Hi everyone, :wave:
I'm new here though I've been reading the posts for the last few days and see there are some really great and caring people out there. I have BPPV which really kicked in last summer after severe back problems kept me flat on my back for a few days. Have had VRT, Epley which worked for a while, then the vertigo came back on the lie down/sit up routine, plus a couple of totally bad days, Had my last epley about 6 weeks ago, and a week later I was given an exercise to do at home to help the old brain with compensating. so far so good, though I still get the odd fullness in my face if I look up too long. And I know all about the anxiety. sometimes I don't sleep :yawn: just thinking I might wake up unsteady. That's the worst - feeling it just below the surface maybe, ready to pop out any time any place.
My heart goes out to those of you - unfortunately so many - who are suffering multiple disorders and coping with so much. It's good we can all be here for each other, and I have to say, I have learnt more from reading people's experiences and how they deal with them, than I ever have from the ENT or the VRT physiotherapist.
Wish you all a dizzy-free weekend.
Madeleine

Welcome! This is a great place and the people here are so knowledgable. I too had BPV, mine started late in 2002. It took me about 14 months to feel normal, but it did happen, as I'm sure it will for you too. Dizzy-free weekend back at ya!!

Thanks treefarmer. Glad yours is a success story. During those 14 months did you have the epley done, exercises and so on? Did it get better and better or did you have setbacks? I know each of us experiences different things, but it's nice to compare. I had one lot of treatment in Sept-Oct. - not the classic epley but some sort of maneuvers, then I was OK for about 5 weeks theni started getting it again when I lay down/sat up, looked up, etc. Had more physio was doing OK till I set myself back by doing exercises for my back pains - just did them a bit too enthusiastically and wow - dizzies hit real bad. Took me over two weeks just to get back to where I was before. Now I've been 5 weeks without an unsteady day but have to be oh so careful and there are still the odd movements where I feel as if it's about to start - I quickly change head position and it's OK. Hope it carries on being like this and that I don't have to get any more VRT. Be glad to hear from anyone else about their BPPV experiences.
Madeleine

Welcome to the boards!! Please could you share how your bppv started and what your symptoms are. You mention unsteady feelings, did you have vertigo spinnign spells. Did the epley work straight away? did you feel weird after the epley and finally do you have symtoms all the time or just sometimes, do you feel like you are a moving a little?

Thanks Ilia xx

Madeleine,

I did have the Epley at the beginning of my 7th month, which worked like a charm. I didn't have it when I'd had my first bout with the BPV because like an idiot (in hindsight) I trusted my GP that there was nothing that could be done except to just let it subside on its own. After seeing an ENT who told me I didn't need to suffer because the Epley could be done, I went for that the second time around. I've not had any re-occurrences since. I did have periods of good and bad after that. It was a slow process of compensation and I didn't feel "normal" until about 6 months after the Epley. Small backward slides are still possible and have happened to me recently, but nothing worth worry about. They pass quickly.

Oh, and I did not do any VRT. My ENT told me he could give me some exercises (which turned out to be Cawthorne exercises), but told me I didn't really need them if I just stay active (I walk a lot and do yoga). He was right and I was none the worse for not having done dedicated VRT.

Hi Ilia and Treefarmer,

It seems my BPPV was building up over a long period and I didn't realize what was going on. About 6-8 years ago (wish I could remember) I lay down in bed and went dizzy for a few seconds, again when I sat up. Nothing else during the day. This lasted for about 3 weeks then went away. I mentioned it to my GP who said it was probably to do with changes in blood pressure - I take medication for high BP but have never had any side effects from it. This happened about once a year and then suddenly, nearly 2 years ago I got out of bed and wham, the dizzies hit something awful and even when the vertigo passed I was badly off-balance - couldn't walk unaided - for several hours. Was in touch with my GP who said to call an ENT - don't need a referral for ENT out here in Israel - and I got an appointment the next day. He sent me for a hearing test (results were OK) and an Eng - I didn't have a clue what I was in for . Oh yes, the day after this attack I was fine. Waited nearly 3 months for appointment and the tests were not particularly stressful. Wish I could remember more about them. I think they diagnosed around 7% in my right ear.

Back to ENT with results, he told me I had BPPV and that was it. Of course I didn't even know enough to ask. He said it goes away in time but can recur. So I went off quite happily because I was still feeling fine, up until May last year then had another attack. Then had permanent spins on sitting up and lying down. Then in July last year, had a ruptured disc in lower back. 3 days flat on my back and when I was able to get up again and start moving around the imbalance was more pronounced - getting out of a car, looking up etc. Then another bad day and I went back to the ENT and he sent me for VRT. Had a few sessions, first was just to check me out, second didn't work too well, 3rd was horrible but seemed to work, 4th was to check I was still OK then 5th for anexercise for the odd unsteady days. Strangely enough, the BPPV was then in my left ear and not the right!

Had about 1 months relief then the sit up/lie down dizzies started again but so had my back problems and i decided to deal with those first. Finally got back to VRT, did me one treament (what Icall a half epley because he didn't put me in every direction) then a break as he was on vacation and then I set myself back really seriously over doing a stupid back exercise. 2 epelys later and I am more or less OK, though get the occasional v. slight spin - maybe one turn in bed. Had another visit just to be given an exercise to do which I still do. No, I didn't feel bad after the epleys - no worse than when I got to the clinic, anyway.

Now I am just sooooo scard that it's going to come back. If I look up too high or too long I get that heady feeling, but it goes quickly. I am also experiencing the occasional fullness in my face - like sinusitis - which today seems more pronounced but I am slowly rebuilding confidence. I tell myself, well, if it gets bad, I'll be at the ENT's door and asking for more VRT. I think I also need another eye test as I am sure my vision has changed. No, I don't feel like I'm moving though I've had days when things round me seem to be moving.

So this is my story. sorry it's a bit long.

Treefarmer: You certainly sound like yours is a success story and it's so encouraging to read. I guess this is what's happening to me now - 3 steps forward and a little one backward. I am hoping that I will not go all the way backwards, because the last couple of days seem to be very slightly not as good as the days before. Can't say they're bad, but just slighly more sensitive. But then sometimes I feel that I pay toomuch attention cos when I'm busy I'm fine - same with us all, it seems.

Thanks for your input
Madeleine

Madeleine,

Interesting story. Sounds like so many of us with better then worse then better and repeat. I was curious as to why after you experienced the BPV again (after the 1 month of feeling better that you refer to in your 3rd paragraph above) that you went to the ENT for VRT again instead of another Epley? I know now after two episodes of BPV that, like you, if I ever get it again (and here's definitely hoping I DON'T), I'm running for the Epley like crazy. Because the Epley worked so well for me, I really don't have any stress about the BPV coming back. I just figure if it does, I know what I'm dealing with and I'll just get the Epley again.

I'm glad my story is encouraging to you. It's what we're all here for! I'm at 98-100% these days, but I, like you, still have those times when I'm always sort of wondering/gauging if I feel it. As you said, the key is not having your mind on it. When I'm distracted I'm fine. I guess the gun-shy mentality is the "gift" we all get with this. Sort of like constantly looking over your shoulder. Once you start having more good days than bad, life gets much easier.

Treefarmer - madjane means the epley when she refers to VRT - It seems sometimes people do call canalith repositioning (epley) VRT...It confused me also but this is what she means I think ...

xxx

Oh! Thanks for clearing that up Emsy. I was thinking first you have the Epley, then you do the VRT as part of the healing process. I guess techinically-speaking, the Epley would be a form of vestibular rehab :)

Tree

Hi,

treefarmer is correct. The Epley is a treatment and is NOT a VRT and shouldn't be confused as such. It's a maneuver used to reposition the crystals from the area in the canal that's causing the vertigo because of the lack of info from the affected canal to the brain. Therapy would be prescribed for an extended period of time for use where after a treatment, full restoration of balance, vision, perception, etc. hasn't happened. Therapy (a series of exercises, either standard or customised) could also be used ONLY as the treatment.

I'm not at all sold on the fact that VRT should be started right after the Epley is done for every patient. If after a period of time there is still imbalance, visual dysfunction, motor dysfunction from the BPPV....I would strongly suggest the VRT to help lessen the symptoms and strengthen those connections and compensation.

It also depends on what canal (and what ear) is affected. At times if the Epley is done for the posterior canal and if the crystals are actually in the horizontal canal....it won't work, the crystals may have been only partially moved and symptoms will persist and/or be slightly different or worse. The Epley can be adjusted accordingly to which canal is affected. The symptoms are slightly different for each canal. Most doctors and therapists do the Epley for the posterior canal and don't consider otherwise. This is to the detriment of the patient, and according to him/her, the Epley was a failure. There are options.

Of course, it all depends on what precipitated the BPPPV in the first place. If it's a secondary disorder -- after the BPPV has been treated, the person may still be left with the primary disorder dysfunctions. I can certainly understand the frustrations and anxiety associated with some of the misinformation that's "out there".

The best thing that we can do for ourselves (those of us with BPPV) is try to function as normally as possible during and after attacks, with or without VRT.

Best to you all,
quincy

Hi Everyone,
Thanks for all the input. My mistake, I included the Epley in the term VRT. That's because my Ent didn't seem to have much of a clue as to the treatment - or couldn't be bothered to tell me - and sent me to the local hospital where they have a Balance Center and was given the Epley by a trained physiotherapist. The dizzies did go away but I kept having the odd days of imbalance, so he gave me exercises to do at home, but only a whole week after the epley. I wish I'd found this board while I was still having treatment - I'd have been been a lot wiser as to what questions to ask. I still get a little dizzy if I turn in bed anything other than slowly, but if that's all there is I can cope with that. I have been feeling good now for 6 whole weeks - the longest since this really kicked in last summer, so I am holding my breath and hoping. But if the dizzies come back worse, I shall be back at the ENT for a referral for more epleys and VRT. I am still doing the one exercise that I have which does make me a little dizzy for a coupla seconds - sometimes a bit longer sometimes hardly at all, so I am hoping that it's the brain still learning to compensate. I guess the longer the condition's been around the more the brain has to relearn.
Sorry if I confused anyone but you seem to have got the hang of what I meant! All your encouragement is so welcome and helpful.

Madeleine

Dont wory madjane...I recently saw on a website they'd made the same mistake and I felt like writing in and saying! :)

Glad you've recovered well xxx