Hello ! This is my first time posting and I have not been diagnosed with MAV but was diagnosed with menieres in 2005. I am really not sure that I got a right diagnosis because most people I have talked to with menieres have attacks and not dizziness everyday all day.I had heard of MAV but didn’t really think that is what I have until I found out that you don’t have to have a headache with it.
This first started for me 14 years ago after a day at the beach. I was driving home and got a sudden and severe attack of vertigo. I managed to make it home and went to bed thinking I had just had too much sun. The next day the vertigo was gone but I was left with a rocking sensation that made it hard to walk or stand very long. It was constant with no end. This went on for awhile before I went to the doctor about it. When I did go he said he thought it was anxiety and started me on anxiety medication. I took this for awhile and it did absoloutely nothing to help. Even though I went back to the doctor time after time he kept saying the same thing.
So one day I had a spell where I felt like I may pass out and went to the ER. They admitted me and done a battery of tests, MRI, EEG, EKG, Echocardiagram and blood work. They found nothing but a small meningioma tumor in my head but the neurologist assured me it would not be causing these symptoms and it was harmless and that I just needed it to be checked periodically to make sure it doesn’t grow. Which I have and it hasn’t changed in almost 9 years.
So I ended up switching doctors and the new doctor wanted me to go to an ENT. When I went to see him I had more testing such as the ENG and hearing tests. He said I had a little low tone hearing loss and my caloric test showed a weakness on the right side. So he then diagnosed me with menieres disease.He then started me on a diuretic and valium as needed and a low sodium diet. I had a bad reaction to the diuretic and ended up in the hospital. The valium helped
but I wasn’t supposed to take it everyday so I was still not really having a normal life.
He sent me to vestibular rehabilitation which did help some and I regained some of my life back.I was still dealing with dizziness everyday but it was manageable.
So I went on like that for awhile and then in 2008 I went through a nasty divorce and had a really rough time dealing with it. I had to start working again and rebuild my life.I walked away and gave him everything just to be done with it. Even though it was a bad time I still was doing pretty well with the dizziness but was an emotional wreck from everything. Then in 2010 I started to feel really fatigued but still had to work to make ends meet. I had a spell at work one night
and the emergency squad had to be called. I felt really fatigued and dizzy and things just felt weird around me. They found nothing wrong at the hospital and just prescribed me valium when they learned I had menieres.
Well, I tried to go back to work and managed a few days but had to be drove there. I felt so bad I knew I couldn’t do it anymore. I made an appointment with my ENT since the divorce I hadn’t been back to him. He said he wanted to redo all the testing since it had been awhile. Everything including hearing test came back perfectly normal. I asked him if he still thought I had menieres disease and he said yes. He wouldn’t prescribe me any valium until he did a test to check
for BPPV in which I had to come back for. When I went back for it the lady who did it said I didn’t have it and she would ask the doctor what he wanted her to do. He told her for me to make an appointment to come back. By this time I’m really frustrated because I am living in hell and can’t get any relief
and he is running me back and forth and I can barely leave the house and it’s very hard to get there because I’m so sick.
So I just gave up going because it was obvious to me he wasn’t going to help.After the testing came back normal I began questioning his diagnoses anyway. The dizziness was also different this time because I felt so tired with it and had some numbing sensations on my face and hands.
I started seeing another doctor who has been doing major testing and so far everything has came back normal. She said she was going to send me to a doctor who specializes in dizziness and they would e calling to make an appointment.Well I got the call Friday and it is the same ENT I have been seeing. I told the woman I have been there before and I didn’t think he could help me but made the appointment anyway for the 2nd of January.I was really hoping she was sending me to someone who specializes in only dizziness =(.
I am having a really hard time walking around as I feel like I am in a fun house and the floors are moving and I am trying to keep my balance. My eyes feel funny like when you first get up and your vision takes awhile to adjust but it is all day. Not everyday but some days. The dizziness is constant and I never get a break from it. As the day goes on it gets worse and I have to lay down a lot through out the day. I am really getting depressed with it and losing hope.
When I saw this board and many of you have the same symptoms it made me wonder if I too have this and have never been properly diagnosed. I remember having some dizziness as a teenager but never severe enough to affect my life. I had headaches in my 20’s and early 30’s though not a lot but when I did have them they were unbearable. My mom has always had migraines that made her sick to her stomach and my dad was diagnosed with migraines when he had trouble speaking and moving and he had no head pain with his.
The symptoms I experience are :
Feeling as if I’m walking on a moving floor and trying to keep balance. even the muscles in my legs will tighten and get sore from this.
Feeling a dizzy sensation or whirling in my head
A feeling as if the blood is drained from my face
A numbing sensation on my cheeks and mouth
Feeling like I can’t have a conversation because I can’t focus or my words slur and come out wrong
My eyes feel unfocused or blurry and sometimes I will have a smoky or foggy vision
A general weakness
Sometimes I get weakness in my left hand and wrist that mainly effects my ring and pinky finger
-My motions can sometimes be clumsy and uncoordinated. Drop things a lot or spill the
There are many more but these are the things I deal with daily. I am so scared something is wrong that they aren’t finding and I am really at a loss as to where to go or what to do, especially when feeling this sick and not thinking right. Sometimes I wonder if life is worth living this way. My regular doctor prescribed me valium and I cannot take them now as they make me so tired and non-functional even more. I wonder why that has changed when they used to help ? Also I have tried to do the same exercises I did in VRT and I just can’t do it because they make me so sick now. I don’t remember them making me feel this bad before.
Any advice you can give or your thoughts would be greatly appreciated. I am so desperate to feel better.Any thoughts on why I got better and am now to the point I can’t do anything ? Is anyone this bad off with dizziness ? Thank you so much for taking the time to read this. I know it’s long but wanted to try to give you as much info as possible. Hope I posted in the right place also.