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Eye Dystonia (Blepharospasm)
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- Опубликовано: 23 ноя 2014
- Jane tells her story about coping with blepharospasm (eye dystonia). She talks about her symptoms and their onset, as well as the treatment and how she copes with the condition. More information on blepharospasm is available on our website www.dystonia.or...
Special thanks to Jane and to Dougal Macqueen as well as to onward-productions.com for affordable quality videos.
Please note we do not offer information or support through our RUclips channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you.
I have cervical dystonia for 30yrs and now when stressed or bright lightes my eyes clamp shut ❤
I have eye dystonia and also facial dystonia. It first started in my legs and then had stroke like spells. So it has progressed into generalized all over my body. I went to Two Mayo Clinic’s and Cleveland clinic in 2012 and nobody could diagnosis me. I felt that I was losing my mind but my husband and I seen the dramatic difference in my body.
What exactly started in the legs?
I think I have eye dystonia. I've had stabbing eye pains that started in December 2013 when I was only 28. I woke up in the morning with this stabbing eye pain. It felt like my eye was being stabbed from the inside out with a knife or needle. Sometimes the eyes felt gritty like there was sand in them. It was so bad I screamed and thought my eye was exploding in my head. It hurt to open my eyes and tears were pouring out. I've been to so many doctors and specialists and have just been given ointments and drops, but sometimes they don't work. I sometimes need a cane to walk around my house so I don't walk into stuff. I also wear sunglasses every time I leave the house, even on rainy days and in winter. I don't have symptoms every day, but on mornings I do wake up with the pain it really limits what I can do.
Have you looked into Trigeminal Neuralgia?
@@puddincakes1005 Probably wouldn't do anything. I saw my optometrist a year ago and the scans of the back of the eye showed I had basement membrane dystrophy. So, now I have a definitive diagnosis and take drops for it. The drops don't help much with the pain though so I need to take advil for that.
@@HaleyMary Dang I’m sorry! I have trigeminal neuralgia, and sometimes my eye gets stabbing pains, so that’s why I suggested it.
@@puddincakes1005 That's alright. I forgot I had posted this comment a year ago. I wish the drops would prevent the pain, but they don't. I'm sorry to hear you have stabbing pains. Hope you are able to get something to take for them.
@@HaleyMary Thank you, sorry you are still having pain as well :/
Thanks for sharing your story ❤️ . And excellent detailing by the pt.all the best for the channel
Thank you for sharing your thoughts and unfortunate discovery of eye dystonia. I have a very similar paradoxal symptoms including, when I am talking to someone (and not by myself), my eyes open wide. But when I'm listening, my eyes slowly close shut. I do have short term control (moments) when i sense danger, i can open them. But then seconds later, they may try to close or squint (causing blurry vision). My neurologist calls it Meige syndrome, But that is just a general term, and
I do NOT have any other symptoms such as tremors or spasms. The eyes just slowly close to a squint (barely open).
Botox has little to no affect, so I'm contemplating surgery that will help lift the lids. I just don't want them to remove anything, such as an eye muscle. Finding a qualified and sympathetic surgeon is extremely hard.
I hope to find some answers in the Dystonia Society. This has definitely been a life-changing event and after two years, adjusting is exhausting and frustrating. Thanks again for sharing.
Hi there I have o problems I am going few the hospitals ATM wen my eyes see sun light or day light my head go's bk looks up and my eyes roll bk in to my head I am under neurology doctors and I can see wen this happens
Dear @alshleygreenwood4943
Thank you for your comment. We do not provide information or support through our RUclips channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk.
Thank you, Team Dystonia UK
Plz try biotin tablet my Father suffering from dystonia seens 20 years and my fathers friend suggested biotin tablets.He was completely fine in one day. plzz plzz try it
I have a question. When you have a flare up, do your eyes feel as if you have something in them? Do they look irritated, I mean? I've finally been diagnosed with myoclonic dystonia, and my eyes have always closed like that periodically but they act like something is in them, when there isn't. I was just wondering if this was something that went with it?
Dear Chenoa,
Thank you for your comment. We do not provide information or support through our RUclips channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK
When I'm writing or drawing, my eye pupil will randomly and uncontrollably twitch around and my vision will go blurry, also my voice box tightens so it makes it hard for me to talk loud (and makes me only be able whisper) is this dystonia???
Dear Ainsley,
Thank you for your comment. We do not provide information or support through our RUclips channel, however, if you would like any further information or support, please reach out to us directly by email at info@dystonia.org.uk or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK
My eyes also does that except for the voice thing. Antipsycotics caused this in my case
Have you looked into Meige Syndrome?
Thank you for the suggestion! I have already checked into this and I have not been diagnosed with it! Thank you very much!
@@sakuraharuki14 Glad to hear you didn’t get diagnosed with it, but sorry if you are still searching for an answer. I also have vocal cord dysfunction which can make my voice sound weird sometimes if that leads you anywhere…