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
margaret22116 BoDizzy
Posted
Reading your post again it is almost a carbon copy of what happened to me. At the outset I had no idea what was happening to me. I saw ent and I saw a neurologist who all said I was fine. They had no clue. So the actual problem is they seem to be the place to start but they were completely unable to diagnose me. And in retrospect that makes total sense. What I have is not a neuro disorder and it is not specifically an ent problem either so they don't know where to start with it.
My mri's etc were always really clear. The only thing that showed any indication is that my esr and crp were slightly raised. I only got somewhere when I was referred to a rheumatologist. That came about because about 4 years after the dizziness etc I began to get joint pain. When I went to the rheum appointment I explained what had been happening to me. I had always had stomach issues which were put down to IBS which I didn't believe I had. She immediately registered that I had some kind of auto immune atuo inflammatory condition going on and referred me on. IT still took me a year of seeing an immunologist to be diagnosed. These issues are very very difficult to pin down for the majority of doctors.
Even after diagnosis I saw a neuro because the migraine I described before became so bad due to inflammation that I began to have very mild seizures. My specilaist who was treating me at that time only referred me to neuro to rule out any other causes of the seizures. She was lovely and very understanding. She said she couldn't diagnose me with anything specific because there was nothing of a neurological nature going on and that was her discipline. She said she understood there was some kind of 'complex migraine syndrome' going on of a nature she was unable to diagnose. She was entirely happy that I was being seen by another specialist who she said was capable of understanding and treating my condition. It's not that she didn't know about those disorders just that her training was not in that field.
Since then I have been seen as part of my overall care, by a neuro who has a very specific interest in inflammatory conditions, and he understood very well what was going on. But he is unusual in his field and is used a lot by the society I am a member of as an advisor on how our condition affects the central nervous system.
BoDizzy margaret22116
Posted
That's interesting. As I mentioned in my original post, ENT found inflammation but I put it down to my seasonal allergies. What's also interesting is that I have been diagnosed with IBS, again as a sort of fallback diagnosis when there's nothing else obviously wrong. A few years ago when I saw a gastroenterologist for my gastro issues he mentioned that there was inflammation. Maybe it's all connected. I don't know about you, but in the absence of a definitive diagnosis, and in desperation I suppose, I tend to cling on to anything that sounds plausible. I've considered all sorts of possibilities from B12 deficiency to MS, none of which seems to be correct. Unlike you, I don't have migraines, or at least not the classic blinding headache type. On the plus side, my GP is willing to refer me to anyone, partly because I have private healthcare but also because he realises it's beyond his expertise. I have no idea where I'd find an immunologist though. Are you in the UK?
margaret22116 BoDizzy
Posted
hi there, yes I am in the UK are you? I was diagnosed 13 years ago after years of struggling and seeing different docs. It is interesting to note you talk about allergies. So many of my fellow sufferers have quite pronounced allergic reactions too as do I.
I reread your posts and you're in Wales. Ok that rings loud alarm bells your treatment there won't be great. But see that you travel to London for consultations. That's good. I'd suggest you get an appointment with a very good neuro who also has his background in inflammatory disorders. Can I pm you his details? A great guy who understands this area so so well. He is a world authority in his area. He does consult on the nhs but he is also available privately and will see you within a week normally if you could go to him. Follow up can be on NHS and many people travel to see him because of his specialism.
I think you mentioning inflammation is ringing all kinds of bells for me. I always have inflammation in my stomach and sinuses.
Not too many of the people I come across have the migraine aspect which I had but a percentage do. The way you have to think of it really....if it is anything similar....is that this kind of condition can cause inflammation to flare up anywhere in the body so it can seem like random unconnected issues.
The other issues that can be significant....quite some time after developing the dizziness and fatigue, like years later I mentioned joint pain. Also later I developed a red flush on my face and neck which looks like a classic lupus rash (I don't have lupus though) also I had the light sensitivity and scratchy dry sore eyes. I also much much later developed electric shock pain which started in my ear I think first of all. Then it went and later cropped up somewhere else.
I need to point out, I am 54 years old now. These symptoms took a long time to manifest. They did not come all at once. I seemed to get worse and worse with every decade until I was finally diagnosed in my very early 40's. I only developed the joint pain about 2 years before that.
Muscle cramps and pains can be another telling sign a lot of upper torso pain and back pain. The tummy issue is also very significant for a lot of sufferers. Some of the other symptoms are not so common but most people in my help group I would say have tummy issues. Lots are diagnosed with IBS before they get a proper diagnosis. Sinus issues can also be common.
BoDizzy margaret22116
Posted
I don't have all the symptoms you mention (for example, no joint or muscle pain) but I think this is well worth pursuing for me. I may have confused you but I haven't travelled to London for consultations as it seems a daunting task at the moment. By all means PM your specialist's details though, so at least I have the option. I will also investigate if there's anyone nearer. Thanks for taking the time to respond.
margaret22116 BoDizzy
Posted
Oh ok sorry, I have people in my help group who are based in Wales. I will have a look and see if there is a good treatment centre. I know they haven't been the best area for this kind of diagnosis/treatment and not sure why. And re symptoms....think the list of possibilities is soooo long to be honest. Most people will not have many of them while others have a lot. Anyway, any questions don't hesitate to get back to me.
BoDizzy margaret22116
Posted
Hi again. Would you mind explaining what was the process that lead to your diagnosis once you were under the care of your immunologist? You said it took a year so I'm guessing it wasn't trivial. Did he run a series of tests or just try different meds until you started to feel better? I guess what I'm asking is: was there an "Aha" moment when he found some definite evidence of what it was?
margaret22116 BoDizzy
Posted
Well yes it was a complicated affair. They took a full medical history from me. Then I was prescribed a long course of anti biotics. I can't really remember what they were. They did nothing to help. All other diseases were 'ruled out' as far as you can do that via blood tests and , as I said, looking at the development of symptoms. Lots of disorders are looked at and systematically ruled out. So its a bit of a process. I don't mean in detail but they do the whole set of blood tests etc. Your gp does not normally do the whole range of tests, there are some which are really only undertaken by specialists. For example I was referred to an oral immunologist to check for Sjogren's. in addition to blood tests I was given a saliva tests. Tests were negative. That is not always the end of the story. The problem is there is no absolute test for these disorders. That is something which is explained to you when you start undergoing the diagnostic process. Cambridge are currently trying to develop a standard blood test.
I don't want to complicate things, I have a particular disorder of which ulceration is a common symptom. This is a particular symptom for my disorder and not common to other auto immune diseases. So that helped them narrow it down for me.
Then, while I was seeing the immunologist, I had an episode of uveitis. Inflammation in the eyes. I'd never had that before and I was in my maybe late 30's early 40's. It was diagnosed at a&e Moorfields eye hospital. So, again, that was a bit of a smoking gun symptom. So after about a year I got a diagnosis. These were the "aha" moments for me.
With some other disorders, there aren't quite the same definitive symptoms and, if blood tests are negative continually, it is difficult to get a firm diagnosis for some people. However, I think....and don't quote me on it....some specialists will proceed and treat you on the history alone if that makes sense. Most of these disorders have similar treatment plans even though symptoms can be different. immunosuppressants are the standard treatment. So that is a course which is open to them to try to see how your symptoms react to treatment.
There is a difference of course in treatment plans and a whole range of meds available these days. I think it is crucial to get to see the right specialist because the ones who deal less commonly with these kind of disorders are less confident about treating them. They are really never treated by, say ent or neuro. Not their field. If they suspect you have some sort of auto immune disorder they will normally refer you on to someone with expertise in that field. That's if they even pick up on it. I had been seeing ent and gastro at the time I was referred onto immunology. They hadn't picked up on my symptoms at all. It was rheumatology, as I think I mentioned in a previous message, who realised there was an underlying condition. But even she didn't know what it was. She initially suspected Sjogren's or an inflammatory bowel disorder. She was wrong. They often just aren't able to diagnose these disorders. This is why we spend our lives going from one specialist to the other. Such a spread of symptoms which seem unrelated but when you finally get a diagnosis it ties them all together. And, if you get effective treatment as I did, suddenly all your symptoms can either become manageable, or, if you're lucky, disappear altogether. The rheum I saw referred me onto the oral immunologist and, after our consultation, I asked my gp to send me to an immunologist at the Royal London who diagnosed me after a year. By the time I got firm diagnosis I was on treatment. First treatment I tried, imuran, didn't work at all for me and it was during this period I got uveitis.
You can see it's a difficult process. But worth it to get to the bottom of what is going on and start trying to return to normal.
gillian76726 margaret22116
Posted
INteresting Margaret you mention Uveitis. I actually first had it whem living in the US. I,have Crohns and Rheumatics, although those were quiescent at the time the eye prob came up. I was later treated at Moorfields when it came up again, but th(when back in UK) but it didnt respond that well to the two,diff eyedrops,,am sure you know them. Ended up being admitted, twice amd eventually 1 year on oral steroids. But then i was told that Uveitis is all part of my condition. Crohns, Psoriasis, Rheumatics etc. Inflammation. But them my vertigo symptoms started overnight,,prob with a virus a d i still think to this day, because the drs,,consultants etc didnt treat it in anyway, eg anti virals, it damaged my vestibular system and there's no repairing that is there? Someone on here once mentions 'cells' in that area (Not,to be confused with crystals), and when the virus destroys these cells, basically that's it!!
it may also be interesting to investigate Epstein Barr virus. It seems this virus has a lot to answer for and can lay dormant in our bodies for years, even from childhood,with no symptoms!!
liz82526 BoDizzy
Posted
Hi Bodizzy,
You sound like me. I started in May . I went to the ER because I felt lightheaded and unsteady almost like I was drunk. Sometimes I felt like a was going to pass out but I don't. My left leg start shaking when I feel unsteady and I have to laid down. I just dont feel like myself . Just like you been to all kind of doctors. I was send to PT for exercises for lightheaded and balnce. Don't know if it's helping but I not as bad as I was. I am still not 100 %. I just did a nerve test today going tomorrow back result and to see what next. I want to know what's going on. I hoping to find answers through talking to other people with similar symptoms. Good luck
tasha28992 BoDizzy
Posted
BoDizzy tasha28992
Posted
That would be quite odd if I was but it's worth a shot. My diet is pretty good.
margaret22116 BoDizzy
Posted
Sorry BoDizzy, I had assumed you had blood tests done which would cover anemia. If you haven't had a full panel of blood tests I'd get that done soon as. I would also look carefully at Vit B12 and ask them to check your esr crp and ana as well if they will do that. I could be informative. Cover all the bases.