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Old 07-11-2007, 07:39 AM   #1
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Length of time of VN?? could it be something else

I have had this horrible thing for 2.5 years. From what I read on the internet, most VN cases resolve in average of 6 - 12 months. Has anyone had VN for more than a year, year and a 1/2????? And I also read that the bouts should get better as time goes on. Mine get worse and sometimes better, but they are all different. My main sympton is rocking, swaying dizziness with nausea. It comes and goes.
I just thinnk that if it was just VN it should have gone by now. I have been to 5 doctors, neuro's, etc, ENT's, neuro-oto, and they all say "possible" VN, but no one is too sure. I tried VRT and it didn;t help.
My ENG was normal. MRI shows non specific white spots consitant with migrane.

 
Old 07-11-2007, 08:40 AM   #2
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Re: Length of time of VN?? could it be something else

Quote:
Originally Posted by rachel4123 View Post
I have had this horrible thing for 2.5 years. From what I read on the internet, most VN cases resolve in average of 6 - 12 months. Has anyone had VN for more than a year, year and a 1/2????? And I also read that the bouts should get better as time goes on. Mine get worse and sometimes better, but they are all different. My main sympton is rocking, swaying dizziness with nausea. It comes and goes.
I just thinnk that if it was just VN it should have gone by now. I have been to 5 doctors, neuro's, etc, ENT's, neuro-oto, and they all say "possible" VN, but no one is too sure. I tried VRT and it didn;t help.
My ENG was normal. MRI shows non specific white spots consitant with migrane.
I've had this thing for 16 months now, and have had a pretty up and down rollercoaster of it all, mostly down, but definitely not as bad as the initial episode. VRT didn't help me either for the first two bouts of it, but I wasn't doing it right- my eye problems were preventing me from doing the exercises correctly; getting new advice for modifications on here, I have been able to start them again and am seeing baby step improvements. I don't know if its going to work, but I am going to be persistent at least for several months and see. Given the positive tests you had for migraine, have you tried eliminating any migraine triggers and seeing if that helps??? Have you tried any migraine medications for MAV, migraine associated vertigo. This can occur after VN in some people, making recovery more complicated.

I hope this helps. Best of luck,
Joni

 
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Old 07-11-2007, 11:06 AM   #3
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hbep HB Userhbep HB Userhbep HB User
Re: Length of time of VN?? could it be something else

Hello Rachel,

Yes, it does sound very likely that it is something else. Howie has just written an excellent description of VN versus MAV and how his neurologist makes the call that it's MAV under the thread started by Scotsman - 'Any use for VRT with Migraine' - can't remember the exact title but something like that.

In short when you have tried VRT but don't see the required results after giving it a good go, generally you'd want to start looking in to migraine associated vertigo. The symptoms can be the same as VN but generally they will try the VRT route first to see if it is VN and if it resolves. If you have signs on your MRI that are actually consistent with migraine that could be another big indicator. I was the same as you - diagnosed with VN - showed some signs of improvement but kept relapsing badly and just didn't get well. The magic bullet for me was a drug called propranonol which I didn't start till about 3 yrs in to this horror. It is now completely clear that either I had VN that progressed in to MAV or had MAV all along. About a year and a half ago I developed severe light sensitivity during the periods of time I still felt dizzy. This is consistent with migraine - so it was a bit of no brainer that migraine was causing the dizziness too. Although I am a bit of an oddity in that generally, as far as I can tell MAVers don't necessarily get the light sensitivity.

You probably need to be quite pro active. Read up on migraine associated vertigo. There are many drug options. See a doctor again - ideally one you think will be open to discussing a different diagnosis and trying out different migraine medications. I'm not sure why your doctors are simply giving you the shrug shoulders line of diagnosis. At the neurotology clinic I go to they generally know about this condition - will try VRT first and then move on to the migraine drugs. That said, I did push the diagnosis, told them I thought I might have it (my grandmother had migraine) and that I wanted to try the drugs.It took a while to find the right one, it's trial and error, some just didn't work, but I did find one as most do and am glad I did. I can still get symptoms - in fact I'm having a bit of a blip right one, but touch wood, I have my life back and spend long periods of time feeling normal. I was unrelenting dizzy prior to the drugs for a good two to three years, can't remember exactly.

best,
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Last edited by hbep; 07-11-2007 at 11:08 AM.

 
Old 07-11-2007, 12:11 PM   #4
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Re: Length of time of VN?? could it be something else

thanks Hbep...
I have thought about MAV, but my neuro wasn't too sure on that.
I don;t really get painful headaches anymore. But I read that you don't need to..
My question is how long did your blips last? Mine can be anywhere from 1 week to three weeks. sometimes I go months in between, but sometimes only 1 or two weeks in between. Did you have any other symptoms besides dizzyness? ANy neuromuscular symptoms?
thanks

 
Old 07-11-2007, 02:38 PM   #5
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Re: Length of time of VN?? could it be something else

Hi there,

At first I was dizzy constantly - this lasted abot 18 months, then I got a bit better but was never totally right. If I'm honest I can't remember what happened in between then and getting on to the drugs exactly. And also it's confusing with me as I may well have started with VN which caused the MAV problem to surface. However I definitely have MAV now and can tell you that my bad relapses tend to last about two months, although I can have much shorter bursts of symptoms that hang around for anything from a couple of days to a week or two.

I was curious what neuromuscular symptoms you were talking about so had a quick look at some of your old posts. So much of the stuff you describe points to migraine. The stabbing pain behind one eye - the tension headaches - tension headaches are a bit of a myth and are actually often migraine. The sensations you describe in your body - buzzing, pins and needles, heaviness in your limbs etc can sometimes be attributed to migraine and sometimes to anxiety - which you are clearly experiencing a lot of because you are stressing over MS. Migraine is a combo of activities in the brain - one of them being the expansion and contraction of blood vessels. What area this affects depends on what symptoms you get. There are people who never experience a migraine headache but experience only optical symptoms - weird vision etc. Some people get a numb limb, other people can have stroke like symptoms and some people, like us, experience dizziness.

We are a similiar age and one thing I do know is you should be giving yourself the best shot you have at getting out there and enjoying life again, free of this dizzy horror. You have seen numerous docs about MS and they don't think you have it. The more you worry about it the more likely it is that you will experience anxiety symptoms which can mimic MS. I was convinced I had MS for about two weeks at one point. My arms kept feeling heavy and weak, I got tingling in them, I was so sure I had it I had almost resigned myself to it. I talked to my brother in law who is a GP. He told me I was probably hyperventilating through anxiety - he was right. I stopped stressing the weird arm stuff went. The docs have got a point when they mention migraine. It sounds like you are very scared of trying a migraine drug. I'm sure in the long run it would be much less scary than all the anxiety you are feeling over your symptoms and MS anxiety. If this is migraine the chances of it dissapearing without medication are slim. Once you are stablised on a drug you can come off it, but you need to take it first. I have tried many, some didn't agree with me, I just came off them. Why would you reject your best shot at getting better? Take your courage in both hands and try a drug.

By the way I have also experienced the buzzing in my body, it was either anxiety or migraine, I don't know which.

best,
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hbep

Last edited by hbep; 07-11-2007 at 03:28 PM.

 
Old 07-11-2007, 08:36 PM   #6
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comeandrelax HB User
Re: Length of time of VN?? could it be something else

hey. recovery from VN can be an average of 2 years. i asked my doctor if feeling off and being better but still off days and bad moments was normal after 20 months and he said absolutly. it just gets better slowly over time.

 
Old 07-12-2007, 01:20 AM   #7
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Re: Length of time of VN?? could it be something else

Hi ComeandRelax,

Your doctor is absolutely correct, two years is often quoted as a the period of time to recover from a stubborn case of VN, but your case is different from Rachel's. As far as I know you have been showing consistent improvement with the odd blip or setback here and there. With Vn people also often have setbacks related to a cold or a virus. That's fairly standard for VN. Rachel isn't saying that she has got consistently better. If someone is still struggling a lot after two and a half years, especially is they have other symptoms that could be consistent with migraine, it's worth trying a migraine preventative.

best,
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hbep

 
Old 07-12-2007, 06:12 AM   #8
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Re: Length of time of VN?? could it be something else

Thanks Hbep,
I really, really appreciate all your info and advise....makes me feel a lot better.
Yes, anxiety is a big player....
I am getting married in Nov, and after that, I am going back to the neuro to see about starting on migraine meds or perhaps anti - anxiety meds or something.....
I'll keep ya posted. Hope you are having a dizzy free day...
Rachel

 
Old 07-12-2007, 06:48 AM   #9
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Re: Length of time of VN?? could it be something else

Hi I had the same diagnosis as you and have had this for nearly 22 months now, it's definately better than the first 6 months, but still lurking, setbacks are up and down as you say.

Good Luvk with your wedding plans, and don't get dizzy on love
Jayne

 
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