Hello to all: I am still waiting for a diagnosis, but in the meantime, I have a question about symptoms. Esp. for those who have BPPV, labs or VN. Did you have one episode of severe vertigo with nystagmus followed by all of the rest of this stuff or do any of you have several episodes of vertigo with the severe spinning and all? I just had one true attack of vertigo with nystagmus follwed by 5 months of the rest of this junk. I am trying to compare my symptoms to yours to see where I most "fit". Thanks for any info and as always, hope everyone is improving!! :angel:

Hi Dizzy2
I wanted to say hello! Nice to hear from you, I was wondering how you are.
As you said in the other post, our symptoms do sound so similar - with the feeling faint and tiredness and everything. That reassures me to some extent.

You asked about vertigo - I had my first attack Oct 29th 04. Then on the following Monday I had another attack of vertigo when I tried to drive to work! Then loads of really bad dizzyness, gradually getting better although it took 2 months initially. Then in Feb I was driving to work and had another attack of vertigo. Then a couple of days after that I had another whilst in the car - not driving but I was texting on my phone!
As I understand it - the initial attack was the start of VN, the second soon after I think was overloading my brain. The attack in Feb was decompensation, when I was texting I think was again doing too much when I felt really ill anyway! Have a search for decompensation - started by Scotsman Feb time. Thats when I found this board.

I believe I have VN or viral labs, but this hasn't been confirmed by any tests. This was the diagnosis at the start and when I have gone back. I am now thinking of asking for some tests. I have a 45 min Drs appt tomorrow with my work Dr who will write to my normal GP and advise on tests etc. Im not really expecting any answers from him as he is only a GP!!, but I am going to ask about the shakiness and faintness and fatigue.
Sorry this is so long. Ive only had the other symptoms (eye stuff, disorientation, feel that I am moving etc) for the last couple of months.

Its good that you have just had the one attack. And hopefully you will not have more. Because so many on this board suffer such similar symptoms I am not anxious about any of these symptoms, but would like to know whether this has followed a similar route to others and whether it is actually VN?

Tesss

ps Ive also had a couple of night dizzyness episodes, followed by a day of bad dizzyness that cleared up within the day - I assumed that was BPPV but do the episodes of that last longer than a day?
Sorry about the long post - I feel like Ive made this about me and i didn't want to do that.
xxx

I am so grateful to have had the vertigo only once, but all of the other stuff is so bad too! Mine is definately worse with stress, fatigue, hunger. Thinking back, I had an earache and I had a fever prior to that, so maybe I had a virus too that brought all of this on. Our symptoms do sound alike! No fun! :nono: My doctor is making me keep a "balance log" so that I write down every time I feel "off" It is kind of funny to run to a notebook and write down everytime I feel bad! I could write a journal!! :p I hope you are able to enjoy the wheel thing you want to ride. I was able to go to a concert last week, which I was afraid of. I wore ear plugs though, since my ears are sensitive. I saw Velvet Revolver, have you heard of them? I felt pretty good and even felt okay the next day. We have to be able to have fun and try to enjoy things, even if it means a little set-back, don't you agree?

HI Dizzy2
My first episode happened in Dec '99 when I was at work and the room just started to spin, violently. I threw up (my captain held the bag for me, talk about embarrassing!!!) and I was driven home. This actual spinning lasted about 2 days straight and my Dr. gave me a shot of an anti-nausient which just put me to sleep. I was diagnosed with Viral labs and lost 37% function of my right ear, (I got my results from a caloric test). It took me about 2 full years to recover from that, and after that would still have bad times (brain fog etc) when I was overtired or stressed out, but didn't have any other vertigo at all......until.....last july when I came down with BPPV. I had fully compensated from the labs and was facing a whole new type of problem. This was just when I moved my head. Intially any movement would precipitate it but later it was just when I tipped my head back to the right. My friends husband is a doctor and he gave me info on the MEP which worked almost instantly. Since then I have been on and off, mostly the brain fog but no more spinning.
So with labs or VN my understanding (and i could be very wrong here, just how it was for me) the vertigo is with the initial attack as there is swelling etc in the inner ear with the viral infection (I had pneumonia at the same time as the initial infection) The heady foggy brain is due to compensation or lack thereof.
I have to say I am almost there, have had some amazingly clear days recently and apart from a scare last weekend which Subs30 helped to me put me at ease, I am feeling like the end is in sight.
This has been a rough road, almost 6 years of it all together, but here I am coming out the other end feeling like it's going to be okay. I have learned so much from this about myself and how to deal with th crap it throws at us. I am stronger than ever and intend to use these new tools in my everyday life. Keep up the good work with the VRT and keep up the positive self-talk, most of all, be nice to yourself.

Thanks. I actually have not started VRT or anything. It has taken this whole 5 months just to get sent to a neuro-oto. Have gone thru all of the various doctors, cardio, ENT, GP, allergist to get somebody to tell me what is wrong. Finally to the neuro-oto, but just not fully treated yet. Still going thru some tests and all. Maybe I did not have labs or VN, since my vertigo only happened once and lasted for just :confused: a couple of minutes. Maybe BPPV that I have been compensating for ever since?? Glad to hear that you have light at the end of your tunnel. :angel:

Hi Dizzy2

I had my first violent vertigo attack in early June 2001, I rolled over onto my right side in bed in the early hours of the morning and the world just turned over and over and over...... After that, if I was lying or sitting down (e.g. laying back a bit in a recliner or similar), even I even turned my head slightly to the right, I would get the violent spinning again. When lying down (I had to start sleeping on my left side only) sometimes even if I went to lift my head off the pillow or turn a bit towards lying on my back, I would get the spinning again. It was horrendous, I had no idea what was happening to me, and this occurred 3 days before I started a new job. I went to several doctors who just told me "it will go away on its own". I did some research on the Internet and found the description of BPPV which seemed to fit the violent vertigo I was experiencing, I then had to practically beg doctors to give me a referral to an ENT - finally one did give me a referral after 2 months! They all seemed to think it was a waste of time. The ENT diagnosed BPPV on my right side then sent me to a physio who treated balance problems and she did the Epley on me then and again about 5-6 weeks later (she moved back to the other side of Australia shortly after, and I was told no one was taking over from her). She gave me a couple of basic visual exercises, but nothing else in the way of VRT. By this time, I had also read about the Brandt-Daroff exercises and had started doing them at home.

The violent spinning episodes stopped but I still had MAJOR eye problems, 24/7 feeling of movement even when sitting or standing still, "trampoline walk", unable to walk in straight lines, when I was lying in bed at night, I felt like the bed was "dropping" from under me. These symptoms started at the same time as the first BPPV attack and have continued in the almost 4 years since although to a lesser extent now, I mainly have visual problems and the constant off-balance/dizziness/feeling of movement (although not as strong as before). I have also had recurring BPPV attacks, which I have managed in the past by first using the Brandt-Daroff exercises and in more recent times the MEP. Sometimes I would go months without an attack, other times (like this year) I had 4 attacks in the space of just over 3 months. I never knew when an attack would happen, often I would just wake up and the room would be spinning, although sometimes it would happen during the day, usually in the afternoon - my vision would just suddenly go "weird" and I would have huge problems with perspective, everything would seem almost too clear/sharp and I couldn't bear to look at anything for long, I had to keep moving my eyes and had a lot of trouble moving about. I would get home as quickly as possible (although I used to have to wait if I was at work) and do the MEP, and the spinning would be there). I used to think I mustn't have been getting the crystals (ear rocks) out of the canal successfully and that they must have been getting back in again. However I am now seeing another physio who specialises in vestibular problems and his diagnosis is that I have a problem with the otoliths (balance organs) in the inner ear being undernourished either by nerve or blood supply (sometimes both) and this causes them to atrophy or "wither" a little and keep shedding off the little crystals at intervals, so these get into the canal and cause the recurrent BPPV attacks, so it's not the same crystals each time that are causing it but new ones being shed by the balance organs. He has given me a VRT program designed to specifically stimulate the otoliths to get them to work properly and hopefully stop or reduce the "casting off" of these crystals. I am just at the end of week 3 of the VRT program now and go back to see him at the end of next week. I think there has been a slight improvement so am keeping my fingers crossed!

I am glad to hear you have only had one vertigo attack - that has always been the worst part for me, I lived in fear for a long time (and still do, to some extent) that I would have another attack, especially as they kept coming back and no one could tell me why. The day to day symptoms were difficult enough to cope with, let alone waking up with violent vertigo, especially when I had to take yet another day off work. I have a very unsympathetic boss, which doesn't help matters at all! Like you, stress, fatigue or hunger makes my symptoms worse. Going through a marriage breakup 2 years ago sent the stress levels through the roof, so things were pretty bad for a while there!

It may well be that for you it was a BPPV attack, seeing as the vertigo only lasted a short time. The VRT guy I am going to did a LOT of testing and has told me I don't have any nerve damage so it doesn't appear I have ever had labs or VN, so I don't have any experience with the symptoms from them. I have been told I may have MAV too (I've had migraines since I was 21) and this may be adding to the problems, but the VRT may be able to help that as well.

Good luck with the tests and I hope they can give you some sort of diagnosis soon and then get on the path of treatment, whether it be VRT or whatever. Let us know how you get on.

Julie

Hi Julie, you sound just like me. I have had this crap for 2 yrs. PLEASE share exactly what vrt you are doing. we don't have any doc here that specialize in dizziness. I have just started using valium in the last 2 weeks to get some relief from this. This dern 24/7 feelings of being constantly in motion is driving me nuts. In the first yr of this I had 4 epleys done and those did stop the room spinning but nothing helped the motion, visual symptoms, etc. Thanks, Belle

may i ask what tests the cardio did.ive just seen a dr who suggested i postpone the neuro-oto route and see a cardio specialist.as he thinks it may be a swollen blood vessel in my neck due to consistent discomfort there over many years

Hi Belle

If you check out my post of a few weeks ago "Been for my first visit to the VRT guy" (or something like that!), it fully explains what the VRT guy said to me and also the exercises he gave me. I can't remember if I mentioned in that post about doing a daily set of Brandt Daroff exercises (which the VRT guy said I should do, especially as I had a bad BPPV attack the day before I saw him), but am wondering whether they are actually helping or hindering! The general consensus on the board seems that the BD exercises are of no benefit, and I am tending to use the MEP on a daily basis instead. I see the VRT guy again at the end of this week, so will post again once I've seen him, especially if he gives me some new exercises.

Hope the info might be of some help to you

Julie :wave: