Please help!

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.

Many thanks,

Melly

HI Melly,
I’m so sorry you are having such a hard time. I’m not an expert on these things but my guess is that you may be on to something with the migraine diagnosis. Maybe it’s time to see a neurologist or neuro-otologist (neurologist who specializes in inner ear and dizziness issues). They would probably help you more than an ENT.

I think the constant dizziness, fatigue, and numbness, as well as the close family history of migraine, makes it possible you do have a migraine problem.

See a neurologist or neurotologist. My guess is they can help you more.
I hope you feel better soon.
Joy

Hi Joy ! I have seen several neurologists who have only told me they don’t think it’s brain related. I have never seen a neuro-otologist though. I looked them up to see if there was one close to me and there are several but I’m not sure if I have to have a referral to go. I also don’t know if they will accept my insurance. I will have to call tomorrow and see what I can find out. Thank you so much for your kind response and advice. I really appreciate it.

Melly

Good luck I hope you get some help soon!
Joy

melly where do u live? you need to see a neurotologist or otoneurologist a regular ent or neuro prob wouldnt know about mav. sorry to hear you have been brushed off for so long that is terrible!

Hi Sarah, I live in Columbus, Ohio. I didn’t get to call around today because I have been dealing with other financial issues but I am hoping to call around tomorrow. You are right about being brushed off. When they can’t find anything life threatening they don’t even bother trying to figure it out. They don’t understand how awful this is and what it takes to be able to just get out of bed in the morning. To me this feels life threatening and scary !

Thank you for taking time to read my post and respond. I really appreciate your help.
Melly

Your story, although mine does not go as far back, reminds me very much of me. I think you do probably have mav and I am still trying to get better myself. I see a headache specialist and the migraine diet has helped me some-- I am super strict with it, almost afraid of eating anything different. I just wanted you to know I know about exactly what you are feeling. I have the swimmy, bobbing, boat feeling, too. Try and really be aware of scents, for me, anyhow they are really a trigger-- even minute amounts. I do wish you luck.

can you start the migrane diet now as that may help you? - in the UK we are told to avoid the 6 'c’s - caffeine, cheese (and some other dairy), chocolate, chinese or anything with MSG in it, Citrus and Chianti and other red wines. Also to make sure you have regular sleep and gentle exercise. A good book in the US ‘heal your headache’ will give a US view on what to follow on the migrane diet.
In the meantime, do try to get to see a neuro-otologist.

Hello -

LPeers - Yes, it does sound like you are having the same symptoms as me. Thank goodness you were able to find out what was causing yours.
I am sensitive to certain scents and try to avoid them as much as possible. Thank you so much for replying and I hope you continue to see improvement.

Cathbones - I have just found out about the migraine diet and got some things that I think are safe to eat. I am going to try that for now until I can get in to see someone. I really need to work on a regular sleep pattern. This is going to be hard for me as I am fatigued a lot but still don’t sleep well. Praying something gives me some relief. I found a MAV doctor through this forum in my state and I guess he is supposed to be one of the best according to what I read here. I called today and I have to have a referral to be able to see him but he does accept my insurance which is a good thing. I go to see my regular doctor on the 31st and I am going to see if she can give me the referral. I am sure she will as she seems willing to do whatever she can to help me.
I will have to look into getting the book you mentioned. Sounds like a good place to start. Thank you so much for your advice, I will follow all of it as much as I can. Thank you all for your support and kindness.

Looks like you are headed in the right direction. Hang in there and let us know what happens!
Joy

Hi there,

I am so sorry to hear you are going through such hell but glad you have found this wonderful site and had some really helpful comments.

I just wanted to recommend the book depository for buying the heal your headache book, postage is free worldwide and they are always the cheapest books I can find :-

bookdepository.com/

Good luck in getting that appointment and ask specifically about MAV or Vestibular Migraine. Print off some info from this site to take along to your appointment too. It appears many medical professionals still don’t know very much about it.

Angela
x

PS. You could also try a good quality magnesium as this should help with your sleep too. x

I found freeda vitamins are the very few I can tolerate-- they are pure and on amazon. I am not trying to push a certain brand, but trying to help…they have no fillers, artificial ingredients, etc. I like them. I wish you well.

Than you both ! I will look into the magnesium but do you know if it’s safe to take with blood pressure medicine ? I am also allergic to sulfa so I don’t know if that would be a issue. I get really nervous taking anything new because of the bad reaction I had with a sulfa drug. I am really sensitive to meds anymore.

I will also check out the link that you have sent for the book. If I can get it cheaper then that’s the route I want to take :slight_smile:

I am really glad I came across this forum. So many helpful people, what a blessing. Sometimes it’s nice being pushed in the right direction when you aren’t sure which way to turn anymore. Thank you all so much for your support !

Benzos such as valium can cause or exacerbate depression. A point to remember if you take them daily.

— Begin quote from “mellyellow”

Than you both ! I will look into the magnesium but do you know if it’s safe to take with blood pressure medicine ? I am also allergic to sulfa so I don’t know if that would be a issue. I get really nervous taking anything new because of the bad reaction I had with a sulfa drug. I am really sensitive to meds anymore.

I will also check out the link that you have sent for the book. If I can get it cheaper then that’s the route I want to take :slight_smile:

I am really glad I came across this forum. So many helpful people, what a blessing. Sometimes it’s nice being pushed in the right direction when you aren’t sure which way to turn anymore. Thank you all so much for your support !

— End quote

Glad you are finding such good support here.

I have no idea if magnesium is safe to take with blood pressure tablets but I’m sure staff in a health food store or pharmacist would be able to advise. Good luck.

Angela

Methanol - I was not aware of that. I actually only took it twice in the past two years because I cannot tolerate the tiredness that comes with it. It used to not bother me in the beginning but it does now. Thanks for the warning, I am already depressed enough.

I will ask my pharmacy before taking anything just to be sure.

Thanks
Melly