So I am new here and could use some feedback


So typically I typically don’t write these things but I want to figure out if I should seek out a mav specialist. I read the Survival guide and honestly feel perhaps what I have been going through fits but while somethings fall pretty in line others seem kind of off so I was wondering if people who have this, feel like this fits the criteria, as I was looking into finding a doctor in my area deals with MAV.

My Story:
First off, my mom suffered from horrible migraines. If she had a migraine she could not do anything but stay in bed. She had a bad head ache, light and sound was really horrible for her. She had them a lot through her life. I have never had a migraine that strong or even know 100% for sure that I have had a migraine.

So on to me, over the past three years (give or take) I have had on and off vertigo, lasting a few months and its on and off. I have it for a couple of months its gone for a couple of months etc. Inbetween these things, I -have- had auras, or at least I think they are auras they appear typically in my right eye and kind of a wave in the corner of my eye last about 30 mins to a hour. I don’t always have head aches after them however. The last time I had one I did have a pretty bad headache but still managed to play a game during it despite being in pain lasted 2 maybe 3 hours even after Ibprof.

Now with my Dizziness I don’t typically have spinning or a headache, more often i feel unbalance or not right, it feels like going into stores really sucks for some reasons, I do have photosensitivity a lot of the time so i have a tendency to wear glasses outside, but perhaps that is cuz my house is typically darker. Being in a airplane when it slows down, goes up or down to fast really sucks, I was watching deadpool last week the credits where screwing with me, and got mild bouts through out the movie. Sometimes turning my head a certain way will trigger it.Watching certain movements in a game or movie will make me feel weird. For instance i was watching a cockpit view of a airplane and when they turned it made me feel pretty dizzy. I have had pressure that has come along with this sensation sometimes. Typically I feel light headed, but the above things just make it a lot worse. Though sometimes I will go through half a day with out feeling to bad and it will seem a bit worse at night.

I don’t typically have ear issues, I don’t think i have lost hearing really. I do occasionally get a ringing in my ears, doesnt last very long typically though. Only strange thing that happens is occasional my right ear will feel a bit funny and its like i can hear my breathing in that ear.

Its weird cuz these happen for a few months and just leave and i feel 100% fine than they come back. A few other medical things i have wrong with me are.

Heart Arrhythmia’s (Doesnt seem to be skipping when i feel that way though)
Anxiety/Panic/Hypochondria (My mom died of lung cancer due to being a smoker a few years ago so I have a fear of cancer)
I am allergic to like everything that is a plant practically
Oh I am a 32 year old male.

I do get neck aches, (though i had whiplash when I was a kid) that are pretty bad at times and ill try and stretch it out or pop my neck and than i get a head ache. I dunno any thoughts? Have I even had a migraine of any kind? I just don’t know what to think at this point.

Hi! I’m sorry to hear you are struggling with neck aches and dizziness and other very odd symptoms like food sensitivities that trigger worse symptoms too! It does sound like vestibular migraine symptoms. Often you don’t even get a migraine with it. I only get a migraine if I am really exposed to a TON of triggers (mostly fluorescent lights) in one day. Lights in stores bother me, mostly though it’s the CFL spirally fluorescent lights that are my worst enemy since they have a flicker rate that’s very high (they are used often in hotel rooms etc. and other conference and work places). I bring my own incandescent light bulbs with me when I travel (to put into hotel lights…) since I find those a lot less prone to make my head weird!

You just learn how to deal with the problem to some degree, but I think it would be very helpful for you to see a neurologist and see if a medication for MAV helps you. I was averse to trying meds for a while but they ended up really helping me function better and I can do sports again that I had stopped since I was so dizzy. Nortriptyline is a good drug for MAV, so is topamax, but that’s a little more intense, and zoloft is recommended by others. Gabapentin and depakote are other anti-epileptic drugs that can work. Basically it’s a matter of making your nerves in your head less sensitive to stimuli like fast movements, lights, sounds etc. that make your nerves overreact - I think that’s why we get the weird sounds in our ears and the sensations on our heads and pain in our necks and heads with MAV (it’s just that our nerves are too sensitive). Good luck! The search bar on this forum has been very helpful for researching ways to get better and which drugs to try. Basically everyone is different and we all respond differently to stuff depending on our metabolisms and bodies, I think… the first step is seeing a neurologist who knows about MAV-induced dizziness etc.

How bad can your dizzy/lighthead type spells get?

When I wasn’t on medication, I was able to function but not very well or with any relaxation or enjoyment. I felt like I was constantly in a state of off-balance or disequilibrium - like walking on an uneven slope, or floating a bit above the ground sometimes, kind of out of body life feeling. I didn’t have actual spells of spinning vertigo (well only at the very beginning did I feel like I was going to fall over completely and once when I went running I guess I did get a vertigo attack on a very humid hot summer day, when I pushed myself too hard and my body couldn’t compensate for my balance issues). The drugs help your brain to calm down so that you don’t feel as dizzy or “drunk” all the time. But the trick is to find the right med that doesn’t have too many side effects for you, and I am very very sensitive to drugs because maybe I have a very efficient (i.e. slow!) metabolism and therefore I don’t need too much of any drug I’ve tried to have a really rapid response to it. But that has also meant I’ve suffered from side effects from many drugs…nortriptyline seems like the best one for me if I can adjust to it enough that my heart beat is fine (under 100 bpm resting). There are many other drugs that your doctor could advise about but I think the order that doctors usually try is 1) nortriptyline 2) sertraline/zoloft 3) topamax I haven’t tried zoloft. There are others too. They fall in either the antidepressant or anti-seizure drug categories. The antidepressants change the brain chemistry so your body doesn’t sense the nerves messages in the way it normally does to cause your dizziness-which then would become searing migraines and head pressure in my case if I’m under fluorescents all day pre-medicine. This all happened suddenly to me in April 2013. I only started trailing drugs in the fall of this past year (2015) after trying everything under the sun to recover on my own through diet, etc. I got up the courage to try some medications under the supervision of my neurologist in thanks large part to his website giving me the courage to, and it’s been a very important thing. It’s helped give me hope again of living a semi-normal existence! Liv

I see, its been a real pain, typically laying down relieves a lot of my symptoms though sometimes still feel a bit off. My biggest hurdle has been going out, I went to go to the bank. Sitting directly in the light and just started hitting me pretty bad i felt really off balance, and than it triggered a panic attack. Was fine after I got home but man its hard to get used to. I am going to try and look for a nuerologist who has expierince with mav’s. Just its unbelievable how life altering the senstations can be.

Yup that’s right on with what I experienced. The light would cause it the worst - if I was directly under a certain type of light, or it would hit me in the wrong way, it was the most messed up feeling in the world. It sounds like you have a variant of MAV. Medicine really helps with it but in my experience the light sensitivity never completely goes away. But you learn how to be healthier in other ways, to destress (I go to the gym now often like 4 times a week for an hour to unwind, really helps), what’s important in life, and most importantly how not to panic when you feel dizzy sometimes. It will pass - and the best thing is to get out in natural light again. That always helps me feel better. I’d gamble on trying first with nortriptyline, since that seems to have less side effects that topamax for most people, and acts faster to help. I don’t know what dose will be your magic number, and be prepared to perhaps get a headache the first week or to feel weird for a few days when starting any drug. You need to give anything a week I’ve discovered to settle into something, and drugs like this need to build up in your system - become steady in your bloodstream - after a few days to a few weeks to work their full potential at any dose. I find that even 10mg of nort. helps a ton with the dizziness and light sensitivity (i can stare at my computer all day and I am fine, even under lights at work). Gabapentin also helped me but it’s more heavily sedating. The key thing about nortriptyline is to take it 12-14 hours before you want to wake up so you aren’t totally sleepy the next day. Good luck and this chart may answer some questions: Vestibular Migraine

Your neurologist can advise best - just make sure they understand that dizziness is a form of atypical migraine - find a good doctor!