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New to VM

I believe I have VM. I was diagnosed with classic migraine when I was 9-years old.

About 12 years ago, I began experiencing dizzy spells. It started with dizziness and feeling “heady.” After a few months, I got to where just looking up (to get something off a high shelf in the cabinet) or bending over made me dizzy. Then I got to where I constantly felt like I was on a boat, was walking on marshmallows; being in stores in certain lights set me off. Riding in cars became troublesome. If the car ride was long enough, when the trip was over and I got out, I still felt like I was in a moving vehicle. I would occasionally experience numbness, tingling, or some other neuropathy type symptom in my legs, hands, lips, tongue, and face. I would get what I call turns where I’m standing or sitting, and then all of a sudden it is like I’m going one way and the rest of the planet is going the opposite. Another (disturbing) symptom I get is feeling like what I call a glitch in the matrix - like, when there is a storm and the power in the house flickers but comes back on? It’s like that - in my head. (I sound crazy, don’t I?)

My migraine headaches changed too. I would get auras, but no headache would follow. I have seen ENT multiple times and have been cleared. I’ve had I don’t know how many doctors tell me that my dizziness is all anxiety related and then refer me to a psychiatrist.

I am very sensitive to medicine now. Things that I used to be able to take with no problem, now, either a little goes a long way, or I cannot tolerate at all. This has developed a fear of medication to where I won’t even take a Tylenol for fear of a reaction.

I go through what I call cycles of VM. I have a baseline dizziness that never leaves, but is exacerbated with work on the computer, weather, stress, or illness. Then I have cycles that happen 2-4 times a year where, I get aura with dizziness and vertigo, and this happens daily for 1-2 months. Sometimes the aura gives way to an actual migraine headache, other times, I get all the symptoms EXCEPT the headache.

Sometimes the dizziness is so bad I feel like I’m on a tilt-a-whirl even when lying in bed and have to sleep in the middle of the bed because I am afraid I am going to fall off.

I am terrified of driving because most days I cannot handle driving because I get so dizzy. The hillier, the twistier the road, the worse. The brighter the sun is worse. I have not been to work in nearly 3 years because I cannot drive or do not feel safe to drive, and even if I could get to and from work, some days the dizziness is so bad I cannot function.

Am I crazy?

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Crazy? What’s craziness got to do with it? IMO Nothing. If you are doubting your sanity because you can find no explanation for your symptoms then desist immediately. You sound a typical run-of-the-mill almost pardon-me-for-yawning MAV sufferer. All very common typical symptoms backed up by a predisposition to MAV that comes from a childhood of migraine. If what you are suffering from something else I will be gobsmacked and probably insist you seek a second opinion! I don’t see how Anxiety would make you dizzier looking at a computer screen. That’s a MAV trigger. And medication sensitivity is another common MAV indication. No I wouldn’t imagine you have any need of a psychiatrist. Go find a neuro-otologist or a neurologist and see what they have to say. Sounds typical MAV to me. Anyway, Welcome Abroad our swaying ship where you will reassuring find most of the crew have first hand knowledge of your symptoms. Helen

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You sound like a VM case study. I could have easily written that entire post. Welcome to a club nobody actually wants to be in. Read our wikis. Look at the polls. Use the search function. Then find a neurologist who’s dealt with VM. Walk in armed with as much education as you can. Get on the med trials ride. Make the lifestyle modifications. It’s likely going to be months or years, but you will get to the point where life isn’t so hard again. You will feel much better again. It’s totally possible to thrive again. You’ll never be whatever normal is, but you will be ok.

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Hi Rita,
You’re not actually new to VM it seems to me…far from new unfortunately.
I agree wholeheartedly with Helen and Emily on all points.

First and foremost I want to say that I’m sorry you’ve had such a rough time finding a physician who could diagnose you properly, which I’m convinced you’ve not been.

I’m upset on your behalf! Unfortunately it’s not uncommon for vestibular migraineurs to be misdiagnosed or have their illness thrown into the “anxiety” basket since many medics aren’t educated on VM. To Helens point; you really need to find a specialist. An ENT or general Physician is not likely to be educated on VM.

I’m glad you are here so that you hopefully can research and finally rest easy in the fact that you are not alone and you are quite normal! You just happen to have an obscure illness that can be treated with the right medical support and lifestyle changes! You can get your life back and I’m excited for you to get started!

Renee’

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Hi, Rita. I am new here too. I haven’t been diagnosed yet, but have another ENT appointment in 13 days and a neurologist appointment in 17 days (yes, I am counting them down).

I have had migraines for at least 30 years. In 2006 I had a hysterectomy for the sole purpose of helping the migraines which I was told was a 50/50 chance. It did help, but I have some type of headache almost daily and was still getting migraines on occasion. That is, until a little over 2 months ago when I had a plethora of weird symptoms that started and had a migraine or almost migraine for a solid 2 months. Today is the first day in over 2 months that my head didn’t actually hurt and I was able to clean my entire house and do things that I haven’t been able to do for months. The dizziness is still there, I still have ear fullness and tingling in my legs, but at least it’s more manageable than it has been for months.

I don’t know what the neuro will diagnose me with or prescribe for me (and will more than likely take more than one visit), but at my first ENT appointment a few weeks ago, the first thing she said was vestibular migraines and/or BPPV which is how I ended up at this site and have done tons of research.

Everyone here is so helpful and supportive and knows what you’re talking about when you mention each of your symptoms because almost everyone here has had most of them to some degree.

Anyway, welcome to the site and hopefully you will have answers soon!

Katy

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