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Old 02-11-2008, 06:08 AM   #1
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New to Vestibular Neuritis/How Long/Disability?

Hello, all--

Many thanks to all of you for your posts, which I have been reading for the past 10 1/2 weeks (ever since I was hit hard by VN in Dec. of 07). A few quick questions for those of you familiar with this issue...

*Why does most of the medical literature say a person will typically feel better in a few days to 2 or 3 weeks after VN? Is that even possibly true? I think I was able to sit up after about 2 1/2 weeks...now I move about and can drive a short way & do some household tasks but still feel horrid. I only took Antivert for a week in the beginning...no other meds; also have been doing some forms of VRT since about week 4 or 5.

(Note: from what I've read here & heard from other folks, it seems like recovery more typically takes at least 3 to 6 months, with some people having symptoms up to a year or year and a half later.

*I am considering staying out of work for a while and applying for long-term disability. Has anyone had success with this? My neurologist seemed doubtful about my being able to get it for this problem.

Thanks so much!

 
Old 02-11-2008, 09:33 AM   #2
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Re: New to Vestibular Neuritis/How Long/Disability?

Hi Violet
some people do get over vn very quickly, have just one attack and are back to normal in a few weeks, but lots don't. I read an article which I have found very helpful because it described very accurately what has happened to me; it describes the initial severe phase as lasting a week or longer with recovery taking another 2 to 3 months. Then it goes on to say that in some patients 'recurrent attacks of vertigo lasting days or weeks recur over a period of many months or years. This multiple attack variety of vestibular neuronitis occurs in up to 43% of patients, and is more common in younger patients and in patients who have suffered a more severe intitial attack of vertigo'. The author raises the possibility that this more severe and prolonged version of the illness is 'probably related to the degree of cell death in the vestibular neurones'. Typically, these repeat attacks get less severe and happen less frequently over time. Also you can get decompensation, when the brain seems to forget what it has relearnt with vrt, and that can set you back again, sometimes almost right back to square one.

I am not that young but I did have multiple and very severe vertigo episodes at the beginning and felt very unwell for at least 3 to 4 months. I am now in my third year of this (it started in Jan 2006). Sounds like you got diagnosed very quickly and got started on vrt early, which is good. I did not get the right diagnosis for 2 years, although I got vrt after 15 months, which I am still doing today.

So I have assumed that the very prolonged duration of my vn is in part due to the severity of the initial phase and in part due to the amount of damage done and therefore, it is taking my brain a long time to rewire. My neurotologists in London have told me I am doing well and they do not see 2 - 5 years recovery as anything unusual.

As regards work, my view is that sticking with it is part of the recovery process and the more you withdraw from everyday stuff, the slower you recover. It may be easier for me as I run my own business but I have done 19 trips to Spain, 3 to Ireland, and attended several seminars as a speaker since I got sick, and although I have been very dizzy and unbalanced on occasions, I have always got through it and no one has ever known I had a problem. Now, comparing how I am now with how I was 18 months ago I can see a huge improvement - I can now work a full busy day whereas just a few hours was too much before. I will be very tired sometimes but I just go to bed earlier. The rule with this illness is the more you do the easier it becomes and the more you fill your mind with other things the less you think about it. This is something I am finding very difficult - to stop thinking about it all the time.
Good luck

Last edited by dollydd; 02-11-2008 at 09:37 AM.

 
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Old 02-11-2008, 01:55 PM   #3
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Talking Re: New to Vestibular Neuritis/How Long/Disability?

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

Many thanks to all of you for your posts, which I have been reading for the past 10 1/2 weeks (ever since I was hit hard by VN in Dec. of 07). A few quick questions for those of you familiar with this issue...

*Why does most of the medical literature say a person will typically feel better in a few days to 2 or 3 weeks after VN? Is that even possibly true? I think I was able to sit up after about 2 1/2 weeks...now I move about and can drive a short way & do some household tasks but still feel horrid. I only took Antivert for a week in the beginning...no other meds; also have been doing some forms of VRT since about week 4 or 5.

(Note: from what I've read here & heard from other folks, it seems like recovery more typically takes at least 3 to 6 months, with some people having symptoms up to a year or year and a half later.

*I am considering staying out of work for a while and applying for long-term disability. Has anyone had success with this? My neurologist seemed doubtful about my being able to get it for this problem.

Thanks so much!
Hi

Yep---Long Term Care---can be difficult---u might want to see a:

NEUROTOLOGIST (not a Neurologist)---since that is the Medical Specialty that is/has the indepth training---in that/this area.....assume ur talking about Long Term Care Insurance(commercial) & not Social Security Disability(which is even harder)


 
Old 02-12-2008, 11:12 AM   #4
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Re: New to Vestibular Neuritis/How Long/Disability?

Dollydd--
Thank you so much for your encouragement and the info. I have been working from home for a few weeks...some days are just much harder than others. I guess it's just the nature of this illness.

Subs30:
Thank you, also, for responding...still trying to figure out what to do with this, but it's good to know that others have had success with the process...

 
Old 02-12-2008, 01:27 PM   #5
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Re: New to Vestibular Neuritis/How Long/Disability?

I know some people who have needed to go on disability because they literally could not leave their house. Their anxiety got the better of them, they were dizzy constantly, etc. BUT, I think more often the case is that people learn to deal with this problem by continuing their normal, day to day activities as best as they can. If you become dormant and fearful, you are likely to exacerbate the problem (anxiety leads to fear, leads to more anxiety, etc.). I think it would be better to continue with what you can do, and if you need medication to help you though this, take it. You might even want to see a different doctor - perhaps a neurologist for possible migraine disease, or an OB/GYN for possible hormone imbalance. I would not go on disability unless you absolutely have to and medications are not working to alleviate your symptoms. Most meds for this stuff (Meclizine, Ativan, Compozine) should allow you to function (albeit maybe minimally).

That said, if you have a job that requires way too much interaction and physical attendance, maybe disability would be appropriate. When I got this thing in the beginning, I probably could not have handled being an aerobics instructor or a traveling salesperson who has to fly around the world all the time.

 
Old 02-12-2008, 01:51 PM   #6
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Re: New to Vestibular Neuritis/How Long/Disability?

Hi, Missy777--

Thank you for your thoughts about this.

I'm not actually anxious about the dizziness anymore, but I have a few other issues: I have a 50 mile per day commute in heavy traffic for work, and my job requires lots of reading, assimilating complex info., scanning lines of computer text, etc.

With the VN, I could not read at all for the first two months (and reading is a huge love of mine), and I definitely have trouble concentrating and actually thinking out involved issues. Still, I have been working from home and hope that I am allowed to continue to do so until I feel better. I do agree that distraction is the key to dealing with this day to day! My only worry is that my work will want me to be onsite before I feel ready to take that on.

I also have young children, and while I support and share a can-do attitude, there's only so much I can physically tackle right now. As it is, I get very fatigued when I do normal activities (taking care of my kids, shopping, walking or driving, reading, etc.). I'm hoping a few more weeks will make a world of difference...I know the springtime will be a boost for the spirits!! I will also say that I have been rather depressed by all of this...supplements seem to be helping that a bit, though.

 
Old 02-12-2008, 02:08 PM   #7
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Re: New to Vestibular Neuritis/How Long/Disability?

Quote:
Originally Posted by violet6 View Post
I'm not actually anxious about the dizziness anymore, but I have a few other issues: I have a 50 mile per day commute in heavy traffic for work, and my job requires lots of reading, assimilating complex info., scanning lines of computer text, etc.
Yuk! I know exactly how that feels to scan stuff and feel horrible. Also the reading part, and computers in the beginning made me dizzy. It still does sometimes, actually.

Quote:
Still, I have been working from home and hope that I am allowed to continue to do so until I feel better. I do agree that distraction is the key to dealing with this day to day! My only worry is that my work will want me to be onsite before I feel ready to take that on.
Agree! If you have been doing it from home and are not yet ready, continue! At least you are working and not just lying in bed all day.

Quote:
I also have young children, and while I support and share a can-do attitude, there's only so much I can physically tackle right now.
This ALONE is the best reason of all to stay home. The kids need you, and you need them. You are still working and I know you are busy (I have 4 kids) so you definitely are not dormant.

And don't forget about my hormone theory either. Since you have young children, your hormones are probably totally out of whack like mine and this alone can cause the dizziness and symptoms that can PERFECTLY mimic VN.

 
Old 02-20-2008, 07:15 AM   #8
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Re: New to Vestibular Neuritis/How Long/Disability?

Missy7777--

I can't believe it, but a new dr (neurootologist) just told me yesterday that I have MAV, or actually some kind of migraine triad involving anxiety, vertigo, and headaches. My headaches are rather bad, but I didn't think they were migraines. Meanwhile, I have been dizzy for the past 12 weeks. It was much worse at first...it seemed so much like a VN attack...I'm so confused about this!

(She said my ear/water test showed no vestibular damage, so I either never had VN or had a very mild case...) Is it possible the test is not conclusive?

This dr. prescribed a low dose of Paxil. Do you have any thoughts on this? I know I'm also supposed to avoid all kinds of foods and she said I should exercise, too, even though I feel quite horrid!

I am just amazed at this diagnosis...how can such a thing strike out of nowhere? Does MAV go away? I am wondering whether or not to take the meds or to try some natural approach...

Thank you for any and all thoughts on this...

 
Old 02-20-2008, 07:44 AM   #9
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Re: New to Vestibular Neuritis/How Long/Disability?

Quote:
Originally Posted by violet6 View Post
Missy7777--

I can't believe it, but a new dr (neurootologist) just told me yesterday that I have MAV, or actually some kind of migraine triad involving anxiety, vertigo, and headaches. My headaches are rather bad, but I didn't think they were migraines. Meanwhile, I have been dizzy for the past 12 weeks. It was much worse at first...it seemed so much like a VN attack...I'm so confused about this!

(She said my ear/water test showed no vestibular damage, so I either never had VN or had a very mild case...) Is it possible the test is not conclusive?

This dr. prescribed a low dose of Paxil. Do you have any thoughts on this? I know I'm also supposed to avoid all kinds of foods and she said I should exercise, too, even though I feel quite horrid!

I am just amazed at this diagnosis...how can such a thing strike out of nowhere? Does MAV go away? I am wondering whether or not to take the meds or to try some natural approach...

Thank you for any and all thoughts on this...
It is truly bewildering how and why migraines attack at a later stage in life. It is especially prevalent in women who are in their late 30's to 50's, when our hormones are going wacky and our ovaries and such are shutting down due to menopause. There are SO many women who I have spoken to who are going through the exact same thing as we describe in here - sudden dizziness, fatigue, headaches (not always), nausea, etc. It is like we are going through life just fine and all of sudden we hit a brick wall - WHAM. It is amazing what hormonal imbalance can do.

Now, what to do about it! Yes, you can try migraine medication. Preventive migraine medication works about 50% of the time, but there are sometimes undesireable side effects. Abortive medications (take med only when a headache occurs) work well for some people. Frovatriptan is supposed to work well for menstrual migraines - migraines that only occur right before, during and right after your cycle. THere are hundreds of migraine meds out there.

I am not going the migraine med route myself (yet). I am instead going the HRT route and taking a lose dose estradiol gel called "Divigel" once in the morning, plus taking some OTC Progesterone cream (Progest). This seems to be helping with the frequency and severity of the migraines. I also have no anxiety or insomnia anymore, which is wonderful.

I still need to carry around with me "Ativan" for times when I feel especially horrid (dizzy) and vicodin for headache pain. But at least I don't need to use these as often as I did when I hit the infamous brick wall a year ago. Phew!

Another options is getting on the birth control pill to regulate your hormones.

It will get better believe it or not. It seems horrible right now, but eventually our systems will regulate and get used to "the change", but for now we are in ever fluctuation hormonal madness. Don't get discouraged if the Paxil doesn't work. I have found that there is no one magic pill to take care of this, but a little of each different things. Get enough sleep, drink water, lay off of too much alcohol. I don't know about the food so much. Our main culprit in my opinion is HORMONES. I am finding that I can eat a little more flexibly than a regular migraineur's diet, but I don't go overboard. I wouldn't eat pizza or chinese food - too scared!!

Talk to your OB/GYN about doing something about your migraines caused by hormonal fluctuations. Or you can experiment with some of the abortive migraine meds. I hear that "Midrin" is a nice one that doesn't cause too many side effects. Again, I have not tried any migraine meds (yet), but I have been tempted when I have a doozy of a headache. Be careful though for REBOUND. Some people become to dependent on the abortive meds and take too much, which can cause rebound headaches.

 
Old 02-20-2008, 07:53 AM   #10
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Re: New to Vestibular Neuritis/How Long/Disability?

Missy7777-

Thank you so much for your thoughts on this! I feel like this is a lot to digest somehow...it just seems so unbelievable! The best thing is to talk with other women who have experienced this...so thank you again for your reassurance and information. I am just truly hoping that I will feel "normal" again one day, hopefully soon.

I am 36 now...still have regular periods...does this usually mean the hormones are slowing down a bit? That is a bit sad for me, as I was still considering the possibility of another baby. Still, now I would just be thankful to feel well enough to care properly for my current children!

--Violet

 
Old 02-20-2008, 08:08 AM   #11
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Re: New to Vestibular Neuritis/How Long/Disability?

Quote:
Originally Posted by violet6 View Post
Missy7777-
I am 36 now...still have regular periods...does this usually mean the hormones are slowing down a bit? That is a bit sad for me, as I was still considering the possibility of another baby. Still, now I would just be thankful to feel well enough to care properly for my current children!
Perimenopause (the time before actual menopause) can occur for YEARS. It is not uncommon for symptoms to start in your 30's. But this does not mean that you cannot have more children! It just means that your body is changing and your hormones along with it. In fact, if you have young children, this can also be a cause for the hormone fluctuations. I am 40 right now and have a 2 year old. About one year after her birth is when this thing HIT me hard. I am sure I can still get pregnant - I am still having periods too - but they are starting to be a little weird now. Last month I skipped one all together, and when it did happen, it was short and light.

You can definitely have more children - in fact, you might notice you feel quite excellent during pregnancy when you have lots of estradiol (estrogen) in your body! I love that stuff!!

 
Old 02-20-2008, 09:58 AM   #12
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Re: New to Vestibular Neuritis/How Long/Disability?

oops! Sorry Violet - I just realized that Paxil is not a migraine med, but rather an anti-depressant/anti-anxiety medication. Yes, this is something that women are often prescribed at the onset of perimenopause. It is very typical for physician's to prescribe antidepressants to women who are going through what we are experiencing with these awful symptoms. Not a bad thing, it's just helping to eliminate the SYMPTOMS rather that the cause.

Just wanted to clear that up!

 
Old 02-20-2008, 10:43 AM   #13
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Re: New to Vestibular Neuritis/How Long/Disability?

Missy7777--

Very interesting information...there is so much for me to learn and take in re: this new diagnosis. I've been focusing on VN for so long, I'm not sure how to feel about MAV!

Also, I am still amazed at how bad this condition can make one feel! I really felt like some major damaging event had occurred in my brain, and that I was very very slowly adjusting to it. So odd!

I might get my hormone levels tested to see if that is at work here, if those tests can reflect a problem like this. More subtle fluctuations might not show up, I'm not sure...

--Violet

 
Old 02-20-2008, 10:47 AM   #14
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Re: New to Vestibular Neuritis/How Long/Disability?

Quote:
Originally Posted by violet6 View Post
Missy7777--
I might get my hormone levels tested to see if that is at work here, if those tests can reflect a problem like this. More subtle fluctuations might not show up, I'm not sure...
Have them tested the first or second day that your period starts. Have the estradiol, progesterone, testosterone, and thyroids tested. They may be in the so-called "normal" range, but check if they are on the low side of the range.

YES, I seriously thought I was dying. I went the ER TWICE, had CT Scan, balance tests, ALL of that stuff. I thought I had a brain tumor. All tests showed normal and clear. Sheesh!

 
Old 02-21-2008, 05:39 AM   #15
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Re: New to Vestibular Neuritis/How Long/Disability?

Missy, mine happened at month 8 of pregnancy. How do you know if it is hormones rather then migraine?

 
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