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attesa 03-30-2011 03:18 PM

Vestibular Migraine
Hi all,

I have recently been diagnosed with 'Vestibular Migraine' which is a type of migraine which affects my balance system. I've had this condition since August 2010 (8 Months now) and it's been very debilitating. My main symptoms have been Constant dizziness, unbalanced and Nauseousness.
I've never really suffered from severe Migraines in the past, but I do get headaches almost on a weekly basis (panadol usually did the trick)

After 6 months of trying to find out what was wrong with me, a Neurologist finally diagnosed me with this condition. He first started me off on Sandomigraine. When it wasn't doing much, he asked me to increase it to 2, and then eventually 3 tablets a day. after 2 days of taking 3 tablets I started feeling a bit spaced out and wasn't feeling any better.

As off 3 days ago i am now on 25mg of Topamax (once a day).
So far no side effects, but plenty of concerns with all possible effects that have been mentioned in the other threads.

Just wanted to know if anyone else here has been diagnosed with the same condition as i have and what meds have helped them.


Puddinsnana2007 07-22-2011 06:35 AM

Re: Vestibular Migraine
I was diagnosed 3 years ago with Vestibular Migraines after months of testing as well. I went through vestibular rehab and every test available then was referred to a doctor that specializes in vestibular disorders. He diagnosed me immediately after hearing my symptoms which are most of the classic ones you read about online. My neurologist pretty much gave up on me and tried to convince me it was anxiety and depression. Right! Just out of nowhere I am anxious and depressed for no reason. Anyway, after giving me Lexapro with no results he decided to try an old medication that he said used to be for depression but is now used for other neurological symptoms called Nortriptyline. I was having episodes lasting several days where I had to stay in bed and very still to avoid getting very sick. After being on the Nortriptyline for a couple of months the episodes deminished to very tolerable where I was able to go to work. I still get symptoms but nothing like before. Mine come in monthly cycles. After taking this medication for 2 years I was wondering if I was just getting better on my own and decided to go off of the medication. In less than 2 months I had another bad vestibular migraine landing me in bed again. Obviously I went right back on the medication. I still have some attacks that are worse than others but not often. I had a bad one yesterday that I think was triggered by extra stress but it is much better today.
Most people have never even heard of this diagnosis and some don't believe it is real, like my previous primary care doctor. It is frustrating trying to describe it to people. When they hear the word migraine they think I have a headache. I have learned to just get through it without telling anyone about it.

Hunter26 02-05-2012 10:50 PM

Re: Vestibular Migraine
I have vestibular migraines also. I understand completely in regards to feeling like many doctors don't understand or recognize this type of migraine. It took the drs about a year to figure out that i had vestibular migraines. I've been on about every kind of medication out there with little success. After 4yrs of being very debilitated from these migraines. I discovered by accident that antihistimes helped me the most and was able to quit taking many of the other meds(which I thought had worse side effects than the migraines and really only made me feel drugged and did little to improve my condition.) Another thing that helped me a lot was going thru vestibular rehabilitation/therapy.

I hope my advice can help some of you. Hang in there and find what works for you. After 4 yrs of struggling with these migraines, I'm finding that I finally learning how to manage them and feel like myself again.

Rxyh 03-03-2012 09:29 PM

Re: Vestibular Migraine
I was Dx with them in Aug 2010 and am I my 2nd Migraine medication to treat it which is Topomax. I take 100 MG, and that take care of a lot of the dizziness and Vertigo that lower doses didn't treat, but I do have side effects. It had changed my taste and I can no longer drink any type of beer and I can no longer drink anything carbonated. It taste flat or completely disgusting. Everything has side effects and it works for my migraines so I take it. I have to give up pop! Small price to pay.

My doctor did not know what to make of what was going on with me. The vertigo, dizziness, nausea, sometimes I would get headaches, sometimes not. Sometimes my ears feel like they want to pop or they are curling. Being a full time student and working part time to support myself most of the time I suffered through it. Sometime if I were at work I would be forced to go home.

I was referred to a balance center and they Dx right away. I do want to do the Vestibular Rehab, but I have little time for right now and the medication is working fine. Maybe after I am done with school, I guess.

I am happy to find other people with this! It is so hard to find any information on it and even harder with people who have it!

attesa 05-29-2012 06:33 PM

Re: Vestibular Migraine
Just a quick update on my progress.

I've just read through all your replies. It's quite interesting to hear all your stories.

It's almost been 2 years now since it all started. I tried numerous types of medication. Some worked a bit and some didn't. I got off Topamax pretty quickly as it made me feel "spaced out"

I got onto EPILEM 200mg about 8months ago i think, which has really helped me. I'm back at work and can do most things quite now. I used to play Basketball on a weekly basis, but can't anymore. I do occasionally play some Tennis and feel ok.

My Neuro had suggested 2 things to me which might help me out.

1-seeing a pyschologist to see if there are any underlying issues which could be contributing to my condition, as I have suffered from anxiety a bit in the past.

He also prescribed me with an antidepressant called "Zoloft - 50mg" to help ease my anxiety. I've since increased it to 100mg now.

2-Try to get active again ,and do some running/jogging.

I tried to see a Pyschologist but found it useless. They suggested meditation exercises.
I have taken up a Bootcamp style fitness course and i've found it quite helpful (i don't do any excersises which involve spinning around)

One thing I have noticed, is that if I can keep my mind preoccupied (doing the dishes, vacuuming, mowing the lawn etc..) I don't have any symptoms at all. But, as soon as I stop and start thinking about them, it all comes back and i start getting dizzy again.

Could it all just be in our minds?

biteneck 06-11-2012 12:20 PM

Re: Vestibular Migraine
Hi Atessa,
Did you have any strange brain/mind fog. Like you knew you were here but just feel out of it like dreaming with vestibular migraine? I have been talking to a lady online who said she had this for about 4 years and is now 100% back and recovered. She said she didn't take any medication, just worked through it the best she could. She knew of another girl who had this too and she started having it while 8 months pregnant! That would suck! Anyway, this other person is better but still taking medicine. I think she said she was on noritryptline? Not sure of spelling. Please let me know the symptoms you have had with this. I'd appreciate it. Thanks!

attesa 09-13-2012 11:53 PM

Re: Vestibular Migraine
Hi biteneck,

It's now been over 2 years and i'm still suffering from the condition, but it has inproved a lot.
I still have problems when i go to shopping centre or busy/loud places. It also affects me in the cinemas so i've only been to see a movie twice this year.
I know my symptoms get worse if i've had a lack of sleep or been stressed. I usually find myself in bed early and only doing light activities.

I, myself actually feel better when i'm driving because everything around me is moving, therefore it's as if it's all normal.

Have you had any progress?

lyn27 09-14-2012 10:13 PM

Re: Vestibular Migraine
I hope that you get some relief from this soon. I know how hard it is to do things with vertigo especially if it is constant. Like I already wrote it can be many things. For me it may have been related to high blood pressure. I still get the headaches on one side of the head. My Gp said that it was neuralgia it is from posture or stress (tight muscles around the neck). Doctors have to try different things. Sometimes there is no definite answer and just make sure you are as well as possible and in my experience it lessens the vertigo. I had anxiety for years but vertigo is recent.

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