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Old 06-15-2008, 05:11 PM   #1
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Vestibular Neuritis -- Looking for suggestionas and advice

Shortly after waking up about 7 weeks ago, I was overcome by extreme dizziness and nausea. I couldn't move my head or breath without having to vomit. After a night in the ER where they filled me with anti-anxiety and anti-vertigo drugs, the nausea was brought under control and I was told I would get better over the next few days to weeks. My condition didn't seem to be improving so I went to see an ENT who diagnosed me with vestibular neuritis. I had a Cat Scan in the ER and the ENT sent me for an open MRI and an ENG which confirmed that the problem was caused by vestibular neuritis. I am still dizzy and cannot do many of what used to be daily activites for me -- riding a bicycle, rollerblading, walking a straight line, etc.

I felt as if I was getting better for a while and thought I could see the light at the end of the tunnel but the last 3 days have been a lot worse. The "brain fog" has returned and things like crossing the street are difficult. It's like when this first started -- I feel like I am missing what's going on around me , have difficulty negotiating my way in crowds (especially of children), am generally dizzy, and getting thought the day is exhausting.

Doe anyone have any advise or suggestions?

Thanks!

 
Old 06-15-2008, 07:29 PM   #2
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Re: Vestibular Neuritis -- Looking for suggestionas and advice

Hi there & welcome to the board! Well, I was also initially diagnosed with VN last December. Many docs think that the condition resolves in 2 or 3 weeks, but according to an audiologist whom I trust, most folks get better in six to twelve weeks. For some, however, dizziness persists even though the initial incapacitation ends. This can continue for some time...how long is debatable. Some experts say by 6 months most symptoms should have resolved, but sometimes people do continue to have some level of dizziness for a year or more. Vestibular rehabilitation therapy helps you recover faster, so you may want to find a physical therapist who specializes in that.

For many people who have persistent dizziness, migraine is eventually determined to be the cause. If your ENG clearly showed VN (did you have a caloric deficit in one ear, etc?), then I'd say you probably will be feeling better soon. I'm sorry you're going through this...feeling dizzy is so much worse than it sounds! I hope this helps a bit...

(note: I also experienced a lot of exhaustion with the inner ear/migraine issue--I think I have a combo...I would have to lie down for a long time after folding clothes, for example..this has gotten gradually better over time, along with my other symptoms.)

--Violet

 
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Old 06-16-2008, 02:12 AM   #3
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Re: Vestibular Neuritis -- Looking for suggestionas and advice

Hi there, so sorry you are having to deal with this misery. Like you I suffered sudden onset vertigo and violent vomiting, January 2006, taken to ER and all that. After that first episode I had two more within six weeks and another one in January 2007. At times in that year I did start to feel quite well again, but always felt unsteady, like I was on a boat. I was diagnosed with labrynthitis and told that the vertigo attacks were decompensation episodes, which should get less frequent and less severe and then fade away as my brain compensated. In March of 2007 it was suggested I start vrt exercises and I immediately saw an improvement in my balance - I lost the sea sick feeling and the ground started to appear more stable. I still do the exercises, 15 months now.

However, after continuing to feel pretty unwell, dizzy, heavy headed and all the other stuff, I asked for a referral to a neuro-otologist in December '07. They ran all the tests which they said should have been done right away when I first got sick, and they are as certain as they can be that I have left side vestibular neuritis. They saw me for a six month check last week and a wobbly floor test showed that my balance is now back to normal but I have some eye co-ordination issues which they say can be sorted out by customized vrt which I start on Thursday.

If it vn then it seems that about 50% of people get well quite quickly and you are still in the timeframe for a quick and complete recovery. Don't be downhearted about not feeling so well at times, you have suffered a big jolt and several sensory processes have been pushed out of sync, this all has to recalibrate. Brain fog and disorientation are probably to do with the fact that your brain is having to work overtime at keeping you upright and gets super tired. Being disorientated and stressed in crowded places like supermarkets, airports etc., is par for the course, it will get better and you are best to confront it head-on and not start avoidance techniques like I got into the habit of. My specialist said it was better to shop everyday for a while in short bursts rather than do a big go once a week. And anyway what's the worst that can happen? If you do have a bad turn in a supermarket you will find that people are very kind and take care of you til it is over.

However, if you are one of the unlucky ones that are in for a longer haul the evidence seems to show that for vn sufferers lots of activity and particularly a regime of vrt exercises help stabilise the vestibular system quicker. If you have a good ENT specialist then you might be OK, but if you have any doubts get to see a neuro-otologist, the dizzy specialists. And if it isn't vn then they are the best people to try and work out what it is.

18 months ago I thought my life was over, I was struggling to work and I felt rubbish. But I ran two miles this morning and I am going into London later for some meetings. I haven't taken any medication throughout, not that I was offered it but I decided that I just wouldn't go down that route, all the trouble getting off it. I have been so anxious at times but I just got through it with lots of deep breathing, keeping fit. The better I feel, the less I think about it and I now know, for sure, that there is recovery from vn and you can get back to living a normal life. Hang in there, you will make it.
good luck

 
Old 06-16-2008, 08:59 AM   #4
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Re: Vestibular Neuritis -- Looking for suggestionas and advice

Thanks for the encouragement, I appreciate it. the last few days have been tough -- I feel like I lost about 3-4 weeks of progress. I saw the doctor again today and am being referred for vestibular rehabilitative therapy. I am just waiting by the phone so the therapist can get back to me to schedule the appointment.

Thanks again and good luck!

 
Old 06-16-2008, 05:55 PM   #5
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Re: Vestibular Neuritis -- Looking for suggestionas and advice

The VRT should help! Also, I found the physical therapists to be very encouraging and supportive, so hopefully you'll find a good person to help you through this.

Keep us posted on how things go! I'm curious about how others experience the course of this disease. I found the first two months to be pretty unbearable, but things got slowly better after that.

Good luck!

Violet

 
Old 06-17-2008, 09:24 AM   #6
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Re: Vestibular Neuritis -- Looking for suggestionas and advice

I noticed we're both in NYC. Do you have any recommendations for VRT therapists. It seems that everyone my doctor's office calls has a one month lag time before they can give me an appointment. did you have to wait as well?

 
Old 06-17-2008, 07:47 PM   #7
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Re: Vestibular Neuritis -- Looking for suggestionas and advice

No, I don't know a good VRT person in NY...you might want to look up Cawthorne Cooksey (sp?) exercises and start with them. I think there also might be some exercises in the sticky section of this board (at the top)...Short walks are also a good idea if you can do them yet (in areas of lower stimulation--not the mall, for example).

Good luck!
--Violet

 
Old 06-18-2008, 08:04 AM   #8
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Re: Vestibular Neuritis -- Looking for suggestionas and advice

Quote:
Originally Posted by LookingForInsig View Post
Thanks for the encouragement, I appreciate it. the last few days have been tough -- I feel like I lost about 3-4 weeks of progress. I saw the doctor again today and am being referred for vestibular rehabilitative therapy. I am just waiting by the phone so the therapist can get back to me to schedule the appointment.

Thanks again and good luck!
Good luck with the VRT. Its the best way to speed up compensation- just be patient and consistent with it. Another thing to know is that recovery is usually up and down, like you are experiencing. A couple a bad days or a bad week doesn't mean that you have lost progress, its usually the system regrouping and then you'll feel even better when you come out of this period. Stay positive!

 
Old 06-20-2008, 01:30 PM   #9
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Re: Vestibular Neuritis -- Looking for suggestionas and advice

Thanks for the encouragement -- I am very frustrated and venting right now. The last week + has been especially tough. It's been almost 2 months and it's now harder for me to be in crowds than it was earlier on and I'm afraid that it's affecting the way I relate to my family. I've been trying to get in touch with my doctor's office since yesterday for advice but no luck on that end and the wait for VRT is at least a month. I'm frustrated --everyone says don't worry you'll get better (my GP told me I'd recover in less than a week of the initial attack) but the opposite is happenning to me. It's easy to say don't worry to someone who's sick when you feel good. I know I'll get better once I get the right treatment. I wish I had a strategy to start doing so on my own and am frustrated that everything is out of my control and is taking so long -- I could have been a waitlist for VRT a month ago and now doing it if I was given the prescription earlier -- by the time it starts at least another month will be lost.

 
Old 06-20-2008, 03:00 PM   #10
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Talking Re: Vestibular Neuritis -- Looking for suggestionas and advice

Hi

Lets go back to ur 1st post:

..."Does anyone have any advise or suggestions?"....

U don't have to wait to do VRT's---u can do them ur self---until u get on/in the "PT's" sked---u can search this board for post's for VRT's that other's have used until they got in---or just did them on their own---if there Medical Insurance did not cover it....that's # 1

#2 there is no way of telling how long it will take to get ur "Balance" system---recalibrated to where it was before & it may never be 100%(i.e., where it was prior to this junk).---in fact most of the Dx's by Doc's are "More Likely then Not" i.e., given the tests which are not conclusive---it's the most likely probability....

However...even if their wrong---ur "Brain" will (in most cases) correct for the "INJURY"...but to do that it will need to redo/recalibrate most(if not all) of the "Balance Equations" it has learned---from the time u first started to move as an infant....

So if u are lucky and follow a different "Trajectory"---u'll beat this junk in warp speed---if not it "will just take time"---as u can see from the posts on this board...

The way the brain relearns is by u forcing it by ur movements---either through a "Formal PT Directed" VRT program or one of ur own based on info/standards(avail on the net) or a combo of both---while u wait.....while/if ur planning on doing some VRT's while u wait---pay attention to the various VRT exercises---which are designed to recalibrate different balance equations.....

The Doc's who do this for a living(specialists) are "NEUROTOLOGIST" some ENT's are good at "Vestibular"(VN,Lab,BPPV, etc...) most are not....

So there is no reason that I know of to sit around a wait---dig in find out all u can about "VN" and the VRT exercises....hey with some luck---u might even lick this junk---before get on the PT's sked.....even researching is a type of Vision VRT....venting is not.

Lot of info in the "Sticky" 1st post on this board.....

Good Luck!

Last edited by Subs30; 06-20-2008 at 04:13 PM.

 
Old 06-21-2008, 07:10 AM   #11
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Re: Vestibular Neuritis -- Looking for suggestionas and advice

You are mostly right -- thanks! I still think it's OK to be disappointed and upset about a doctor that is not returning phone calls! How do you use the sticky post -- when I tried it, I only found information about toncillitis and toncillectomies? I think I am missing something? Maybe looking in the wrong place?

Thanks.

 
Old 06-21-2008, 10:18 AM   #12
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Talking Re: Vestibular Neuritis -- Looking for suggestionas and advice

...."How do you use the sticky post"....

1. Go to the first post on the board "Sticky" Information Archive" open it up

2. Scroll down to one of the links ur interested in, i.e., :


..."Quote:

Vestibular Rehabilitation - eMedicine

[url]http://www.emedicine.com/ent/topic666.htm[/url]"....

3. Type into the Explorer(or whatever ur using)the link(URL) without the {url} or {/url}....

4. and "click on" "go"----that link will/should take u to the link on Vestibular Rehabilitation and a set of VRT's.

Should also check out many others:

..."Quote:
Vestibular Neuritis and Labyrinthitis

[url]http://www.pubmedcentral.nih.gov/pagerender.fcgi?artid=1372362&pageindex= 1#page[/url]

[url]http://www.dizziness-and-balance.com/disorders/unilat/vneurit.html[/url]

[url]http://www.emedicine.com/neuro/topic686.htm[/url]"....

That one is for "VN" and "Labs"

The video one(s) by Dr Rauch from Harvard are excellent as are Dr Hain's from Northwestern Univ....


...."Quote:

Dr.Rauch's Online Otology Clinic - excellent video clips - Associate Professor Steven D. Rauch, MD

[url]http://www.meei.harvard.edu/patient/rauch.php[/url]".....

Lot to do/learn/absorb but u'll make/get it---and that always---beats wasting ur time/spin ur wheels....waiting for a call....from.....(fill-in the blank)

Good Luck!

Last edited by Subs30; 06-21-2008 at 10:43 AM.

 
Old 06-21-2008, 11:04 AM   #13
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Re: Vestibular Neuritis -- Looking for suggestionas and advice

Thanks. I am giving it a try!

 
Old 06-21-2008, 11:57 AM   #14
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Re: Vestibular Neuritis -- Looking for suggestionas and advice

Quote:
Originally Posted by LookingForInsig View Post
Thanks for the encouragement -- I am very frustrated and venting right now. The last week + has been especially tough. It's been almost 2 months and it's now harder for me to be in crowds than it was earlier on and I'm afraid that it's affecting the way I relate to my family. I've been trying to get in touch with my doctor's office since yesterday for advice but no luck on that end and the wait for VRT is at least a month. I'm frustrated --everyone says don't worry you'll get better (my GP told me I'd recover in less than a week of the initial attack) but the opposite is happenning to me. It's easy to say don't worry to someone who's sick when you feel good. I know I'll get better once I get the right treatment. I wish I had a strategy to start doing so on my own and am frustrated that everything is out of my control and is taking so long -- I could have been a waitlist for VRT a month ago and now doing it if I was given the prescription earlier -- by the time it starts at least another month will be lost.
Hi
recovery from vn is not a straight line and there will be some OK days that are followed by real downers, often for no obvious reason. I think of it as being on a ladder and although you are slowly climbing up to the top you keep slipping down a few rungs, then you have to start climbing again. Being more unsettled by crowds than at the beginning is nothing unusual, you are stressing a damaged system as you try to do more stuff. You just have to keep going, the more you do the quicker you will recover. Be prepared for new symptoms appearing during recovery and of all the muddled processes it seems that the eyes are often the last thing to settle down.

Your GP has done you no favours by suggesting you would get better in a week, just raised false hopes. No GP can possibly know how quickly one individual is going to recover, as you can tell from posts on this board, we recover at different rates. An attack of vestibular neuritis or labs leaves different levels of damage behind, some are mildly affected, others get hit more seriously. I'm not sure how I would have reacted when I first got sick if I had known just how long the road to recovery was going to take, but after 2 and half years I am just about there. For me, it has been all about slogging away at VRT, progressing from simple stuff to some really challenging exercises.

If you are going to start vrt on your own, make sure you start with the easy stuff. You'll find a selection in the first post on this board. Be prepared for being extremely tired at first, even the simplest routine can make you exhausted. Doing a little and often is best. If a particular movement makes you dizzy, keep going and try and work through the dizzy spell. Don't quit too soon, I asked my pt this week if I could think about stopping once my eye co-ordination is sorted out, I have been going for 15 months and she said on the day I can bounce on a trampoline and focus on my finger against a busy background without problem, then I can stop - until then I keep going. I guess she was saying don't stop.

I think you should persevere until you find an expert pt, someone who specialises in balance problems and that is more likely through a neuro-otologist. I first got to a pt through ENT and although she was OK, I noticed a big difference when I finally got referred by my neuro. I had an hour long assessment based on my diagnosis and then was instructed in some really challenging exercises based on what I need.

You will improve, two months is very early days, you have to give it time, there are no short cuts, take it one day at a time.
best wishes

 
Old 06-22-2008, 07:18 AM   #15
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Re: Vestibular Neuritis -- Looking for suggestionas and advice

Thanks fot the advice, especially regarding the therapist. At first, I was thinking of going with whoever had the earliest availability but now realize that which therapist you use matters. I am also trying to do the posted VRTs on my own and now know to keep it up even when they make me dizzy.

Good luck withyour recovery. I hope you are able post your good news about focusing on the trampouline, I know you will get there, quickly!!!

 
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