botox injections for blepharaspasm

[cherrybrandy]

Hi everyone ive been now given a date to go to botox clinic inside eye dept for injections to stop blepharaspasm.I would like to know if anyone else on these boards suffers from this type of ailment in relation to blepharitis which ive also got, and if anyone has linked there sinus as being a main contributor to there eye troubles..thanks..take care all.cb.

[Essex man]

Hi - I have blepharospasm and this developed after suffering blepharitis for several years. Only affects one eye. Drops don't seem to do much good. Does not cause a problem in the early morning unless I walk out or drive. One specialist diagnosed the blepharospasm and referred me to a Harley St specialist (a top Moorfields man) for Botox. He recommended against as there are side effects, it has to be repeated, and he felt it might make the dry eye worse. I'm going to try out moisture chamber specs and have managed to get some samples to try for fit.

[cherrybrandy]

Hi - I have blepharospasm and this developed after suffering blepharitis for several years. Only affects one eye. Drops don't seem to do much good. Does not cause a problem in the early morning unless I walk out or drive. One specialist diagnosed the blepharospasm and referred me to a Harley St specialist (a top Moorfields man) for Botox. He recommended against as there are side effects, it has to be repeated, and he felt it might make the dry eye worse. I'm going to try out moisture chamber specs and have managed to get some samples to try for fit.
Hi im having botox next month and have been told the risks outweigh the benefits..do your eyes go into spasms like mine..Id be interested to hear..regards.cb

[Essex man]

If I'm out in the open - or driving - my right eye will clamp shut and it takes an effort to open it. Nothing seems to help - drops - eyelid cleaning routines - hot compresses. Keeping the eye open causes severe irritation and it spasms shut again if I don't concentrate. It seems to blink closed but "sticks" shut. Sometimes happens when I'm watching TV but rarely when computering. Not sure if the symptoms are the same as yours. I borrowed a pair of Panoptx and had a brief trial outdoors and was encouraged enough to order a prescription pair. The benefit seemed to stem from cutting out the above and side light and I assume by reducing evaporation. I have had blepharitis for a long time but the eye closing has only been a major problewm in the last 3 years.

[cherrybrandy]

hello well im in on the 5th of july for my first treatment of botox and ive all my hopes pinned on this ive got it in both eyes and like youself i cant stand light of any sort i wear reactolight glasses all the time..ive also got major sinus problems resulting in extreme pain bahind left eye earache etc and have waited over a year to get a diagnosis for this surgery soon i hope..how do you cope with everyday life with this? im finding it intolerable..would you not consider botox? i would like to hear all about your symptoms as i feel alone in this constant battle..regards..cb

[Essex man]

I don't think my problem is a bad as yours. I do have difficulty out walking and have tripped a few times as my right eye clamps shut and then I find my left eye opening narrowing as I squint - also bump into people occasionally. I manage driving OK though - I think the driving is improved through a concious need to double check mirrors! I wear glasses and on my sunglasses I have taped some rolled up "Duck tape" inside the glass to protect the right eye from wind at the side. Seems to help so that's why I'm going to give goggle style specs a go. It may be imaginary, but I sometimes feel that relaxing the back of my neck and my jaw allows me to overcome the spasm. I do have a lid hygeine routine and use standard drops. I've had steroid drops in the past with no apparent benefit to the irritation. Find is a problem though - I did even go to the lengths of taping my eyebrow up with elastoplast to stop the shuteye !!
Good luck with your treatment - look forward to a report of your experience. Ian GC

[cherrybrandy]

Hi thanks for reply do you sr isit away now and just the spasms..I was figuring that if it is the blepharitis that causes the spasms if bleph was cured spasms would stop?just reaching out for any grain of hope before my botox..il keep you informed what happens next..regards..cb

[Essex man]

Still have blepharitis which does trigger the spasm. Sunlight is a big problem but I get spasms in gloomy overcast weather as well. With concentration I can control the spasm by relaxing my jaw and neck at the same time as either frowning or manipulating my forehead. Sounds a bit weird, but the spasm is affecting muscles in one side of my face and the jaw relaxing seems to transmit to the other muscles controlling eye closure. Do you have any "get arounds" like that?

[cherrybrandy]

Hello essexman i was pleased with your prompt response..since reading your post ive been trying today to keep muscles of jaw and face relaxed.but with the constant left eye pain , you know ive got bleph but not with the obvious signs of it, which is why i was puzzled when the eye specialist said i had it back in dec i can see the blocked glands after a warm compress there such a pain arent they?lots of little hard lumps on eyelid..I was diagnosed with hemifacial spasm at the ent dept..ive also got bad sinus probs and am waiting....waiting...lol...for op date.my lips twitch a lot nose and left side of face so puzzling as it doesnt all happen at same time..question to you is how do you manage in everyday life with this as im totally disabled and embarassed with it.partner packed me in cos of blepharaspasm as it ruined my looks he said..am very sad..will keep you informed of what happens on july 5th..i get my first shots then..good luckk.cb.anyother tips in the meantime would be helpful..

[Amy09]

cherrybrandy, even though i do not have the same eye problems as you i had botox injections for my eyes as well. i didn't notice any major improvement after recieving the injections although my doctor said that some do well with it.... if anything though, it did decrease the swelling in my eyelids a little bit. the first few days after i had the injections my eyes felt a little dryer than normal like i maybe couldn't close my eyelids all the way, but this went away really quickly. good luck with the botox and if you have anymore questions just ask!

[Essex man]

Sounds like your prob is more severe than I experience.
AFAIK botox is the standard treatment for blepharospasm so I guess mine is not severe enough for the specialist to recommend it for me.
It's embarrassing for me socially as it kicks in when I'm in a group of people. Pity you have not had more understanding as it's a very difficult and disabling problem.
My blepharitis is being controlled currently by eyelid hygeine and Systane preservative free vials as the standard (very cheap) over the counter drops recommended by NHS GPs - hypromellose - contains a preservative that is not good to use long term. I have found a baseball hat helps outdoors - keeps the "above the eye" light away.
I get my prescription moisture chamber specs soon and will report progress. (Just realised my right eye is closed as I type this!!).
Ian

[cherrybrandy]

To let you know il report back as soon as ive had shots..went to see ent yesterday and he said eye clampings as i call them may be caused bymy chronic sinus inflammation of which im booked in for a septoplasty and fess procedure..yuk..take care..ps..how do you keep your spirits up with all this? for me im truly devastated by it all..bye.cb

[Essex man]

Can be very depressing but, as mentioned, my blepharospasm does not sound as severe - I'm driving to the West Country tomorrow which I'm not looking forward to - your description of clamping sounds right to me - but I have no sinus trouble and the spasm appears to have been set off by MGD. I see clients in my business and now make a point of explaining to them when we meet that I have a severe eye problem which seems to take the social difficulty away. Ian

[Danny_]

Still have blepharitis which does trigger the spasm. Sunlight is a big problem but I get spasms in gloomy overcast weather as well. With concentration I can control the spasm by relaxing my jaw and neck at the same time as either frowning or manipulating my forehead. Sounds a bit weird, but the spasm is affecting muscles in one side of my face and the jaw relaxing seems to transmit to the other muscles controlling eye closure. Do you have any "get arounds" like that?

Does your jaw click when you open it?

[Christina]

Hi I am new to the site.

I have Blepharaspasm but have never had Blepharitis. I have had botox injections every few months for appx 4 years. Botox can be hit and miss as it takes a while to work out which doseage works. In fact I had my last injections yesterday. It is interesting to read that you have developed Blepharaspasm after having Blepharitis as my young daughter does suffer with Blepharitis and I really hope it does not progress. Anyone know anything about hereditory links?

[Essex man]

Re blepharospasm - you might be interested to read this report about coffee - presumably the industrial strength Italian type - not Starbucks! I see they could not find enough decaff drinkers in Italy - surprise surprise.

http://news.bbc.co.uk/1/hi/health/6757825.stm

[Essex man]

Hi I am new to the site.

I have Blepharaspasm but have never had Blepharitis. I have had botox injections every few months for appx 4 years. Botox can be hit and miss as it takes a while to work out which doseage works. In fact I had my last injections yesterday. It is interesting to read that you have developed Blepharaspasm after having Blepharitis as my young daughter does suffer with Blepharitis and I really hope it does not progress. Anyone know anything about hereditory links?

There's are specific blepharospasm/blepharaspasm websites - this one covers your question I think (see to recall my mother had a side of mouth tic):

http://www.blepharospasm.org/genetics.html

Ian

[Christina]

Thank you for the info I had read the article about coffee in the Metro but could not find it anywhere else. The article on genetics is really interesting the first I have seen that implies this. Any other article you discover would be pleased to hear about

[Essex man]

Thank you for the info I had read the article about coffee in the Metro but could not find it anywhere else. The article on genetics is really interesting the first I have seen that implies this. Any other article you discover would be pleased to hear about

This is by the same researcher:

http://www.neurotoxininstitute.com/chapter_blepharospasm.asp

[Barbara Kaplan]

Hi.

I've had a really miserable 9 months and right now have some relief. I was diagnosed with dry eye. Did the restasis, tried Dr. Holly's drops for a while, did all sorts of other drops. Also was diagnosed with blepharitis. Was treated with Lotemax then with Tobradex. After all that I started having blepharospasms which got worse and worse. It's amazing I did not drive off the road. I was bumping into things and scared the heck out of my husband by tripping and falling a little ways into a ravine while we were out hiking.

Finally one eye doctor actually got to see my blepharospasms in action and sent me to an eye surgeon. I do have dry eyes (scored 1 and 4 on the Schirmer). He temporarily cautorized my lower tear ducts. (Plugs kept falling out.) On my next visit he did the Botox injections and lo and behold I CAN SEE!!! I am not tripping over things. I am not dangerous on the road. I can play tennis and I am not embarrassing myself with weird expressions and having to explain to everyone I meet what is wrong with my eye. Amazingly my eyes do not feel dry and are rarely uncomfortable. I'm using drops two or three times a day. Sometimes I feel the spasm fighting to overcome the Botox but right now the BTX is winning.

I have been reading on this blog that botox can have its downside and I am concerned. I am also concerned about long term usage of this stuff and what blepharospasm will really mean to my life going forward. But for the moment I have blessed relief.

[Essex man]

I have had 2 botulin toxin sessions and due another in November. The first was pretty successful, but the second set of shots has not controlled the spasm quite as well - the surgeon decided to miss out one of the injection sites last time so that may be the reason. In the meantime Moorfield London Eye Hospital operated to remove loose skin above my eyes (but below my eyebrows) and did a brow-lift at the same time. Both eyes were done at the same time with the "top" consultant on one eye and an American surgeon on the other.
Not sure about the op but I guess it has helped a bit - it is intended to improve my field of view when my eyes spasm, but I think the botox is the real solution to contol of symptoms - I don't think you can cure the problem.

I use new drops available in the UK called Hycosan by Bausch and Lomb manufactured by Eusan in Germany. This has the advantage of being preservative free but in a dispenser (lasts for 12 weeks after opening) which delivers a single drop with a push button. My consultant called them "the Holy Grail of sterile drops!

[Helena]

Hi everyone ive been now given a date to go to botox clinic inside eye dept for injections to stop blepharaspasm.I would like to know if anyone else on these boards suffers from this type of ailment in relation to blepharitis which ive also got, and if anyone has linked there sinus as being a main contributor to there eye troubles..thanks..take care all.cb.

Yes- I know that my sinus problems are causing severe dry eye even tho 6 doctors have said it isn't possible. Pls let me know what your sinus symptoms are like.