:D

Hi guys,

I know some of you will probably say - NOT AGAIN!!!

Would you like to write a small resume - in point form if possible -

1. How long have you been sick

2. First symptoms (How did it start)

3. Main symptoms

3. Possible diagnosis

4. Are you recovering. If yes, what helped the most.

This time I'll print the results so I won't forget.

Here's my history... again. :D

How long - 3 years

First symptoms - gradual - feeling of being pulled to one side
- 1 week after, 24/7 dizziness (no virtigo)

Main symptoms - dizziness 24/7 (borderline virtigo)
- 2 nights of virtigo (spinning -1 year into condition)
- 2 episodes of mild spinning in the past few months

Some periods better than others. At my worse:

Borderline virtigo
Desiquilibrium - feeling like I'm walking on a tightrope
Visual disturbance - fuzzier vision, eyes seem too slow to track movement
Feel pressure/numbness in brain when moving head
Very slight feeling of body moving when resting

Diagnosis No diagnosis

All tests are negative - MRI, CTscan, ENG, blood tests etc.

Not getting any better :confused:

Hi there MP,

Here's my contribution:
1. How long have you been sick: I'm in my 21st month

2. First symptoms (How did it start): violent room spins with nystagmus upon turning my head in a yoga class on Dec. 28, 2002.

3. Main symptoms: room spins when I turned my head that way (sort of tilted back and to the right), nystagmus, after about 3 months brain fog, anxiety, transposing letters, short term memory stuff, inability to recall some words, etc., all the usual cognitive junk, heavy head when under stress, trampoline walk, sensation of floaty motion when walking (driving, biking, everything else okay)

3. Possible diagnosis: diagnosed with right-side BPPV; ENG showed 22% deficit on right side. MRI was normal.

4. Are you recovering. If yes, what helped the most. Yes, and TIME. Unfortunately, it's all that seems to work with this stuff. Oh, and the brilliant Epley manuever. And a sense of humor, and an ever-developing sense of acceptance and patience. Mostly these days I'm at 98-100% on any given day, but it took me a good 15-16 months to get there, and there are still blippy days but they mostly serve to frustrate me and are nothing near the severity of the early days.

T

1. 5 months

2. a constant vertigo feeling

3. vertigo, lightheadedness, overwhelming sensation when looking at store shelves etc.

3. no diagnosis labs maybe?

4. yes... time and gaze fixation excercises

also had the MRI, Blood Tests, etc. im a healthy guy besides this.

Hi MP,

1. How long have you been sick: 1 year, 1 week, 4 days.

2. First symptoms: terrible debilitating viral illness lasting 4 weeks, strong disequilibrium and head fog at the onset.

3. Main symptoms: chronic disequilibrium lead to an acute anxiety disorder and some depression. Strong overall feeling of being ill but unable to put my finger on it, upsetting cognitive disturbances such as feelings of isolation, and feeling like a Salvador Dali painting - surreal! Tinnitus started at 6 weeks and continued for about 4 months. Muscular pain particularly at the neck and shoulders made worse by sitting at a PC.

3. Possible diagnosis: viral lab or vestibular neuritis. Had some BPPV type symptoms at one stage during the 10th month.

4. Are you recovering: YES definitely. The first +ve change came once I started taking an SSRI. Valium was good for attacks. Nothing else helped med-wise. Never stopped moving, exercising, and stayed on track with my life as best as possible. Refused to give in to the symptoms no matter how bad it got. Support was also critical for me. I couldn't have survived without my girl or my Mom on the other end of the phone or this healthboard!!!

5. Tests done: ENG and ECoG plus basic balance tests. ENG showed nothing, the ECoG showed excess fluid in the inner ears according to an otolarynologist but not at Meniere's level.

Best......Scott

hey MP, here goes-

1. 1 month exactly

2. dizziness, lightheadedness, vision changes, foggy head, cognitive interruptions

3. vision is still off (better in the middle of the day, bad in the dark)
dizziness after walking for a long period or reading for a long period
foggy head (trying to get rid of it, maybe it's working)
co interrup (I forget things mid-sentence, never did b/4)
ANXIETY and DEPRESSION and PANIC (can't eat, sleep, go in public places)

4. meniere's or who knows- just had the ENG

5. Sometimes I feel better, Sometimes I'm on the verge of checking myself in to the mental institution. I think this is gonna take some time to get over.

I did have a normal MRI

Hi,

1. How long have you been sick: It will be 10 years on April 9, 2005.

2. First symptoms: After a walk on a very cold day, when I came in that night to go to bed, my body felt like it was moving in different directions - my upper torso was oozing one way, and my legs were oozing the other way. Wooziness in the head that made me feel like I was going to pass out and/or faint or just drop to the floor at any moment. Feeling like I was on the verge of a seizure or something. Very heavy headed feeling. Extreme exhaustion. Unable to walk without feeling "too light". Unable to visually focus on things up close or for long periods of time. Anxiety attacks with symptoms.

3. Main symptoms: Currently, feeling of wooziness - sensation of motion when I am not; either I am slowly moving or oozing, or my environment is. Forgetful and/or unable to word find when very symptomatic. Wooziness is usually accompanied by a headache of some type. Symptoms worsen sometimes for no reason, but are definitely more noticeable the week before my monthly.

3. Possible diagnosis: Been told it could be BPPV or MAV, but no formal diagnosis.

4. Are you recovering: I feel that over time, my body and gradually compensated and I have physically and emotionally adapted.

Have had all required tests, and some repeated as part of keeping track of symptoms. I am healthy.

Hello, good idea!

1. How Long Sick: Started March 2001

2. First Symptom: loud ringing in left ear for three days, following a head cold and ear ache. Then nausea for two days and mild feeling that I was slightly dizzy, then wham full on major spinning vertigo. Constant vertigo for about 8 weeks straight, not spinning but room did not look still, could not walk un-supported and freaked out big time. I coped by crawling to the bathroom and staying in bed for 9 weeks solid Not to be recommnded. Gradually the vertigo subsided into intense dizzy that then wore off about month 4. Have residual symptoms ever since, detail below.

3. Main symptoms: felt like I was moving all the time when I was not, things looked visualy unsteady, felt like walking on a trampoline, incredibly light headed, spaced out and very sick feeling. Felt persistently off balance all the time when walking, even sitting in a chair. Intermitent feelings I was falling down an elevator shaft rapidly. Giddy, dizzy in the head, magnets/ping pong ball in the head, snow globe in the head. HORRIBLE all of it, the worst was that it was 24/7 no let up ever.

Diagnosis: Labrinthitis, then 3 years on the same but failure to fully compensate, possibly mild BPPv at one point.

Are you recovering: YES YES YES, I am in the late 90% range every day now and some days even 100%. The symptoms are all but gone. I dont have imbalance, dizzy is more on and off for brief seconds as are any symptoms that come on. Its more like the kinda thing that bugs you a little like when you have torn your thumb nail down too low and it sorta hurts a bit. I have my life back, I function EXACTLY as I did pre-labs and do not have my mind fixated on this all the time like before. The most annoying thing I get is when I have typed or simply looked down for a time, when I look up I get the feeling that my brain kinda jiggles from side to side a little and when I get up to walk I feel a little off for a minute or so. I occasionally still get the faint feeling but I know its this ear stuff so I let it go after its happened.

Tests: whole lot, showed I had proper labs - mild hearing loss and asymetry between my ears, the left having the damage.

Take care all. xx :)

Hiya!

1. How long sick? It was 2 years in July.

2. First symptom: Bad nausea and sensitivity to movement for 3 days, visual distortion on and off. Then severe dizziness (but not vertigo) hit very suddenly on day 4 and has been with me 24/7 since. I also had popping ear and I had bronchitis 2 weeks prior to dizziness.

3. Main Symptoms:
VISUAL DIZZINESS - things moving, jumping, distortion, have trouble keeping visual world still.
HEAD DIZZINESS - wooziness, spaciness, head feels thick and pressure.
IMBALANCE - feeling as though I am moving. Up and down mainly. But also circular and side to side sometimes.
NAUSEA AND HEADACHES

4. Diagnosis: Right vestibular damage.

5. Are you recovering: I dont know. Sometimes I feel as though I am and other times I feel as though I am right back at the beginning. I hope I am recovering!

6. Tests: All the usual tests. Although I had calorics and ENG 3 times!

Hi MP,

1. 6 years

2. A feeling of falling and just being off balance but no actual spinning. Lightheaded and feeling faint and very tired.

3. As above really but now with blurry vision and neck and head pains. Symptoms worse with any exertion (even just walking) Anxiety and panic. Constant off balance feeling which is only better when laid down.

3. No actual diagnosis - tentative explanations - CFS, inner ear prob?, trigger points in neck muscles.

4. No, if anything I am much worse than when it started 6 years ago, it seems to have been a gradual decline. Would help if someone knew what was going on!!

Hi! Can I join in?

1. How long sick? I was first ill in Nov 99, so nearly 5 years..

2. First symptom: I was making the most of the autumn surf, and kept feeling a bit "wierd" this went on for a week or two, I'd suffered anxiety problems a few years before, and as this seemed similar I shrugged it off as that, and perhaps I was getting a cold. This kept happening for a week or two, until one night I was in the sea, and I started feeling particularly wierd - like I was just going to topple off my board, I'd been in for several hours so blamed it on that. Two days later I came down with terrible flu (so did my friends, and gf), a week later the flu left, I went surfing and felt very freaky... almost like I was going to pass out, decided it was the after effects of flu. The following day, I went shopping and had to come home because I felt odd, it was Nov 5th so that night went to a fireworks display, and I was all over the place, I thought someone had spiked my food or drink, I managed to calm myself, and convince myself it was purely anxiety (as that was how I'd gotten over the anxiety problems years before), and had a few beers - I felt worse and worse, my vision went very glary and strange, I still though I'd probably been spiked. Over the following few days, I found I felt pretty foggy, and would feel like I was going to fall whenever I walked more than a few hundred yards, a week or so later I saw a GP who diagnosed me with labyrinthitis, 2 weeks later my girlfriend had to go back to uni for graduation, which mean't I'd be in the house alone for a week - I freaked out, and the spinning got a whole worse, I couldn't leave the house without spinning to the floor, it was a few months before I could manage a small walk to the shops.


3. Main Symptoms: Visual perception problems - things moving, waving, jiggling, distortions, walls breathing, shaky camera syndrome.... eyes on springs, glarey, blury vision.
Woolly headed - like being in a goldfish bowl.
Sensations of motion, feeling of falling through space (which is very mild nowadays), dizziness caused by motion (this was bad then after 6 months it went and came back around christmas), feeling off balance (I used to feel like I was just going to flip up and end up on the floor, after 6 months that improved, but now since christmas I feel generally wobbly - like I can't coordinate my legs), feel like walking on mashed potatoes especially in busy environments.


4. Diagnosis: Peripheral Vestibular Dysfunction - possibly caused by a virus, but thats still questionable, and MAV/Autoimmune problems are still in the picture.

5. Are you recovering: I was, once I read some good articles and had a grasp of what was going on, which was about 4 months in, I realised I needed to get active. So I started my own VRT regime, within a few weeks I was surfing again (not very wise) and at the 6-7 month mark I was well on my way - I was pretty much just feeling visual problems everything else was going. The I had a major set back, due to anxiety, because I was forced to move house - not easy, and everything got a bit worse. Around the 12 months mark I started to develope lots of other symptoms (rashes, arthritis, aching joints, aching stiff legs etc etc), which may be totally unrelated, but knocked me back a bit more. I then went into a cycle for about 3 years (though I did have a prolonged good spell mid 2002), of gradual improvement with sudden exacerbations, which improved over a few weeks to then one day (for no apparent reason) get worse - I don't think I've ever been quite as bad as I was originally - however, I certainly deal much better with it now, and I take the odd bad few days in my stride. Last December, my dizzies got a whole lot worse, for no reason, my attitude has always been to push really hard, so I forced myself to go surfing (even though I could hardly walk down the beach!!) but was far too dizzy and from tensing to keep balance I managed to prolapse a disc in my back. Since then my symptoms have been a lot worse, not helped by my back, which could be effecting the nerves in my legs (as I'm now having a lot of coordination probelms in my legs, and the long term aching/stiffness has now taken on a life of it's own...)

6. Tests: A couple of calorics/engs (both showing an 11% left weakness - but is within normal ranges - so is essentially normal..), rotation chair, postography,MRI, hearing tests - all normal, except postography shows I'm a little over dependant on visual cues. :bouncing:

Hi Everyone,

Just thought I would add my bit:

How long sick: 10 and a half months.
First symptoms: Working at PC felt brief dizziness for a couple of seconds, went away. Started happening more and more until it became 24/7. Plateau-ed around December 03 (very, very nauseous). Started to get better around Feb 04 after starting VRT with many more good days than bad.

Main symptoms: Never had spinning just disequillibrium which lasted all day initially. Then changed to disequilibrium for short bursts throughout the day and now just very occasionally. Can sometimes feel kinda strange by 7pm (not sure why this is but remember someone else posting this) and sometimes get a wave of nausea from nowhere but apart from that functioning fairly normally and continuing with the VRT on my ENT's advice to get rid of these residual symptoms. Oh, and still get get occasional visual weirdness.

Diagnosis: Vestibular neuritis (of viral origin) - followed a bad head cold. Hearing A1. MRI, normal.

Cheers

Lizzy x

Hi Everyone,

Just thought I would add my bit:

How long sick: 10 and a half months.
First symptoms: Working at PC felt brief dizziness for a couple of seconds, went away. Started happening more and more until it became 24/7. Plateau-ed around December 03 (very, very nauseous). Started to get better around Feb 04 after starting VRT with many more good days than bad.

Main symptoms: Never had spinning just disequillibrium which lasted all day initially. Then changed to disequilibrium for short bursts throughout the day and now just very occasionally. Can sometimes feel kinda strange by 7pm (not sure why this is but remember someone else posting this) and sometimes get a wave of nausea from nowhere but apart from that functioning fairly normally and continuing with the VRT on my ENT's advice to get rid of these residual symptoms. Oh, and still get get occasional visual weirdness.

Diagnosis: Vestibular neuritis (of viral origin) - followed a bad head cold. Hearing A1. MRI, normal.

Cheers

Lizzy x

Lizzy,

Just wanted to say I know that later-in-the day strangeness. I've also seen other people post that being tired (which you are more so at the end of the day) aggravates symptoms. If I'm having a loopy blip day, it's usually worst in the later afternoon or early evening. Fairly common I think.

T

Thanks Terri,

I hope the strange feelings in the evening eventually disappear, it usually manifests itself as a feeling of nausea which, when I eat seems to vanish. And I can almost set my watch by 7pm!!! Weird.

Lizzy x

Just wanted to get this back on top for newbies.