Newly diagnosed : Hi, I have just been... - Dystonia Society

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Newly diagnosed

Katiex profile image
4 Replies

Hi, I have just been diagnosed with Blepharospasm, I was wondering what tests if any you need for a diagnosis of Blepharospasm? I have been offered botox injections but I am not keen and would prefer to try medication first, does anyone have any experience of taking medication for this condition?

I am worried this condition will progress and as I have epilepsy I was wondering if these conditions can be linked.

Any advice would be grateful.

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Katiex profile image
Katiex
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4 Replies
Judianne profile image
Judianne

I have Blepharospasm and have been having Botox since 2004 it worked for me for several years, after which i felt it wasn't working as well, they took me off it and gave me Gabapentin which was awful for the nearly a year that i took it I was like a Zombie, back n Botox now.

MylittleBrody profile image
MylittleBrody

Hi Katiex,

I had symptoms of Blepharospasm for more than 2 years before I was diagnosed with it. I was referred to RVI in Newcastle upon Tyne, even they didn't know what it was at the start. I got referred to Neurology at the same hospital and eventually got my diagnosis as Blepharospasm is very rare. There wasn't really any tests as such as they had to take me on face value and what my symptoms were. I tried tablets at first but they didn't work so went on to have Botox injections. But to be honest they didn't really work for me either. The side effects for me was my eye dropped and also the left side of my mouth. That made me even more self conscious.

The only option now is the operation, which I've been told is the only cure. The down side to the op is that there is a 7% chance of losing my hearing or paralysis on the left side of my face. I have an appointment at the end of this month with Neurosurgery so fingers crossed I can have the operation.

BlanketTime1 profile image
BlanketTime1

because of the side effects of medications and how they don't take away all of the symptoms, I would try botox. it's also possible a combo of meds and botox will work for you. good luck and stay strong.

Katiex profile image
Katiex

Thank you! Yes I will see if medication works, hopefully it works if not I’ll have to try the Botox.

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