Does this sound like Vestibular Neuritis?
Posted , 31 users are following.
Hello, this is my first time posting. I have a serious health issue, but the doctors haven't been able to pinpoint what it is. Basically, I've had six weeks of dizziness and unsteadiness. It sounds like Vestibular Neuritis, but please let me know what you think.
On June 9th I got some kind of stomach flu or food poisoning. I had severe vomiting and diarrhea. Other than a canker sore under my toungue, I was starting to feel better. I was exercising again and working again.
While walking across a bridge in the park on June 14th, I suddenly got a fear of heights. I felt the same sensation the next day while sitting at a traffic light, that happens to be on top of an overpass. I felt panicky.
As the week went on, I was getting panicky in the car every time I had to stop at a light. I had to look down at the sterring wheel because the cars criss-crossing in front of me was making me disoriented.
Then I began to get dizzy spells throughout the day, plus I felt a permanent unsteadyness 24 hours a day. A lot of times I had to concentrate hard to walk. My eyes were not going where I wanted them to go. Work really brought on the systems. I started missing days. I also had to have people drive me around to places. One time I had heart palpatations when there were a lot of people around me. Eventually I asked for a leave of absense.
On the 26th, a dizzy spell got so bad I had to go to the hospital. It was mainly disorientation, not like the room was spinning. I was still able to walk around the hopital, but very slowly, and had to concentrate hard to do it. MRI showed no tumors or stroke. They said it was a middle ear issue, perscribe some medicine and sent me on my way.
So far I've seen one ENT, but other appts are coming for nearologist and another ENT. My hearing test was perfect. The ENG/caloric test came out normal, which surprised me. He suggested I might have Mal de Debarquement Syndrome.
I became became imprisoned in my home, and I started to feel physically weak as the days went on. After learning about vestibular exercises on the Internet, I decided to start doing them on my own. They seem to have helped with my balance and with my eye-darting issues. I now go for very long walks. I am starting to drive again too. However, everything feels totatlly different than it did before this all began.
There were a couple of nights where my brain was doing odd things. I got hot flashes (even though I'm a guy) and heart palpatations in the middle of the night one time.
My persistent systems right now are:
-suceptible to dizziness when on the computer, watching TV, doing quick head turns, being inside stores
-high-pitch ringing in my left ear
-fullness in my right ears that comes and goes, almost like there is fluid in them
-harder to concentrate
-unsteadiness as I move. Sometimes it's a "bobble"; othertimes it's like I'm leaning in one direction or another. Sometimes it's almost normal.
-sensitivity to sound, like the bath water running
-misidentification of sounds. I sometimes think the garbage truck is outside, only to figure out it's our air conditioner.
Let me know what you think. I would like to begin living a normal life again: return to work, use a computer and watch TV normally, be able to drive long distances without worry. I'm thinking it's VN, but I did not have an "acute" spinning phase, plus the caloric test was normal. The canker sore may be relevant because I've read that the herpes virus can attack the nerve.
5 likes, 302 replies
chris1303 Kevin5555
Posted
As promised here is the update on my thyroid paths. It seems I still have the underactive thyroid, though technically still sub clinical but also a slight B12 deficiency - these two alone coould be adding to the VN symptoms, giving both the brain fog and general feeling of being unwell and also the neuro symptoms I've been experiencing such as the tingling and numbness. For those following this my TSH is 5.6, normal is 3 or below, The Free T4 and Free T3 were within range and Total T4 ok. UK treatment starts at 10 generally for TSH.
B12 was 270, with insufficent being between 140 - 250, as noted below some Dr's believe 400-500 should be minimum.
In a nutshell, slightly hypo with possible symptoms and borderline B12 deficient with possible symptoms.... I'll give B12 tabs a go and see if anything changes. Meanwhile just waiting for a response from the neurologist on my cervical spine as to whether it is pinching a nerve....
Hope this helps.
The Dr comment from the lab is as below :
The Thyroid Stimulating Hormone (TSH) is elevated. If you are already taking a form of thyroxine, it is possible that that your dose is too low or that you have forgotten to take it on occasion. It may be that an increase in dose is in order - if adjusted it would be sensible to repeat thyroid function (TFT) testing in around 2 months' time. If you are not taking thyroxine, and this is the first time TSH has been noted to be high, it is possible that 'non-thyroidal illness' or other medication effects are the cause of the elevation. It may be that hypothyroidism (underactive thyroid gland) is about to develop. In these scenarios, it would be advisable to repeat thyroid function tests in 3 months' time. If this a repeat elevated TSH, it would be a good idea to consider checking thyroid antibodies if not previously tested. If antibody testing is positive, an annual check of TFT would be in order as your risk of developing thyroid disease would be higher than average. I would suggest undertaking this repeat test sooner if symptoms develop. The usual advice is to consider commencing thyroxine if TSH rises above 10 mU/L. Some authorities advise commencing thyroxine at lower TSH levels.
The vitamin B12 level is technically in range but some experts believe levels of 400-500 are desirable and that levels below this may lead to symptoms. Low Vitamin B12 levels can lead to Pernicious Anaemia (PA), a state of deficiency of the red blood cells in which there is reduced quality and number. Characteristically, the red blood cells are enlarged in this state (if the deficiency is severe and longstanding). Vitamin B12 is commonly found in many foods, particularly meats. Deficiency can develop if intake of the vitamin is reduced or if absorption from the gut is impaired. Poor absorption owing to a deficiency of Intrinsic Factor (IF) is the underlying reason for PA. Vitamin B12 deficiency in the longer run can lead to nervous system disorders - with sensation changes, loss of power or co-ordination, gut disorders and (rarely) dementia or mental illness. Lower level deficiency has been associated with a range of symptoms such as fatigue, memory impairment, irritability, depression and personality changes.
laurence76206 chris1303
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The above all sounds very familier to me. As you know I too am borderline Hypothyroid with my levels ranging from 4.8 to 8.9 over the past 3 years. I was given some medication for a short while when it reached 8.9, unfortunately for me this never helped and in fact gave me a scare when my heart began to race and miss beats, this went on for a whole day. I was advsied then to stop taking the medication. I do though understand that there are various medications and it is finding the one that suits best. My levels of B12 were also borderline like yours but again the Doctor didn't htink it was a major issue. I do accasionally take a vit B12 which I'm pretty sure does help especially with the anxiety.
What are your nexy steps, are you going to ask the doc to prescribe thyroxine? I hope you have a better recation to this than I and it does the trick for you.
All the best
Laurence
chris1303 laurence76206
Posted
I'm pretty sure all these things are linked, it's cutting the viscious cycle that we have to try and do.
Have I asked you before about your cholestrol levels? Hypo is dangerous in other respects as it pushes up those levels. For the life of me I cant get below 5.5 total, which again is borderline.
I'll keep you posted
Cheers
Chris
laurence76206 chris1303
Posted
My cholestrol level at the last reading was 5.2. Probably like you I eat a lot of healthy food (but also some unhelathly) and am not overweight but my level hovers around 4.8 to 5.4. My wife's level, who is the unhelathiest eater I know, is around 3.3 to 3.8!
Cheers
Laurence
anne05147 chris1303
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fasthorse chris1303
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fasthorse laurence76206
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chris1303 fasthorse
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I'm not sure if Armor is available in the UK, but I too have read it is the best option in hypo and that synthroid doesn't work well for all.
I will start the B12 today and see if that resolves anything - I have already cut back on coffee, things will have to get really bad for it to go completely!
I will keep you all updated, I'm also due back for a balance follow up in a couple of weeks so will pass on any advice they give after I've been.
Take care all, Chris
laurence76206 fasthorse
Posted
I have been away down in Poole for the past 3 days so have just picked up your post. It is interesting you mention about lown body temperature, I have taken mine on previous occasions thinking it was high to then discover that it was around 1c lower than avaerage. I will try the 3 day test and see what it comes out at. Thanks for the advice.
Cheers
Laurence
marlene21102 laurence76206
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I've had MDds now for 4 yrs ,no let up .keeps me close to home on any given day ,living by the sea ,does give me a change of scenery ,thank goodness .
Hope Poole visit was good .My home town .
laurence76206 marlene21102
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I have been lucky in that through te patient forums I struck up a good friendship with another VN sufferer who happened to own a static caravan at Rockley Park. She was very kind and let me and my wife have it for 3 nights/days. My wife does all the driving at the moment as I have been suffering since the 19th December 2014 with VN. We went along and met the lady who let us the caravan, she has had VN for 6 years on and off. She did improve to around 85% but then unfortunately got bad again.
Poole was lovely and the weather was good, i felt so much better when down there as it helped relax me and release some of the anxiety/tension we all suffer. Unfortunately there is always a price to pay and today I don't feel so great but then that could also be because during the day I'm home alone so my mind then reverts back to how I am feeling (no distraction to take my mind off things).
Is the treament the same for MDDS as it is for VN (VRT, walking etc).
Best wishes
Laurence
marlene21102 laurence76206
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Glad you took offer up ,did you have to travel a distance to get here ? Id have found it difficult with having anxiety from this condition ,but having said that ,I notice driving isent the problem with Mal de Debarquement syndrome ,concentration my husband says .ive done the exercises,walking ,head slow turning side to side whilst fixing eyes ahead ,looking straight ahead walking ,feeling my feet barefoot on ground ,but no the swaying / rocking motion stays put ,mine began after an Osteopaths visit ,for sinus drainage ,Anne on this site same thing Osteopath visit ,my next door neighbour had self same thing happen to her last year ,hers was Virtigo ,what there's been in connection is the numbers having neck issues to start with ,me neck ache for 9 yrs neighbours was neck ache ,hence Osteopath for her .Got to be something to our necks .virus wise .
We all talk ,so maybe we have the answer to getting this fixed period .
Don't beat yourself up today only stress out more long run ,hope not on your own for to long,we've all been there .I try not to let my mind drift towards it .I keep music or the like in background for distraction ,I have tinnitus as well ,again background low noise helps that on my worst hissing day .
Takecare ,good to chat
fasthorse laurence76206
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laurence76206 marlene21102
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Was your MDDS diagnosed by a specialist? It seems strange that you got this after seeing the osteopath as i thought MDDS only came on after being at sea (I was in the Royal Navy for 5 years)? But then I suppose like all our conditions we are not really sure how or why they started. With mine they have suggested a virus but I sometimes wonder whether it could have been something else. I awoke at 5.30am on 19th Decemebr 2014 with my head spinning but that same morning at around 2.30am I struck my head getting out of bed on the corner of the cabinet so asked if this could have set it off but I suppose I will never know as they couldn't really tell me.
I do get the anxiety but this has improved as I have slightly improved since doing the VRT. I do still have many horrible days but am beginning to get a few more better days. One of the main things that bring on my symptoms (beside stress and other viruses) is salt, so I try to avoid too much salty food and keep my daily intake to around 4g per day (below the UK reccommended 6g).
Anyway, I hope one day you will begin to feel and see and improvement and you can get out and about more often.
Best wishes
Laurence
marlene21102 laurence76206
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It's a 24/7 thing ,no respite what so ever ,think that's where the anxiety stays put having this .No one understands why we have all these different types .ive never found the answer to getting back to prior the Osteopaths visit ,only thing I'd done to then having this follow on in its wake .
Maybe it was that knock on the head ,that's resulted in your now having this problem ,you just go by what you know .Its a miserable condition to have i know that for sure ,Im dealing with tinnitus ,many have that ,again on other sites say they've got tinnitus as well ,was my having already having tinnitus ,and getting head moved was its kicker ? when I had Cranial few years prior ,it didn't result back then getting this Mdds ,got to ask myself Why not then.? Now a plain old Osteopath visit and Mdds ?
Don't know what else there's to do ,as many on these sites say ,think ones always reluctant to try treatments for fear of causing further problems to it ,understandable in my view .im vary weary these days for sure .
Any doubt ,leave it out is my thinking .
I'm on a low dose blood pressure tablet ,so I avoid salt like the plague where at all possible ,same with sugar for anxiety ,to much not good for that ,good job I've not got sweet tooth .Im teetotal so rule that out as well .
When you look at the possibilities to all of this ,the list is endless what gives you Dizzyness ,Im only on the BP med ,only went on them year after Mdds began ,so I know that's all down to stress Im on them now .
Just go one day at a time Laurence ,what I do .I never look to far down the road and think is this how it's going to be ,hey can get up tomorrow and it's all finally stopped ,as it began ,Im more concentrating on the anxiety side to it .
Hope you get better from it ,we didn't ask for it. So don't beat yourself up ,I dont .Us today ,others tomorrow ,did say to Anne way back friend local thinks we're sensitive to earths axis moving .? For it ,bit off the wall thinking by her ,but it did make me think driving home after I saw her .
You were Navy ,were ex Royal Marine family 24 yrs ,service wife for 17/18 yrs .we lived in Plymouth for few years .last thing husband was on ,was the Sir Galahad ,and the Falklands war .
Takecare try not to worry easier said than done ,this isent going to kill us ,how I look at it .frustrated it's there .Life mess up hey .Best wishes to you Marlene .
laurence76206 marlene21102
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I was based down at Plymouth for a while (HMS Drake), before getting my first ship, the HMS Mohawk. This also had Royal Marines on board. I was only in for 5 years from 1975 to 1980, I was on reserve during the Falklands conflict but was about to be recalled when it all ended. it must have been horrendous being on board the Sir Galahad.
Yes I take it one day at a time but try and get out and do things once in a while e.g go for a meal. I do miss having the occasional beer or peice of chocolate but avoid these at the moment as I hope to reintroduce on the day I am finally rid of the VN. I do drink the odd non alcolholic beer which is ok.
I will be seeing the consultant again in 10 days and will ask him a lot of questions. I had been doing ok up until friday but have taken a few steps back (proabbaly due to doing so much last weekend/week), we are told to move around as much as possible but when we feel bad we are told we have done too much (damned if you do damned if you don't).
Anyway, hope your weekend has been good.
best wishes
Laurence
anne05147 laurence76206
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marlene21102 laurence76206
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You sound like Gill here on site. She pays for it to if she over do things ,even if she's on her comp for any long periods ,wipes her out for days ,this is what it does to many .Gill knows her limits .
Make your notes out ,I find easier if you let drs read what you want answers to ,then let him tick it off .Some say their trying out a Mav Diet ? What ever that consists of .another to look up ,go round and round in circles with all of this ,I only have odd bit of Darlk choc ,here and there purely for my BP ,
I walk around ,well best I can ,mostly in garden ,but some days it's hard to even do that .Last Thursday was the first day I actually felt the solid ground under both my feet ,( no sponge ) so made a trip out locally ,got up to Rockley Sands ,had walk around still okay .Thought maybe just maybe this is stopping next day no back it was to walking on sponge .Goodness only knows what's going on .Every day new ones I see on these sites with having this started some are so very young ,with young children to care for .So I thank god its just myself and husband whilst I've got this problem .
Mentioned to husband about HMS Mohawk ,did you know Marines Munn and Mitchell ,they were on ship .
The Falklands ,took 5 long hours to find husband off the Galahad ,we were watching for his face to show up on one of those rowing boats ,with the Galahad burning in background ,terrible time for me and my son and daughter ,my husband had already completed a year unaccompanied on the Falklands 8901 80/81 detachment ,so thought that was that. how wrong we were .Came outside as a warrant officer ,1985 .
Best wishes ,hope week ahead be good to us all .
marlene21102 anne05147
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book called Headaches and Migraines ,by Katherine Wright my husbands just said be something if this is the cause .
Thanks for bringing it up .
anne05147 marlene21102
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paula59 marlene21102
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marlene21102 anne05147
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I get horrendous head aches ,just want to sit and hold my head ,I do take the odd Migraleve ,have done for past few months ,on really I can't stand this head day ,these day Hard cheeses,Tomartoes ,Ham ,White Breads,Ice cream ,Cream ,I've backed away from as much sugars as I possibly can ,think they make me hyper ( anxiety) the list goes on .
I will now keep a daily listing of what I eat and drink ,see if I can figure what triggers now can be causing trouble ,see if my daily balance improves as time goes by .Wonder why this isent looked further in to diet .
How's this for coincidence ,just came off of Mdds site here in UK Im on. This was what it was freaky. Vestibular Migraine/ Mdds ,drug used is ,hope I get this right Acetazolamide ,couldn't believe what was placed after what you'd previously had been saying .
Wonder if this will help my Tinnitus ,if it is Migraine ,not get rid of it ,be to much to wish for ,but tone it down ,to become more managable ? That's got more intense since Mdds began ,I put that again down to that Osteopath visit .It just changed .
So no more chocolate for you Anne ,small price to pay ,to getting quality of ones life back Id say ,id do it in a Heart beat .
No word from Darren ,not seen him for few months ?
Let's know how ,next week goes for you choc free .
laurence76206 anne05147
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The neurologist I saw prior to the ENT consultant did also suggest that I could be suffering silent migraines. Mr Rea (ENT) did also say I could be suffering with these but as part of the VN, apparantly 40% of VN sufferers develop migraine.
Like you I am thinking that I am intolerant to many foods that I used to be ok with. The problem I am having is knowing what these foods are. I avoid caffiene, chocolate, alcohol, most dairy and try to keep my salt intake to around 4g per day but do eat a lot of cakes/biscuits (never used to but have since as I can't eat chocolate). Perhaps I need to reduce my sugar intake although I don't have sugar in my hot drinks (which are mostly herbal) but do occasionally put some honey in.
I will try reducing my sugar and stop all diary and see if this helps. Also like you I get aches around my eyes and different places around my head (this is only now and again), thought it may be sinus issues but is more than likely the migraine problem. I get many other symptoms which I have listed to Chris in the past but also like him I get the numb tingling around the face and head and occasionally in the back of my hands and ten hissing/white noise in my ears (today I have this).
I do now manage to do more than I used to when first getting the illness but think this is mainly due to me getting used to the condition rather than improving.
Thanks for the information.
Best wishes
Laurence
laurence76206 marlene21102
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Yes I have a long list to ask my consultant Mr Rea next week. Some of my symtpms appear worse since starting the VRT but I was told to expect this.
It must have been a real worrying time for you and your children back then waiting to know if your husband was ok. Unfortunately the marine names don't ring a bell, that said the marines tended to keep themselves to themselves and vice versa. There was the usual banter during scran times and I did know a couple of names but would not remember them now.
Glad that at least you got out up to Rockley sands for a walk around, how does your husband cope with you having the condition. My wife is ok but like me she wishes it would go so that we can get on leading a normal life again.
Best wishes
Laurence
marlene21102 laurence76206
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time between appointments that ways heavily on people .
Hope you've got a good chap ,what hospital are you going to ? Thinki if you go private ,you still end up seeing same consultant as the NHS provide you with ,but private you speed things up ,only thing going for that .Same diagnosis end of day .
My husbands very laid back ,he's good with all of this ,can't do enough .Ex Royal ,his ironing spot on. As it should be Ha Ha ,been married now going on 49 yrs next March ,so all been give and take ,as it should be .
Scran ,not heard that said in many a year .Marines loved stand easy ,and egg banjos .Boy can't they drink tea .We planned to do fair bit at our ages ,but life throws things up when you least expect it ,can't change things ,just how they are for the present ,and hope we all get better .Get back on right track we were on prior ,we didn't want it ,as my husband say me could well have been him this happened to .
Go easy ,let's hope you get help ,then give us here some hope ,Anne placed a good bit yesterday guessed you've read it ? Takecare Marlene