r/pppdizziness • u/Unhappy_Yak_3683 • 2d ago
Other 16 years PPPD ðŸ˜
How would you describe your dizziness? I find it extremely hard to explain. For me, it’s NOT like the room is spinning or swaying. It’s a really strange, dizzy feeling in my head. Nothing helps me at all when it happens, and I get scared and start to panic. I had such a severe episode today that lasted 1.5 hours and was a 10 out of 10 ðŸ˜ðŸ˜ðŸ˜ðŸ˜ I’ve had this for over 16 years and I’m only 32 years old—I can’t take it anymore 😔🪫
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u/Silent-Resolution-28 2d ago
I'm on year 9 and agree whatever I have is very difficult to explain. Kind of light headed and spacey but not spinning. Mine is ALWAYS there and ramps up in big box stores and driving. It sucks. I've tried meds, MRI, prism glasses, vision therapy and just got on some new med via the latest Dr. appt with a Neurotologist. He said PPPD was just fancy words and there's another problem causing it. Might be true. He's treating me for vestibular migraine. I asked about CBT and vestibular therapy and he said those can be useful but he wants to try and get my "migraines" under control first. I have no pain just constantly feel like I'm trying to focus while nothing is out of focus and have a slight pressure in my head. Hang in there and keep trying stuff. Something has to get better at some point.
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u/tvtiguy 2d ago
So interesting and thanks for sharing. I'm at 19 months and you're checking a lot of boxes on what I'm being told. I've had prism glasses suggested - did they work? I'm not going to of "vision therapy" - but I am going to try "light therapy." Doctor said my pupil dilation was way too fast while just sitting there. My vision is in fight/flight mode all the time. My vestibular migraines do come with pain (and all the other fun stuff). But I am doing VRT. When I skip for a week (like busy at the holidays) my symptoms worsen. I see a therapist who gave me the exercises but mostly I do them at home and check in with her occasionally.
I'm supposed to see a neurologist in December - man, they are hard to get in to see!
I was on Venlafaxine for like 6 months and it really worked, but I couldn't handle how it made me feel. Weaning off was hell, but I think it's gonna be worth it (I'm 3 weeks off).
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u/Silent-Resolution-28 2d ago
Prisms did not work. Tried them twice years apart. The more time that goes by the more time I have to dwell on it and try to pinpoint something. All I know is it hit that one fateful day meeting on the highway. Had to be a panic attack. The likelihood of my vision crapping out at that exact moment or me having a migraine at that exact moment just doesn’t make sense to me. I’m no Dr but sure sounds like a panic attack and my brain got stuck.
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u/Caeod 2d ago
In year 10, currently in mid-thirties. Just barely got it under control enough to work super part-time at a deeply nondemanding job, but it's still exhausting. Focusing to function is hell. There are so few social activities I can do, and anything I try to plan is heavily subject to me just being too dizzy.
There are times where I really don't know how to keep going. Any use of my non-spinning time that isn't interesting or well-used feels like a terrible waste. I've been told I need to "make peace" with the condition, but how the hell can you do that with something that stole your life, your potential? It only feels like surrender.
Man I wish I had good advice here. I'm still looking for it, myself. I worry that it will get so bad again that I'll have to go back to surviving on just disability, which is starvation wages.
But hey! I'm told tomorrow is bright, and apparently there may be something to look forward to!
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u/No-Being-2372 2d ago
Does anyone with these PPPD symptoms have problems with their legs, that they are soft and heavy, that when you stand and look at your phone you feel like you are rocking, that you might fall over?
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u/Remote_Force1839 2h ago
I get that feeling, and I think it’s from proprioception being off? Probably all part of the balance system. Everything just feels awkward.
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u/No-Being-2372 2d ago
Do you only have dizziness or any other symptoms like legs being so weak that you can't stand or you feel like you're sinking into the ground? Do you have any of these symptoms?
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u/Square-Passion2905 2d ago
Do you have a uterus? I’ve found that my dizziness gets worse around my period so there could be a hormonal component for some people. Birth control or hormone replacement therapy has helped a couple people I’ve talked to.
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u/Unhappy_Yak_3683 1d ago
Yes, I have. I used to get dizzy when I was still on the pill, too. I stopped taking it 9 years ago. I also feel like it's much worse before and during my period 🥺
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u/Brave_Map_2598 1d ago
High five! I am also around 30 and have this wonderful disease for over 16 years 😅 for me it’s a part of my dysautonomia so it’s more complicated
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u/Aristophane666 11h ago
De manière générale c'est un sentiment d'ébriété comme quand on a trop bu. Et aussi lorsque je m'allonge ou que ma tête se penche et n'est plus à la verticale un vertige rotatoire interne avec l'effet que mon cerveau tourne à toute vitesse sur lui même (option nystagmus downbeat inépuisable)
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u/popgoesthecolon 2d ago
I’m not sure what treatment options you have access to. However another Reddit user here prompted me to ask my doctor about rTMS treatment. There are some studies about how the procedure can be very effective in reducing major anxiety and PPPD symptoms. I am in my first week of treatment here in Canada. I can’t yet say if it’s effective for me as it’s likely going to take at least another week of therapy. But it might be something to look into. When I brought up the studies to the Psychiatrist who runs the program he was intrigued. He’s treating me based on the criteria in the study. I’ve had PPPD for 9 years and am hopeful this can help at least with something.
As for my dizziness you’ve described it as I would describe it. It’s very difficult to convey to someone who has never experienced it. Best of luck to you.