Hello. An intro and my story

Hello all! I got a link here from menieres.org. My doctor thinks I have Meniere’s, though I think MAV is more likely.

I’m mom to four lovely kids, ages 12, 10, almost 5, and 2. We homeschool, which keeps live busy, entertaining, and fun most of the time. We live in the land of perpetual gloom, rain, and mold (western WA).

I’ve suffered from motion sickness all of my life. Put me in a car for longer than an hour, on a hot day, or on windy roads, and I’ll feel sick. Even short rides on large ferries over relatively calm waters make me sick. Air planes are hideous, especially in the rear of the plane. I used to love amusement rides but a growing number of them are on my untouchable list. I had chronic ear infections as a child (and plenty in adulthood) and ended up getting a tonsillectomy and two sets of tubes. My ear drums are so scarred from all of that most doctors are shocked that I don’t have any documented hearing loss…though understanding speech in noisy places or men’s voices in movies are difficult for me.

In high school, I had migraines (no aura, just pain) daily for two years. They decreased significantly after I moved away from home. They were/are caused by very high stress. At some point, I started getting ocular migraines (aura with mild headache lasting until I slept it off). Those are triggered by low blood sugar. I can count on having one if I get too busy or distracted to eat lunch before 2pm.

In 2006, I experienced half a dozen or so episodes of severe rotational vertigo. I’d wake up with the world quickly spining 45 degrees between vertical and horizontal. It lasted 48 hours. I could not move. The only tolerable thing I could do was lay on one side without moving even a millimeter. Then I’d wake up totally fine and stay fine for a few weeks. I went to the doctor at that time, and he suspected Meniere’s. Because I was pregnant, there were few tests that they could do. He gave me meclizine and sent me home. Then they suddenly went away.

Over the next four years, I’d experience what I consider normal vertigo/dizziness. Sometimes I get dizzy if I look over my should while laying on my side or if I got up too quickly. But it is momentary. No big deal.

Then we moved and I started waking of with mild vertigo. I discovered that the house we were living in would grow nice, fluffy mold on the windows. When the mold got to a certain stage of fluffiness, I’d get dizzy. I’d bleach the windows and be better.

In October, we moved again. In December, I experienced a week of dizziness. The third day I went to the doctor again to see if I had an ear infection. While there, I got so tired I couldn’t remain sitting (I have huge problems with falling asleep…so very sleep deprived on top of vertigo) so I tried laying down. The world spun so fast that I screamed and grabbed the table to keep from falling off. I went on to heaving and vomiting bile in their basin. They gave me a shot of phenagren, suggested Meniere’s again, and sent me home with meclizine and valium. I took a nice long nap when I got home and arranged for a friend to spend the next day at my house. The next 2-3 days were dizzy but I was out of bed thanks to meclizine.

January 1st, I gave myself an ocular migraine (missed lunch). On January 2nd, I awoke dizzy again and remain off ten days later. Fortunately, it’s gotten steadily better but I had a moderate headache for 10 days, which is my longest ever, I think. I’ve also had high pitched tinnitus for as long as I can remember, and it’s been much more annoying than usual. Currently, my head feels like the insides are quivering. I also get waves of sensation that move across my head and a face. It’s very odd feeling. Brain fog is a problem too.

So, I’m here looking for ideas to help myself. I don’t have insurance, nor do we have a ton of money. Typically, I save going to the doctor for when something is really bad. Ideally, I’ll have a treatment in mind before I go to make the most of the money spent. I’m hoping to learn enough in my reading to ask my doctor for a specific prescription I want to try next time I see him. I’m also reading the Migraine Brain.

That is absolutely textbook of MAV. Do you feel normal between vertigo spells?

There is great info here, check out the “MAV survival guide” thread, and get started on the migraine diet and lifestyle modifications immediately if you havent already. There is also a lot of great info here about medications, if you end up needing them.

I hope you get better soon! :smiley:

I feel totally normal between vertigo spells with the exception that the tinnitus never goes away (though it quiets down). December was the first time it lasted a week. The past 10 days have been the longest spell. I had vertigo and dizziness earlier in the current spell but now I’m down to slight unsteadiness, the weird head sensations, and brain fog. I’m wondering when it will go away.

Other things I’ve never associated with migraine or dizziness are chronic pain issues. I get these my body hurts all over spells occasionally…kind of like flu pain without the flu. I have a few friends who’ve suggested fibromalgia. Yeah, I know (now), another MAV symptom.

I’ve never associate diet with my migraines with the exception of low blood sugar. I’m working on diet now, though. We’re eliminating dairy and gluten, though we are using up what we have rather than throwing it out. We’re already avoid all soy except for soybean oil and lecithin because DS and I are allergic to it. I need to get through that before I have the energy to look at the other things on the list.

Hi and welcome Joanne,

It sounds like a lot of your symptoms are obviously triggered - so if you can eliminate them you may get a lot of relief and not need meds. Look up entries by Burd, she’s on both this forum and Menieres.org - her triggers are inhaled and eaten and she manages to control her migraine symptoms - you maybe able to achieve the same.

As you don’t have insurance you obviously can’t afford to get endless tests or opinions. If I were you I would be saving up my money to see a neurologist or neurotologist.

Good luck!

Vic

Very few WA docs believe the MAV diagnosis. My PT (who I saw for 6 months) who is well connected at UW said that she thought I could have MAV, but she would be laughed out of the room if she inquired about that as a possible diagnosis when she presented my case at their monthly meetings.

Joanne, whatever you got, I got :slight_smile: Your story is almost identical to mine. Had ear infections as a child, a lot of tonsolitis, got zig zag lines as teenager but no headache, diagnosed menieres after ENT tests in my 20s, then basilar migraine, then endolymphatic hydrops, then vestibular migraine. Motion sickness as a child. Nearly all my migraines are at the back of the head. I have been diagnosed reactive hypoglycemia (low blood sugar) with a glucose tolerance test. The severe vertigo attacks starting early morning are what I got and felt OK in between them to start with. I cannot sleep on either side in bed or turning over in the night will start the vertigo. I have had high pitched tinnitus for years. I get all the flu pains especially if I have done too much, so have the ME (cfs) diagnosis on top of the MAV.

Welcome to the club :slight_smile:

Christine

Hello and welcome!

Oh my, it sure sounds like MAV to me! I had a history of carsickness too. I was surprised to read that that is one of the things that is commonly found in the backgrounds of MAV’ers.

I just mentioned on another thread that the E-medicine article on MAV has a lot of good info; you might be interested in that as well. There’s a link to it on this website in the Science Based Research section, on the second page on the bottom of the page.

You might want to find out (if you’re carefully targeting your health care dollars) if there’s a neurotologist nearby. That’s someone who has both neurology and ENT training, and would be more likely to be familiar with this.

Best of luck, and take care.