Hi wondering if you could help! I’m still suffering with dizziness / vertigo that is driving me crazy! I’ve been doing the cooksey cawthorne exercises which made a bit of a difference but still suffering and someone mentioned about the epley manoeuvre - was wondering if anyone has had this done and if it worked? I’m seeing a gp next Wednesday that is able to perform it and am hoping that it does something! If not wondering if anyone knew of anything else that can help the vertigo? Please help…
l had never heard of the Epley manoeuvre - so l googled it - and there is a youtube video of the procedure - looks very simple and only takes a minute. For anyone suffering from dizziness/vertigo this is such an easy ‘cure’ - so l hope it works. lf this is the case then why do GP’s dish out meds for it.
Do let us know how you get on - because it is so interesting and many of us suffer with this problem.
I love the logic behind this, I’ll be seeing my MS Consultant in August and will ask about this. I have fallen into the trap of thinking nothing/no-one can help! So thanks for this idea
I would give it a go,my neuro physio was going to do it on me,but my vertigo went off so she didnt want to start me off again, but she said if i sart again to let her know and she will do it,it works for some, but it all depends on what is causing the vertigo,hope it works for you, vertigo is so awful,i would say its my worst symptom.
I had the Epley Manouvre for Vertigo many years ago, but unfortunately it didn’t work for me. The reason for this is because it’s given for Benign Positional Vertigo, where debris or small crystals of calcium carbonate get caught in the hairs of the semi-circular canals of the ear ( which also contain necessary fluids to help balance) . What happens is that the manouevre is done in a way so as to loosen these particles and allow them to drain away naturally. Very often this kind of vertigo is brought on by ear infection or often comes with age.
After I had mine, I was referred for Neuro Physio for the Cawthorn Cooksey Exercises - not for the faint -hearted because they do intially trigger off the vertigo but if you stick with it, it works. I had complete success with that over ten years ago, but in saying that, I’ve had three significant episodes of vertigo since; two brought on by extreme MS Fatigue and which were recitified within a matter of two weeks after doing a few of the CC exrcises; the third episode was brought on by a combination of an inner ear infection which caused my ear drum to rupture for the third time in my life ( since childhood) and age (ugh
By all means go for the Epley manouvre because even though it’ll feel ‘uncomfortable’ for up to half an hour afterwards, it could end up with you getting the desired result with no further vertigo.
Hope I’ve clarified some things instead of confusing them.
Hi eiona - I’ve been doing the cooksey cawthorne exercises for a few weeks - they seemed to have made a bit of difference but the vertigo is still there and am at loss as to what else to try so thought I would give the epley manoeuvre a try! How long did it take for the cooksey cawthorne exercises to work? I’m still doing them each day but not as much - not sure whether to continue them or not
It was a long time ago so I’ve just double checked a feature I wrote in 2006 in New Pathways Mag (March Edition) …
I did a set of 3 exercises, 5 times a day at home within a safe environment. Then each fortnight I had an appt. with the Neuro Physio where she’d assess me and increase the level of difficulty for the next ones ones to be done - the same number of times over another period of two weeks.
So all in all, it took 3 months.
Only a Neuro Physio (in theory) should be able to tell you if they’re working, or whether or not you doing them properly - and whether or not you should continue. My regime was strict in so much as that I had to record on a scale of 1-5 each time I ‘exercised’ how good or bad I was feeling after each one.
This next bit is directed at anyone else who might be reading:- I can’t emphasise enough how important it is to be done under strict medical supervision. It’s no good just copying them off the web, or off anyone else - mine were all tailor- made for me.
Hi eiona - I have been having neuro physio at home and she originally gave me the cooksey cawthorne exercises and told me to do them each day and do it up until the point that I feel too dizzy and then stop and then repeat them each day 3 times. I’ve been doing them since may and I had sooooo hoped that my dizziness would have completely gone and it’s still here! It’s soooo depressing and debilitating! I’m not seeing the physio for 3 weeks now as she feels that I’m making good progress in terms of walking again and using my arm. She just told me to carry on with the exercises for the dizziness. It’s just so frustrating now and it’s my birthday in a couple of weeks so hoping that I would have been better by then
It’s quite likely that it takes longer for others than it did with me. After all, we already know that no-one’s MS is exactly the same as everyone else’s e.g. progression rate varies, pain, both neuropathic and musculo- skeletal (sp?) varies, degrees of mobility varies.
Then there’s the fact that people’s personal circumstances can vary. Speaking from my own experience, I wimped out the first time it was offered, but the second time, I had a little think and realised a few things:- my MS was stable, (as SPMS can be for some); I’d hit a point in my life when my son was 16 ( I think) and less physically dependent on me, also my husband is more than capable of looking after himself, I had understanding friends- this meant that there was only myself to consider. I had the chance to do nothing else all day if it came to that.
I admit it sounds a bit over dramatic but the pragmatic side of me likened it to someone e.g. who was facing a medical operation of some kind, knowing full well that after it, they’d need 3-6 months to recover. So in other words I 'took ’ three mnths out of my life to get better.
All that said, it might me worth asking if it’s the right time for you to be doing this - you could be pushing it too hard at a time when you need more rest than anything to stabilise the existing vertigo.
Really hope you can get it sorted at some time, but in the meantime, be gentle on yourself
This post is so interesting and informative - l do not have vertigo - at the moment - but you lovely girls have shown folk how it can be helped with the correct exercises. Thats got to be better then taking lots of meds.
You should start the post again and title it ‘Help for Vertigo’ so that more pwms with vertigo will notice it - Epley Manoeuvre
might not mean anything to them. l am just curious about anything that l know nothing about - which is why l googled it.
Well done all
Thanks Frances I have taken your advice and reposted with the topic you suggested. Thanks eiona for the reply I tried resting for a while last month but doing the exercises do seen to make a bit of a difference. Maybe I’m just being impatient and expecting too much too soon but it’s been going on since end of April and really had hoped that it would have gone away by now!
Hi Karina, sorry to hear you are suffering with vertigo, i also have this problem. I have had it for the last 18 months, and it had been getting worse. my doctor perscribed me some Cinnarizine (Stugeron) tablets and they have helped me a lot. my doctor has said that i could not have the elpey manoeuvre because i did not have the BPV type of vertigo. he also said he didnt know what type i had and would not refer me to a neuro physio yet until he saw how the tablets were working. i think i am going to have to kick him up the arse to get him to refer me lol.
I hope you can get yours sorted out i know how stressful it can be for you. just a litte tip, when you are having an episode, sit very still and concentrat on one spot in front of you, not moving you head at all, and sing a little song in your head (at christmas i got to sing the ‘12 days of christmas’ song word perfect lol). hope this helps a little.
Thanks indianna. I’m paying privately for a neuro physio as the waiting list on the nhs was about 4 months minimum! The private physio comes to my home and it’s not too expensive. Was £40 for the first full assessment and it’s £20 each session afterwards and she’s here for an hour. I would say its definitely worth paying privately for one for a few sessions as she has helped me immensely with general walking and using my arms and she has improved the vertigo in comparison to what it was!
Thank you for that info on the neuro physio, it is something that i could look into if my doctor says no next time i see him. It is not too expensive, but it might work out expensive if the process takes a long time to solve, so i would have to think about it as i am not working at the moment and i am battling to claim DLA. The inteligance of the person who assessed my claim must be so low i dont know how they get out of bed in a morning.
Just one thing after reading all the comments since I last logged in.
Re the Neuro Physio: I don’t know what current protocol is or whether it differs between PCTs ( or Local Health Trust Boards, for those in Wales) , but at the time I had mine it was only a Neurologist that could refer people.
As I implied, things could now be very different - and I’m saying that in the light of the fact that my GP can no longer refer me for other kinds of non-MS physio should I need it. I’d have to self refer via a dept. in a different hospital to the one which I attend for my MS and most other things.
PS Frances - thank you for your encouraging words and a good idea to start a new topic
I had the Epli Manouve done earlier this year - I was going dizzi when I made specific movements - the first time it changed the movements that caused me to go dizzi, the second time it worked.
I felt odd for 24 hours after the movement… but it worked.
My GP suggested it and carried it out, but I did discuss it with the neurophysio I was seeing for walking difficulties and she said its brilliant if it works, and it can take several attempts to get it right.
She also mentioned that if it worked the cause of the dizzziness is entirely MS unrelated, and that was good news.
Coming back to this after a long time sorry. My reason for this is that during a holiday in France in June, I literally caught a frog in my throat This in turn led to an ear infection. I responded well to the antibiotics until the morning of July 8th when I tried to get out of bed and fell back onto it- due to Benign Positional Vertigo caused by the infection.
I saw two of my GPs in a week who both insisted that I start the CC exercises for vertigo no matter how acute it felt- so acute that my OH started working a 3 day week, instead of 5 days, to be home with me and my son who owns his home home with his Mrs helped in between. I’ve been diligent in doing these CCs and have responded well except that the positional thing of bending forward, even to do so simple a thing as write a birthday card sends me spinning.
Was so concerned about this and the accompanying grinding feeling in my head when the world takes off when sitting up in bed in the mornings and likewise lying flat in the evenings- also simple things like filling the dishwasher, that I contacted my MS team yesterday for advice. As a result my Neuro will perform the Epley Manouvre on me sometime in Sept. because he’s currently on holidays and when he gets back, I’ll be off on my own annual stayover with friends in Hampshire (no motion sickness nor dizies when travelling, can also walk unaided, and move my head and body sideways btw)
So some questions for Karina - did you get it done? if you did, was it successful?
Thrilled that it worked for you Carol and I’ve already been told it might take a few attempts - and of course mine’s not MS related but infection related, so presume there’d be a chance of success ?
Hi Eiona I didn’t end up getting it properly from the gp but instead with a neuro physio at home - i perservered with the cooksey cawthorne exercises and the physio gave me extreme ones to try which I did and carried them out every day about four times a day. They made me feel worse at first but after a while of doing them they made me feel much better. It takes time though but is worth doing. The physio did a home epley manoeuvre with me and I felt awful for a couple of days after and then saw an improvement but I generally think it was the cooksey cawthorne exercises that made it better and perserverence is definately the key!
There are drugs out there to treat problems with the inner ear that anybody can get .One for the GP perhaps?
Thanks for the reply Karina. Wb - not one single drug has worked in the past, if you’ day read it all through.