Does this sound like Vestibular Neuritis?

Hello Kathleen, regarding the driving, I'm being very careful about it; venturing back out in small steps.  It's a big part of my life and I don't won't to lose the ability.  Yesterday I drove all the way to a park several miles away, with wife as passenger, then drove all the way back.  I never once thought I was driving dangerously. I did drive slower than ususal though.  

I had to stop driving then gradually worked my way back to it. I started with side streets and worked my way up to busier areas. Still have difficulties with highways and especially highways at night where it requires more concentration. It'll get better

Thanks Chris.  I forgot to mention that the sore went away after a few days, and I usually get them about once a year. I'm still early in the whole doctor process, but judging from what you and others have said, I shouldn't get my hopes up regarding their abilities.

I have VN as well. Exposure to all triggers is key to healing. Try to keep going in life as best you can. So important!! It sucks but we will get through this. It take a lot of time and patience. I'm at 9 months now and its gotten alot better. Around the 6 month mark I started feeling more and more improvement. Started noticing things getting better. Still not 100% for least I'm better than I was. I would take ativan on days where.it was tough.... When the dizziness was too much. It helped. Ativan helps symptoms of dizziness and vestibular disorders and of course the anxiety that accompanies it.....BUT I knew ativan can slow down the healing process so I only took it when absolutely needed!! Keep plugging away....it does get better. Healing is measured month to month not day by day

Hi Chris,

It is very interesting in the discription of your symptoms as I suffer with very similar issues.  I get the tingling/pinn and needles around the face and head and sometimes in the tops of my hands.  I also have a irrelevant underactive thyroid reading (slightly out but not significant enough).  I was diangosned with VN back in February but basically left to my own devices.  I was told to do Cawthorne Cookesey but these didn't help.  Evenutually I got to see a Mr Peter Rea from leicester, who is one of the top consultants for this type of thing in the UK, he diagnosed acute VN.  I am now doing the VRT as prescribed by his physio Andrew clements.  He believes that it will take 3-6 months before I start to feel back to normal.

Like you I have now had this for aound 7 months and was actually deteriorating before seeing Mr Rea,  I was able to walk 2-3 miles initailly but then became confined to my home as I began to feel weaker and more exhausted and the dizziness got worse.  I find it difficult to drive and my eyes feel weird all the time (difficulty working on PC, looking at certain things on TV, reading etc).

Also like you my calorific test and hearing test came back normal and my balance test was not that bad.  I do have a Nystagmus though.

I am hoping that the VRT prescribed especially for me will work, I have been doing it now for just over three weeks but been told not to expect any significant improvment for at least 3 months.

I have seen all types of consultants and had three scans and they have all come back normal so I have accepted that it is VN and will now just try concentrating on getting over this nasty thing.

Hope you and all other fellow sufferers start to feel some improvment soon.

Thanks for your reply Laurence I really appreciate it - especially as it seems some people are having almost identical symptoms. Interestingly the only thing showing after my tests although still "normal" was very slight nystagmus. The tingly stuff caused me to push for the MRI which as you probably know is an MS symptom along with dizziness. I still think it could be something to do with hypothyroidism but the only thing there aside it being clinically not relevent (according to the GP) is the sudden onset of the dizziness after flu.

I suppose there is some truth in the phrase "if you hear hooves it's probably horses...not zebras" especially in England! But this illness creates its own anxiety and I don't want to be months or years into this and find it's something else. 

My ENT guy in Norwich is clearly knowledgeable, perhaps I should defer to his wisdom....hard to though when after two months of exercises there is little improvement. I've found the walking most useful combining it with head shaking...which I can do as I live in a pretty isolated place! I used to cycle a lot (30-40 miles most days) and this has been pretty well stopped, not because of balance but the awful headache I get after, clearly way too much stimulus for the system. 

I'm pleased to hear from some people who have very similar symptoms, though I wish I didn't have too!     

Hi Chris,

Just got back from my very short walk (third of a mile is all I can manage at present), I tend to always want to veer to my left.  Like you I am also concerned that it could be Hypothyroidism, I am off for another blood test on friday to check for this.  Mr Rea told me to get my thyroid checked again when he looked at me but I have been told this by so many doctors down the years I have lost count and had so many blood tests.  Apparently the blood test is not especially accurate for checking this type of thing?

Are there others who have mentioned the tingling and also been diagnosed with VN?  Apart from the first month I have not been able to work as a can't drive and find any activity very difficult (e.g talking, listening, using PC ect) it is very frustrating.  The Physio told me that I could of course be suffering with both thyroid and VN issues!

I hope to be able to report more positive news in around 2-3 months time when I am firmly into the VRT.

Cheers

Laurence

 

Did you go to vestibular physical therapy? I had some kind of viral thing that the doctor thinks attacked my inner ears. Even though the virus has gone now I have problems with feeling very unbalanced. It gets worse when I'm in a crowded store and especially worse if I bend over for a while. I was outside yesterday bending over for about 20 minutes to pull weeds and for about an hour afterwards I was dizzy and it took another few hours to return to the regular unbalanced feelings. Today I was even more unbalanced so I feel like I had a setback of sorts because I stayed bent over for too long. My doctor is sending me for physical therapy for vestibular problems. I'm hoping they will help to return me to normal balance feelings. 

Hi patricia69095, I'm not sure if anyone has answered your question yet so I thought I would post a reply. Dizziness can be caused by many different medical conditions. My recommendation is to see a physiotherapist who specialises in balance problems. They have excellent diagnostic tools for diagnosing your issue. Definitely mention feeling unbalanced in a crowded store. That is fairly common symptom with balance disorders. Some of the more common inner ear balance disorders are vestibular neuritis, maniere's disease, labyrinthitis and benign paroxysmal positional vertigo. 

The vestibular rehab treatment (VRT) works incredibly well for vestibular neuritis. I had/have vestibular neuritis which presents itself as vertigo. The symptoms first turned up two years ago. After a course of VRT the symptoms gradually decreased and I have not had a vertigo attack in over a year now. It's not to say that the cure was immediate: I did from time to time get the odd vertigo attack after treatment ended. But on the whole those attacks became more and more infrequent.

My advice though is to keep up with the rehab exercises. Somedays you may not feel like you are making progress but eventually your brain will compensate for the balance disorder and life will return to normal. Also it is important to learn to manage anxiety associated with the vertigo/unbalanced feeling. I know, easier said than done. But anxiety can make us hypersensitive to the feedback our body is giving us and make things seem much worse than they actually are in reality. Good luck with it all!

Thank you Rick-Australia! I went to my evaluation by the vestibular therapist yesterday and she told me that from my symptoms she thinks I have vestibular migraines and she wondered why my ENT doctor did not refer me to a neurologist. I told her that the ENT doctor did say she thought it could be vestibular migraines but that she wanted me to try the physical therapy first as she didn't want to just give me another medication to take on top of all the other ones I take for Menere's Disease. There is also the possibliity that it is vestibular neuritis that I experienced I guess. I was originally diagnosed with Meniere's when I was 19 years old. Now I'm 68 and have a moderate earing loss in both ears and have never lost my hearing durng an attack. So in that way the symptoms are not like Meniere's. I didn't start to lose my hearing until the late 1990's. I have had particular trouble over the last 3 years with dizziness, unbalanced feelings, etc. Some years over my life I haven't had one attack for the whole year. Only a couple of times over the last 3 years have I had the full vertigo thing with vomiting, etc. Until this last experience of staying so sick for over 4 weeks now, I have always bounced back to full equilibrium and no dizziness or wozzy feelings within one or at the most two days with an attack. And then I'll be fine for weeks or months until the next time. I have been keeping records of the number of days I am plagued with this dizziness, unbalanced stuff for the last 3 years. I averaged about 28 days out of the year that I would have an attack. Like I said only one or two of those days were the full on vertigo. So far this year I have had 35 days of attacks and constant unbalanced feeling. I think this truly might be something other than Meniere's. The vestibular therapist thinks this therapy might help me some but that if it is vestibular migraines then I will need to take migraine medication to have full relief. So strange I don't know what to think. Hopefully all my experience will help someone else to figure out their  problem with their equilibrium.

Thanks Meg.  Are you able to work and drive normally?

Hi I have VN and am always researching ways people managed this. How did you manage? What things did you do?

I forced myself to drive and work when it was really bad with the exception of ONE week. One week out of the entire thing I stayed home. That was the worst week for me. Every now and again I get the dizzy spells or the boat feeling. My right ear constantly feels full, too. I'm going to send you a message off of the comments.

I found it hard being a passenger in a car for the first month due to the movement/vertigo. I was unable to drive for around 2-3 months as it just overloaded my brain and didn't feel safe-felt a bit of an out of body experience! Far too much stimulus. I returned to work a couple of weeks ago where I needed to drive for 30 mins each way (this is about my limit).  I only worked half days, I think it would have been very difficult to drive after a full days work due to fatigue. The second week of driving was easier than the first, perhaps due to my brain being retrained to this skill. It remains to take a lot of concentration and don't think I could drive much further.