New here

Specific Illnesses & Conditions VM/MAV
1

Hello. I’m new here and looking to talk with other folks who have had similar issues.

I’ve dealt with balance issues for 7 years. I’ve been told I had labrynthine disorder, bilateral vestibulopathy, meniere’s, and now, vestibular migraine.

To my knowledge, I have never had a migraine headache. I’m learning that migraine headache may not be a requirement for VM. I also happen to be a nurse so I am researching as much as I can. I also happen to be having acute dizziness issues right now and can’t really think straight. Plus, they have given me valium which doesn’t help the thinking issues.

The last really bad episode/cluster I had was in December. I was having spinning attacks and would often have drop attacks. Between attacks, I had a constant feeling of being “drunk and on a boat” (that’s the best way I can describe it). Disequilibrium, running into walls, unable to walk in a straight line.

At that time it was suspected I have Meniere’s and was sent to a neurotologist at a balance clinic out of state. I was started on a diuretic by the local ENT. When I finally saw the neurotologist, he discussed early Meniere’s and ordered an MRI to r/o neuroma. Well with this recent bout, I called yesterday and his nurse informed me that he is thinking along the lines of VM instead, which is news to me. She stated the doc is recommending prophylactic migraine treatment. Also, my MRI was normal.

With this latest bout, I’m sure not safe to drive, let alone do my job as a nurse. So I had called off. It was also recommended I go to urgent care, so I did.

I wonder if anyone else throughout their battles with dizziness have been in the position of having to educate non-specialists, such as ER or urgent care doctors. That was the position I was in yesterday. At least the man had the good sense to tell me he had no idea how to treat me. After telling him what the neurotologist’s nurse was recommending, we decided to try an Imitrex injection. It did absolutely nothing. I was also given some zofran for nausea. I actually left with the same amount of dizziness, a headache, and feeling more nauseated. He also gave a Rx for the valium for vertigo and phenergan for the nausea since the zofran didn’t seem to help a bit.

It’s frustrating not knowing what’s going on, what the cause is.

Well since the last bad episode in December, I have a constant feeling of disequilibrium. I always say that I’m on a boat, but some days the water is rocky, other days it’s not as bad. But it’s always there. I have bilateral tinnitus which fluctuates in intensity, bilateral hearing fluctuation (worse in right ear), and a constant sensation of fullness in my right ear. I have been through a battery of testing at the balance clinic which showed right sided vestibular weakness. In the past, VNG had shown bilateral weakness.

So yep, I’m at a complete loss. But it’s really hard to function where I’d like to function when I’m running into walls and getting mild to severe spinning vertigo episodes. I’m not safe to drive at the moment, that’s for darn sure.

This is the first time a benzo has been tried for the dizziness. I find it helps to some extent, but makes me very sleepy. And I know feeling tired certainly makes my “i’m on a boat” feelings more intense. So I still feel like I’m on a boat, but I’m not spinning. So that’s something, I guess?

Sorry if this is rambling, I’m in a pretty bad brain fog at the moment due to the above.

Thanks for reading. Hope you all are boat-free today.

2

I would bet v much u have vestibular migraine. All my attacks are in my sleep and when I wake up I know something is wrong and know as soon as I move my head everything will be moving to one side. I have chronic imbalance and dizziness. Between attacks. Please please see a specialist that understands vestibular migraine. My symptoms at under much better control with nortriptyline and pregabalin. Good luck x

3

I would bet v much u have vestibular migraine. All my attacks are in my sleep and when I wake up I know something is wrong and know as soon as I move my head everything will be moving to one side. I have chronic imbalance and dizziness. Between attacks. Please please see a specialist that understands vestibular migraine. My symptoms at under much better control with nortriptyline and pregabalin. Good luck x

4

I’ve dealt with chonic dizziness and a spaced out feeling for years, first in my 20’s and now in my late 30’s. I feel like the doctors never have a clue. They order test after test, but they’re just shooting in the dark. So frustrating. I’m at a very bad point now with the dizziness and imbalance. Hard to work. Had a VNG last week and seeing the doctor tomorrow for the results, but the tech already told me it was normal. Appt with a neurologist in a few weeks. Doing the same things I did when I had this in my 20’s, I’m sure with the same lack of results : (

5

I’m not sure where you live, but when I was having those symptoms my PCP referred me to a Physical Therapist (part of a large clinic) that specialized in balance disorders and dizziness - he worked with alot of migraine patients. Perhaps there is something like this for you (I like in Minneapolis MN area). The therapy really helped. The neurologist thought I might have MS based on a funky MRI but all other tests negative - thank goodness I got into the headache specialist/neurologist who said it was migraine.

So hang in there, and see what resources there are for you in your area.

6

I have definitely been there being frustrated with doctors. Sometimes I feel like they don’t know what to do so they just order more tests.

Anyway I hope you find a doctor who can help. I would second the recommendation to see a migraine specialist. I DO get the horrible headaches but not that often, so I was suspicious at first too. I remember telling the ER doc: “I get migraines. This isn’t a migraine.” But migraine can cause primarily vestibular symptoms.