoms to fit, but mostly it’s a bucket of symptoms they’re more common to hear. I get visual snow in the dark and sometimes if I’m really symptomatic it’s during the day time, some people with MAV have that, but not a lot.
A lot of people here talk about “bouncy vision.” You’ll see if you start reading some of the past threads. Look for the threads that are titled similar to yours, where they say they’re a “new member” or something like that. Usually people will start by describing all of their symptoms.
I totally relate to what you said about ‘type a’ personality. When I was hit with this I was a successful senior manager at a blue chip company doing pretty well. I also danced and played and sang jazz. All that has gone for time being.
But hang in there … for me it has got a lot better.
Very odd you are getting this so young. Did you experience any head trauma in the preceding 10 years? Have you ever had ear trouble historically?
I have been a soccer player for probably 20 of the 29 years I’ve been on this earth, never diagnosed with a concussion or trauma, but I’m sure there were some sub concussive hits in there, maybe a cumulative thing of sorts. Back in October I was playing in a soccer game and when I came down from jumping in the air to head a ball, my ear would plug up and I would get spin dizzy, but only when I ran. Ran through all the balance and audio tests back then and nothing came back as out of the ordinary, February rolls around and stuff hit the fan symptom wise, a lot of motion sensitivity, light and sound sensitivity, eye and ear pain, tinnitus etc. I was leery about the MAV diagnosis at first because of the 24/7 ness of a lot of my symptoms, but from what I’ve read and been told it’s not out of the ordinary for that to happen? It had to be whatever went down with my ear in that game that set everything off, I’ve never had an actual migraine in my life. I dont really get spinning as in I can see my world spin, its more of a dizzy feeling in my head. That’s the best way I can describe it I’ve been tested for a lot of other stuff. So once all the came back fine/negative MAV was diagnosed
I read a few of your posts about your experience and how everything came to be, so odd that a shower could do all that. The one thing I keep sticking on is the 24/7 bouncing vision (when walking/running) That one is hard for me to attribute to MAV still, but some folks here have said they have it. My next course of action may be John’s Hopkins clinic, it’s a bit of a drive but worth it if they can give me a little more clarity. The neuro oto I saw the other day this week didnt redo any of my vestibular tests which kind of bothered me, I had them done in October but my symptoms have advanced 10 fold since then.