Focal Dystonia following Surgery

[Elaine H]

I haven't been on CWE for a while, because I have recently been diagnosed with Focal Dystonia, also known as Blepharospasm, a neurological movement disorder, whereupon my eyelids go into involuntary blinking, closure, stiffness, not nice. What I wanted to ask you guys was, has anyone else got it, especially following epilepsy surgery?
When I was first told I had it, I was told it could have been connected to the surgery, but the second time I saw the doc, he said, no, I didn't say that, as if he should have kept quite about the possible connection in the first place.
There is no cure for this condition, but the treatment just happens to be three monthly injections of Botox around my eyes. It sure helps, and may keep my looking younger a bit longer if I'm lucky.
I'd be interested and very pleased to hear from anyone regarding this eye condition.
Love

Elaine X

 

[Cint]

Hey Elaine,

Good to hear from you again, but sorry to hear of your eye condition. I've never heard of it in regards to epilepsy surgery. You're not taking any AEDs, correct? I haven't had any eye problems like that since my surgery. Hope you're doing well otherwise and remaining seizure-free.:tup:

 

[Elaine H]

Hi There Great to hear from you. I hope you are seizure free as I'm not and still have the Atonics where I just fall to the floor in a heap. This Dystonia isn't curable which worried me when I first read about it, but the botox sure helps, I was in London on Thursday having some injections. As for ant-convulsants, I take five different drugs, a total of twenty two pills a day, and I get very tired, I'm sure you can relate to that, are you seizure free, write and fill me in on what's been happening since we last spoke? Thanks for replying to me, I don't know many of the folk on here anymore. Hope to hear from you soon, and that you are well xx

 

[Cint]

Well, after my LTL, I was seizure free for 14 months and to this day I am still taking a high dose of Keppra + Topomax with Potiga, which is a newer one on the market. I hate them all, with the miserable side effects they all have. Plus an anti-depressant and other meds for other problems + insulin shots for Type 1 diabetes with every meal and bedtime. This diabetes isn't curable, either and can lead to blindness and other issues, like stroke if I don't keep my glucose under control. Plus stroke runs in my family, as my grandmother had a stroke and my father had a stroke 15 years ago. He passed away just last month after complications from kidney failure. After suffering from the stroke, his kidneys quit working, so he needed dialysis 3 times a week. He was doing it for 8 years and his body finally gave in.

So I have to take extra good care of myself, eat right, exercise, no excess drinking, no smoking as life is too short and I already have enough problems. I do not want to end up like my father did--- on dialysis in a nursing home. Things can only go downhill from there. My father did smoke for over 40 years and that only added insult to injury.

I hope I didn't depress you. Just telling you what's going on in my life now. I've had only one seizure (a CP) since last Christmas Eve (knock on wood), plus a few auras. My magnet to the VNS has been able to stop them. :clap:

 

[Elaine H]

Hi Cint I am so sorry to hear of all the problems you are having to deal with right now, that is one long list, especially with the diabetes too?! Like you say, we just have to look after ourselves and get on with our lives.
I was seizure free for five years following my first surgery, so I know what you mean and how you feel being seizure free for fourteen months. All I have ever wanted to do is drive again, and we only have to go a year seizure free to get our license back in the UK, but now I have this Focal Dystonia, I will never be able to drive seizures or not. You mentioned the possible loss of sight due to Diabetes, that makes me realise I am fortunate to have only lost control of my eye muscles and not my sight, even if my eyes do sometimes tend to do their own thing in the strangest situations, especially bright sunshine and ultra violet lights, do let me know if you would like to email aswell as here on CWE? I write regularly to a few of the people from this great site. I hadn't heard of that drug you mentioned, Potiga. Do you get warnings of seizures? I have Clusters now, and I'll go a couple of months seizure free, then I have what I call Flashes, horrible things, bit ;like Auras, hope you are ok at the moment? I had about ten Simple, Complex,and a couple of Atonics last week, ok this week so far, touchwood. x