7 months of daily vertigo
Posted , 3 users are following.
Hi, can anyone help please? I've been suffering with daily vertigo and balance issues continually for 7 months. I initially got diagnosed with BPPV, and had a severe reaction (but without nystagmus) to the Hallpike-Dix test. My symptoms persisted so a further 2 visits to ENT and 2 subsequently negative Hallpike tests. However, I am no better. At best I have mild vertigo on a morning, at worst I have severe vertigo, causing me to have to cling on to objects. Has anyone else experienced BPPV for this long or have I been misdiagnosed? ENT have bandied around possible Pppd and vestibular migraine. But I have been trialling amitriptyline for 1 month with no improvement. I am female, 51 and have had to go from fulltime to half time work because of this. i suspect, like many others, i feel very miserable with this condition, which is both severely debilitating as it is frightening and I feel drained with coping with this on a daily basis. Any ideas please? Thankyou for reading x
0 likes, 10 replies
eagle33050 Rippled
Posted
i have similar issues. diagnosed bppv and pppd. only get vertigo when laying down but haven't got it since sleeping on loads of pillows. i do get dizzy during day but not vertigo.
i also get tinnitus in both ears which is odd. ive never had a positive hallpike test i wonder if ive been misdiagnosed too.
i do think i have pppd. try sleeping up for awhile cause crystals float when laying down. i get brain fog, the feeling im about to spin but dont, rocking feeling had it past year. its horrible
Rippled eagle33050
Posted
Hi, thanks for your reply. I try to prop myself up but slip down in the night. I had terrible rocking, tilting, sudden 360 head spins for the first 2 months constantly....no respite. I too had tinnitus in both ears. The vertigo is so severe in the mornings. Within a few minutes of getting up. And that's even by gradually sitting up and getting up slowly. It's so bad I have to quickly sit down, grab a hold of things and wait for it to pass. Utterly terrifying. No nausea though. Are you on any meds? I'm thinking of going privately for a 2nd opinion. How long have you had yours and us it daily? x
eagle33050 Rippled
Posted
have you tried the epley? I've had mine a year. it has disappeared for weeks and then returns. yes mine is daily. I've slept sitting up for 6 months. i cant lay down at all as soon as i do i feel like my head is about to spin.
ive got Valium because its caused long lasting anxiety too.
im getting 2nd opinion too you should see a neuro-otologist they deal with balance, inner ear and vertigo. a normal ent doctor wont help you. the only relief you'll get is if you sit sleeping up try sleeping on couch or something. at least you'll have a break from the dizziness. mine was like yours every morning now no vertigo only cause i don't lay down. now i have to work on my pppd.
Rippled eagle33050
Posted
God its grim isnt it 😔. I'm taking anti anxiety meds too because it's just been horrendous. Yes I had the Epley 3 times in total. First time was horrific, next 2 no reaction, so they said i must be clear, but I'm not. My sister is a GP and she doesn't know anyone in her whole career who has had it so long. I dont know whether to go and get a 2nd opinion or go straight to a vestibular rehab physio. I'm so angry and upset with having this. Its wrecking my life. Did you have the Epley?
eagle33050 Rippled
Posted
i got mild vertigo once after about 50 times of doing it but it caused unsteadiness days afterwards. too scared to do it again. ive had vertigo twice when laying on my right side 3 days later when laying on my back and once when doing the eply which was mild. done hallpike test and negative. get tinnitus which is a hight pitch lasts about 10 seconds. now im sitting up trying to sleep. its controlled my life ill have good days bad days sometimes get dizzy for a couple of hours.
eagle33050 Rippled
Posted
it takes 6 weeks for the crystals to dissolve if that's what you have.
i keep thinking im going to start spinning and not stop and scared if its meniers. dont think i could live with that.
Rippled eagle33050
Posted
I understand. I'm scared too that it wont stop. I think we both need to investigate further. In this day and age we shouldn't surely have to put up with this? Its wrecked my quality of life too. There are surgical options I've read about which i would have to consider if this isn't resolved. Have you thought about vestibular rehab?
eagle33050 Rippled
Posted
ive tried vestibular exercises if that's the same thing. i had 4hrs sleep last night im too scared to lay flat. yours to me sounds like bppv but the only thing im not too sure about as to why "like me" you have tinnitus.
if you had another disorder you'd get the spins during the day too but you only get it when laying down. you could have chronic bppv you should try the hallpike test. if this is positive then it's bppv
Rippled eagle33050
Posted
Thanks. I've had both positive and negative Hallpike tests. Now seeing a vestibular physio but even she is a bit puzzled why I'm so bad on a morning but then improve during the day. Two weeks ago I had the Epley again for a 4th time as well as treatment for the lateral canals. But still no improvement. I'm totally at the end of my coping ability with it all now 😥
Jollysammy Rippled
Posted
My wife had increasingly bad vertigo for 7 months, we finally traced it back to the memory foam mattress we bought 7 months ago, removed it and went to innerspring mattress and symptoms have relieved after 2 weeks and getting better. Do you have a memory foam mattress or topper?