Dizziness / vertigo poss PPPD - help

[Outlookmainlyfair]

Had constant dizziness and bout of vertigo since June. Had to give up my pt job and suspend my creative business. Feel grim almost constantly - mid way between dizzy drunk and shocker hangover with none of the alcohol or fun of it. Good news is I should be getting vestibular rehabilitation/ physiotherapy but I’m waiting for that.

does anyone have any good news stories or tips on how I can help myself. I am doing anything possible that make a small difference in the hope that any help is better than suffering. I have given up alcohol/ caffeine / trying to avoid stress / going for walks (this is a challenge). Any hints very gratefully recieved!.

I have been perscribed drugs but even the dr say they rarely work and I’m scared off as the side effects are….dizziness!

Have you tried the Epley manoeuvre? It’s helped me a lot

Thanks - I do know that this can be amazing, alas did not work for me as that is not my issue.

Is it not? Because your title says "poss PPPD" (it's BPPD, btw).

I too came on to say that the Epley manoeuvre, done daily as instructed by my neurologist, has helped me a lot with it.

All the best to you. Either way, the symptoms are really unpleasant.

PPPD is a totally different diagnosis to BPPV so won’t respond to the Epley.

I had PPPD a few years ago. Horrendous but totally resolved now OP so there is hope. Look up vestibular rehab exercises. Good luck 🙂

Thank you @TinglyandCurious hope it what I need, so glad you got better! Positive stories are what I need. And yes, I was def told PPPd not BPPD.

Is it there all the time (lying, sitting etc) or just when you stand? At the start of the year I was treated for labyrinthitis (did the Epley/vestibular rehab and had prochlorperazine). It got a bit better but I was still light headed/dizzy on standing. I'd been referred to the long covid clinic and we discussed dysautonomia. My dizziness turns out to be unrelated to my ears at all and is caused by Postural Orthostatic Tachycardia Syndrome (POTS). Basically my heart rate goes legging upwards every time I stand, which causes dizziness/lightheadedness.

Really hadn't expected anything like that because GP seemed fixed on it being my ears (apparently common after respiratory infections - I'd had covid - and also had inflammation/redness in ear canal). Have had more tests and am on beta blockers at the moment awaiting a full review from cardiology. Beta blockers making a massive difference (can walk a couple of km without feeling like I'm going to fall over any second!).

Probably your doc is right @Outlookmainlyfair but I just wanted to give you something else to consider.

So sorry @MassiveOvaryaction you have pots, it is awful. I friend of mine had that and she was the person who mentioned vestibular rehab. I can get dizzy any time - last night I was awake till gone 3 hoping my head would calm down. (I read a lot of mumsnet).I really hope you get better soon, glad the recovery has started!

Ah, sorry OP, I should have had a google before weighing in. Hadn't heard of PPPD. Hope you get it resolved.

Did you resolve this ? And how ? Currently going through this and it’s awful

Have you tried excercises to rehabilitate your brain to accept the dizziness ( walking turning head side to side , staring at chessboard shaking head etc) I am a long time “ dizzy person” First episode in 2007 lasted three weeks , second 8 months and then eased off . However it’s been back many times since , sometimes for a few days , sometimes weeks , sometimes months. Complicated diagnosis because I do have BPPV times when epley helps but others nothing works other than trying to get my brain just used to it . I as part of a dizzy group before mumsnet and even the founder got better from pretty severe dizziness after five years . Sorry I’m full of cold today which never helps , and this means my message is a bit garbled . I personally have ended up on anti anxiety medication in the three long spells as I just found like hard . I can also have years when it’s almost gone . Sending so much hope for your recovery it’s crap as people do not understand what it’s like to live with a world that doesn’t stay still

Have you had antibiotics lately? I had vertigo and it was a result of antibiotics I had taken a month or two earlier.

Thank you. Vestibular rehab worked wonders. Almost a year of being ill and having to give up work and the magic worked. I had to work really hard to do the exercises (simple exercises but made me feel awful while doing them) but it is like finding out how to live again. I found a lady who did vestibular rehab privately near Southampton (cost less than the work I missed) but was on the waiting list for the NHS balance clinic if I could have waited a year. You can find the exercises online, but that makes the assumption that you have the type of illness that will be fixed by it, going through the specialists they can diagnose properly.
(It is a while since I looked at this thread and have not read through it again, so not sure if this is covered, that vestibular rehab is not the same as the Epley Manoeuvre that only works if the ear crystals have moved to the wrong point of the ear and is a different source of dizziness)

Thank you for the reply , did your gp diagnose it properly before you went to the specialist

No. My Gp referred me while saying, ‘what shall I write I don’t know what is wrong with you’ but when I was determined he did and to his credit marked it as urgent (I had been ill for over 6 months at that stage). The specialist I saw says she has GPs as patients in tears in her office as they had never known about the issue until they themselves suffered and then felt awful about the number of patients they had sent away and not been able to help.
The way I got onto the NHS waiting list was going for a hearing test (I thought it could have been Menieres) and the audiologist had a next door office to the balance clinic and she took time out to chat to here colleague while I was there.
before that the gp referred me to a neurologist (and he was rudely dismissive) and a endrochinologist (my prolactin / pituitary tests were indicative of a prolactinoma). Both specialists were a total waste of time. I had a possible diagnosis of vestibular migraine and took some meds that did not work and changed my diet (no caffeine/alcohol and chocolate) but that had no effect except to take away for joy of my morning coffee (could not drink alcohol as I felt to bad anyway).
if you are suffering and need any extra info feel free to PM me, I know how bloody awful it is!

I’ve had this for 7 years and the doctors have all been utterly useless and no rehab or physio helped.
After years of research these are the things that have helped me:

Taking high strength ferritin every day (my ferritin levels were deemed “normal” but they were borderline and a symptom of low ferritin can be ongoing dizziness.

vit b2 & b6 supplements (I take the high strength solger ones. If you read up on deficiencies for these they can all cause vertigo. Also take folate which is another that can cause balance problems.

caffeine and gluten seem to be the two things that trigger my symptoms a lot so i keep them to a minimum.

if your hormone levels are out of whack too (estrogen and progesterone) it can also cause problems with vertigo. There are various supplements you can try that can help to increase both of these

Came on to say could be hormonal.
I had it in peri menopause and it got better on hrt.
Many yrs later stopped hrt and dizziness returned.
I had to go straight back on it and been fine ever since.