Is this BPPV or something else?
Posted , 4 users are following.
hi guys, I've posted here a few times as I've had vertigo tor 3 months straight. it might disappear for 5 days but returns. i saw my doctor who performed the eply and i had no vertigo and my eyes weren't jumping as they usually do with bppv.
i usually get the spinning sensation upon waking up in the morning or when laying down. i move position which stops the spinning but leaves me with a severe dizziness its like I'm floating or on a boat. I've constantly done the eply but still haven't had any vertigo which i thought if i had bppv i would get.
i don't get vertigo when walking or driving. i read on the internet that with bppv you don't get symptoms in-between a vertigo episode. if this is the case then why do i feel like I'm floating which i get all day on and off? and if the crystals in my ear have been put into place then why am i still feeling light-headed? also if it was something else other than bppv wouldn't i get the spinning sensation any time of the day and not just when laying down? this also puts me off balance but the more i move around the better it feels. i also get a ringing noise in my ears but no deadness or anything like that
thanks for any advice
0 likes, 15 replies
hmoosey eagle33050
Posted
this is most likely something other than BPPV. this wouldnt last this long. you need to get to the right specialist for proper testing. look up a dizzy clinic in the major city near you. there are many different things it could be. vestibular migraines, vestibular nueritis, meneirs, labrynthitis, list goes on. look for an otolaryngologist, neuro-ontology. a regular ENT regular nuerologist most likely wont help. didnt for me. you need caloric testing. dont wait. it can take a little bit to find the right doctor and get the testing.
eagle33050 hmoosey
Posted
thanks for reply. i thought some people get this for months or are you talking about the duration? its very confusion bppv. i would of thought having something else other than bppv i would get vertigo at any time of the day and not just when laying in bed or waking up which i think is more common in bppv . wat type do you have?
hmoosey eagle33050
Posted
im saying... for you to have this for 3 months, its most likely not BPPV. but something else like vestibular migraines, vestibular nueritis ect. you said youre doing the epley. if it was BPPV, you would notice a change.
i was diagnosed with BPPV. weeks later diagnosed with vestibular nueritis. hospitilized both times. 3 months later i was diagnosed properly finally with vestibular migraines. its 2 years in april. i am still on medication. all of what you are experiencing is gone. you need a specialist. most doctors only know about BPPV and the epley maneuver. go to a specialist
eagle33050 hmoosey
Posted
thanks for reply. yes had it 3 months off and on. i only had the actually spinning sensation 5 times in those 3 months the rest is like I'm on a boat.
when you get vertigo do you get it at any time of the day because i only get it when i turn over in bed or laying down. during the day ill feel light headed with a fuzzy head and extreme tiredness expecially in the morning. my eyes feel so heavy its hard to open them.
hmoosey eagle33050
Posted
when i had vertigo, i was violently sick. just moving my eyes slightly, would make me vomit, violently. i had to be hospitilized. i had all sorts of symptoms, but it would start with me waking up, opening my eyes, and seeing the floor on the wall. i couldnt walk, it truly felt i was upside down. when i was recovering, i would feel ill on one side vs. the other in bed or couch. i would also feel like i was freefalling in bed. you really need a specialist. i cant express it strong enough.
you need to rule out so many other things that cause vertigo. again, most doctors really only know about BPPV- so we all get misdiagnosed with this at first. you need testing. and get your B12 levels checked -very important. get a referral to a vestibular PT. get a referral to an otolaryngologist, nuero-otology. your confusion is a symptom we all had. its scary. you need a specialist. using pillows isnt going to fix this. nor will it just go away. most it stays. and symptoms go up and down but never gone until they get the right treatment. dont accept the BPPV diagnosis until you have had the correct testing.
Lolasmom eagle33050
Posted
I get bppv. Because it is a positional thing, I do not get it in between. But I still have that off balance boaty feeling throughout.
eagle33050 Lolasmom
Posted
I'm confused you said you don't get symptoms in-between a vertigo attack yet you have the floating sensation throughout. isn't that having symptoms inbetween? because that's wat i get. ill feel like I'm on a boat throughout the day and sometimes get the spinning sensation wen lying down. and the first reply i got said its probably not bppv as it wouldn't last this long yet i thought some people get it for months? just so you know i first got it after a funfair ride. so how long have you had it straight?
Lolasmom eagle33050
Edited
Hi eagle,
My bppv at the longest was about 3 weeks. But not not constant spinning. Mine would happen when I would roll over in bed depending on which ear. It would stop if I turn back the other way. Also if I bend my chin down to my chest. The other thing that triggered it was being in the bath and laying down with my head in the water. These episodes do not last long as long as I turn back the other direction.
But when it is not triggered, I always feel off balance and weird. The last time I had it, I went for pt and had the testing and maneuver down. That stopped the episodes but the off balance and boaty feeling continues for a while.
Sorry if I confused you. Hope this helps.
eagle33050 Lolasmom
Edited
thank for the reply. yes this helps tremendously. i have similar issues. i only get the spinning sensation when turning over in bed or laying flat on my back. i get the floating sensation or like feeling I'm on a boat when I'm not spinning but that comes and goes. I've had it 3 months but it disappears for a week and ill feel completely normal and then ill get the spinning again but only when in bed. so when i say 3 months that's including the floating sensation. I've only had the actual spinning happen 5 times in total which lasts about a minute but ill be off balance for about 2 hrs afterwards then when i lay down ill feel like im on a boat again. i didn't think people had symptoms in-between bppv. hope it goes soon
Lolasmom eagle33050
Posted
We found that our patients with idiopathic BPPV had low average vitamin D serum levels (23 ng/mL). ... In our study in 4 cases with chronically recurrent severe BPPV episodes low levels of serum 25(OH)D could be measured, and, BPPV did not recur after supplementation with Vitamin D
Lolasmom eagle33050
Posted
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4196321/
eagle33050 Lolasmom
Edited
thanks for this. i already take vitamin d daily. I haven't had any spinning for a week now since I've been using 5 pillows to sleep. I've noticed its always when i lay down flat that i get it.
Ive been doing vestibular exercises which you should try for the floating sensation you get through the day. it makes you quite dizzy but the rocky feeling disappears for hours and then i do them again in the evening. seriously it really works. its head and eye movements. check you tube but find the right one. its an indian giel
eagle33050 Lolasmom
Edited
Exercises for Vestibular Disorders - Dr Anirban Biswas
170K views
Lolasmom eagle33050
Posted
Thank you for that !!!!
Lolasmom eagle33050
Posted
I forgot to mention to you, that oddly these episodes are seasonal with me.March/April and then again in Sept/October.
I did read some research that people with bppv generally have low vitamin D. I have been taking vit D3 since December as my blood test showed low vit D.
Interesting to see if this will help.
Otherwise, I am just waiting for my next event. It's March !!!!!