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Old 02-20-2008, 06:47 AM   #1
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MAV--not VN--is this possible?!

Hello, all--

Well, after 11 weeks of suffering from what I thought was VN, a neurootologist just diagnosed me with MAV--I am just flabbergasted! Can this problem make you feel so horribly bad for weeks/months on end? The first six weeks were the worst, but I still feel dizzy everyday. Bad headaches on and off, fatigue, and queasiness periodically too. (oh--also anxiety and some depression, just for more fun and games! )

I am just amazed! She felt it couldn't be VN-unless it was a mild case--because that water/ear test (caloric test?) was normal. She said it just couldn't be normal even if I had compensated.

So, she prescribed the migraine diet and Paxil--10 mgs/day.

Has anyone had this kind of experience? If so, did you try stuff like ginkgo/magnesium/diet/exercise instead of prescription meds? Also, did you also feel bad every day for a long time? Does VRT relate to this problem at all?

You can see I have lots of questions...would love to hear any and all feedback...Thanks so much!!!

 
Old 02-20-2008, 08:59 AM   #2
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Re: MAV--not VN--is this possible?!

Violet
I think there are lots of people on this board who have suffered for years with MAV issues which only get resolved once the right dose/combination of meds is found, often by trial and error. I don't think you can substitute the meds with herbals and supplements.

I understand that the caloric and ENG/rotary chair tests are a good indication of vestibular damage or not. At least they have shown that I have left side damage at a level that is significant and thats how they were able to give me a diagnosis of vn and rule out MAV. I think our gp's and ent's give the labs or vn diagnosis too easily and without the tests they cannot know. The way my specialist described the difference is that vn causes actual damage while MAV sufferers have no nerve damage or cell death but suffer from a kind of interference, and so the signals between the vestibular/ocular sytems and the brain get scrambled, causing dizziness and all the other stuff.

Sounds like your are with someone who knows what is going on - I would follow their advice and see how you go with the meds.

 
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Old 02-20-2008, 04:05 PM   #3
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Re: MAV--not VN--is this possible?!

Quote:
Originally Posted by dollydd View Post
At least they have shown that I have left side damage at a level that is significant and thats how they were able to give me a diagnosis of vn and rule out MAV.
If only that were true, it'd make life so much easier ...

Last edited by amww; 02-20-2008 at 04:05 PM.

 
Old 02-20-2008, 05:59 PM   #4
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Re: MAV--not VN--is this possible?!

Quote:
Originally Posted by violet6 View Post
Hello, all--

Well, after 11 weeks of suffering from what I thought was VN, a neurootologist just diagnosed me with MAV--I am just flabbergasted! Can this problem make you feel so horribly bad for weeks/months on end? The first six weeks were the worst, but I still feel dizzy everyday. Bad headaches on and off, fatigue, and queasiness periodically too. (oh--also anxiety and some depression, just for more fun and games! )

I am just amazed! She felt it couldn't be VN-unless it was a mild case--because that water/ear test (caloric test?) was normal. She said it just couldn't be normal even if I had compensated.

So, she prescribed the migraine diet and Paxil--10 mgs/day.

Has anyone had this kind of experience? If so, did you try stuff like ginkgo/magnesium/diet/exercise instead of prescription meds? Also, did you also feel bad every day for a long time? Does VRT relate to this problem at all?

You can see I have lots of questions...would love to hear any and all feedback...Thanks so much!!!
Violet...I wish I could find a doctor like yours...someone that could actually tell me something about my 8+ year battle. I'm planning to make a trip to the UPMC and hopefully I'll get some answers and someone who will truly understand what I've gone through and STILL going through.

 
Old 02-20-2008, 08:53 PM   #5
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Re: MAV--not VN--is this possible?!

Hi Violet,

>>>She felt it couldn't be VN-unless it was a mild case--because that water/ear test (caloric test) was normal. She said it just couldn't be normal even if I had compensated.

Personally I think it's a little premature to throw out a VN dx on that basis alone. The caloric test is not reliable at all and is prone to a lot of error - mainly human error. Mine was negative too but I am certain I was initially hit with VN 4 years ago. There was a definite acute phase for me when it hit and I had severe symptoms then I haven't had since. Sure you might be a migraineur and, if so, Paxil will likely make a big difference in your recovery but I think it's too early to know. Did you have migraine activity of any kind before this started? Run in the family at all?

At any rate, 11 weeks is early days for some people after having had VN. If you listen to the movie clip by Dr Rauch (in the Archive) on vestibualr compensation, you'll see that the recovery phase takes quite a while.

Best ... Scott

Last edited by studyin; 02-20-2008 at 08:54 PM.

 
Old 02-21-2008, 03:37 AM   #6
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Re: MAV--not VN--is this possible?!

Violet
last time I saw my neuro-otologist I asked him whether a sudden onset acute vertigo, which I had, was one of the reasons for ruling out MAV and he said no, that MAV can come on very suddenly, and vn, although often sudden onset, does sometimes creep up on people.

 
Old 02-21-2008, 04:25 AM   #7
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Re: MAV--not VN--is this possible?!

>>>i just wanted to add the Paxil will do nothing for migraines. Paxil is an antidepressant but won't do anything for mirgraines. i was told this by a neurologist ...

Time for you to find a new neurologist:

Horii A. Mitani K. Kitahara T. Uno A. Takeda N. Kubo T. Paroxetine, a selective serotonin reuptake inhibitor, reduces depressive symptoms and subjective handicaps in patients with dizziness. Otology & Neurotology. 25(4):536-43, 2004

Hays P. Paroxetine prevents migraines. Journal of Clinical Psychiatry. 58(1):30-1, 1997

Black KJ. Sheline YI. Paroxetine as migraine prophylaxis. [Case Reports] Journal of Clinical Psychiatry. 56(7):330-1, 1995.

Staab JP. Ruckenstein MJ. Chronic dizziness and anxiety: effect of course of illness on treatment outcome. Archives of Otolaryngology -- Head & Neck Surgery. 131(8):675-9, 2005
CONCLUSIONS: Selective serotonin reuptake inhibitors are effective for patients with CSD (chronic subjective dizziness) and anxiety.

Tomkins GE. Jackson JL. O'Malley PG. Balden E. Santoro JE. Treatment of chronic headache with antidepressants: a meta-analysis. American Journal of Medicine. 111(1):54-63, 2001
Twenty-five studies focused on migraines, 12 on tension headaches, and 1 on both. Nineteen used tricyclic antidepressants, 18 serotonin antagonists, and 7 selective serotonin reuptake inhibitors. There were no differences in outcomes among the three classes of agents studied or by the type of headache (migraine vs. tension), quality score, length of treatment, or percentage of patients lost to follow-up. CONCLUSION: Antidepressants are effective in preventing chronic headaches.

Scott

 
Old 02-21-2008, 04:58 AM   #8
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Re: MAV--not VN--is this possible?!

Thank you so much, everyone, for all your feedback!

I was very curious about her choice of Paxil, and I haven't started it yet. I am trying the migraine diet, but I will take the medicine in a few weeks if I don't see a difference with diet and exercise. Plus, I imagine it might take the edge of the depression that has cropped up for me with this problem. I'm just a bit afraid of taking it for some reason...I guess I'm afraid of feeling worse.


Scott:
Thank you for your thoughts on the caloric test. I thought I also had read that it only tested some of the ear canals and not all...I still feel that VN could be a possibility; perhaps it has been involved and has triggered some kind of migraine syndrome. I do have a history of rather bad headaches, but none that I ever identified as migraines. During this 24/7 dizziness attack I've had since Dec. 1, I've had very bad headaches on and off, but it all started with severe dizziness, and I have never had a good day. However, it was worse the first six weeks (especially first 2-3 weeks). Also, I've had bouts of anxiety, which are directly related to how dizzy I am.

Do people with MAV feel dizzy every day? Dollydd--very interesting about the onsets of these illnesses. I am still just astonished to be dealing with it!!

 
Old 02-21-2008, 05:08 AM   #9
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Exclamation Re: MAV--not VN--is this possible?!

I just found a very interesting study that addresses the accuracy of the caloric test...it says that some cases of VN are missed with the test because of where the nerve damage occurs. I am unsure of whether or not I have the VN or the MAV, but this is certainly interesting either way...

Last edited by moderator2; 02-21-2008 at 06:13 AM. Reason: posted commercial website

 
Old 02-21-2008, 05:37 AM   #10
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Re: MAV--not VN--is this possible?!

MY attack started with severe vertigo and went into chronic eye head symtpms dizzys...I was diagnosed with mav Dec 2007.

 
Old 02-21-2008, 05:23 PM   #11
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Re: MAV--not VN--is this possible?!

Can VN recur over and over?? That is...can it occur..then get better over a period of a few days and then come back months later??

Last edited by scsiguru; 02-21-2008 at 05:23 PM.

 
Old 02-21-2008, 05:28 PM   #12
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Re: MAV--not VN--is this possible?!

>>>Can VN recur over and over?? That is...can it occur..then get better over a period of a few days and then come back months later??

HIGHLY unlikely.

Low recurrence rate of Vestibular Neuritis: A long-term follow-up
Neurology. 2006 Nov 28;67(10):1870-1

The long-term recurrence rate of VN for the entire follow-up period was 1.9%. In both patients, the second occurrence of VN affected the contralateral ear with respect to the initial manifestation (one left, one right).

Patients rated the clinical degree of symptoms of their second occurrence of VN as 70% and 50% less severe than the initial complaints.

Best ... Scott

Last edited by studyin; 02-21-2008 at 05:29 PM.

 
Old 02-21-2008, 06:10 PM   #13
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Re: MAV--not VN--is this possible?!

Hi Violet,

>>>I thought I also had read that [the caloric] only tested some of the ear canals and not all ...

The caloric test does not produce absolute values – normal nystagmus slow-phase velocity can vary from 8 to 80 deg/s; the stimulus persists between irrigations and this can confound the whole test. There are also technical hurdles... electrooculography (EOG), the method generally used to measure the nystagmus, is bedevilled by drift and artefact and it is not easy to derive reliable nystagmus velocity signals from EOG. The patient must be kept alert throughout the test, the test must be done in darkness and not with eyes shut. There can be problems with irrigation due to wax, exostoses or perforations; air and water-filled balloons produce less reliable results than the traditional warm- and cool-water irrigation. Finally there is no agreement on who should do the test and on who should train the person who does the test, and in many places it is not performed with the same attention to technical detail as are hearing tests.

>>>...perhaps [VN] has triggered some kind of migraine syndrome. I do have a history of rather bad headaches, but none that I ever identified as migraines.

If you read "Heal your Headaches" by neurologist David Buchholz of Johns Hopkins University you'll see that he classifies nearly all headaches as some form of migraine. The sort that puts you in bed with the lights out is a severe form. Migraine can be *partially* active causing regular headaches, neck pain, face pain and sinus problems. They come and go depending on your trigger load and where your migraine threshold happens to be on a given day. If you were prone to this before VN hit (which sounds probable for you) then migraine can/will act as a complicating co-factor making your recovery very slow or near impossible. Migraine seems to get its "tentacles" stuck into the vestibular system - and maybe an attack of VN is just the thing to tip the balance. Of course for some there is/was no VN at all and migraine simply starts to mess with the vestibular system be it the inner ear itself, the vestibular nerve or the vestibular nuclei in the brain (processing centre). But whatever it is, you will probably need to kill the migraine component to get out of this mess. To do that quickly there are a whole pile of drugs out there to trial - beta blockers, Ca+ channel blockers, antidepressants (SSRIs or tricyclics) or anti-convulsants.

>>>Also, I've had bouts of anxiety, which are directly related to how dizzy I am.

This is *very* typical and something I put up with too. There's a very good article out there that explains this phenomenon well:

Migraine-anxiety related dizziness (MARD): a new disorder?
J M Furman, C D Balaban, R G Jacob, D A Marcus
Journal of Neurology, Neurosurgery & Psychiatry 76(1):1-8, 2005

Two CNS disorders, migraine and anxiety, have been recognised as being commonly associated with dizziness. These associations may be an expression of an aetiological relationship, for example, dizziness caused by migraine, or dizziness caused by anxiety; alternatively, migraine or anxiety may influence the presentation of a balance disorder. For example, chronic dizziness may become more disabling during the added stress of a migraine headache or panic attack. In addition, dizziness occurs comorbidly with both migraine headache and anxiety disorders. Finally, there is increased comorbidity between anxiety and migraine. Thus, it is not surprising that some patients with dizziness may suffer from a combination of a balance disorder, migraine, and an anxiety disorder, a symptom complex that we propose to name migraine-anxiety related dizziness (MARD).

Best ... Scott

Last edited by studyin; 02-21-2008 at 06:13 PM.

 
Old 02-22-2008, 04:13 AM   #14
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Re: MAV--not VN--is this possible?!

Quote:
Originally Posted by scsiguru View Post
Can VN recur over and over?? That is...can it occur..then get better over a period of a few days and then come back months later??
After VN the brain starts to compensate and make sense of the signals it is getting and so you start to feel better. What can happen at any time, weeks, months or even years later, is a decompensation episode when everything goes pear-shaped again and it can put you back almost to where you started. They say however, that as time passes decompensation attacks get less severe, less frequent and recovery is quicker. This seems to be happening to me; I had 3 big decompensations in the first year after my initial attack but it is 15 months now without a big one, just a couple of smaller episodes and I now have some days that a dizzy free, not many but its a start.

 
Old 02-22-2008, 04:42 AM   #15
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Re: MAV--not VN--is this possible?!

Quote:
Originally Posted by violet6 View Post
Do people with MAV feel dizzy every day?
Violet, can you describe your dizziness. When you say every day, do you mean just for a split second at sometime during the day or do you mean dizzy for most or all of the time? From some of the MAV sufferers on this board it seems that it can be 24/7, but I have never experienced that, not even at the absolute worst just after a vertigo attack. Balance and wobbly floor syndrome has been the worst thing for me but the dizzies have been just a sudden short spin, always linked to doing something, like looking up into a cupboard to reach for something, or looking side to side to cross the street. Its a split second then it is gone and I have noticed it usually happens later in the day, when I am getting tired, so my eyes go walkabout. And some days, very few and not enough, are now dizzy free which I put down to just grinding away at vrt.

 
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