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TOPIC: Rare condition affecting my eyes

Rare condition affecting my eyes 2 years 9 months ago #3569

  • skye-linz
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'm in a difficult position. When I was 21(now 27) I developed severe spasms at the back of my right eye which was caused by eye strain through over studying. Since then my life has been a battle and my life stopped from that day. I could no longer study, work and lost my independence. The spasms make me feel I have to close my eyes and the constant tightness/cramp/ pulsating behind my right has got worse and spread down the side of my right face (noticeable upper lip and nostril twitches). I also get alot of tension headaches caused my eye strain as I used my left eye alot to glance etc. The pain is constant and I am registered as partially sighted as I cannot keep my eyes open to do simple tasks.

I've been to multiple hospitals around the country and noone can find why the spasms are happening or target the source of my pain. I am in the care of a consultant who gives me a botox injection at the side of my nose but this does little to help as the spasms are not coming from here.

Noone has seen my situation before and I have hit a brick wall really pain wise. I take: diazepam, mematine, gabapentin and citalopram.

Even getting the diagnosis of "dystonia" has kind of been half hearted and not really something that's spoken about when I receive my injection.

I was just wondering- does this sound like dystonia to people? Has anyone found any joy through avenues/ medications?

Please help, any response I would be grateful with,

THank you, Lindsay
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Rare condition affecting my eyes 2 years 9 months ago #3579

  • jonth
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So sorry to hear about all your problems with your eyes etc, Skye-Linz. I was first diagnosed with Hemi-facial spasm. Mine is a very long story starting 16 years with Breast Cancer. Then I was at risk of Ovarian Cancer. I was damaged in my abdomen, the nerves. I noticed straight away from waking up from the Oopherectomy op then my eye was hurting.i didn't like light or sunlight. My eyes close most of the time. But I know if there is a slight bit of stress, I get worse with my symptoms. My muscles are severe on my righthandside side of my face. My upper lip more on the right hand side is more up in the air. My jaw also doesn't open fully at all. I have had Botox injections around my right eye. It help to a degree probably for 2- 3 weeks. When my face and eyes are really bad, it's not that I have a headache, but when I am suffering with sunlight, normal light, or trying to concentrate , it can be so bad that I am violently sick. I also do have severe balance and co-ordination problems and severe Fatigue. But I do have Dystonia in my neck, spine, legs and feet, and I think it's starting in my left arm as well. I have in turning feet and legs, severe stiffness in feet and legs, I have loads of other illnesses and disabilitys . I have only just been told that It's looking like I have generalized Dystonia, I am really suffering most days. I have these other attacks, me and my hubby call them my panda attacks. I go dark under my eyes, and really dark red on my eye lids, I can feel a massive fatigue hitting me, and I know that a attack is starting, I then have trouble speaking, and sometimes I can't talk at all. I have loads of health issues, it's very scarey. It sounds to me like you have Eye Dystonia, but obviously perhaps you need to speak to your GP, and ask for a 2nd opinion with another neurologist. It's really hard to get a diagnose. I am on Baclefen, but because I have about 100 allergies, and I have a epi-pen, because of Anaphylatic Shock, I take the drug in small doses. I am on a pain patch, and I have recently asked for the patch to be upped. Take care, Skye-Linz.
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