PPPD..a Vestibular issue

:slightly_smiling_face: Not all of us cope with Vestibular issues in addition to Cerebellar Ataxia …it’s like a triple whammy if eyes and ears are out of sync with the Cerebellum.

Today, I discussed it with a Physiotherapist, and it was a revelation having somebody understand how difficult it is to explain symptoms. We chatted for an hour, and she outlined therapy that could help cope…

I’ve contended with this for a good 25yrs, and only recently found it has a name…PPPD

Persistent Postural-Perceptual Dizziness (PPPD) causes dizziness without vertigo and fluctuating unsteadiness provoked by environmental or social stimuli (e.g. crowds), which could not be explained by some other neuro-otologic disorder. PPPD typically starts shortly after an event that causes acute vertigo, unsteadiness, dizziness, or disruption of balance.

1 Like

That’s good to hear x

This is so interesting :thinking: my family has cerebral ataxia and I’m going in June to see a neurologist and probably get diagnosed unfortunately. Right now I’m dealing with hyperthyroidism and have two tumors on my thyroid which I have to get a biopsy. I started taking medication to right my thyroid and ever since then I have had blurry vision really bad double vision and worse unsteadiness I thought it was this medication I do have puffy eyes now but like you said I have told my husband it’s hard to explain the feeling im having but it is not right. So maybe this could explain the way im feeling?

1 Like

I was hyperthyroid for years which caused me to shake because my body was in high gear all the time. The doctors didn’t know of the association with Ataxia then so it’s very possible that it brought on full blown Ataxia. Now I’m hypothyroid and I take Synthroid every day. Good luck.

I’m taking methlmazole idk if I’m allergic being that my eyes are puffy? I look tired all the time man the list goes on and on geeze gotta live day to day though.

I was given a nuclear cocktail to kill part of my thyroid to bring me to a normal level. However over the years it turned hypo and that’s why I take Synthroid. I saw a commercial on TV “thyroideyedisease” something like that regarding eye buldging and how the commercial reduced the bulging. Do a Google search and see what you come up with.

this was it https://www.tepezza.com/

I thought of that but my eyes aren’t bigger at all just puffy around the eyes squintier.

I’ve been worried about gaining weight I have always been small and I don’t eat a lot at all. I don’t eat sweets if I do it’s like 1 cookie. I’m plant based too so there’s that but I’ve gained like 10 lbs how? I work out(at home right now) also

Usually hypoT folks might gain weight not hyperT since their metabolism is lower. My only advice would be drink more water instead of eating and bring it up to the doctor at your appointment.

I only drink water nothing else but I will talk them it seems like I haven’t gained anymore maybe it was the initial weight I don’t know but I don’t want to gain it because it will make getting around harder.

Please let us know how you make out. :smiling_face_with_three_hearts:

Oh def I get my biopsy tomorrow so we’ll start there.


:thinking:My Neurologist said my Thyroid function was ok. Unfortunately there’s a limit to what you can request on the NHS as far as testing is concerned, so I doubt whether they’d redo it.
But…I’ve had a lot of appointments with a NeuroOpthamologist, so I would hope she’d have picked up on anything obvious.

1 Like