Any success stories out there?

Hi Everyone,

I have been an off and on visitor to this site for a while. It is always reassuring to read about everyones’ struggles with this stuff. All of us seem to have tried lots of different meds, and it seems most of the time they don’t work or the side effects are bad. Are there any success stories out there? It would be great to have some hope!

Hi rob,

There are several of us here that have had success with treatment. I can say that I am one of them. Most of us have to keep on trying different meds until one is found whose side effects are less severe than the symptoms they are trying to treat.

Myself, my balance used to really suck, fluctuating ringing in my ears, FALLING A LOT, fluctuating hearing, positional vertigo, and a constant feeling of floating.

I still have a couple of my old symptoms, but to a much lesser degree. I now only fall with extreme changes in weather, my balance isn’t the best, but I trust it enough to climb ladders now, my hearing has returned with only occasional bouts of loss, almost always related to an ear infection or something along that line.

I still have my ups and downs, just now the up days are A LOT more often, and the down days are less severe.

Hi Brian,

Thanks for your reply. For some reason my old ID wouldn’t work so I had to create a new one.

Its reassuring to hear that. There are so many of us that are struggling, finding the successes is like finding a needle in a haystack. My impression from the people on this site (and Im sure its a biased sample) is that the majority don’t do that well. Do you think that’s true?

And what medication did you find helpful?

Rob

Rob,
I had the same experience with the ID, then I realized that Adam created a new site: there was a previous version of this forum, I have it on my computer.
I’m also better: I hit bottom in 2003 with a bout of BPPV that made me useless for months. Ulitmately, I was put on klonopin. I’ve slowly improved, and work and play tennis. I still get low grade symptoms, and believe I always will, but try not to let them limit me. My otologist told me that patients tend to find some peace when they accept that this is a chronic condition, and will need some modification of their lives. I find that because “I don’t look sick”: work pushes me to work more, and my family gets tired of my limits. Oh well, we all have our issues.
For me: I take klonopin, and migraine supplements–magnesium 400mg, riboflavin 400mg, fish oil 1gm and coQ10 150mg.
My daughter had severe symptoms that have responded to nortriptyline.
Success is relative, because it’s not gone, but it’s very tolerable, at this point.
Kira

Thanks Kira. It is such a struggle going through all the meds. I find it frustrating that you have to give them so long to work and then if they don’t end up working after 2 months, you are back to square 1. Thats interesting about the fish oil. I have always felt fish oil helps a bit. Perhaps I will try taking more. I have also started taking magnesium. As far as the drugs go, I have been on lamictal and levetiracetam recently and no relief so far. I am thinking about maybe trying acetazolamide or nortryptiline next.

Thanks for your note of hope!

Rob

I had a neurologist tell me that diamox–which you’re considering is a wonderful drug for migraine associated vertigo. My otologist tells me he’s seen some responders. I know a very educated woman with migraine, who takes diamox before long plane rides–I believe it’s an extra dose, as she may be on it chronically-to avoid the migraine that flying frequently causes, because it’s a lot like high altitude headache, and diamox works well for that.
Re: the nortriptyline, my daughter had to find the right dose for her: 50mg was too much and 25 mg too low. So, 30 mg has worked well for her. Her neurologist told her that he had a patient who needs 65 mg–less than that, his headaches come back.
It is frustrating, and all the ignorance out there adds to the frustration. I’m sick of copying the eMedicine article for all the providers–the first version of it, written by Dr. Battista was my favorite. My husband had to read the article to understand what we felt, and he’s a healthcare professional.
Hang in there.
Kira

Thanks for your reply Kira. Does your friend also have MAV, or just migraines? Do you know what dose she is on? If she ever comes on this message board, I would love to talk to her.

Hi,

I just wanted to say I have had some success since finding the right drug. I got ill five years ago. Finally - about a year an a half ago I took a beta blocker - propranonol - which stabilised me - had a pretty good year, then a relapse for 7 weeks, I upped my dose of the drugs and am mostly back on track. I have to try and avoid emotional stress, tiredness, certain foods - all of which can bring on symptoms. I am not out of the woods but am able to lead a normal life for long periods of time.

A friend of mine took pizotifen having been ill for over a yr with MAV. She stayed on it for 2 yrs (I think) with huge success, came off it and has been well for over a year since then. She does actually seem to be completely rid of it bar the very odd couple of hours intermittently of feeling slightly spacey.

Having lived with this for five years I guess I am anticipating that I may always have to deal with it as a constant potential problem. A depressing thought. They say migraine works in cycles. I guess some people get lucky and it just runs its course and they don’t look back. Who knows, maybe one day we will all be one of those people.

H

Thanks for you post Hannah. I really hope that we all get to that point, at least of having a prolonged break from the symptoms. I think you are right, that it will probably remain a problem lurking in the background for most of us, if only we could find a way to keep it under control as much as possible. That is interesting about Pizotifen and Propranolol. I have heard people say that sometimes the older drugs are the more effective ones. I hope you keep doing well.

Rob,

What I have found works for me is Depokote, Klonopin, magnesium, a modified diet, and attempts at reducing my stress levels.

Brian

Rob,
I don’t think she’d mind if I told you who the migraine patient is: it’s Teri Roberts, who is a migraine patient and advocate, who has published books, and runs two web sites. She currently has a new national website that I have a hard time navigating, but her personal site is:
helpforheadaches.com/

She has been a great resource for me, and although not a healthcare professional, she knows a great deal about migraine disease, consults with experts in the field, and has made it her mission to educate and assist people with migraines. She published a book about migraines.

Kira

Hi all,

Am new to this, and new to MAV. Have posted my story, actually felt compelled to…just to get the garbage off my chest. Can’t believe how long this has been going on for me (20months), but am gobsmacked at how long some of you guys have been dealing with it. As much as I am sadened by so much suffering by so many people, I’m relieved to find that there are others out there who understand my very own predicament. I’m seeing a neurologist in Sydney, Australia, who specialises in dizzy/migraine disorders. I was fortunate enough to go through from hospital visits, to ENT specialist and then neurologist, without too much mucking around.

My question to my neurologist though (I suppose like most) was…how long will this take and will I get better. Whilst he was a bit vague on the time-frame, he definitely confirmed that I would recover from this. Was he telling stories, or jollying me along??? My ‘gut feel’ now, is that it’s a chronic condition, which will improve over time (that is my great hope), but that my lifestyle will have to be altered to accommodate some of the prevailing symptoms. I’m due to see my neuro in February and I’m planning to have a frank discussion about my future, which I hope he’ll be totally honest with me (I’m hoping he really believes I’ll get better!).

Anyway, as I’m controlled daily by this condition, part of my symptoms definitely stem from vestibular malfunction. My helplessness to rehabilitate myself physically (apart from meds), and lack of control over my recovery, frustrates me greatly. Lucklily, I’ve visited an Occupational Therapist who was wonderful and gave me exercises to follow, which definitely reduced some of the dizziness. I wanted to do more though…and then he suggested that swimming (bi-laterally) was the best dizzy exercise in the business, so I’ve started on a swimming regime. I started swimming half a kilometre, twice weekly and have gradually increased to 3 times, and now daily. I am definitely feeling better and less dizzy and will keep you posted on the outcome (not recommended to start swimming before undertaking dizzy exercise regime from OT first!). I’ve still got a long way to go, and I’m sure many of you have already given this a go, but I thought it was worth letting a few of you know who may have vestibular difficulties like myself (for what it’s worth!).

Anyway, will keep you posted on improvements (if any…but hopefully!!)

Dizzyblonde

I can completely understand your frustration. I tried to “cure” myself with sort of violent vestibular rehab–although I’d had symptoms for years, I had a bout of BPPV that started the severe bout in 2003. I was going to get the offending crystal out of there. I literally banged my head to the point I’m sure I did some damage. One night I couldn’t stop the spinning, and actually managed to page my oto-neurologist on a Saturday night: I don’t think anyone has ever paged him before, because he works out of two hospitals, and the local one has no idea how to reach him. He told me to quit the exercises, and just take klonopin.
That was a horrible time. I was so sick all the time, and so limited.
I did ultimately switch to another otologist, who gave me the MAV diagnosis to explain the lack of recovery. He feels that it is chronic, but will slowly improve.
I find that to be true. I’m better, and can work more, but have my limits. Only recently would I go back to live perfomances–but I get an aisle seat.
The other problem, I find, is a fear of relapse, or getting the symptoms. I’ll avoid potential triggers, and that limits my life.
And, realistically, I do have limits.
Personally. I play tennis. I can tell I’m better, because I can look up when I serve now. I can only really handle doubles. But tracking the ball is really helpful for me.
It’s a chronic illness, it’s “hidden”, it’s disabiling, it’s under-recognized or flat out denied, and that all adds up to frustration.
I’m stable now, but I live with it.
It’s great that you found a good OT and that swimming helps. We need to celebrate our successes.
Kira

youve just got me talking to my hubby about meds that ive tried over the years.
when I started having vertigo (rocking attack, ) after my first international flight ,
I had this for a year while travelling,
my persistant brain fog and memory problems derectly related to this illness, I had frogotten about this.
when I came home I had the normal vestibula tests, and MRI,
the ENT’s said mal de debarquement, and prescribed NOTHING,
so I went to a GP , he put me on zoloft, after 3 weeks I was symptoms free.
The reason I had put this out of my mind, (denial) was because the side effects I had on this drug was for me! overwhelming, insonia, teath clenching, felt NOTHING no emotion , at times it was PHYSICALY hard to talk.
or even want to converse at all, I just lay on the couch all day.and eventualy started thinking constantly about KILLING MYSELF,which I had never had any inclination prior to taking this drug.
I’m now wondering if this was due to Gp overdosing me, and wonder if a low dose would help some of you who suffer every day with the hideous spinning ect.

while on zoloft Ive did go into remssion for a year while on it,
also travelled done contracts overseas gone on boats, ect
with no return of ( rocking swirling )
I’ve noticed some people have said that Dr hains talks about using this drug.
up untill today I had shut the whole zoloft episode out of my head , due to what happend,
the docs told me after a year “if its causing me such anxiety and depression” then just go off it,
WELL I DID JUST GO OFF IT, with out tapering, I honestly nearly died, I ended up having hullicinations and a sphycotic break, thanks to the good old gps.
so as you can imagine , I’m not happy to report good stuff about this drug!
but maybe at a very low dose it could help some of you.
I’m even considering a low dose trial for myself.
jen

jen,

you know i get confused easily girl… so are you saying you lost all your symptoms while on zoloft for a year, then got off of it, and all your symptoms came back???

Hi Dj , i was just answering ur email from mdds page, hope ur ok?
have you had the op yet?
no I went into full remssion,
untill I stupidly went sailing, at the time I didnt know boats could trigger it, and alot of partying.
(red Wine) naughty!

but due to the horrible with drawal, i refuse to go on it again,
dough!oops dough!
he he

I’ve also had some improvement with Zoloft, but I had to titrate up at very small increments - i was cutting those pills into sixths. And even at that snail’s pace, at one increase in dosage, I had hallucinations. I had to go back and start over and even more slowly. I’m up to 37.5 mg now (doc wanted me up to 75) and the arousal aspect, with teeth clenching and insomnia, are getting to be too much. So I’m holding at that dosage and have added Neurontin which has helped a lot. I’m about two weeks into titrating, very slowly, and feel better every day.

I’m hopeful about this one.

Julie

thats interesting Julie, they put me on 100mg all at once, no wonder I was losing my mind.
damn Gp’s, they know nothing about meds, from what I hear you should alwasy be seeing a phsyciatrist when dealing with phsyc meds they have learned all there is to know about meds. not doc’s.
best of luck Julie fingers crossed hey.
jen

100 mg!!! That’s a lot of Zoloft. In the US they typically start a patient at 25 mg for two weeks, and then 50 mg, and then, I believe, leave it there, unless there’s reason to go up. And cold turkey off of 100 mg must have been heck!

Yep when I first took it I lay there for months hardly even talking, then when I went off it cold turky
I cried myself to sleep and when I’d wake i couldnt tell If I was still asleep or not.
I had a complete breakdown. during this breakdown I still sang every night on stage.
my husband didnt know what I was going through, untill I said take me to the hospital I’m going mental I need help. Now.
after 2 weeks things started to settle.
we never talk about it realy. I preffer not to as it still freaks me out.makes me feel physicaly ill
hugs jen