Dizzy spell and fell over getting out of bed. Constant dizziness since
Posted , 9 users are following.
Hello
Just over a year ago, I got out of bed, was incrediably dizzy and fell over. It felt like I had been spinning around.
Since then I get a swaying feeling, like on a boat, whenever I walk.
I do suffer with awful anxiety and this is what my GP puts it down to.
It is ruining my life- I have got myself into a state and now cannot leave the house by myself.
Any ideas on what is going on?
My GP seems to put any symptom I have down to dizziness.
Thank you for reading this.
Liz xx
0 likes, 94 replies
Jay1806 lizzie67
Posted
lily65668 Jay1806
Posted
Jay, all your symptoms would fit in with anxiety, but it's good to know you've had a brain scan to rule out anything more serious. Symptoms should never be dismissed as anxiety until they've been properly investigated to rule out anything else. (I'm a former neuro nurse btw.)
When I was young I used to suffer from anxiety, with occasional near-panic attacks, and had all the symptoms you describe. It was only when I started training as a nurse that I realised my symptoms were down to low-level, unconscious hyperventilation. This changes the body's electrolyte balance, causing all kinds of symptoms. It's not a dangerous condition, as the body rights its breathing pattern during sleep, but it can make you feel terrible.
Jay1806 lily65668
Posted
Lilly your reply is greatly appreciated, especially with your medical standing. I am due to have a Labyrinthectomy pretty soon as my hearing is demonised on the left and my ENT specialist says I have suffered long enough (periods of unsteadiness over 15 years). I'm just frightened of the consiquences and just relying on one side. I keep doubting the diagnosis because of the added symptoms I describe to you, but hopefully it is accompanying anxiety.
Thank you again
lily65668 Jay1806
Posted
Ah... this is the first I've heard about the labyrinthectomy. So you have been diagnosed with a serious condition other than anxiety by an ENT specialist? In that case, this op is clearly the best treatment.
I'm not surprised you're suffering from anxiety too. 15 years of labyrinth problems would make anyone anxious. My current attack of BPPV has only been going on for two months now, and I get a bit anxious about going out!
Jay1806 lily65668
Posted
Thanks again
lily65668 lizzie67
Posted
OK. My appt with the vestibular physio was for 6.30pm today, which I wasn't too happy about as it would have meant walking home alone in the dark, possibly in an advanced state of vertigo (like last time). He called out of the blue at 11 this morning asking if I could switch to 2pm, which I was very happy to do. Got back half an hour ago.
I wasn't unduly impressed at first sight. Dark, dingy room in the bowels of a local polyclinic. On my way in I passed the previous patient coming out, staggering along the wall - just like me after that horrible old ENT doctor did the Epley on me in the early 90s. Not encouraging, to say the least. The physio appeared to be scarcely out of nappies, his two girl students even younger. But then most people look that way to me these days.
Anyway, I have to say this guy really seemed to know his stuff. Very impressive. Also kept hugging and kissing me and calling me "good girl" and "darling" throughout the procedure. I didn't think I was that nervous! Still, at my age I guess you have to take what you can get!
They put an eye mask on you these days. I didn't have that the last time round. The down side is that you can't see anything at all, which means the vertigo feels much worse when you're being pulled backwards with your head over the end of the table. The up side is that it records the exact direction and frequency of the nystagmus generated by each head movement and sends the data to the computer, so they can tell exactly where the crystals are moving to, and what manoeuvres to put you through to send them into the right place.
He warned me I might feel sick and dizzy afterwards, but I haven't had any problems at all. So far... I guess the proof of the pudding is going to be whether I can eat it tomorrow morning! My only problem is a mild headache and a very stiff neck. He said I should apply some heat to it tonight, as he had to do a bit of damage in all the shaking and jerking about. He also told me I have to stay up as long as possible tonight - no problem as I'm pretty nocturnal - and I absolutely have to lie on my left side all night (on the good ear). That's going to be harder. I figure the best thing will be to tuck the bedclothes in tightly on the other side of the bed, stuff cushions inside, then put a few hairbrushes or other uncomfortable objects in front of the cushions in the hope they'll stop me in my tracks if I try to turn over in the night.
He confirmed I have BPPV generated by my right ear, but said the signals coming from the eye mask indicated I also had some kind of background vestibular problem in my left ear. He thinks this may account for the minor attacks of spinning when turning over in bed that I've had for most of my life. I have to go back next week so he can look into this further and teach me any exercises he thinks might be necessary. Says he won't give me the form for reimbursement from the State medical insurance till I've had 4 sessions. A bit of a swindle, but I suppose they have to make their money somehow!
lizzie67
Posted
Hi
This is super strange - Ive just got a new CD, had a major boogie in the kitchen for 30 minutes, recorded the "work out" on my Fibit.
I was very energetic, twirling, moving a lot and NO DIZZINESS at all.
I went to walk back into the front room and was off balance again.
Im so frustrated and confused as to what is happening.
x
lily65668 lizzie67
Posted
Vertigo can come and go a bit.
Did you see Dr. S today as planned?
lizzie67 lily65668
Posted
Hi Lily
It's tonight at 6.15pm.
So worried about it.
x
lily65668 lizzie67
Posted
Why worried? It's a chance to find out what's really going on. You've been fobbed off for so long, you deserve the chance to get properly assessed at last.
Spend these last few minutes jotting down all your symptoms - including the fact that you suffer from anxiety - so you don't forget anything when you get to the consultation.
At my session on Wednesday I was told that though I'd got classic BPPV generated by one ear, I'd got something different going on in the other one, so I have to go back for a neurotological assessment next week. He couldn't do it on Wednesday, when I was still recovering from the Epley manoeuvre. If he finds anything he's not sure about he'll refer me on to a neurotologist. But that doesn't worry me - I'm just delighted I'm going to get a proper diagnosis.
I'd say grab your chance with both hands!
xxx
lizzie67
Posted
I have an update.
Ive been to see Dr S this evening.
He said I have a peripheral vestivular difiency in my left ear and BPPV.
I am so happy!
He is writing to my GP who needs to refer me to his balance clinic.
Thank you everyone for all your help and support, I really appreciate it.
Liz xx
lily65668 lizzie67
Posted
Liz, that's wonderful news. Progress at last! I just hope your GP takes notice. I can see that possibly being the next problem. Still, now you have the back-up of a proper diagnosis I imagine you'll have the confidence to confront him.
Jay1806 lizzie67
Posted
Really happy you have some positive news of a diagnosis you can work on and resolve. Try to relax now, and prepare to battle it and kick it into touch.
Take Lily's advice on the GP. You can go in there now with a 'told you so' approach.
Good luck
lizzie67 Jay1806
Posted
Thank you.
I went to see him s I was totally fed up with being told everything i anxiety. I mean if I went in with broken arm - my GP would probably say that it was anxiety too! LOL.!
My anxiety does kick in when Im dizzy, making it 10 times worse, my heart goes faster, chest gets tight and then my leg muscles stiffen up.
ANxiety is a total nightmare.
WIshing you well.
xx
lizzie67 lily65668
Posted
Thank you.
God, I do feel awful going above my GPs head but I just had to know whether it was something or my anxiety.
Ill just go and see any GP to get referred to the clinic.
Hope you are well
x
lily65668 lizzie67
Posted
Why on earth should you feel awful going above your GP's head? You're entitled to get a specialist opinion/treatment if you want it - even more so if you're prepared to pay for it yourself! Get down to his surgery asap and politely insist. Take your husband along for back-up if that would help.
There's not going to be a magic bullet for your condition since there's also a major element of anxiety, as you've courageously admitted. However, working on the vertigo will to some extent lessen the anxiety, and allow you to work on that as well. Have you tried CBT? That tends to work far better than psychiatric treatment for anxiety, but you do have to find the right practitioner. There's been a lot of band-wagon jumping by half-trained people since it got fashionable!
I'm fine. No real vertigo since the Epley three days ago, though I suspect there's still a tiny residual fragment floating around in the wrong place. I can bend forward with no problem at all now, but still get a queasy feeling when I put my head back - though no more spinning. But I don't want a return match with the Epley just yet - my arthritic neck isn't up to it! I know it will resolve spontaneously over the next few months anyway.
The vestibular physio says he won't give me the paper for the health service reimbursement (that's how it works over here) till I've had another three sessions. Bit of a swizz, but I'll make sure I use those sessions to thoroughly pick his brains on the subject and make him earn his money!
lizzie67 lily65668
Posted
Im glad to hear you are feeling better,
Im just a very shy anxious person.
I so scared that they might find somthing as he said I have to also have an MRI. i find this terrifying.
TBH Im scared of everything.
xx
gillian76726 lily65668
Posted
No Lizzie up dont have to feel awful at all. He cant do better so that's his problem not yours!
as for you Lily does it mean that the extra sessions will be paid for bynthe health service.? Sounds like a weird set up for social medicine. not,like the NHS , but that has it's failings,too!!
lily65668 lizzie67
Posted
Don't worry about the MRI. It's my understanding it's more or less automatic if you get as far as a neurologist or neurotologist. Doesn't mean they're actually expecting to find something, just a precaution.
lily65668 gillian76726
Posted
Oh yes, all four sessions will be reimbursed at the going rate, which I think is at least 2/3 of the amount I'm paying. It's just that he won't give me the standard form for the reimbursement till I've had all four. I've never come across this before, but it may be normal when seeing a physio. The only physio I ever consulted before was an Alexander teacher, and I saw her on a private (i.e. non-prescription basis) so there was no reimbursement anyway. But the excess on each session will only be equivalent to max £10 anyway so it's not exorbitant. At the next session he's going to do a basic neurotological assessment, since he thinks there's something vestibular going on in the other ear too. Then we'll move on to vestibular exercises to try and keep things in order in future, so I think it will be worth it.
We almost always have to pay some of the cost of medical and dental treatments, with the rest being covered by the compulsory State insurance. We also face higher social deductions during our working lives - 13% of gross salary vs. 7% in the UK. The upside is we don't have waiting lists, all hospitals have 24/7 casualty depts, you can self-refer to most specialities and you can consult any GP you like. No nonsense about postcodes and catchment areas. Swings and roundabouts I suppose... But we still don't have ENT doctors who know about vestibular disorders! I fear some things are universal.
gillian76726 lily65668
Posted
Yes i've heard it works out more expensive for individual there, but i think fairer in the long run. As u say no waiting lists, self referral (thats a dream here!) - plus the choice of gp and not just the ones in catchment area,! Makes so much sense and the way our NHS is struggling i really needs to change, but people are so resistant to change! One if our biggest problems is bed blocking as there arent enough beds for people,who go,in For surgery due,to older people not getting discharged as the ongoing social care care for them isn't there!,[u] A real catch 22 t[/u]heynneed to,sort,out pdq!!
lily65668 gillian76726
Posted
Hi Gillian, Lizzie and all the other guys,
Just back from my post-Epley follow-up and I am certified officially fixed!
Well, probably certifiable in any case...
Another full exam with the infra-red video goggles, including a repeat Dix-Hallpike, which I didn't mind at all. I only had a problem during last week's apache dance - sorry, Epley manoeuvre
- when my head was forced to the left in the second step. Since my arthritic neck hasn't fully recovered from this yet I told him very firmly before he put me down in the D-H that no way were continuing to a repeat Epley. Unfortunately, I used the expression "apache dance" and he looked at me blankly. Ah, the innocence of youth... I told him not to worry about it, but one of his girl students was already googling it and we all had a good laugh while watching a YouTube video. He'd left the door ajar so goodness knows what the people out in the waiting room thought was going on.
On a more serious note, he said the test with the video goggles had confirmed that I've got something minor going on in the left vestibule (whereas the crystals had been in the right one). He got me doing a few balance tests, questioned me about whether I had any balance issues that interfered with daily life (outside of the recent BPPV attack of course) and said he didn't feel it was worth trying to do anything about it. He said it had all the hallmarks of the aftermath of a viral vestibular neuritis. Interestingly, that's what my GP first thought I had when I saw him a few weeks after it started.
Anywho, he said it was too late to treat it with steroids now - which I certainly wouldn't have accepted anyway as it's not bad enough to interfere with my normal life. He said we could do some balance exercises if I really wanted to but he didn't feel that was necessary either, as the degree of recovery to be expected from the exercises was only equivalent to my current state anyway. So we left it at that, with the proviso I'd go back (via my GP) if I ever had any more problems.
And he gave me the form for the State insurance reimbursement there and then instead of making me have the four sessions which he'd originally said he'd do. He looked up the reimbursement rate for me, and it turns out my contribution after I get the money back will only come to about £16 in all, which I consider money well-spent. It would have been much less if I'd been below the official poverty line, but my pension puts me just above it. I often think it's a pity the NHS didn't go for the same system, with a small co-pay, as it puts so much more cash into the service, and improves availability and patient choice. Still, too late to change that now...
I hope everyone else on this board finds a solution to their problems too. Vertigo is a horrible thing to put up with. Good luck!
lizzie67 lily65668
Posted
Im so glad you are feeling better.
Apache dance - you are so funny!
Best wishes and thank you again for all your wonderful help.
Dizzy Lizzie!! xx