🙂 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.
Thanks W Bee for the information this is very interesting as many of the symptoms is what happens to me all of the time. I will definitely look more into this 😊.
Yup- that's me. I used to be asked, does the room feel as though it is the spinning, and the answer was always, 'No'. Can one get a diagnosis? It might help understanding, as always, if there is a medical label.
This was actually one of my first symptoms ..way back in the 1990s. But..apparently it’s only in recent years that PPPD has become recognised.
I came across the reference to it by sheer pot luck. For years I’ve coped with overwhelming symptoms that were basically put under the umbrella of Cerebellar Ataxia..and that was it, no help or further explanation.
I’d joined some Vestibular Disorder Support Groups hoping to learn how to cope..and that was where I found the reference to PPPD. 🤔It was probably a US group.
At my last Neuro review, I was asked if I’d like Balance Therapy. All sorts of horrors crossed my mind, but I thought why not. As it turned out my GP was involved in this referral, and I was simply sent to a general Physiotherapist.
In the meantime, I’d come across PPPD.
At the Physio appointment, I explained what my problem actually was. By chance ….her colleague was qualified in PPPD…so that is how I was eventually referred, talked to someone who asked a lot of questions and totally understood my symptoms. I was given some basic eye exercises before a follow up appointment.
The flies in the ointment are…...a basic diagnosis of Cerebellar Ataxia, combined with eye problems and a Vestibular disorder.
In conclusion, I have the disorientation whenever I’m mobile, it makes me want to just sit still in order to function mentally. But, it worsens in episodes.. and then I’m unable to even hold a conversation.
Similar problems although maybe not as severe. A few years ago, when it was thought I had BPPV- loose particles in the inner ear as a stand alone problem, I did a lot of exercises, every day, as directed. Sadly, it overwhelmed me and started to make me much worse, very much worse, poor brain could not cope at all. Now, a little of what is difficult will help, (walking, gardening) slightly too much, I pay for it. Sometimes it is well worth it! Sitting still is really helpful, anything more than bite size internet is too much and undoes the good. Most days I start by sitting still for a few hours. My eyes move in jumps so scanning as most people can is impossible and I found trying to control that incredibly difficult if not impossible. Do let us, or me, know how you get on? Very best wishes.
So far, I’ve only had an initial appointment..and was given some basic eye exercises.
I have a wooden spoon with a letter A on it, and keeping my eyes on the A , I move my head from side to side (5 times x 4 times a day).
I can see the logic in this, but I have double vision ..
My initial double vision was eventually ‘cured’ by Strabismus Surgery ( on my left eye) and vision was normal for several years. Then, I noticed ‘double’ recurring at various times. The Lens in my right eye is ‘askew’ due to previous Iritis inflammation (both eyes) and I’m waiting to find out if Cataract Surgery will be possible.
🤔 I’ve had numerous Epley Manoeuvres, but still have issues. The Physio speculated that it’s possible one of the ear canals still has crystals, and offered to do a manouvre I’d never heard of…BBQ Roll. Maybe next time 😉
My Nystagmus is Downbeat, so I can manage fairly well unless bending is involved, or tilting my head ( such as reading a row of books on a shelf)..then vision bounces.
I’ve read posts where people have said 4-AP has been helpful with Nystagmus. But, this is probably not easy to have prescribed in the UK unless it’s for MS.
🙂 I do much better on a flat surface when walking..any ripple underfoot triggers disorientation of eyes-ears and cerebellum 🙄
I should have answered more clearly yes I was diagnosed on symptoms only, but on examination he also found I had another problem with my ears so sent me once again too the E NT where it was decided I did not have meniors disease after all!I Did not have an MRI
It’s not well known but..some people have a normal MRI, no Cerebellar Atrophy visible.
But..it is normal practice to check .
I was initially diagnosed with Epilepsy..and it wasn’t until I started having falls that there was further investigation, and that was only because I persisted in harassing my GP. I’d contended with the Epilepsy diagnosis from the mid 1990s until 2011…and I wasn’t having seizures.
I have just remembered I have had an M R I but only some time after my diagnosis. The latest MRI came to Portsmouth in a caravan, my consultant wrote to me later and said a few changes, but nothing to worry about?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
