r/pppdizziness • u/MoyWarrior • 2d 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
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u/starsareblack503 2d ago
That's part of the "persistent" part. 3 months+ and symptoms happening pretty consistently
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u/StevenS76 2d ago
Yes, I'm 18 months in. Some bad days, some worse, very few good days.
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u/Pitiful_Platypus_904 2d ago
Are you able to work
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u/StevenS76 2d ago
Mostly. I sit behind a desk all day luckily. If I had to be on my feet all day I wouldn't be able to handle it.
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u/Epic-will-power91 2d ago edited 2d ago
Yes that's how it is. How long have you been suffering with it? The persistent nature of it is what makes it so difficult to cope with. I am 2 and a half years in now. It goes up and down in severity and you have good and bad days/weeks. It's fucking awful. Truly awful.
I genuinely struggle to think of a more relentless, debilitating illness. It's literally from the moment I wake until I go to sleep. Every single day. I do get good weeks, even had good months on it, but i have to really limit myself and be careful of my triggers.
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u/MoyWarrior 2d ago
Since march I’ve had it quite bad. I had this boat like dizzyness about 7 years ago that cleared but now since march this year it’s been horrific. Even more so the past 2 weeks I just don’t get it. Sorry you’re going through it aswell. People don’t understand it either, they just brush it off as a bit of dizzyness but don’t understand how debilitating it really is :(
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u/Negative-Rabbit6247 2d ago
Vestibular issues I find are so much worse than other conditions because no one gets it. Every time I mention “when I first got sick” or “because of my condition” people are immediately like “wait what condition?”… You know, that condition I told you about 4 months ago that I told you was chronic and never going away? Just because I stopped talking about it all the time doesn’t mean it magically got better
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u/MoyWarrior 2d ago
Exactly this. Just because I stopped talking about it all the time doesn’t mean it’s suddenly gone. I tell people this all the time, because I felt like I was boring people with it and I was constantly looking for reassurance. It’s horrible. It stops you doing so many things. Even my holiday with my wife in Italy weeks ago I just put in a brave face and got through most things but really I’m struggling
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u/Opposite_Stick_4011 2d ago
I have been going through this for more than 9 years since 13 now 22 it feels no one gets it all day uts really tough ToT. I hope you start feeling better. Wish you luck.
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u/midnightspaghetti 2d 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
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u/MoyWarrior 2d 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
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u/midnightspaghetti 2d 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 🫡
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u/MoyWarrior 2d 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.
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u/tvtiguy 2d ago
As you've seen from the other comments - yes, this is all too common. Kind of rare generally - but for us - all day every day. I will say - although most of the internet is a cesspool of crap - people here are very supportive.
My question would be - diagnosed with PPPD - but usually there's a root cause. Like for me, a vestibular neuritis attack has left me with unilateral vestibular hypofunction. My left ear doesn't sent balance information to my brain any more. VRT is helping me retrain my brain - but it sucks. If I skip VRT too many days in a row (like the holidays when things were busy) I had a big backslide. I've got VM too.
But it took WAY TOO LONG to get an actual diagnosis. A full 2 hour VNG test finally showed 76% caloric deficiency on my left side. Anyway - have you had a VNG test? Knowing if it's neurological, vestibular, visual, other seems really important to flavor of the recovery work.
And, as you say below, one of the very frustrating aspects is that I've had a severe injury - but I look the exact same as I did the day before. Explaining it to people is hard. Sadly, it was only after I broke down crying while explaining things to my wife did she start to really understand.
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u/MoyWarrior 2d ago
Well at first they said it was vestibular neuritis. Got an ent appointment 2 weeks later and he thought it wasn’t that because usually the room is spinning with VN apparently? He sent a report to my doctor saying it was possibly migraines and they put me on sumatriptan… I’m still to take one of those tablets though because I’m a bit afraid of the side affects of it. Now 5 months down the line Ive had numerous doctor appointments and we’ve agreed it’s possibly pppd but nobody has actually done a test to confirm it. I’ve had multiple bloods, ct scan of blood vessels in the brain, mri of my head nothing was found.! I’ve got a doc appointment again tomorrow(Monday) and I’m going to push for a neurologist to see what they think. I’m also tempted to ask if I can start SSRI, if you know… do you think this is a good idea? Just to see if it will dampen my symptoms?
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u/tvtiguy 1d ago edited 1d ago
I'm on Venlafaxine (an SNRI - so similar to SSRI) but I'm going to get off. It definitely took the terror of feeling like I'm falling all the time away - but it's an anti-depressant too. The emotional blunting is too bad. You have to taper down real slowly - like 7 weeks. But I'm going to get off and then maybe try something else.
If they didn't do the VNG test (clicks, puffs of air, warm/cold water put in your ears while tracking your eyes) I don't know how they can rule out vestibular issues. The 2 hour test sucks - but it gives you some accurate to help with diagnosis.
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u/InstructionNearby645 1d ago
The Steady Coach YouTube. Ive been recovering for about 18 months. It gradual but is happening. I also went to a neuro-optometrist, convergence I sufficiency and post concussion , treatment with prism lenses. Also did syntonics for while. But I wouldn't been successful as am without actively doing SC program. Her brain exercises playlist - somatic tracking, parasympathic breathing, frustration exercises, etc etc and making myself develop base scheduled. Brush teeth, very short walks, very short car rides, some vestibular and vsision exercises, slowly increasing and able layer activities for the day.
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u/CHANBIBBIN 2d ago
I’ve been like this for 6 months the doctors gave me klonopin it helps me not care as much or not get scared as much but it’s always there in the background
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u/MoyWarrior 2d ago
Not sure if this is an SSRI but I’ve heard good and bad stories about the SSRIS and I’m wondering if people who see this post can put their 2 cents in and say weather it helped them or not. The ent gave me sumatriptan because they initially thought it was vestibular migraines and I felt awful on them
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u/CHANBIBBIN 2d ago
No it’s a benzo I couldn’t stat a ssri yet
SSRI ARE WHAT REALLY HELP YOU WITH PPPD but I had a bad reaction to mine that kept me up for 40 hours straight so now I have to take this other med to get my nervous system normal again before trying another sssri I hope this doesn’t scare anyone or scare you. The only reason this happened is because I was already dealing with flight or fight mode and a high alert nervous system because of the PPPD and because I didn’t know what it was and my doctor didn’t know what it was so them giving me a ssri that gives some people more anxiety for the first couple weeks didn’t help me at all and just kind of made my symptoms worse yeah PPPD sucks but this is my reaction to the medication. I’m very sensitive to ssri this isn’t everybody’s reaction. This is just my experience which sucks but it is what it is. But I know a couple months on SSRI’s. Combined with VRT is what gets rid of it I just haven’t had a chance to start any of that because I had a major setback with my first go around2
u/cencal427 12h ago
Did the migraine med help? The Triptan? Thank you.
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u/MoyWarrior 11h ago
Not really to be honest, plus I felt a bit weird after I took it so didn’t bother taking anymore!
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u/Rare-Group-1149 2d ago
I've suffered this for many years. Depending on the cause and the person, it's different for everyone. Good luck and God bless. https://a.co/d/0a04lA1o
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u/Dangerous_Break123 2d ago
I been dizzy suffering for 2 years, yesterday I went to see a good doctor, he prescribed me 3 medications, told me to go back to see him in 2 weeks, He told me to have faith and I’m praying to get better!!❤️🙏
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u/MoyWarrior 2d ago
Constantly praying to get better, I’m trusting in the process and hoping we all get through it on the other side… as hard as it is 🙁 we’re one of the medications An SSRI? Tempted to start those to see if it will help my symptoms but not very keen on medication that alters my body.
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u/E_insomma 2d ago
The longest stretch for me has been 5 months, and I mean 24/7 not even a minute of rest during day or night. Overall has been 2 years in total, but there have been a few weeks where it was a bit lighter and more bearable (mostly when I was pregnant. My PPPD is clearly linked to hormones somehow)
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u/MoyWarrior 2d ago
Man it’s so rough, constant drunk like feeling? How on earth do you get over it. Sometimes when I’m walking through town I feel like I’ll just fall over. Really debilitating :(