Intro - Hemi-facial spasm

[Deirdre]

Hi...I was diagnosed with Hemi-facial spasm about 7 years ago...controlled using anti=epileptic drugs for their antispasmodic effects...carbamazepine and benzodiazepines e.g. baclofen, clonazepam...but eventually I gave in as the spasms worsened, and agreed to 3 monthly tiny doses of Botox...this gave a lot of relief for the first 2 months - thereafter the spasms get worse again and I have a hard job closing my eye. During the latter half of the Botox treatment - during the period when the spasm return, I've been getting infected eyes...and although I can treat that with chloramphenicol drops for 5 days....it's not ideal...so I started to look for more solutions...and here I am! I know the problem is dry eyes...as when I look at the eye there is a small ridge around the iris and it does look dry - in comparison to during the day and on examination then it is wet with no difference in surface between iris and schlera. I've recently been taping my eye shut at night...after putting a drop of viscotears liquid gel in...and that does help...but I find it intrusive and not very pleasant. I've come to terms with having a lopsided grin...the spasms after both eye and mouth...I've also come to terms with the fact that I can only pursue my art during the 2 month window when my symptoms are controlled. My husband is still trying to work out if my expression is caused by his actions or my own!!
I'm now wondering how many people with HFS do also suffer with dry eyes? Are any of you in the same boat?

[Lucy]

Hi Deirdre:

Welcome to the board. Wow, your story is certainly one of mystery! This must be something very difficult to deal with. It sounds like you are doing as well as anyone could expect!

I've been on dry eye boards and Lasik boards for 10 years now and I never remember reading about HFS. I read the article and it's nothing I want to have. Perhaps someone will come in with some more info, or perhaps someone else has it who reads the board.

I have trigeminal neuralgia in my left eye, which is something similar in pain but don't want to compare it to your situation. I am wondering, though, if you have tried the med Lyrica to see if it would help with the pain. Perhaps you might talk to your doc and see what he/she says. I've gotten some relief from the TN pain with Lyrica. Best, Lucy

[Deirdre]

Thanks for the welcome Lucy...I should mention, I only get pain in my eyes when they're infected...or very dry...not otherwise...thank goodness...it would be hard to bear if pain was a daily occurrence.

[Deirdre]

Update

Update...it would appear that the reason I'm getting symptoms of dry eye is because the Botox was either too much or not quite in the right place - giving me a lax lower lid....eyes open 5cm when closed as tight as I can get them,,,,so I have to tape them shut at nigh, after using lacrilube... until it resolves

I didn't get on well with taping top to bottom lengthwise....but the sister in the eye clinic told me to tape it sideways on...which, though not perfect, is more efficient!

[ringo]

Hi Deirdre,

Yes Botox can do that, it can mess with the muscles that close the eyelid..

actually there is a procedure where a very experienced doctor has to find exactly the muscle that regulates the outflow of tears and inject Botox there, and if he manages, then there will be great improvement with the dry eye; however many people have reported the opposite effect, just like in your case: they are unable to close their eyelid.

I was considering this Botox procedure until I heard of the risk involved. Unfortunately I am not aware of any alternative sucessful treatments for spasms, so may be the doctor should try to inject it away from the site where he did before and most probably caused this problem for you?

[Deirdre]

I still think that the benefit of reduced spasms outweighs the risk of a droopy eye or mouth....It has only occurred once in the 10 treatments I've had,,,and I know it's oly temporary now...should resolve althogher in 3 - 6 months as the muscle recovers. I just need to manage the side effects. If I could get a good sleep pattern it wouldn't really bother me at all...but I find the taping of the eye intrusive....and it takes me a while to get to sleep.