I´m new here.

I got BPPV two years ago. I´ve been getting treatment for posterior, anterior and horizontal canals. This helped me getting better with my fatigue and the rocking sensation. But for the last year the treatments haven´t worked. I´m dizzy almost 24/7. If I just sit still I can have a good day. But when I move around I get this pressure in my head- followed by vertigo, phonophobia. This turns into headache and muscle tension in head/ neck.
The BPPV specialist say they can´t find BPPV (I don´t know what those glasses the use are called…but it´s something with laser and computers attached to them (What is this called?). Sorry, my English is not so good.But at the same time they can see that my eyeballs move when I close my eyes. Their theory is that I can manipulate my nystagmus when eyes are open- even though I`m not focusing at anything. They think I still have BPPV- but what to do when they can´t see the nystagmus?

Then- I went to a neurologist. He says there´s no doubt I suffer from MAV. He was really upset when he heard I´ve been getting BPPV treatment for so long with no results the past year.
He has given me anti epilepsy medicine and I really hope these will get me better. I don´t know who to trust and I´m scared they will never find out what makes me feel so dizzy. I´ve been at home for two years and I get so much anxiety from this situation.
I should also mention that my own voice seems loud inside my head and that I feel that laughter and singing makes the dizziness worse ( I´m a professional singer/musician, so it´s quite important…) The worst trigger if physical activity.

Questions for you:

  1. Do your eyeballs move even though you don´t have nystagmus? Can this be muscles-spasmes or something like that? Or does this have to be nystagmus?
  2. Do you recognize my symptoms?
  3. Do you get more dizzy in the morning? That´s a BPPV sign for me, but as mentioned before, they can´t find the nystagmus in all these positional tests.One of the specialists says there´s no BPPV left. The other one says there is (according to my symptoms)
  4. Are you feeling worse in the morning (nausea, foggy/ heavy headed)? And also dizzy when changing positions?
  5. Should I trust the neurologist or the BPPV people (= specialist BPPV and Meniere´s)

(They have checked me for SCDS and that picture was negative. At least that was god news :slight_smile: )

I really appreciate answers from you guys.

I forgot to tell you that I also get MUCH WORSE with hormonal changes, but as far as I know all vestibular disorders do. I get days with really bad head ache and much worse dizziness.
And I also forgot to tell that they actually find nystagmus sometimes, but mostly not. One day there is downbeating and upbeating nystagmus, but to little to get treatment. Three weeks later there´s no nystagmus at all. I don´t understand this. Can MAV cause nystagmus?

Hi Anne;
Not sure where you are in terms of living; however you may want to read the book written by David Buccholz head your headache 1 2 3. He speaks specifically about the fact the MAV has similar symptoms to BPPV and if the treatment for BPPV does not work than treat MAV.

My niece developed BPPV from migraines was treated for BPPV and it immediately stopped the stymptoms.
I have had symptoms of BPPV with my MAV and not had BPPV.

Good luck…

Thank you SO much for your answer!!
I will order that book immediately. Are you on some kind of medication? How does that work for you?
I´ve been wondering if I should be examined for perilymph fistula because of this thing with my singing triggering dizziness. Does talking, singing etc trigger MAV symptoms as well?

I´m so thankful for your answer and your book advice:)

Hi Anne;
This is my fourth bout of MAV since my early twenties. Had it a 25. Then again at 35. Wasn’t really bad until 40. When I was 40 and it hit, the symptoms where worse than ever. Use to think I had MDDS because I would feel better when I drive. Now I know better. Nonetheless I was good for the past two years with maybe dizziness evey 6-months when I was stressed, tired and ate bad for many days. I always choose to go the natural route, diet and just time; however this time I went back to Dr Buccholz and told him I needed some help. He started me on nortrypline 2-weeks ago. Only on 10 MG now will titrate up tomorrow to 20 mg. He wants me to go slow to minimize the SE. At first the meds made me really tired. I hate meds so I was extremely anxious in the beginning. So tomorrow should be fun because I am sure I will feel that sedation again. I am rockly all day with dizziness in the morning. I believe anxiety and depression are worsening my symptoms and so does my Dr B. He is wonderful Dr. Read his book. I have done so much research. I watch everything I eat. Try not to let yourself get depressed because I swear that makes it worse. Not sure if the meds will help but the titrating takes time. I will report back when I can. Feel free to ask any questions. I have visited several drs at John Hopkins, Boston (Dr Rauch). I chatted email with Dr. Hain. Read many books and now I am crazy!!! As for the fistula, unfortuanately I underwent 7 fistula surgeries before the Drs at Hopkins told me that was not hte cuase of my continal balance issues. Not to say you don’t have it. I have pressure sensitivity when any pressure is applied to my right ear. when I use to fly I used ear plugs. One time at a party working by the big speakers the music came out and knocked me nearly to the ground. I do hear chewing in my ear when I eat. I was checked by the Dr’s at Hopkins for superior canal dehiscence, but it was negative. Fistula are funny. It can be there so maybe you should get it checked. Prior to all my surgeries the pressure sensitivty was mild, now that I have had so many surgeries its strong when pressure is applied. I do not believe that is the reason for my continual symptoms because I was better even with this issues for many years. Feel free to ask me any questions. If I have any typos sorry! I just joined a few days ago.

Oh and by the way all my vestibular tests were normal 5-years ago, but I refuse to undergo them again as it does not matter. At the end of the day if its an ear issue most compensate when they stay busy and do VRT. However I do not find this with MAV.

I´m so sorry to hear your story! Seven surgeries!! Where do you live? A friend of mine highly recommended a doctor in the US. He has treated a lot of people with fistula. And many of his patients have been going through surgeries like you. I can´t remember his name, but I can check with my friend if you´re interested. A lot of people have travelled to the US to get help at his clinic (people from Scandinavia). I think she named him dr.G But I don´t know what his clinic is called. She got well without surgery- after going through three years with constant dizziness.
What tests did you go through when you were diagnosed with fistula?

I really hope you will respond well to the meds you got now!!

And I really think you´re right concerning anxiety and depression. It makes the whole thing worse. I am constantly stressed and depressed because of my situation…My “balance doctor” says it worsens the symptoms a lot. They still think I have BPPV but in the anterior canal- a canal most of the doctors ignore (he says….Is he right??) My nystagmus has always been vertical, downbeating mostly.
Right now I choose to trust the neurologist and hope (and pray) that the meds will work out fine for me too…As long as the BPPV treatments haven´t got me better the past year. They actually made me worse.

Hi Anne;
I have had surgery in NYC, Baltimore and Pennsyvannia. Several different drs. they performed all the balance test ENG, rotary chair and then this test where they put goggles over my eyes and applied pressure to the affected ear to see if they could record any dizziness.
That was many years ago. Good luck and keep me posted.

Ok. Thank you- and good luck to you too! Keep me posted :slight_smile:

sorry i am jumping in late here, ladoren 7 fistula surgeries??? were these all on the same ear? did u have any sort of trauma that ur drs. think might have caused it? did u lose any hearing before or after any of these surgeries? did they see a fistula when they opened u up? sorry i should prob send u a pm bc i am getting off topic here.

Hi Sarah;
It all started when I was 25, I started to feel off-balance all day. Went to a local ENT who performed a fistual test. It was positive. When they appied pressure to my right ear the room would shift to the right. The ENT told me to rest for 6-weeks that it typically heals on its own.

Went back 6-weeks later same symptoms, but he said he was gone. Went to another dr in NYC and said it was there. Nonetheless, NYC dr operated but I still hand the symptoms for many months. Then they went away for 10-years. That’s when the fun started. when I was 35 went back to the Dr they said it came back. Operated many other times, nightmare several drs. but never really had relief from the surgeries. And yes 7 in the right ear over a period of 15-years. Then Dr Rauch told me when I was 40 and the nightmare rocking and dizzies started again that my ears would not be giving me that many problems. And that I had vestibular/silent migraines. John Hopkins said that was the root cause from the beginning. some people cevelop fistula spontaneously, born with them and most have them from trauma. I chatted with Dr Hain a fews years back about my fistula and he said some are just stubborn to cure. The specialists told me that most times during surgery they don’t see the fistula so that just assume its there and patch the entire oval window. The inner ear is a size of pea. And no luckily I do not have any hearing loss. Well that was five years ago testing. I do have some tinnintus. People should beware. I have been told that they are hard to cure and most times they fail and people need to be re-operated on.
Let me know if you have any other questions.
Lisa D

wow, so if they never saw one and u never felt relief maybe u didnt have one to begin with?? so hard to tell. did u just wake up dizzy or was there trauma? have u had any luck with mav meds yet? thats pretty amazing that through 7 surgeries u never had hearing loss, i guess that is one thing to be grateful for. so u had 10 years completely symptom free???

Hi. Yes was symptom free from age 25 to 35. Then from 35 to 40. Then from 41 to 46. Right now I am taking 10 mg of nortrypline. Neuro wants me to inc by 10 every two weeks. I am going slow. I will increase this weekend. I have rocking off balance some dizziness slight headache and head pressure everyday. I am completely depressed and cry with panic attacks everyday. My gp is working with my neuro and told me the another day that I am in complete panic mode all day and that I need to take something to keep me calm. Started taking xanax .125 mg a few days ago. It helps but knocks me out. Dr said if I do not get aniexty under control I will not get better. My saving grace is that I can drive and my sypmtoms go away. When I asked if I developed mdds from my mav dizziness. Dr buchholz said the mdds is nothing more than a migraine. Dr hain however does not believe mav patients can drive and feel better. Needless to say regardless I have this dreaded condition. Looking forward to better days.