Went to Mass eye and ear and was seen by Dr. Priesol. He did numerous tests...took 1/2 hour. He was very receptive to the history of my event...took notes, and listened. After he did his tests his findings....

He could not see any vestibular problem and he feels I have migraine. Hmmmmm. Well he has ordered and eng and rotary chair test. He said that I could have a small vestibular issue that he is just not picking up. That said, he believes a virus did not hit my ear, and that my remaining symptoms can be taken care of with medication.

I am floored. I go back in January.

He gave me Nortriptyline...and I am to start after the holidays.

Just thought I would pass it along.

Wow! That's surprising .... is it possible that you've compensated for the vestibular issue since it's been well over a year for you and that's why he's not picking it up?

well its good that you have a new diagnosis. did this doctor seem to know his stuff well? i thought i remembered you saying beofre that they found inner ear dysfunction in you. well happy holidays!

Good questions...

Dizzy...I asked the same question. He did a number of tests where he shook my head watched my eyes in these funny glasses...did the epley or so it felt...I asked him that if I had compensated if he would see eye problems or if being compensated it would affect the outcome. He said once you have a vestibular insult, they can pick up small noticeable things that show. He said he did not notice anything. He knows I have been doing vrt exercises for 15 months...

Come and relax, I did not have an eng because I was pregnant and they didn't want to do one on me. They took my story/history of what happened...and put my in the "box" postography...and they said I had a small balance issue. They said it could be aggravated by pregnancy.

This doc in Boston said it really was not helpful. So I have to go in for an eng/rotary chair test. He said he believes it will prove his thoughts. He said it could come up with a small vestibular deficit.

He said the only other option is that I have a small loss in both ears. That said, he thinks that is a stretch. I will wait for the finale decision in Jan.

so did he notice any nystagmas during the tests? i read somewhere (and i could be way wrong) that MAV doesn't usually show eye jerking or Nystagmus

Went to Mass eye and ear and was seen by Dr. Priesol. He did numerous tests...took 1/2 hour. He was very receptive to the history of my event...took notes, and listened. After he did his tests his findings....

He could not see any vestibular problem and he feels I have migraine. Hmmmmm. Well he has ordered and eng and rotary chair test. He said that I could have a small vestibular issue that he is just not picking up. That said, he believes a virus did not hit my ear, and that my remaining symptoms can be taken care of with medication.

I am floored. I go back in January.

He gave me Nortriptyline...and I am to start after the holidays.

Just thought I would pass it along.

Hi

Maybe a good call---lets wait and see what the remaining test--indicate...

:cool:

Exactly, I am being patient and a bit slow to accept it. Don't really have a clue anymore. I have taken a week off from vrts..just to chill.

Happy holidays.

Wow.

I've been waiting for your update and now I don't know what to say!

Good news, right? I don't even know what to make of it but... I think good news!

wow charlotte, that's pretty wild! i am going starting my fourth week of nortriptyline tonight. hope it helps you more than it has me so far, lol. hang in there with the tests! i showed 35% lower function in my left ear, but my doc didn't think that it was inner ear issue, but MAV. whatever. i hope you get yours resolved soon! how are you these days...like % wise??

Alex...my doctor said it takes 5-6 weeks to even start seeing improvement on that medication. He also said it takes tweeking for many...

So keep going.

Went to Mass eye and ear and was seen by Dr. Priesol. He did numerous tests...took 1/2 hour. He was very receptive to the history of my event...took notes, and listened. After he did his tests his findings....

He could not see any vestibular problem and he feels I have migraine. Hmmmmm. Well he has ordered and eng and rotary chair test. He said that I could have a small vestibular issue that he is just not picking up. That said, he believes a virus did not hit my ear, and that my remaining symptoms can be taken care of with medication.

I am floored. I go back in January.

He gave me Nortriptyline...and I am to start after the holidays.

Just thought I would pass it along.

Hi there. First off, the clinical tests that he did in the office are not going to show anything at this point. At the beginning of it all, yes, maybe a couple of months into it, yes, but not at this point. The ENG may show a vesitbular loss in one ear, that's likely, but it probably won't change the doc's thought process. Don't get me wrong, it is possible it is migraine, and it prob couldn't hurt to try the meds if your gut thinks its the right way to go. I do think the docs (other than the top specialists perhaps, based on articles i've read) get that you can have long lasting mild symptoms for a couple of years. What I think even those top docs may not get is that what they consider lasting mild symptoms really still affects our lives and that we're still checking and double checking our diagnosis to make sure we're taking the right route to recovery, and on that journey we get a vast variety of opinions.

You're about in the same timeline of when I went to that dizzy center that the neurologist said that I never had a virus and that the entire thing was caused by anxiety, that there was no physiological way I could feel what I was feeling. He was willing to prescribe a med that would both be anti-MAV (to appease me) and anti-anxiety/depressant (to appease him). As you know I told him to screw himself. Please understand, I am NOT saying your new doc is wrong, I'm just saying to trust your gut and do what YOU think is best.

Hi Charolette,

I've been here in your situation many times in the past three years and it stinks, doesn't it? I don't know what I think about this whole MAV/Labs/VN junk any more. I wonder sometimes if it is any of those dx's at all. That is why I keep having more and more faith in what my neurologist told me back in April that it is damage to my CNS. It makes a whole lot of sense for me with all the anxiety and depression I developed with this junk.

To be honest, I couldn't have said it any better than Michelle. You've got to trust your gut. I honestly think the best meds are time itself and I am speaking this all by experience. I don't know why some of us recover quicker than others or how all the different things that happened to us bring us all together with very similar symtpoms and experiences. What I do think is how we react to this junk makes us feel worse and prolongs it so maybe that is why people like subs recovered quicker than others like myself. I do know since I've been learning and practicing biofeedback I am noticing an improvement in how I feel. I don't know why the few that have tried meds have helped them; perhaps because they did have an underlying migraine factor or a chemical imbalance to their condition as well but I've seen too many on this board try them with no success too.

I think taking a break from VRT (no so sure about VRT either as if you live an active live you are using your eyes and moving about just in everyday simple tasks) and this whole mess for the holidays will be good for you. You can't do anything now over the next week so relax.

Happy holidays. Don't be to bummed as I can honestly say, I have improved over the years and a lot of what holds me back is my tinnitus and the buzzing feeling associated with it which you don't have so you'll get better too with time. We just need the patience of a Saint to do so.

Thanks guys...

Well I am just taking it all in right now. At 16 months, and my last doctor saying that I would have to live with it..I guess having a 2nd opinion is a good thing.

This guy is not just a neuro guy...he speciality is in vestibular neuritis...so I was very surprised he went the migraine route. He did say that the tests he has ordered might show an inner ear weakness and that even if it did his treatment would be to get rid of the migraine, then do exercises.

I have had 2 migraines in my life as a kid. Also, I let him know of my facial pain and tingles throughout my entire life...and he seemed to think it was migraine related. Then he talked about the pregnancy relation...

At the start my vrt always made me really dizzy for the entire day...not the 5

-15 mins that everyone talks about...I guess that made me wonder. Also, since stopping this week...I am left with the feeling of a "hangover" with headache...

So all in all, my decision is to take the medication..give it a whirl...my stomach has been off...it is the same med the docs give to ibs patients...so what the heck. If it is the answer I will know, if not...I will start up vrts again.

I just want to be well....and as you all know, it is a bit of a crap shoot. I feel this man has a wealth of knowledge, and seems to really know his stuff. It is a better answer then "live with it"...make sense?

Not giving in, or up...just trying a new solution....and if that doesn't work, well then try something else..right?

Thanks everyone.

at the very start of vrt its not just going to make you feel not well for 15 mins and then you feel fine. i think its normal to feel like crap the whole day after doing vrt because its mixing up your vestibular system.

i never understood what people meant when they said that vrt should only make you feel bad for 15 mins

Alex...my doctor said it takes 5-6 weeks to even start seeing improvement on that medication. He also said it takes tweeking for many...

So keep going.

wow charlotte--thanks so much for the input! i completely understand about not wanting to go with the last dr's "just live with it" outlook. there is no reason we shouldn't all get an answer and be able to treat this one way or another! i know my stomach was a little messed up the first week of taking the 10mg, so hang in there..no more nausea now. i do have a tad bit of constipation here and there with this med--eww, i know, along with some sleepiness.

did he prescribe you to take it at night? what mg are you starting at?

hang in there! you are doing great...and what could it hurt? you may be 100% even sooner! good luck to you, keep us posted on your progress with it!

I'll have to completely agree with Joni and Gloria. And I understand where you're coming from, Charlotte. Try this new route and see if it works for you.

It doesn't seem like anybody really knows or understands this. Like Gloria, I've often wondered if any of those diagnoses are for real.

I also have to say that the majority of the VRTs did nothing to help with my lingering symptoms. Yes, the balance exercises did and do improve my balance - but they don't get rid of the motion sick feeling nor do they prevent the sudden quick spins I get occasionally. The visual VRTs seem to do nothing at all, with the exception of walking/reading which seems to help clear my head.

So yes, some of the exercises help me DEAL with the symptoms when they occur, but they do NOTHING to keep them from recurring. Something isn't right and I think the doctors/researchers simply do not understand this field well enough to know WHAT is going on in those of us with the long-lasting symptoms.

To echo everyone else: do what you FEEL helps you. Listen to your instincts.

part of me has always belived that VRT will help your body comensate but its time that really heals you. your brain is going to get it when it gets it.

Thanks again everyone, I really appreciate all of your thoughts.

I am not a medication type gal. That said, I still get bad days good days...today I had to take another nap. My head gets terrible pressure...and I feel loads of nausea.

Since stopping my vrts for 1 week, my eyes don't feel as bad at all...and actually the feeling of dizzy seems better but nausea and head pain seems to linger. That is why I think this guy might be on to something.

I don't see how it can hurt...and at this point the chronic nature of this crap is starting to get to me. I would not mind keeping up with all the vrt and the plan I had if that is what he told me would help. That said, he sees thousands of patients...should I disregard his diagnosis?

Again, thanks.

I believe if you stick with this route, you will get relief.

VN is real, but it is also the time-honoured, easy answer to dizziness. It is so much easier to blame it on something that can't be treated, say "oh the exercises will make you feel dizzier" to explain why you aren't getting better, and take no responsibility for whether you get better or not.

Having had this for 10 years myself, and initially waiting 5 years to get the right diagnosis, I would have to say.. the first thing I would encourage anyone with lingering dizziness to do is see a top neurotologist like Halmagyi, Baloh, Hain or Rauch, even if it means flying to another country. If you get diagnosed with migraine (which is INSANELY common.. because it really is the cause of almost all dizziness) - then you have to go hard or forget it. So many people try one med, which may not be the one suitable for them (there are undoubtedly many variants of migraine associated vertigo all with different underlying low level causes), and then give up. Persistence is the key!

Best of luck. You may also find your IBS gets better at the same time as there are very strong links between migraine and IBS. When you consider that your brain controls everything, including muscular contractions in your GI tract, its not surprising that its effects can be so far reaching.

Thanks Adam.

I feel like I am in the 90's most days with 80's when my heady symptoms take over. I rest, and it lightens up enough for me to keep going. My doctor says that most get back to 100%...or close enough to where they don't notice much. He said that there are tough cases...but many take the meds for 3-6 months, reboot the brain...and it goes into remission.

He said then for most they can handle a linger headache or dizzy spell with meclizine or tylenol. He seems very sure he can get me there.

I have to believe I am not stuck here forever. I just have to believe that. So, I keep pushing.

Thanks so much.

Great News Charlotte. Everyone is different and we all are searching for an answer. Believe that this is yours (at least for now) and go with it! It can't hurt, and it may be the answer you have been waiting for. What do you have to lose? you already have been through the mill right???? I think sometimes we rely on this board to help us through and yes it is great for support but you didn't go all the way to Mass Eye to come back and not try what he tells you! At least for the 3-6 months!

I do agree that you should try it. There's no reason not to. If it doesn't work with different meds and the appropriate amount of time, well, it didn't work then. But it might. You just won't know till you try it. Little to lose, a lot to (potentially) gain.

Hi there again. It sounds like you're gut tells you this may be the right path so I'm looking forward to hearing how you do! I hope this is it!!! You deserve relief as quickly as possible. You've worked so hard for it.

Adam- Most dizziness is from migraine? I strongly disagree with that. BPPV? Meniere's? Why would someone have a loss on one side right after an acute vertigo episode if its migraine rather than virus? I know people are frequently misdiagnosed with things by docs who blame things on a virus, I don't think we should throw the baby out with the bathwater.

Joni, thanks so much for your support. Honestly, after really thinking about my food intolerances over the past 10 years...and having a spouse with migraines...I started wondering if that was me after 1 year.

I hoped that things would level off...and all this crap would go...but my head seems to be the main thing I am dealing with. I think trying this, keeping my options open..is not a bad thing. I would hate to go on month after month..if just taking a medication for migraine would help me.

I don't know what the answer is. I am a bit weary of any doctors diagnosis right now...again, feels like a crap shoot. That said, I have to believe that something is holding me back from compensating? Right? I have never had eye issues, I have done all vrts for months...with this crap still lingering, and I have been told by my current doctor that I could be left with this. Well, heck...I really do not have anything to lose.

My belly doc was going to prescribe the same med for my ibs...so what the heck, right? Doesn't seem like it really would be a bad thing to try.

Peace.

Charlotte:

I agree with most that these diagnosis are not black and white and a lot of questioning and requestioning.. I went thru the entire VN process and went for rehab and did my VRT's religiously for 6 months to a year . After having everything for 2.5 years my Neuro - Otologist snet me to a headache Specialist who specializes in MAV. Head Pressure and Nausea are symptoms of Migraine. You do not need a headache. I had those 2 symptoms plus blurred vision plus dizziness. I went on the medications and was stable for over a year. I then tried to see how I was off the medication as many patients stabalize and dont need medeication. I relapsed but not 10 weeks later I am like 95% again on the medication. Like Adam said if you are willing to give the medication a shot you need to give the diagnosis a chance as there are so many medications that work for one and not another. You may have had both VN and MAV and the last hurdle is what the medication will take care of.

Good luck whatever you do but if you choose MAV stay strong and give it time. These medications take months sometimes. The medications wont make you worst.

howie

Yep - BPPV is the only exception. It is very common, I agree - but is also easy to diagnose and treat.
Meniere's is very rare compared to migraine and often coexists with migraine.
You may not have read my past posts on this issue, but unilateral and bilateral vestibular dysfunction are very common in those with migraine only and no inner ear disease - simply because migraine is known to cause peripheral vestibular damage. There are two mechanisms by which this is thought to occur - one is through vasospasm (the blood vessels that supply the vestibular organs runs through the brain), and the other is through ion channel dysfunction.

It has been abundantly clear over the last few years that migraine causes almost all dizziness. In pasts post you would have seen people mention Dr Baloh (who is undoubtedly the world's top dizziness expert - he wrote the textbook on vestibular disorders that doctors use!) saying that 99% of people that come to see him think they have an inner ear disorder but actually have migraine. Hain himself says on his website "migraine causes far more vertigo than any other condition".

It's hard to get people to really understand what migraine is - a chronic neurological disorder - not an episodic headache syndrome. Unfortunately the name migraine-associated vertigo leads people up the wrong path and they often throw out the diagnosis and insist there must be something wrong with their inner ear. The ENG is a useful test in determining if there is peripheral damage, but it doesn't tell you if it was caused by a virus, by migraine or anything else.

There are only so many neurological symptoms you can vaguely attribute to an inner ear disorder before it gets a bit much. Peripheral vestibular damage causing numbness, tingling, visual disturbances, anxiety? These are all central nervous system symptoms.

Hi there again. It sounds like you're gut tells you this may be the right path so I'm looking forward to hearing how you do! I hope this is it!!! You deserve relief as quickly as possible. You've worked so hard for it.

Adam- Most dizziness is from migraine? I strongly disagree with that. BPPV? Meniere's? Why would someone have a loss on one side right after an acute vertigo episode if its migraine rather than virus? I know people are frequently misdiagnosed with things by docs who blame things on a virus, I don't think we should throw the baby out with the bathwater.

Great news Charlotte, thats the way to get down to the nitty gritty. I do believe Migraine is very misunderstood by doctors. Dizziness is an aura.

Happy Holidays everyone!
Cathy

Dizziness can certainly be an aura, but it is not always the case. Auras are usually brief, migraine-associated dizziness can go on for years without a break. There is a type of migraine aura called persistent aura without infarction but there is no evidence yet that migraine-associated dizziness is a persistent aura without infarction.

Hi JoniMichelle,

>>>Most dizziness is from migraine? I strongly disagree with that. BPPV?

The most recent science on this shows that in idiopathic cases of BPPV (ie, where there is no clear cause for the BPPV such as a knock on the head for example), migraine is the culprit in many cases. I can vouch for this directly. The last attack of BPPV I had months back was preceded by massive head pain, some facial pain and with that some disorientation all brought on by a specific trigger. The next morning I woke with acute BPPV on rolling my head from right to centre.

Epidemiology of benign paroxysmal positional vertigo: a population based study
J Neurol Neurosurg Psychiatry, 2007

"We found the strongest association for BPPV with migraine. This association has been described previously. The frequency of migraine was three times higher in idiopathic BPPV than in BPPV secondary to head trauma or surgery. Another study found that the prevalence of migraine in patients with BPPV was twice as high as that in age and sex matched controls."

Best ... Scott :cool:

Thanks again everyone..Howie, so glad you are feeling better...You deserve it.

Adam...when I was pregnant I had terrible water weight added in my 7 1/2 -8 month...and that is when this happened. I was told to keep my feet up, my feet were really swollen. Could this be a factor?

Also, when you say migraine causes vestibular damage what does that mean? If it is not inner ear damage, what does the migraine damage? Does it jus monkey with the signals and so when you take the meds it puts things right? I was told by my neuro that many get stable, come off meds...and never have another episode this bad. He said many might have small inconvienent episodes which can be handled by tylenol and a dizzy med like meclizine short term.

Does this sound correct? Adam, how do you feel most of the time now? Are you off meds, or on them daily.

Jax, thanks again for your support..I very much appreciate it. You are really a friend.

Thanks for starting this post Charlotte, what a great load of information.

If you told me five years ago, when I first came down with my initial case of Labyrinthitis that I would also come to experience BPPV and MAV I would have told you your stretching it and just looking for answers where none can be found, but it seems I have had all three.
Sometimes these things start as one diagnosis and change or morph into others. I had a classic case of labyrinthitis, couldn't walk, couldn't see without my eyes literally rolling in my head, throwing up, just a complete mess. My docotor gave me a gold star for what he said was the worst case of viral labyrinthitis he had ever seen. At the same time I was comoing down with the flu and that turned into a major case of pneumonia which lasted for a month. The doctor said the flu virus had attacked me hard (which, as an aside, was three days after getting the flu shot, NEVER again!!!), and the virus crept into my inner ear inflamming it and causing the labs.
Healing began, VRT's, cross country skiing at night...anything I could do to get back to normal which took over a year, and even then decomp was a regular visitor. But the healing took normal time for labs. So that seemed to be that as I approached 90-100% normal function on a daily basis 2 years later....until wham, I got hit again. AFter suffering with more dizziness and spinning for a month I found this board and my friend's husband who figureed out what the ENT could not see was actually a very bad case of BPPV. So once I learned the MEP and got loads of support on this board I began the road to a dizzy free life again. The labs left me with 37% loss of function in my right ear, leaving me suseptible to BPPV.
Since that time three years ago I have discovered a connection to my migrains (I used to suffer with about twice a year) and now see the connection to what I eat, hormonal activity etc and my "blips" or what I thought were decomps were actually migrainous activity.
So there you have it, sorry for the long post, but I am absolutely sure I have suffered through all three possible inner ear/vistubular/balance disorders!
Labs to BPPV to MAV...
In my line of work my balance is paramount so I am constantly aware of my state in regard to balance etc. and try to deal with it as best I can.
I am a little low these days and have some symptoms but can tell you for sure that the pre-Christmas stress, diet etc are big contributors.
My suggestion to you would be to follow through with this, it certainly can't hurt and you are so right in that any diagnosis is better that the "live with it" regime which sadly many are given.
Enjoy the holidays, and give faith that 2008 will show you the path to a dizzy free life. It is amazing how much more I appreciate life when I am running at 100%, having been on the other side of that you will too.
Peace
FC

Scott and Adam -

Ok, that's interesting. I haven't done much research into MAV myself yet but I will (as soon as this Christmas madness is over. ;)) Meanwhile maybe you could answer a questions for me?

Short recap: recurring BPPV, monthly during PMS time, for 10 (11?) months. Last acute episode treated with Epley, haven't had an attack since (coming up on 3rd month now) but still occasional lingering symptoms. Had ~3 BPPV episodes over the past 5 years before this last one started which cleared up on their own with only very light lingering symptoms.

So here's the question: each time I had an attack, I was in extremely stressful situations. Can stress bring about migraines which could have then caused the BPPV?

I did bump my head a couple of weeks before the first episode 5 years ago (boogie boarding, got slammed into the sand pretty hard by a wave.) MRI came back clear, though I'm not sure it would show anything.

But stress still seems to be the main trigger for my episodes. It's the only thing each onset had in common.


Stress -> migraines -> BPPV?

Possible?

Great thread! I love how every now and then one of these pops up where we all get closer to the real truth of what is really happening.

Firechick - you and I have an almost identical trajectory going on with this thing except that you have had more hassles with BPPV by the sounds of it. You mention Labs to BPPV to MAV. How about this:

migraine first (on a level that was not too much trouble) > labs/VN attack > migraine sticks its hooks into the now upset/damaged/susceptible vestibular system and keeps it going non-stop > sporadic BPPV attacks when the conditions are "right" for such an attack catalysed by migraine.

Sipa -

>>>Stress -> migraines -> BPPV? Possible?

Definitely possible and probably a MAJOR cascading trigger - possibly via migraine (in which case stress would trigger migraine and then BPPV) or somehow a direct BPPV attack induced through stress.

Life events and benign paroxysmal positional vertigo: A case-controlled study
Acta Oto-Lar yngologica, 2006; 126: 987 - 992

Patients affected by BPPV reported more exits, involving a departure of a person from the subject’s social field (eg. divorce), more socially undesirable events (eg. dismissal), more events that they were not able to control and, finally, more events with objective negative impact than controls.

Even if further appropriate trials are needed to understand the role that life events and psychological distress could play in the frequent relapse of BPPV, we suggest that clinicians should inform patients of this association so that patients themselves are aware of a need for a change in their lifestyle or psychological support, or both.

Charlotte - the fact that VRT has done nothing to pull you out of this after so many months and, in fact, has typically made you feel worse suggests migraine. One thing you will see in the literature is that on the whole VRT tends to make things worse when migraine is present.

Happy Christmas ... Scott :jester:

Thanks a lot, Scott. Much appreciated. I'm going to start looking into this more.

Happy Christmas to you :)

It is so often that medicine makes new discoveries and then the pendulum swings to that direction for a period of time. Eventually that information is typically integrated with prior knowledge and the pendulum swings back to the middle. I believe this is the case with migraine causing "almost all dizziness". You guys have shared so much valuable education to people searching for answers and helped so many people find their right direction towards recovery.

But I don't think its fair to discount a vestibular insult that is treated with vestibular rehab. VR is not a "wait and see" approach. Its actively changing a person's physiology and function. Its like saying after stroke you should just take a pill rather than go through rehab. Some people may need pills, they may develop migraines, or other problems, and so that is needed for the individual, but they still need the rehab.

You both had experiences where you went through hell and migraine wound up being your road to recovery. That's fantastic. You found what you as an individual needed. And yes, its probably the answer for a lot of people with longstanding dizziness problems.

I personally recovered through a combo of vision therapy and vestibular rehab. I had a compounding issue that prevented my recovery for a while. And while I was going through that unknown period of time the information you both shared was so helpful for me to assess all the possibilities of what was holding up my recovery. But once I treated my vision problems, that I had compesated for for years and years, but fell apart after the vestibular insult, I was able to recover 100%. There are a lot of other people on this board, or those who have come and gone, have have also recovered via rehab. The research is very positive in this area as well.

Like I said before, all I am saying is not to through the baby out with the bathwater. People receive a lot of education on here that they can't get anywhere else. They should know that migraine is a common cause of dizziness, but not always the cause. Otherwise you're going to have EVERYONE being treated for migraine and they will be missing out on that person's individual key to recovery.

Thanks for listening and I hope you all have happy and healthy holidays.

Joni

joni how long did you have vn and how long did you do rehab?

Hi Joni,

I'm certainly not saying nor have I ever said that all cases of dizziness boil down to migraine (some have taken that meaning out of these discussions on other healthboards and unfortuantely missed the point). Historically BPPV has been given the top position as the most common cause because that is where the best knowledge has been so far on the situation. But I would bet the farm that migraine is - as Prof Hain and Baloh will say - causing most of the trouble and is actually behind many cases of idiopathic BPPV too which is now being teased out in large epidemiological studies (previously unknown). However, of course there are cases where that isn't true. Like you, Subs also had a visual issue that held him back and he soon recovered to 100% after BPPV - that is great that you both hit 100%.

In making a dx of MAV, there are generally other factors to look at other than just non-stop dizziness. From what I know there are almost always triggers (food usually, stress etc) associated with either bringing symptoms on or making the constant symptoms worse. Most will have other stuff going on like unexplained face pain (incorrectly dx'd as sinus infection), neck pain, headache, head pressure, ear fullness, head fog, sudden anxiety/depression - years down the track! It took me 3.5 years to finally see the whole picture. It really requires the person suffering to pay close attention to all symptoms and experiment with food etc and watch what happens - and above all to have an open mind. I was always convinced I was simply suffering decomp for YEARS but it was in fact episodes of migraine. Clear as a bell now but totally unclear then.

Simply taking a pill and not using VRT or other methods is obviously not the only way to deal with a dizzy problem. That would be absurd. There is no question that VRT works for cleaning up dizziness by pushing the brain to compensate particularly in non-migraine cases. And we know this from BalanceinChicago who works in this field daily. Although one study did show that even with MAV, VRT did bring reduced dizziness in some people the consensus is that it does very little when migraine is active and easily explains why VRT is so ineffective in some long-term sufferers (ruling out a visual/eye-glasses problem of course). And this is logical. If a migraine cycle is active, causing neurological problems in some area of balance processing (the inner ear, the vestibular nerve or the area of the brain where balance is processed) no amount of VRT will help - and in fact makes the sufferer feel worse - Dr Rauch will tell you this himself. There is one person on this board who has not been here for a long while. She came down with VN, was severely dizzy, recovered somewhat but has remained locked in a non-stop, low grade dizziness for nearly 5 years. She has been under professional care and they have used VRT endlessly with no effect. Finally they are treating her for migraine (interesting to note that she has suffered with neck pain for years too - even before VN - which is a definite red flag for migraine).

Re: the pendulum swinging to a middle ground in terms of diagnosing dizziness, I don't agree. Vestibular function is tightly connected with brain function (some discuss the inner ear as being a part of the brain or was part of the primitive brain eons ago) and migraine is being better understood as a far-reaching neurological problem that for whatever reason occurs in a lot of people. According to the author of "Heal Your Headache" (neurologist at John Hopkins), we can all develop migraine. The migraine "animal" lies in everyone. It's just a question of whether life events wake it (VN perhaps?) or if there is a genetic predisposition (explains why it runs in families). If anything, I think we'll be seeing a much clearer picture of how migraine interacts with vestibular function and why it affects so many people.The pendulum hasn't suddenly been swinging in an extreme direction, rather small incremental pieces of knowledge have been building for decades and only now are the pieces of the puzzle falling into place.

One other thing to note is that the people who get well quickly (6 weeks for example where it probably is just a simple case of VN or labs) are not the ones hanging around on healthboards. It comes and goes and they want to forget about it as quickly as possible. They probably totally recover. It is those of us where it never ends and seems to endlessly cycle, and who are very good candidates for migraine as the cause, that stay on the boards looking for an answer.

Best ... Scott :cool:

the people who have this for 6 to 8 weeks simply had a virus and it went away. the people who have this for months/years developed nerve damage is what i understand

If dizziness has been ongoing for years, and you are not making progress with VRT it seems sensible to consider migraine. It's not a case of popping a pill - even trialling the meds is a long journey in itself - but there's only so long you can explain VRT failures, neurological symptoms and "blips" before it is time try something else. Even though it is posted here and elsewhere regularly that migraine can cause both a) hearing loss and b) vestibular injury, very few seem to be aware of this and jump to the conclusion that this means the root source of the problem must be a peripheral vestibular injury due to a virus. I get the feeling people think migraine has to be comorbid with something to cause dizziness - i.e. I had VN then followed by migraine..

Some believe the swing to migraine is a fad, and others make statements like "this diagnosis has only been around for about 5 years". Baloh is dismissed as "migraine-focussed" but a quick search of articles shows he has been researching vestibular disorders since the 1970's. In 1992 they were well aware that migraine could cause chronic disabling dizziness, and developed a theory as to how it occurs.

I agree that VRT needs to be tried early and needs to be done properly. Migraine is not always the cause of dizziness, but it is the tough cases that end up on forums like this - those that have only been to their local doctor or ENT who are not aware of migraine-associated vertigo. Too often the failure is blamed on them (anxiety or even dismissing that the dizziness is continuing) and they come looking for answers.

It will be interesting to see how this all pans out in the next 10 years. Research is actively being done to determine the genetic mutations that cause migraine-associated vertigo and Baloh's team seem to be getting very close.

the people who have this for 6 to 8 weeks simply had a virus and it went away. the people who have this for months/years developed nerve damage is what i understand

This would just be speculation - difficult to prove or disprove since you can't visualise nerve damage.

It's possible that those have been dizzy for 2 years have no nerve damage, and those that have been dizzy for 6 weeks and completely recover may have a very severe vestibular deficit that has been compensated for quickly.

Thanks again everyone..Howie, so glad you are feeling better...You deserve it.

Adam...when I was pregnant I had terrible water weight added in my 7 1/2 -8 month...and that is when this happened. I was told to keep my feet up, my feet were really swollen. Could this be a factor?


During pregnancy is a very likely to time to develop migraine-associated vertigo - it has a strong hormonal connection in women.


Also, when you say migraine causes vestibular damage what does that mean? If it is not inner ear damage, what does the migraine damage? Does it jus monkey with the signals and so when you take the meds it puts things right?


I mean actual inner ear damage from a) reduced blood flow to the inner ear and/or b) damage to vestibular cells from ion channel dysfunction. You can certainly have migraine ONLY, and peripheral damage (i.e. a postiive ENG) from it.


I was told by my neuro that many get stable, come off meds...and never have another episode this bad. He said many might have small inconvienent episodes which can be handled by tylenol and a dizzy med like meclizine short term.


Yep sounds fair enough. Stressful life events are always going to be hard to handle though and may cause relapses. I don't believe I personally will ever be able to come off the meds.


Does this sound correct? Adam, how do you feel most of the time now? Are you off meds, or on them daily.


I'm on neurontin, pizotifen and keppra daily.
Have been on pizotifen for 6 years, keppra for perhaps 6 months and neurontin about 1.5-2 years.

Without them I'm not able to function. With them I work full-time in a challenging field (I'm a software developer), run websites and am thankfully able to support my wife and child.

I have been through diagnoses of "nothing wrong", "sinus problems" (for which I had surgery - a big regret), "recurrent VN (they didn't believe I was constantly dizzy, but believed the recurrent vertigo attacks" -- which is when I went looking for a world-leading specialist and found him in Sydney (Halmagyi) and started getting better quickly ...

I'm not a typical case.. chronically dizzy for 10 years and recurrent vertigo for probably close to 20 years now and I'm only 27 years old. The typical case is a female (5:1 ratio) in their 20's or 30's who worsens around their menstrual cycle.

Adam...thanks for sharing your information. I also have a spouse that has had migraines forever. That helps with knowing how to manage this.

Do you ever have times when you are symptom free? Does your neuro say that as you get older, it will decrease...I have read that it does in many.

Well that said, I am glad you can function....and that you can take care of your wife and child. That is all I want to do...take care of my family without feeling shakes, nausea, head pressure and dizzys.

Also, since stopping my exercises my jumpy eyes have become much better and my head symptoms have become overall better. That said, it feels like my symptoms have changed. Also, it feels like at times I feel closer to normal...then 2 hours later can feel like death..only for1/2 hour to pass and feel good again. So my ups and downs are much more hourly then daily? Make sense?

Thanks again.

Can you guys point me towards some good reading on this? Going through dozens of fairly useless websites isn't fun, to say the least. I'd like to be at least semi-informed when I go back to my Dr in a few weeks.

Thanks <3

someone said something about not having nerve damage but can be dizzy for 2 years? my doc actually said the last time i talked to him that i don't have nerve damage but he has me doing VRT. maybe he meant hearing.

how can this be?

also with the MAV ive read articles stating that nystagmus is usally not present and when it is its vertical. thats how a good balance doc and tell the diffrence. anyone else hear that??

joni how long did you have vn and how long did you do rehab?

I had it for 20 months. I did a bout of rehab the first couple of months, stopped because I went back to work and couldn't focus my eyes for even a second and so couldn't properly do the exercises, the therapist had no suggestions. I then did another bout 8 months into it, but again I couldn't really do the exercises properly because of my eyes and things continued to go up and down. This summer I started vision therapy and again started rehab on my own and finally progressed with it consistently.

I had it for 20 months. I did a bout of rehab the first couple of months, stopped because I went back to work and couldn't focus my eyes for even a second and so couldn't properly do the exercises, the therapist had no suggestions. I then did another bout 8 months into it, but again I couldn't really do the exercises properly because of my eyes and things continued to go up and down. This summer I started vision therapy and again started rehab on my own and finally progressed with it consistently.

awesome. im glad your 100% this time im going to keep at it cause i like you did it a couple times and always stopped. how long did it take the last time? im on the 5th day and it made me feel way off the 1st couple days but now notice alittle change

awesome. im glad your 100% this time im going to keep at it cause i like you did it a couple times and always stopped. how long did it take the last time? im on the 5th day and it made me feel way off the 1st couple days but now notice alittle change

this last round i was worse for about 2 weeks i think and then it was an incredible slow gradual improvement. I kept a journal of how i felt on a 1-10 scale to help me realize the improvement because it was soooo slow, but that helped me realize that it was actually happening. I couple of months into it I definitely felt much much better. a few more months and I felt fine tuned.

Hi Charolette,

I'm curious as to why you are going back so soon to the doctors in January. Is it a follow up to see if the Nortriptyline is helping? When will you start the med?

I have to admit, VRT never did anything for me. It made my eyes feel strained and my headaches worse moving my eye balls all around. Walking was what helped the most; probably increasing the adorphines in the brain made me feel better.

I hope this dx works out for you.

Best,
Gloria

Gloria...glad to hear from you.

Going back in Jan for an Eng, and rotary chair test. Never had both due to being pregnant. The doctor wants to make sure that if there is vestibular damage that we get the right treatment.

He said he would be surprised if there was damage, but it has happened before so he wants to be sure.

However, he said that I would have to get rid of the migraine so I could fully compensate....

Whatever, I just want it gone...hahhahaha.

I'm not so sure if those test are useful or not for the doctors. Seems like they have too many things that can sway the results. I never had the ENG done but the rotary chair was performed twice. The first time it showed some abnormality with my eyes moving faster than my central system and vestibular were compensating. I could have told the doctor that as my eyes were not seeing right (lol). When repeated one year later, it showed remarkable improvement (and my eyes did improve some physically). It does seem now that finally after 3 years they are starting to go back to normal. Maybe that is the improvement I'll see this year.

Good luck with the test. Unlike some others on the board, I never had a problem with the rotary chair test. It never made me feel worse.

So do you start the med after the tests? Have you ever taken an AD before?

Hope all goes well with your tests if I don't talk to you before then.

:angel:
Gloria

I start the med before. I have never taken any meds except for benedryl for some allergies when they were bad, or meclizine. Other then that, none. That said, if it helps...yahoo. My doc believes that mass eye and ear have well calibrated machines to help with testing...but that said, could be I have compensated if I do have some damage.

I have given up trying to second guess everything...it makes me nuts. All I want to do is give it a whirl...and see if it helps. After 16 months, what do I have to lose. If in a months or two I see nothing...I will start to rethink. But after 16 months of doing vrts religiously...pushing over and over...never letting down....I feel better after resting more. There are times I feel much better. The doctor said that rest seems to help migrainers more...it calms the system...

Don't know if that is right..but I'll take it for a few days...hahahah

Heh.

Don't tell my doctor, but I stopped doing VRTs. Occasionally I do balance ones because I like them, the home epley if I feel like there might be some positional vertigo coming on, and that's it. Oh wait, walking while looking up/down/left right I still do whenever I go anywhere and the treadmill/reading thing I like a lot.

All the other VRTs made me feel HORRIBLE. And i know the 'first worse, then better' thing.. but I noticed absolutely no change. When I've had this in the past, I've always just taken it easy for a few weeks till it was gone. That meant taking meclizine if necessary, resting a lot, no working out. And it always went away. (Though with some very slight lingering symptoms, mostly due to being afraid of it coming back at a Very Bad Time (TM) I think... ;) i.e. I was scared to go back out into the ocean, driving long distances made me a bit nervous.

Earlier this year when this all started, it was the worst it's ever been. I had HUGE amounts of stress going on too though. My anxiety was through the roof and absolutely uncontrolled, had panic attacks. Man, I felt like crap. What finally made it better is a prescription of lexapro that knocked me out for a week. I slept upwards of 15 hours a day. I felt awful during the awake time (really nauseous, tired, sad) but I didn't do anything during this week. Get up, watch TV, fall back asleep.

Got off the lexapro cause I felt so horrible, and a week or so later the worst was over.

This summer I had an episode and couldn't stop to rest because I was visiting my family and we played golf every day. Literally. For several hours. That's when it got worse again, and that's how I ended up here. Which is a good thing!! :D


Yea, so my point was..... I think I lost it in all the rambling. ;)

(For me) Stress might be a trigger, rest makes it better, no rest makes it worse. So from now on I'm just going to do what I feel helps me. (And some VRTs definitely do help.. just not all of them, and not immediately after a vertigo attack.)

Give it a chance, see how it works. Maybe your doctor finally has it right and this will be it. :)

Good luck Charolette. Hope it works out for you. I tried an AD back in Dec. of 2005 for 4 days. It freaked my whole body out and swelled my thyroid gland. I'm tempted to try another but it scares me to no end especially since my situation started after a severe allergic reaction to an antibiotic. Keep us posted on your progress.

Hi Sipa - Are your symptoms continuous or do they just come and go? Resting your system and trying to steady your CNS so that you don't have that constant fight going on does wonders for your health. I have been going for biofeedback since October and it is really helping me. My anxiety is hardly there anymore. If I could get the depression from dealing with this crap for three years under control maybe I could end this beast.

Best of luck to both of you.

Gloria - I've had recurring BPPV episodes about once a month for close to a year. Last one about 3 months ago. Previous to that, I've had ~3 episodes over the past 5 years, each during times of stress. Those went away though (along wiht the stress.) This past year the stress has been ongoing, anxiety kicked in big time for the first time. Might be why the BPPV kept coming back, I don't know.

I have an appt with a psychiatrist on Jan 7. I need to address the anxiety, as I believe that's what is causing the majority of the lingering symptoms. Light depression might also be present. Ideally I should remove myself from the stressful situation but that is proving difficult - and stressful.

Vicious cycle.

I hope you can get the depression under control. It's horrible.

Hi Charlotte,

Thought this might give you some confidence. Over the weekend there was a story on our local news about a local guy that suffered with chronic sinus problems; life altering for him. He had dealt with it for years and then saw a doctor at Mass Eye and Ear. After treatment, he is fine these days. Thought of you when I heard the story so I thought I'd mention it as it sounds like it must be a good place for treatment.

Best,
Gloria

Gloria, thanks for the pick up.....typical of you.:angel:

:angel: right back at ya!!!

Charlotte- How have you been feeling? Your last updates sounded really positive. I hope its still going that way for you!

JM Thanks for asking my friend. I am still noticing the nausea going, my eyes are still my biggest complaint...but after 1 week on the meds, I feel like the dizzy are lighter...and headaches/face pain are coming back. I use to get those a bit once in a while...and I am wondering if when the wild symptoms start to leave...if the regular crap I use to get might come back for a bit.

Still need improvement...but I think things are improving. It is slow....so we will see as the month goes on.

How are you? Thinking about you and your family.;)

Hey. From what everyone has said it can take a while to get the meds to work and to make sure its the right one. So hang in there! I'm doing really good- although my nausea is out of control, but its all for a purpose this time around so its all good :)

I can totally relate...Keep up all the good work.:cool:

charlotte how are your dizzys after taking the meds?

Dizzy are much lighter, and my eyes are much lighter...still there just more subtle. Been more lightheaded rather then dizzy...if that makes sense?

my problems only seem to be when i bend down to do stuff or turn to fast. charolette do you have that? after i do things like that i get pressure in my head and above my nose.

Give the meds time...you just started them. I bet your head is trying to work it out...

I don't get that per say..but migraines cause tons of garbage like that.

charoltte what is your dizziness like?

also how many mgs did they start you at?

mine is at 25mgs the 1st week and then double it