BPPV (vertigo) is the worst. Any tips?

[Psm92]

I've been suffering with this on and off for about a year now. Usually they are short spells and over in a day or two max, but this current bout has now lasted for 3 days and isn't easing up! I've done the Epley manoeuvre but the spinning sensation isn't really occurring too much now, but I'm still very off balance in certain head positions ie looking down or up, and generally don't feel steady. Is this normal?

I also don;t know why I keep getting this. I'm only 30! My vit D levels are good. My doctor says it's one of those things you can't control, and there's no cure either, you just have to let it pass. But knowing this'll happen a few times a year for the rest of my life is very hard :( Has anyone ever had this and found a way to deal with it?

I feel your pain. I get this every 6 months without fail. I used to have to wait for dh to do the Epley on me (and often it wouldn't provoke the spinning aka it wasn't working). I then learnt to do the half somersault manoeuvre on my own and feel much better about the whole thing! I too am in my early thirties and sometimes so feel quite down about it. Mine starts when I turn over when sleeping and it is THE WORST spinning ever.

Ooh what's the somersault half manaouvre? is there an official name for it I can google?

Ah just googled it! Do you only do it on the side that's "bad"?

I started getting it 18 months ago. It was after I'd had an accident & had surgery. It gradually got better, but I've not been 199% since. My balance has gone to pit and my head feels woozy frequently. It's shit.

sorry I can't help you.

All through my childhood and teens I had vertigo. It stopped around when I was 20, but started up again in 2018 on/off.

For me, it coincided with a lot of stress which I've since eliminated. Haven't had a single instance of vertigo since. I also started taking vitamin C supplements which might have helped too.

But if you have stress in your life, try to minimise it as much as possible. It might help you.

I found cinnarizine very helpful where stemetil used to work well. Try that on a script if possible.

Just to add, lots of people have vertigo but bppv is different, it's not caused by stress. It's calcium crystals in your inner ear that get dislodged and cause the extreme spinning sensation when you move your head.

OP am interested to read the replies you get as I am in the same boat. Previous blood test said low vitamin d but who doesn't have this.

I was misdiagnosed with BBPV, had more concerning symptoms a few years later when I suffered an acute attack of Transverse Myelitis, two years later I unfortunately had a confirmed diagnosis of Multiple Sclerosis. I know lots of people suffer vertigo, as a one off and of course it won’t be anything serious, I don’t want to cause alarm but if you experience numbness, pins and needles, tingling/burning sensations, visual disturbance etc see GP for possible referral to Neurologist.

Mine started extremely violently with a stomach bug. I thought I was dying.
I kept getting repeat episodes for a couple of years after that, generally when I had Ahmad ant other virus or bug. And in between episodes I often had a strange sense of floatiness. They gradually became less and less severe and now I haven’t had an episode for a good couple of years.

@Roselilly36 when you were misdiagnosed with bppv, did the Epley/half somersault cure the vertigo? This is what makes me believe mine is def BPPV, it suddenly comes on (has always been just before or after a virus), I do the manoeuvres a few times (which always make me nearly sick the spinning is so bad) I feel a bit off balance for a few days, and then nothing.
I am interested in the MS link as I have just been diagnosed with Uveitis and apparently can have a link

I’ve had the same since 2018. Waiting on a referral to neurology. I’ve lost a lot of confidence with this and now suffer panic attacks too. It’s rubbish!

I get it a couple of times a year too. Brandt Daroff exercises help a bit but need doing a lot

I’ve been suffering this badly for a few months since a “bad turn” which finally led to my MS diagnosis.

it’s not “spinning” for me, but a constant lack of balance and dizziness. I’ve been away this weekend and it’s been upsetting and I just want to go home. I’m staggering about like a drunk and reliant on a walking stick. I hadn’t noticed quite HOW bad it was until I was away from my controlled/home environment. 😔

DH has MS and his consultant thinks his first relapse may have been a funny spell that at the time was diagnosed as BPPV - this was years ago, before I knew him. Interesting to hear others on this thread have had similar.

I really hope you find some relief, OP - it sounds grim.

I have this too it's horrible

The half somersault I did made me really bad, so not going near that again

The eply one works best for me, and I've had it since, definitely at least 2018 when I nearly fell in the road but there was a tree there luckily

@PickledWilly saw GP, when I experienced the vertigo, epley did nothing for me at all, by the time I was seen by the hospital I was ok, they did a few tests said BPPV. Didn’t think anything more about it.

Until I woke one morning, I felt ok, no vertigo, got in the shower, as I washing I noticed a completely numb band below my bra line, I thought it strange never felt like that before, within days, I was completely numb at the front, walking felt like walking on a bouncy castle, pins and needles in my thighs, saw GP, urgent referral to Neurology, thankfully by then we had private cover, saw Neuro had mri head, cervical & whole spine. TM was dx, two areas of inflammation in my spinal cord and white matter lesions found on my brain. Neuro told me the same night that he thought it was MS, had lots of tests, chest x ray, blood tests etc.

Neuro put me under the care of an MS Nurse Specialist, who was absolutely fantastic and so helpful.

I had completely different symptoms 2 years later, sudden onset of visual disturbance, back to Neuro, further MRI, found new lesion in Peduncle in my brain, also paling to optic disc caused by the inflammatory attack MS was confirmed.

@Roselilly36 did the vertigo eventually go away? I can’t bear the thought of having to live with this for decades.

@Hooverphobe the vertigo with me comes and goes, it’s not all the time. I do get migraine with aura also, Neuro thinks that is hormonal, not connected to my MS. Good luck, I know how debilitating it is.

Try Cinarizine , you can get it off the shelf , is pretty good for vertigo , take 2-3 tablets a day

I've had this for many years now. I saw a specialist who gave me some exercises to do which really helped. If I wasn't so lazy and did them everyday even when not having an attack, I feel like I could probably prevent it completely, but I do get bored and lazy and stop them and then a few months later it happens again, and I go back to doing them.

It's worth getting a referral to a specialist as they may be able to come up with a plan that is specific to you that works much better than just trying to get Epley done each time.

Push for a referral with an ENT consultant who’ll then put you through to a Hearing Centre. I did this after multiple bouts of BPPV

It’s a difficult condition to diagnose because it can be so many different things; a case of process of illumination. I had so many tests including blowing hot air in to my ears, some drops in my eyes for them to watch my eyes do something - along with really in depth questioning on things -
goodness knows

The results were that it was more than likely BPPV. I was impressed with the process to get to it.

Mine comes back every now and then; sometimes a link if I’ve knocked my head (eg bump in the car) and stress too.

DH has suffered from this over the past 3 years & I do the Epley manoeuvre on him which does help.

He is convinced that wearing headphones, especially noise cancelling ones, makes it worse and hasn’t had an episode since he stopped using them.

You need your GP to investigate more and give you a neurological referral if it isn't resolving. It could be Meniere's, MS, BPPV, any number of things. Stemetil or betahistines help for some causes, but if it's recurrent then it needs investigation.

Incorrect. Vertigo is simply the general name for things like BPPV, labyrinthis, vestibular neuritis and so on.

Stress CAN trigger vertigo itself, including the some of the 2,000 tiny crystals in either affected ears utricle dislodging. Studies have demonstrated a link between BPPV and stress as well as anxiety.

BPPV is what I have and really minimising stress worked wonders. No recurrence since 2018. Suffered badly from it during childhood and teens.

I get attacks of what has been diagnosed as BPPV and definitely think stress is a factor

Im having balance problems at the moment, feel slightly spaced out and woolly feeling in head. Ive also lost some hearing in one ear. I had vertigo a couple of years ago and its not the same, everything was spinning and i had to be very careful getting up. GP sending me for blood test but I| have monthly blood tests anyway at the hospital and nothing has ever been flagged up.
I have tried to epley thing but dont think its crystals in my ear as never been actually dizzy. Its driving me mad!