Is this Vestibular Neuritis?
Posted , 7 users are following.
Here's my story. I’m a 55 year old male. My symptoms started last summer. One day at work while sitting at my desk, I just didn’t feel right. I find it hard to describe but I guess “unsteady” is probably the best description. This was evident as I tried walking around afterwards because I had to concentrate more than normal to walk in a straight line and keep myself upright. To cut a long story short, this symptom has been with me on and off, mostly on, for about a year. It’s not spinning vertigo. I’ve had 3 or 4 nasty episodes since then when I felt like I was falling, or being pulled down, but they’re not regular occurrences. Fatigue definitely increased as the months progressed.
My GP’s first guess was an inner ear infection so he gave me antibiotics. No change.
Next, saw an ENT specialist. Various tests and an MRI showed nothing untoward, only inflammation.
Next, saw a cardiologist. Nothing untoward.
Next, saw a neurologist. Over 4 or 5 visits, he did the usual tests in his office. Nothing untoward except for a mild failure of the Unterberger test twice (so not every time). Apart from reducing, and then stopping altogether, my BP medication (Lisinopril) as a test, he did no other tests and there was no confirmed diagnosis. He concluded, by exclusion, that it is a vestibular issue and told me that it would get better over time. I was to go about my business as usual to retrain my brain. No physio necessary. He didn’t commit to the term vestibular neuritis, but I assume that’s what he meant. That was a few months ago.
Various blood tests for everything including Lyme were negative.
Doctors and specialists have asked if I remember anything that could have caused my symptoms. The only thing I recall is a nasty sinus or chest infection that caused me to be off work for a week. I didn’t see the doctor. It was’t your average cold - it kept me in bed for days with lots of coughing. However, this was some weeks before I got “dizzy”. I’ve had hay fever forever and it was right in the middle of grass pollen season.
My current symptoms are:
I can’t stand up for very long without feeling unsteady. However my balance is good when I try standing on one leg and that kind of thing. I’ve tried doing VRT exercises but they don’t seem to help.
I get tired and unsteady very quickly after any physical activity.
My sleep is OK.
My BP’s OK, even though I’m off the medication completely, but it can fluctuate from day to day from slightly low to slightly high.
I’m intolerant to heat, and especially high humidity. Similarly the kitchen cooking environment with smells and extra heat and steam.
I get episodes where I feel really unsteady to the point where I have to sit or lie down. I haven’t been able to determine what brings these on. They are always accompanied by an increase in sinus and ear pressure and I’m often really tired afterwards and sometimes go to sleep.
Sometimes, lying in bed with my eyes closed I get the strangest sensation in my head. This is really hard to describe but it’s like everything’s jumbled up for a few seconds - sort of out of sync, like if you had a pulse from your heart and a separate pulse in your head and they weren’t beating together. It settles down (gets back in sync) after a couple of seconds. This could be what I’m experiencing when I get episodes standing up but I really don’t know.
My question is, to those that have had it confirmed, or anyone for that matter, does this sound like vestibular neuritis? And if so, is it just VN or is there something else going on as well? I’d be really grateful for any suggestions/advice/confirmation as I seem to be running out of help from the medical profession.
0 likes, 27 replies
chrs12 BoDizzy
Posted
BoDizzy, I have never posted before, but i must now. Your story could be mine; I have had the exact same journey. I mean, the exact same symptoms and tests, including hospitalization and MRI. All possible tests have been completed (normal) and still no closer to any particular diagnosis. I am very curious to see where your journey leads you as my physicians; neuro, ENT and primary are now all out of tests to run. It's a monitor and we will see type of situation. Please keep us abreast, as will I. Totally frustrated in Georgia.
chrs12
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BoDizzy chrs12
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Unfortunately, I don't think we're alone. I was warned early on by my GP that I may never get to the bottom of it. Dizziness, or whatever it is, seems to be one of the hardest things to diagnose. Out of curiosity, have you been seen by a neurotologist, or to a balance clinic? I haven't - the nearest one to me is long way and would require a 2 night stay, and quite frankly, I can't face it.
chrs12 BoDizzy
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rocksolid BoDizzy
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I have been light headed for about 7 yrs non stop. First try not to let it bother you. I always feel a little drunk or like I did not get enough sleep. I would say to make sure your vitamin B12, magnesuim, and Iron levels are all good. I was told I have vestibular migraines but I don't thonk that is my issue. There is a nice group on facebook, just type vestibular migraines and join one if you want. I went to an ENT who did a VEMP test on me. It's an easy test that checks your middle ear and neck muscles. I did not do well on the left side of that test and was told it might be my neck muscles causing the issue. Look up SCM muscle issues and trigger points and see if that describes you. I am seeing an Osteopath doctor who is working on my neck and I think it is helping.
Guest BoDizzy
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BoDizzy Guest
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Nah, it's not BPPV. My ENT tested for that about 9 months ago.
gillian76726 BoDizzy
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BoDizzy gillian76726
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Yes, I do. My neurologist wanted me to see a neurotologist to confirm his suspicion. That's what I was referring to in my question to chrs12 but I think she may have misunderstood. Unfortunately, my nearest is a long way away (in UK terms). So, in your case, what tests did your neurotologist perform and what did they conclude? What's baffling me is that my balance is OK and I'm having a hard time believing that all my symptoms can be explained by VN. For example, the heat intolerance - how is that connected? I'm more inclined to believe that my unsteadiness is better explained by something like orthostatic intolerance.
gillian76726 BoDizzy
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Whereabouts in Uk are you? I am also in UK. I went to,one in London, The National in Queens Square. I noted some people in waiting room had travelled (As in had small suitcases!) I had a hour's,worth of all kinds of tests, cant remember them all now, bit pretty extensive. But as i had had the conditon for a few years they could,only come up woth 'Chronic Disequilibrium'! I had 6 months of Vestibular therapy which to be homest didnt help much. I now go for Bowen Treatment (Private therapy) once a month,,which imfind helps me much better. My therapist also gives me exercises, not like the VT ones at NHS.
let me know what area you're in?
BoDizzy gillian76726
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I'm in deepest darkest West Wales and I'd need to go to London. Up the night before, tests the next day, results the day after - that's what I was told anyway. I bet you were delighted with the 'Chronic Disequilibrium' diagnosis - probably something you could have determined yourself. BTW, what's the Bowen Treatment (I could google I suppose)?
gillian76726 BoDizzy
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Oh dear! IS Leicester nearer to,you than London. I believe Leicester Infirmary hospital,has excellent Vestibular clinic,,so i've heard.
Bowen treatment is basically Muscles and Nerves. As my lady Sal tells me the signals/messages to the brain Re balance start in the feet and all The way to brain. One of,the exercises she's given me is standing on one foot. Yes i,know they do that in Vestibular therapy too, but with hers you can hold,into something,,lightly, like a windowsill. Just standing with knee slightly bent, core engaged, pelvis tucked in. Only need to,lift one foot,off ground a few inches. Try to hold, say for, a count of ten,mthe. Do,other one. Repeat 3 times each. I have problems,looking down,,eg when washing up at sink, so,i,will,often do,it while,i'm doing dishes, haha! Seems to,help, espec when i'm bad which is usually when i'm tired. I have the same intolerance for heat and humidity, so,have a slection of ice gel.packs in my freezer for back,of neck. I,have real neck issues too, amd she releases that for me. It's all gentle, not like chiro or osteo, bit you know when they hit the right spot! It may be worth your while googling dor Bowen therapists in Wales. I' m seeing her next Tues so will ask,if she has any suggestions on ppl there as i believe she has a list.
margaret22116 BoDizzy
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I just tried to respond to your posting but ended up posting in the wrong place, hope I have now managed to post in the correct discussion!
hi, I get quite exasperated when I read posts like yours from people with such obvious auto immune issues who are being told that auto immune disease has been ruled out like there is some standard blood test which covers every auto immune disease on the planet. I have an auto immune disorder and my blood tests are often unremarkable. The fact that there was some inflammation present is a bit of a give away. Have you seen a rheumatologist??
You say you were borderline for auto immune disease...what did you mean by that? Was esr raised or crp and was ana checked. You have such standard symptoms it is the first thing that should be properly ruled out. You really need to see a different doctor. Are you based in the uk? If so what area are you in??
My mri's show nothing at all. Please don't worry that you have something terrible wrong which the scan has missed. My brain scan was described as 'pristine' yet I had the most horrific symptoms. That is because my symptoms were caused by inflammation and there is nothing to show on a scan. Treating the inflammation got rid of the symptoms. It is so awful that people have to go round and round in circles. Doctors just don't understand this problem.
BoDizzy margaret22116
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I think you meant to reply to chrs12's comment about her borderline auto-immune result further up in the thread, but never mind. How was your inflammation treated?
margaret22116 BoDizzy
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Haha, I am all over the place today. That's the dangers of reading stuff on a phone handset.
So my symptoms began like this but as time went by progressed onto other symptoms though not at a fast pace. I ended up with crippling migraine which was ruining my life. I was diagnosed about 13 years ago and the first treatment tried was imuran which didn't work for me. I then used mycophenolate with more success but still had the awful migraine. Turned out that was caused by inflammation of the brain stem. I was finally treated very successfully with interferon alpha.
I think with auto immune illnesses the earlier you are diagnosed and treated the better because for some people symptoms will just worsen over time and become more difficult to treat. Though not always the case.
I am currently in a kind of remission. I still have some problems related to inflammatory activity. Like inflammation in my gut and sinuses and in my feet. I have been completely off meds because I was in this sort of remission. I no longer have the vestibular problems ...no dizziness no migraine. I don't know if they will return. I am seeing my specialist this month and may try some meds again to take care of these random inflammatory problems. Depends what he thinks is the cause really.