Sleeping with BPPV
Posted , 4 users are following.
I was recently diagnosed with BPPV. I've been handling it okay except for at nights... I jerk awake after an hour or two of sleep feeling nauseous and super dizzy. The dizziness passes after a bit but the nausea remains long after. I take gravol to try and control it but it doesn't help much. After the first episode of the night, it's nearly impossible to get back to sleep. Any time I close my eyes for more than a few seconds the dizziness comes rushing back. I haven't slept for more than a few hours a night in days. I've tried sleeping as upright as I can but it really doesn't help much. Any help at all is welcome.
0 likes, 15 replies
lily65668 ella93354
Posted
Hi Ella,
I'm currently suffering my second episode of BPPV this year, so I can sympathise!
You do know, don't you, that if it's really BPPV (as opposed to a misdiagnosis, which is not uncommon) it can be treated in minutes by the Epley manoeuvre? You really don't have to suffer.
My current attack - brought on by a dentist using a low-frequency drill last week - isn't too bad, but the one I had at the beginning of this year, in the other ear, was very nasty. On that occasion, my GP referred me to a specialist vestibular physiotherapist, who fixed me in a single 20-minute session. I'm riding this current attack out for the moment, as I'm leaving on holiday on Sunday and can't get another appointment in time, but I won't hesitate to go back to the same physiotherapist if it's not clearing spontaneously by the time I get back.
You can look up the Epley manoeuvre on line but I wouldn't recommend it as if you get it wrong it can lead to the crystals moving into the lateral canal, which can make you feel absolutely terrible, albeit only for a few hours. An ENT doctor got the manoeuvre wrong when I had my first attack 25 years ago, and I've never forgotten that! (And yes, I've now had three attacks of BPPV in my life - it seems some of us are particularly susceptible.)
There's something called the half-somersault manoeuvre you can also find on line. You can't do yourself any harm with this one, but I have to say it doesn't work for me. I suspect this is because it has to be timed to the split-second, and the instructions about timing aren't very precise.
Your best bet is to see either a vestibular physiotherapist or go to a vertigo clinic if you have one near you. Some ENT doctors can do the Epley manoeuvre, but many don't seem to know a lot about it.
I hope you can find the right help and will soon be feeling better.
Lapka ella93354
Posted
lily65668 ella93354
Posted
Sorry Ella, I wasn't quite clear in my earlier post. I meant to say that I wouldn't recommend trying to do the Epley manoeuvre on yourself, as it can make things worse. However, if you can find one of the rare ENT doctors who can do it or - better still - a vestibular physiotherapist, then I can't recommend it highly enough. If you can find someone who really knows what they're doing, you should get an instant cure.
ella93354 lily65668
Posted
Hi Lily,
Thank you so much for your recommendation, I found a clinic near me and have booked a consultation. I think you're right about epley, I've tried it a few times and it hasn't done me much good. I've heard of people who get immediate relief from it and others that - like you said - find it only makes it worse. Either way, thank you so much for your help!
lily65668 ella93354
Posted
That's great! If you get a properly qualified practitioner they'll be able to tell you on the spot whether or not you've really got BPPV. In fact you can find that out at home by doing the Dix-Hallpike test (which won't do you any harm). If you have go it, they'll continue into the Epley and you'll be fixed. If it's not BPPV they should still be able to help you.
The Epley can go awry if you try it at home or in the hands of an unskilled practitioner, but you'll be fine at a specialist clinic.
Don't forget to come back and tell us all how it went!
Guest ella93354
Posted
barbara19041948 ella93354
Posted
Some years ago, after my first bout of BPPV, I searched online for help, found a product called DizzyFix, made in Canada, and bought it from its UK supplier. This has been a godsend during several recurrences of the condition, usually one every year or so. It's a form of the Epley manoeuvre, really. As I'm currently experiencing an episode, I may well use it again, with the help of my husband. It's worth a try, if you can't find a doctor or specialist physio (they are not always effective). It cost about £70 at that time.
Sleeping on one side helps and also plenty of rest. As for medication, some sufferers find betahistine useful. I hope these ideas are of interest to you and that you feel better soon.
lily65668 barbara19041948
Posted
I just had a look at that device Barbara. It's quite interesting, and might be worth a try for someone who can't get access to a specialist - which I know can be the case in the UK.
However, my reservation would be about the timing of each change of position. When the Epley is done by a professional they pay very careful attention to when the nystagmus stops or starts at every stage of the procedure, plus its direction. They use this to judge when to go to the next stage. When I had my successful Epley 5 months ago the physio even put infrared video goggles on me, so he could follow my eye movements more easily on a screen.
The device sounds quite pricey too. I only paid around €40 overall, which covered a first consultation with my GP to get a referral, then two consultations with an excellent physio - one for the Epley and a check-up a week later. Even at the current (disastrous!) exchange rate that's still only about £37.
Still, I guess that if you're in thrall to the NHS with its endless waiting lists, it might well be a good alternative.
barbara19041948 lily65668
Posted
Thank you for your reply, Lily. I hadn't considered the timing of the positions. Perhaps I will try to see a specialist physio if my vertigo doesn't clear soon. That won't be easy but I will make some enquiries. Best wishes to you.
ella93354
Posted
Today I went in to my physio appointment (once again THANK YOU lily65668, you've saved me a lifetime's worth of anxiety and discomfort) and it turns out I don't have BPPV - instead what I almost certainly have is damage to one of my inner ears. What this essentially means is that one ear is sending fewer signals to my brain than the other, meaning what my eyes see when I turn my head doesn't match with what my brain is sensing, causing my dizziness. What I now have to do is basically train my brain to treat this imbalance of signals as the new norm, which I can accomplish by making myself dizzy through certain exercises (as funny as it sounds).
And, as it turns out, the uneven signals I'm receiving right now is actually what's mostly contributing to my anxiety. I didn't fully understand it when she explained it, but as far as I can tell, these inner ear signals follow a very similar pathway through my brain as anxiety signals, and the overwhelming movement signals my brain is constantly sensing is triggering anxiety.
Just thought all those following or who have participated in this discussion would want a follow up. And thank you so much to all the responders!
lily65668 ella93354
Posted
Hi Ella,
Thank you. I'm really glad you got an answer, of sorts, even if it wasn't the best outcome, which would have been a diagnosis of BPPV. Did the physio not suggest referring you on to another specialist who could accurately diagnose, and perhaps treat, the exact cause of the problem? "Damage to the inner ear", though undoubtedly accurate, sounds a bit incomplete to me.
At my first consultation with the physio, he explained to me in the initial interview that he was going to test me for BPPV, would treat it if that's what it turned out to be, but would do further tests if it wasn't BPPV, with a view to referring me on to a neurotologist. In the event, that turned out not to be necessary.
Interestingly, he also mentioned the phenomenon of how inner ear problems, whatever the cause, generate anxiety and brain fog. At the end of the first consultation I twice keyed in a wrong PIN when trying to make the payment, and remarked that I'd been doing a lot of strange things since the start of the BPPV attack. He said this was quite normal, as the incorrect signals from the inner ear put the brain into constant fight-or-flight mode, resulting in anxiety and confusion.
I do hope the exercises work for you, and that you end up being able to manage your condition. However, if I were in your place I think I'd want to be seen by a neurotologist for a more complete diagnosis if I didn't start seeing some improvement after a few weeks.
ella93354 lily65668
Posted
Though I don't have an exact word for what I have, the explanation I was given felt thorough to me. I think the only step further I could take would be to get some sort of scans of my inner ear to see exactly what the damage is. She explained to me that certain viruses can cause this damage, as well as head colds, both of which I experienced a month before getting vertigo. However I'd like to hear more about seeing a neurotologist... I'll do some of my own research, but could you let me know exactly what I could gain from such an appointment?
I'm really glad to hear someone else has experienced "brain fog" as you put it. I've definitely had many moments of lapses in concentration, rambling when I'm talking, losing track of my thoughts, etc... Those symptoms definitely contributed to my anxiety, making me worry I had something much worse.
I'm due to see my physiotherapist again next week for a follow up, to make sure I'm improving and have her help me do some exercises.
lily65668 ella93354
Posted
Hi Ella,
I think the most important thing is that your anxiety about a brain tumour has been calmed.
A neurotologist is a neurologist who specialises in the parts of the nervous system that affect balance, coordination etc. As I'm sure you know, this involves both the brain and the inner ear. I'm sure they would automatically order a scan. They would be able to give you a more exact diagnosis, together with the appropriate treatment. This speciality is more likely to be found in specialist vertigo or balance clinics.
If your problem followed on from a cold it does sound like labyrinthitis or vestibular neuritis. Both can in some cases be cured by a short course of steroids, but I believe (perhaps wrongly, so other posters may correct me) that this only works if it's given in the very early days. If this is the case, I suppose it would be worth waiting to see if it resolves spontaneously before moving on to a neurotologist.
I'm glad that you're getting a follow-up with the physio. You're obviously getting good treatment.
lily65668
Posted
Hi Ella,
I just sent you a private message. PMs via this site don't expose the email address of either party or carry viruses.
Lapka ella93354
Posted
They are very helpful for BPPV
Good luck and the best to your health!