I have a lot of the symptoms discussed on this board. I’ve had these symptoms for over 24ys!!! It all started when I was 16. It just started out of nowhere like a lot of others. When it first started, I saw different doctors who did a lot of tests and referrals. I saw more than one ENT and and more than one Neurologists. I don’t even really remember exactly how many, it’s been way too long. For the most part, I stopped seeing doctors (lost hope) once I got in to my mid 20s. Diagnosis have ranged from “It’s all in your head” to sinus infection. Definitely not a sinus infection. I just thought I’m going to have to just live with this. My problems have always been on and off. I could go months or even a year without any real serious dizziness. A couple of times I had bouts of dizziness that lasted 4-6 weeks. Each time they would slowly go away. But one thing I have to say is each time I saw the Neurologist, it was times where I wasn’t displaying any symptoms. Is MAV a condition that needs to be diagnosed while you are suffering from the symptoms. I’m going through a small bout of dizziness right now. Enough to make me not able to work, but not enough to put me into an panic attack. Even after all these years, I still get this rush of fear when the symptoms start coming up. I don’t think I have it as bad as some, but it’s enough to affect my life where I don’t ever want to travel. I feel bad for my family because of this. I haven’t gone anywhere in those 24yrs. Glad to see this forum has a Success Stories section.
Yes, you certainly sound like a migraineur and that would be the root cause of your dizziness and associated anxiety. Have you ever taken any steps to modify your lifestyle? Can you pinpoint any patterns or triggers that set off the attacks?
Best … Scott
One thing I should mention is that I also get this weird metallic breath a lot of times when I start getting sick. It’s not always there, but it’s there most of the time. My family and friends are very aware of this smell. It’s very unique. I’ll start getting this sick feeling with or without any dizziness, the breath will be there, and some time later (15 min or hours later) the breath will be completely gone and I also feel just fine. Very odd.
I must say that I have always had a hard time trying to pin pointing a trigger or triggers. But one thing I did do is try to minimize my yeast consumption. Only because when I first started getting this, one doctor referred me to get an allergy test. I came up allergic to the typical stuff like pollen, dust, grass. But in terms of foods, it was yeast, vinegar, mushrooms, and beef that came up as allergens. For years I stayed away from these foods, but I still was experiencing my symptoms. So I started to eat them again. The only thing I try to minimize is the yeast consumption. I’ve read some bad things about too much yeast in the body. The reason I don’t think it’s a food thing is that when I have long bouts of feeling completely normal, I’m eating and drinking whatever I want. Months and months go by with no problems.
With going through this for so many years, I honest feel it’s a matter of some kind of vitamin/mineral deficiency. Or something having to do with blood or blood pressure. I don’t know why I feel this way, but something in my gut is tell me this. I believe we all have something very treatable but the fact that so many us have seen doctors with no success also tells me it’s something out of the box.
Can people with MAV go years without any issues and then out of the blue start up again? Especially if your eating/drinking and doing everything else the same during those years.
Thanks for listening.
Yes, unfortunately we can go for years without symptoms and have it come back. I first had this when I was 21-23. It settled down which was nice because no doctor could tell me what on earth was wrong with me. When it resurfaced last November (although all the years in between I was at 90%-95%, I have accepted I will have balance issues forever, it could be worse) I panicked. When I finally learned what I had, it made sense that it came back. For one, I am 33 now and mid-thirties is a peak time for migraines. I was under a lot of stress at work and at home, both of which I have changed. I was eating migraine triggers literally at every single meal, yogurt with almonds for breakfast, ham or turkey for lunch, dinner out a lot…all of this combined to push me over the edge. I will say once I changed my lifestyle I got it enough under control to go to work. I added nortrip because of the horomonal component and have had added relief.
Oh and sorry, your original question…my neurologist diagnosed without me showing symptoms, I just told him about all my symptoms and he asked about family having migraines and motion sickness when I was a child, etc…that showed him I was likely to have this condition.
In answer to your original question, yes. You don’t need to by symptomatic to be diagnosed with migraine. The sporadic nature of your episodes, including chronic periods absolutely fits migraine. Weird is normal for migraine. I also get a panicky feeling when a migraine is coming on and know plenty of others who do too so you’re definitely not alone! I think it’s a mixture of a symptom and a genuine and well founded fear of what’s about to hit.
It’s such a shame this crap is stopping you from travelling!