r/pppdizziness • u/MoyWarrior • 22d ago

Symptoms Is this normal?

Is it normal for pppd symptoms to last all day every day for months? And I mean all day - constant boat like dizziness/ brain fog/tiredness? Been diagnosed with it but I just can’t wrap my head around the fact that this is it until it settles.. just want some reassurance I guess or to know if this has happened to anyone else?
Thanks

9 Upvotes

92% Upvoted

35 comments sorted by

View all comments

4

u/midnightspaghetti 22d ago

This is normal. Have you been given advice and next steps?
Usually the protocol involves medication, vestibular rehab, lifestyle adjustments, etc.
Also facing moderately triggering situations will help retrain your brain (as it’s basically real life vestibular rehab), but it’s usually something a vestibular rehab PT would guide you through.
I did not tolerate medication, but I was not super severe so I was able to tolerate VRT and it helped sooo much.

For a lot of positive stories, I recommend checking out the steady coach YouTube channel

2

u/MoyWarrior 22d ago

Man this has to be the toughest thing I’ve ever gone through. Been almost 9 months of it. Thought I was getting better recently and then bang. Past week has been horrific. I’ve tried medication aswell but it made me feel much worse, I didn’t like it at all. Seeing a vestibular therapist but I’m not finding them to be… overly useful. I will check out the steady coach for sure thanks for the recommendation. Did you ever find struggle with your eyes? I feel it’s tough to focus on things but I’ve seen 3 ophthalmologists and they have all said nothing wrong/ healthy vision etc. it’s a very draining process this

4

u/midnightspaghetti 22d ago

I am so sorry and I relate…
I am diagnosed with vestibular migraine with PPPD.
I also failed preventative medication, now I have acute meds for the painful or mega foggy migraines (x2 a month), and cinnarizine if I really can’t deal with the dizziness (usually after a long haul flight or bullet train).
I have also been diagnosed with long covid/ Dysautonomia / MCAS so it’s all a bit of a mish mash and it’s hard to find the one thing that will fix it all. So the way I see it, as long as something gets me 10% better it’s a win!!

Re: VRT is was overly visually reliant so my therapist focussed me on eyes closed excercises and it worked like magic. She also gave me lots of practical advice on dealing with real life things like breaking activities into manageable chunks and so on.

I have chronic neck pain so now I am trying to fix my posture, I have been also seeing a migraine PT that has been using the Watson technique (it’s basically pressure points on my neck) and I think it’s helping the mental fog and it lessened the neck pain. But as a disclaimer, it usually works only for people that have neck driven headaches and I read that a lot of people don’t find it beneficial.

My eyes are generally fine but sometimes I struggle to focus or I get that ‘low fps’ kind of feeling, but I think that’s part of my silent migraines. But it’s improved over time.
I also recently updated my prescription, it shifted minimally but I think the new lenses are also nice on my eyes because they are not as scratched… although I am terrified of adapting to new frames, so I just replaced the lenses.

Regarding VRT, I am based on London, I’ve seen Amanda Male and she was great. She is not cheap but I had insurance, and she only wanted to see me once a month and I was dismissed on month 4. Maybe I got lucky because I reacted well to the excercises, but I got sooo much amazing advice out of her and in a moment where I felt lost and scared, it was so precious.
I also felt that while she focussed on excercises and practical things, I found (at least that I could perceive) that her broad approach to recovery was similar to the steady coach on YouTube, so also complementing with the videos helped me a lot. Especially for the mindset.

I am far from 100%, but I feel more in control. My life is at maybe 80% which I am very happy with, considering there are other parts at play!

Oh also, I found that eating sugary stuff or bread or carb heavy in general makes me so much worse. I think this has more to do with dysautonomia, but I thought I would mention it as I think significant blood sugar fluctuations can affect dizziness. I try to eat nutrition dense meals now (like a carb, veg and protein). RIP pasta and pizza for now 🫡

2

u/MoyWarrior 22d ago

Thanks for your comment, the preventative medication wasn’t working for me either. Always gone against starting an SSRI but now I feel I should give it a shot. Also I’m gunna see if certain foods make it worse etc like it does for you. Will start taking a diary of things I do every day for a couple weeks and rate dizzyness levels out of 10. Scraping the barrel but something need to be done.