Hello and greetings from sunny Scotland<br>
I've been reading this board for a while - it's so useful - and I'm hoping that someone out there might be able to shed any light on what has happened to me. It doesn't seem to be half as serious as some of the things that are being talked about, but it's really scaring me and I want everything to be back to normal!

What happened to me:

About 2 and a half years ago I went on a drinking session with my brother. I don't drink much (honest), although sometimes I do have an adverse reaction to drink, even if I only have a little bit. On this occasion I had several glasses of wine on an empty stomach, and the next day I was retching and throwing up really violently for most of the day. I was probably sick 30 times. I tried to drink water to keep myself hydrated but it just came back up. The last time I was sick I brought my head back up and the whole room suddenly started spinning really violently - it was TERRIFYING. This happened a couple of times - whenever I moved my head, and there was a 'fizzy' or numb feeling in my head which is difficult to describe. I assumed it was all part of the reaction to the drink. Then I got up and about the next day and things slowly seemed to get back to normal. But a few days later the spinning started again, when I turned in bed. The crippling dizziness stayed for about a week and I had to stay lying down. My husband is a saint and looked after me brilliantly and helped me to walk to the toilet etc. The dizziness wore off to unsteadiness - I could go to work, but now had this terribly distant and detatched feeling where I kept finding myself staring in to space and it was a real effort to drag myself back in to reality. There was also some tinnitus in both ears and a headache. The docs said it was probably labyrinthitis and would go eventually...which it did. 8 months or so later I was feeling almost 100% again thinking thank God that's over!

Then about 4 months later I went on holiday and a week in to the holiday it all started again! I couldn't believe it! I really thought that something that scary could only be a one-off! The severe diziness started about 6am when I turned in bed but didn't last quite as long as before (couple of hours) but then there was that distant washed out feeling again - like I'd been hit with a massive sledgehammer, or had a huge hangover. We looked at the holiday snaps afterwards and I really look like death warmed up - like I'm 'behind myself' somehow. I racked my brains to think what might have caused this to happen again: drink? I only had 1 small drink the night before with a meal, so I ruled that out. I had been diving into the sea, but couldn't think of anything else. About 4 months later I felt back to normal again. I hadn't missed any work this time because it had happened on holiday, but when I did return to work the 'sledgehammer' feeling affected my confidence and concentration?


Since then I've had 3 more attacks which are less severe in terms of the spinning, but are getting closer together. Sometimes the dizziness wakes me up when I turn over in bed, but when I open my eyes everything is still - as if I have to see things to let my brain know where my head is, and I don't count these as 'attacks' as I seem to be OK the next day. The feeling of being removed from reality is still with me on and off, I also feel like I am on tenterhooks waiting for the next episode of diziness. My work has been very good to me in terms of sick leave, but it takes ages to see a specialist here (7 months) and the one ENT guy I paid to see privately gave me a hearing test which he said was fine, and has referred me to a neurologist and a vestibular guy. He rules out BPPV because of the length of the episodes and the sledgehammer feeling, and says it's probably not Menieres because my hearing is ok.


Does anyone else have any ideas? I thought it might be some kind of ototoxicity but I can't imagine what from? Sorry this has been such a long post...and thanks for listening!

Hi there and welcome. Firstly, did you ever think you disequilibrium would never go when you had it for 8mths the first time? was the unsteadiness you had for all that time worse with head movements and did you have "bad periods" where just as you thought you were improving...you went down hill again?

I ask because I have had L'itis for 7 mths now and just want to see if my symptoms are normal! It goes on for such a long time doesnt it?

I think yours is L'itis. It does reoccur I have been told. I bet the diving on your holiday set it off again. Any change in pressure can set it off again if your ears are already "weak".

Eventually, you will get through it and it wont return or very infrequently. Apparently the reoccurrences are the brain "decompensating" where it forgets how it healed itself afetr the first bout. Just as you describe, the reoccurrences are shorter in duration.

I think if you had menieres it would be violent spinning and the unsteadiness would not be there for 8 mths after. Sounds typical of the dreaded L'itis. Hope this helps xxx

Hello Emsybobs!
Thanks so much for your quick reply...how kind. You mean labyrinthitis right? My ENT guy did suggest that, but he thought going to a neurologist would be a good idea because he's a wee bit worried about the headaches and the prolonged nature of the attacks. Yes I know EXACTLY what you mean by having good days and bad days...and thinking the unsteadyness will never go. At the moment I'm feeling like that, because I had an'attack' about 10 days ago (very bad spinning which was caused by lying back on the be very briskly). I'm getting a bit paranoid about large head movements now, which doesn't bode well for my driving test (Friday, so stay clear of Edinburgh on that day!!!).

You say you've had it just the once? I hope it goes away and stays away. You've been so helpful - I'll let you know how things go. Bye

Hi tartantoenails,

It sounds like you have a classic case of positional vertige called BPPV (benign paroxysmal positional vertigo.

Check out the sites I've suggested in another posting. http://www.healthboards.com/ubb/Forum72/HTML/000606.html

What do you think?

I've had it for 38 years since I was 11.

I can get you more sites if you're interested.

I have lots of suggestions for you. Try not to panic..it won't help.

The office tests are easy for your doctor to do, and the symptoms are fairly straight forward. Yes, there are other symptoms that you will experience...but the main point...it is positional. You can have it in conjunction with other vestibular disorders.
Something needs to trigger it. The boozing didn't do it.

In any event, take a look at the sites to see if you relate.

quincy

Glad what I said was helpful. Not sure about BPPV. must say I dont get it when I roll over in bed etc, just when I move my head up or down when sitting or standing. Anything to do with the inner ear creates dizziness by head movements. BPPV I think is quite severe spinning and episodic. It wouldnt explain your unsteadiness for months. Good Luck. Let me know if you go to a different ENT and find anything new out. When you had it for 8 mths first time round, did it go completely for that 4 mth gap? xxx

Hi Quincy & Emsybobs

Quincy - Thanks for your reply and the link. I had suggested BPPV to my doctor, but as you say Emsybobs, he thought the prolonged symptoms didn't quite fit. I have done quite a lot of looking on the internet (I'm a web developer and I can get away with mucho surfing when the boss is out/back turned...) so I've read about the Epley manuover etc and I know you can do excercises to try and reposition the canaliths or crystals that are supposed to have fallen out of place - did the excercies help you? You seem to have been ill for a long time so I hope they have. Anyway, my doc who is a great doc, but not a specialist, offered to try the Epley manouver in case it was BPPV, and said it wouldn't do any harm to try. So I might go for that, and take an advance break from work in case it sets off the dizzies. The vertigo WAS very severe at the height of the episodes so perhaps it is BPPV? Now I'm really confused!

Emsybobs - yes my head did return to normal for those 4 months, although I think there was still a little tinnitus. This sounds really stupid, but I live on a really noisy street, and it's only when it's quiet that I really notice it. I get quite a lot of popping in my ears, like when you are on a plane taking off. That doesn't bother me much. I also get a feeling of fullness or being blocked in my left ear more than my right, so when I swallow it sort of 'crunches'...O help I'm waffling again!!!

Bye to you both and thank for your time.xx

Hi again,

It's very difficult to get diagnosis when vertito/dizziness happens, but harder when it's persistent.

No disrespect to "what's out there" but there is a habit for people to only focus on the one or two main popular bits of information. SInce that's regurgitated, it's said over and over and people tend to think that's the only way it should be diagnosed.

There are 3 canals in each ear. The most common is the posterior canal which gives the classic symptoms that's "out there". There are also 2 others in each ear that gives other symptoms. You can also have otoconia in more than one canal; also in both ears but in different canals in each. I have that.

There are two schools of thought on the otoconia. One is that the crystals get caught on the cupula; the other is that there is otoconia (crystal) sludge that makes its way through the canals.

The Epley isn't the be all and end all of BPPV.

There are 3 patterns of symptoms of BPPV.
1)self-limiting which stops spontaneously. (can last days,weeks or months)
2)remitting/recurring which has symptoms that come and go (can last weeks, months or years!)
3)persistent (lasts indefinitely consistently and does not go away without surgery)

I have the first one in my right ear and now the second one in my left ear as of 5 years ago.

I wish some people would get smart about allllll the symptoms before suggesting it "couldn't be".

Unless you've been there, you're only limited to the stuff people are telling you and what's "out there". If that's only the limited "common" stuff.....well, you certainly don't know all about it.


tartantoenails -- I have a few other sites that may give you more questions for your doctor. I'll list them at the end of this posting.

There are also some exercises that you can do yourself. Sometimes they may make you feel worse, but try them again.

The worst thing you can do is baby your head movements. The exercises will help you to get your brain thinking that the vertigo and dizziness is normal and will stop overcompensating for it. Your "off" feelings will eventually become less.
In the event during the exercises..sometimes the otoconia will be dislodged and make its way through the canal. You can actually feel it happen.

Please get checked by x-ray for your sinuses. I had two and my BPPV attacks were awful. Medications cleared them up and eventually those weird head feelings started to go away.

I take Sudafed -- only one 60mg per day. It keeps the sinuses and eustachian tubes open. Seems to be helping. I have the same "crunchies everytime I swallow in both ears, plus tinnitis and fullness"
You can also try nasal lavage (irrigation,wash) that will help greatly alleviate that fullness feeling.
These symptoms aren't BPPV, but what they are from could possibly set one up for the trigger of BPPV to occur.

The doctor can easily put you into certain positions to see if you are symptomatic and if you are, your eyes will move in rhythmic rolls which are called nystagmus.

Hopefully, you will be symptomatic at your appointment which will make your diagnosis hopefully easier.

When are you seeing your neurologist?
Don't take any antihistamines, decongestants, anti-vertigo drugs, ativan..etc for a few days or so before your appointment. You can check with the doctor's nurse about that. It can dull the symptoms and like you mentioned it takes forever to get an appointment.
http://www.tchain.com/otoneurology/disorders/bppv/lcanalbppv.htm
http://www.charite.de/ch/neuro/vertigo.html
http://www.homestead.com/emguidemaps/files/vertigo.htm
http://www.pitt.edu/~mercyres/DEM_vertigo.htm


Keep searching for info because not everyone fits into the common mould.

quincy

Hi again Quincy
I looked at the links - thanks for all the time spent. I've never had a problem with my sinuses, but I'm definitel prepared to give the Sudafed a go. At the moment I get some relief from Nurofen Plus, which has an anti inflammatory in it. I've used all the standard drugs they give you to combat the dizzy feeling, but none of them worked and most just made me feel groggy.

Re nystagmus - the doc has never been able to find any, even when I've seen him at my dizziest. I suppose that's a good thing..? The latency period you talk about - the pause between the head movement and the start of the vertigo - yes I can relate to that! Sometimes it takes a couple of seconds. Almost like my brain is one step behind my body! The fulness feelings we talked about are deep in my head, and also sometimes in my ears (but not today.)

Today I am feeling very moody, and recently my moods seem to swing quickly from optimism to depression and I seem to be less able to communicate? But perhaps I am just imagining this, or it is an effect of worrying.

Well thanks again and good luck in your recovery x