Hello, everyone!

I was just wondering if any of you who have been diagnosed with MAV could share with me your major symptoms and how often they affect you. I'm also curious about how they impact your daily life...have you gone through a period of severe constant impairment, or has the dizziness been episodic and/or more mild?

I'm still trying to figure out if I have MAV. My symptoms: I'm dizzy 24/7, it had a sudden onset, first five weeks I couldn't read b/c of nystagmus issues (also nausea those early weeks), slowly slowly slowly getting better (almost 4 months now), fatigue very easily (but getting better), some anxiety and depression, which have gotten somewhat better. Also depersonalization, especially at the beginning; some headaches throughout. One weird thing is I feel much worse when my blood sugar is lower, maybe b/c that makes me a little dizzy too.

Thank you for any thoughts on this!! I've been seeing some specialists, but I'm also interested in others' experiences.

--Violet

Hi Violet,

My symptoms began about 2 years ago with a very vague wooziness. I chalked it up to allergies, weather, what I ate etc.... then the woozies became pretty constant. My blood pressure was elevated, so the doc tried me on a diuretic. This was not the answer. About as the months went on, I definately was getting more nervous about being out and about with this one symptom. I also had what I call short episodes of "shifting" this is where everything in front of me moved back and forth...one time it was for about 5 minutes, the next it was about 10 minutes in length and then I was sitting out on my front porch visiting with neighbors and I felt that woozie, shifting thing begin, but this time I couldn't keep my balance and I went in to my house, quite frightened and this episode lasted maybe 20 minutes...noone seemed to know what was going on with me. The finalbiggie, came in May of '07. I was having a very hectic morning, the stress level had been heightend for me and I was in the shower when I felt this shifting feeling come over me. I tried to keep focus on the showere wall, but was realizing that nothing was going to stop this particular episode. My heart was racing as I tried to step out of the shower, mind you with everything in front of me moving all over the place, and took a towel covered myself and went to my room to lay down. I thought if I lay still, this will calm down.....no such luck. I called my neighbor over, who took great care of me as I began vomiting all over the place. I couldn't stop the vomiting, as everything kept moving in front of me. I called 911, they came took me to the ER. I stayed the night and a oto-nuero came in and began to evaluate me. He did ask if I had a headache with this which I replied "no". I was given the diagnosis of VN or Vestibular neurstis. I was sent home with his protocol and told that I will never have to deal with this again....I WAS better for a few days and relieved that that whole incident was behind me. Well, the woozies returned. the Doc couldn't explain this. I was scared to death, as I kept thinking "I will be out and about and the shifting will begin again" I asked my regular doc for a brain MRI, this was normal, all my inner ear tests came back normal, I tried VRT and this only made all my symptoms worse. By Thanksgiving, I was having more and more symptoms like, I couldn't turn my head without it feeling like my brain wouldn't stop moving, or I would feel like there was a magnet on the top of my scalp,really weighted and heavy. I was getting more and more depressed, I couldn't eat as the nausea was just horrid almost all the time. As I kept looking all over fro a DX, I kept coming back to MAV. After a couple of months of this horrendous place I was in, I found out I had a family history of Migraines. I never had a migraine....or so I thought.....I actually had been having non-headache migraines and I didn't know it. Finally I took my new family info to my ineer ear doc and he started me on Nortriptalyne. This has been a very very long road with lots of downs. I got the book "Heal Your Headaches" by Dr. Buccholz. It seems that I have been having migraine symptoms for a very long time and the time in the shower, my threshold was very very low....hence the big attack. I have been on meds now for about 4 wks and am seeing improvement. My symptoms are still with me daily, but much much less. I still get the woozie, but I notice now that it is brought on by my "triggers" I also struggle with light sensativity, inner "brain" movement, my face feels like it is wearing off of novacain sometimes, I still get the nausea sometimes etc. I am sorry this is so long, but I remember wanting to know other stories and to see if some of my bizarre symptoms might be happening to others. To wrap up, I was definately unable to function for many weeks. This added to my despair, which then really aggrivated my symptoms. I hope this helps.

Pam 3

Hi there...
Mine started 8/08/06...I was 8 months pregnant. I woke up in the morning feeling off...bit lightheaded...but it passed and I chalked it up to the pregnancy. Took a nap at 4:30...woke 1/2 hour to spinning vertigo and sickness...got sick over and over. Rushed to the er...after 2 hours of severe vertigo. They did tests and nothing showed an issue with the baby...they sent me home 6 hours later with meclizine.

The next morning I was in a fog, huge! I had bad balance and was horrible with motion...I could barely think or do anything. I had full ear, sore face and temple and scalp, fog, could not think, bad imbalance, woozy when moving, terrible light sensitive, smell sensitive...could not drive well, hated taking showers it was too hard to my eyes, bouncing vision...

That said I was diagnosed by my local dizzy doctor with vn in Sept 06. I did vestibular therapy for 15 months until my doctor said I would just have to live with the remaining life changing symptoms.

I went to Mass eye and ear in Boston...where they did numerous tests showing no inner ear involvement...I then got diagnosed with MAV. 3 months later on 20 mgs of Noritriptyline..and feeling so much better.

What is remaining...on good days, a tiny bit of the woozys. On bad days, headache, woozy, motion sensitive, smell sensitive...it is much, much less..and my doctor is stating I should get right back to 100%. The only thing that has elevated since taking the meds are more headaches...they are getting less though.

I am following the diet too...

Pam after 4 weeks you are doing great! It is such a great sign that you are feeling that good after such a small dose! GREAT!

Pam & Charlotte--

Thank you so much for sharing your stories with me!

Pam, your experiences with shifting sound very unsettling...I can't believe the things one endures with these problems!!

"I couldn't turn my head without it feeling like my brain wouldn't stop moving, or I would feel like there was a magnet on the top of my scalp,really weighted and heavy."--I can relate to these two feelings. I hadn't thought of describing it as a magnet, but I have indeed had that kind of experience--really wacky perception problems, especially outside.

Charlotte, I can't believe you went through that when you were 8 months pregnant...that must have been very scary; pregnancy can be worrisome without any additional health issues. I have little ones myself and have been struggling with how to be a good mom through all this.

I am so glad you are both feeling better with the meds. I'll keep that medication in mind if I can't shake this thing.

--Violet