Off kilter all day...so fed up and worried 😩
Posted , 9 users are following.
So 4 weeks on Wed I had a dizzy spell from lying down to sitting up in the bath first thing in the morning. Then on walking to work I had a brief feeling of walking diagonally, lastly at work I had a a spin when I turned my head. Got to the Drs same day (by some miracle) and he diagnosed BPPV. Went back to Drs last Monday in tears and he has referred me to ENT and for an MRI as I now apparently don't have signs of classic BPPV. He did Epley Manoeuvre which made me feel sh*t, oh and I've been doing Brandt Daroff exercises. I can look up and down, move my head without spins now. For me I feel off kilter all day every day...I get a swoosh feeling in my head....find walking round town and in shops hard (eyes seeing to much I think) and the pavements feel/look uneven. When I do the Brandt Doroff exercises I'm dizzy on the first drop to the left so left ear is issue, but it only lasts about 6 seconds and isn't a total room spin. My anxiety has gone through the roof which I know doesn't help and I had an emotional breakdown at work on Wed (crap meeting and PMT didn't help). Can anyone relate?
0 likes, 38 replies
Sarahvertigo julie.
Posted
Hi Julie. I can indeed relate! 3 weeks ago, I woke up to the room spinning a hundred miles an hour..eyes all over the place ...vomitting...terrified.
Dialled 000 .was taken taken to hospital....lots of tests ..physio there turned my head left...right ..okay-ish ( left ear the problem) then she gave me Epley manouvre (as They say its BPPV)....aaagh .awful spinning .but after 30 minutes felt better. Next day i felt okay...but tired and stressed. So in the eveing Did the exercises ..and lo! ...went back to spinning! So No more exercises my own doctor said until it "settles"
So now...I'm woozy...feel dull and if I look downwards or upwards i'm dizzy. (I cant ride my bike) I travel a lot overseas and am reluctant to go now. It is indeed frightening.
The real horror is no-one seems to know what to do about it! vertigo! Its debilitating!
I have an apt with the hospital physio in a week.
I commiserate with you and if I get any more info I will advise. I will not let this knock me down!
julie. Sarahvertigo
Posted
Good luck Hun...you sound like you have it quite bad!! Have you been given the Brandt Daroff exercises for home? Yes they make you feel dizzy on the affected ear but they help your brain compensate for the mixed signals it's getting. Easy to do (I put the radio on in my bedroom, 10 minutes, 3 times a day) I think they help. I won't do the Epley at home lol.
I don't think I would want to travel overseas with this condition 😩
lily65668 Sarahvertigo
Posted
Hi Sarah,
I can totally relate! I'm still in the middle of an attack, awaiting an appt with a vertigo clinic. However, I am managing to go about my daily life. This is far from being my first episode of vertigo, and I've found over the years that you can get used to anything in the end! I've kind of got my sea-legs now, so can cope with constantly walking on a moving surface, and I gear things so I don't have to look up or down too much.
I understand your fear about an overseas trip, but I think it depends where you're going. I'd booked months ago for one of my regular 5-day overseas trips. I was due to go last week. I'd got travel insurance so could have cancelled but decided not to let this thing rule my life. Also, it was to a country with a reasonable health service - just in case - though I didn't need it. I can't say I enjoyed the trip as much as I usually do, but I coped OK and am glad I did it.
My one discovery was just how fast the escalators go in that city! I'm a regular visitor, but I must never have gone there during a vertigo attack before, because I'd never noticed the speed before. (I live in a small provincial city where the escalators - like practically everything else - go at a very sedate speed.) I took lifts where I could, but sometimes just had to risk getting on a down escalator, which I must admit terrified me. I felt a bit sheepish standing at the top of escalators, not able to look down to judge when to step on, but people were very kind, and often took me by the arm to help me on.
I quite agree though that you shouldn't be riding your bike in this state.
Waffalobill julie.
Posted
Guest julie.
Posted
You don't suddenly feel okay after the Epley. I actually felt much worse for a few days after. It takes time for everyting to settle back into place. Did you sleep sittng up for 2 days after?? You are suppose to. This will pass.
julie. Guest
Posted
Yes I did (well sort of lol). I asked my Dr if I needed to keep my head still for a day and he said "no" just don't do sudden head movements (I'm UK).
I do feel a bit better today but I've not been anxious so that obviously helps. Still going to work too to keep moving.
Guest julie.
Posted
I have had several Epleys anjd I always follow up with sleeping upright or elevated for 2 nights and don't bend over or look down. It works for me everytime. It can take 3-5 days though for everyting to re-situate.
lily65668 Guest
Posted
Interesting to hear all these post-Epley tips. After it was performed on me in the late 1980s I was never given any advice about head movements or not lying flat, and I wasn't given any exercises either. I could barely walk out of the consulting room afterwards, but was just told I was "cured".
The doctor I saw looked about 90 to me. Admittedly, I was younger then so I suppose people looked older, but he was clearly well beyond retiring age. I'm beginning to wonder whether all ENT specialists are rude and arrogant. This particular doctor had an appalling manner - shouting and raving at me while doing the manoeuvre. The one I saw two weeks ago, in a different hospital, was much younger - maximum 40 I'd say - but had a similar manner, communicating in caveman grunts and roars, and refusing even to discuss my vertigo. I once consulted a homeopathic ENT doctor for (unrelated) chronic sinusitis, and even he was unpleasant!
Hoping to get better treatment from a specialist vertigo centre.
Guest lily65668
Posted
Mine is really nice. I have had great success on doing a mnauver at home called the half-somersault. You can get the video online if you google it. I have to do it 3-4 times though about 30 minutes apart. It's diffrent for everyone. BUT DO sleep elevated for 48 hours and don't bend over or look down. That's important. This allows the ear crystals to re-situate into place and stay there. I have had just as good of results with this as going to an ENT for an Epley. Costs nothting either. :-)
lily65668 Guest
Posted
Thanks Jackie, I just had a look at that video. I'll get myself checked out first at the vertigo clinic as they have the full range of specialists, including an otoneurologist (if that's how you say it in English). I'll let them do the works, but I'll keep the video bookmarked in case I have problems afterwards.
Incidentally, has anyone else had problems in both ears? I distinctly remember from the last serious episode, nearly 30 years ago, that it was tilting my head back and to the left that produced the spinning, and turning my head sharply to the right would stop it. This time it's the other way round. I suspect this may indicate an underlying problem, possibly in the quality of the fluid in the semicircular canals. I suffer from Sjogren's syndrome, an autoimmune condition that affects various systems, so I'll bring this one up on the Sjogren's board as well.