Blepharospasm Bulletin Board

Posted by: Rio
03/11/2004, 17:02:26

Hello! My name is Rio Cruz and I'm a newby to the list. June asked that I send "My Story" as way of introduction. Sooooo...

I have been dealing with Sequential Dystonia (Blepharospasm and Laryngeal Adductor Dystonia [I think] ) for about three years. It came on suddenly, with no warning, subtle at first, and has slowly been getting worse. At first I thought it was one of the dry eye syndromes because my eyes felt dry and the eyelids always wanted to close down. So I went to an ophthalmologist who gave me some eye drops and put in tear duct plugs...but it didn't help.

During this time I also contacted one of the head researchers at the Schepens Eye Research Institute at Harvard and learned that a new drug called Restasis was coming on the market and was a cyclosporine -based solution to treat my supposed condition. When it finally became available, I got it but it had absolutely no effect.

About 9 months after onset, the muscles around my eyes and the internal muscles in my neck, especially those around my larynx, began to involuntarily contract spasmodically and made it difficult at times to speak or eat or swallow correctly. However, when this would happen, I noticed that my eyes were able to remain open instead of always wanting to shut down. It seems to me that the seizures in my neck were taking the spasmodic work away from my eyes so that I could continue seeing. I know this probably sounds funny, but that seems to be the way it works for me. Of course, sometimes both my eyes and neck/throat are doing their dance at the same time so it can be annoying and make it difficult to do normal things.

I contacted the guy at Harvard again and asked, "I would like to know which--if any--of the dry eye syndromes also progress to eventually include the muscles surrounding the eyes and even extending to the throat muscles so that they seem to contract in a sort of compulsive way? Not like normal blinking, but stronger and more spasmodic. This impulse can be overcome with complete relaxation such as during sleep or also during intense, focused concentration when working on some mechanical project or other. The information on the Shepens website didn't mention this. Any hints?"

He wrote back and said, "No, he had never heard of this phenomenon in his dry eye research."

So then my wife got the brilliant idea of typing in all the different symptoms for a Google search and came up with Dystonia as the culprit. Bingo! On one of the Dystonia websites it even said, " Unfortunately, dystonia is frequently misdiagnosed as other ailments such as: stress, stiff neck, a psychogenic disorder, arthritis, dry eye, tic, tennis elbow ."

Being able to put a name to it really helped and changed everything. I'm a Veteran so I made an appointment with a neurologist at our Veteran's Clinic. He now has me on a combination of 5 mgs of Trihexyphidyl and .5 mgs of Clonazepam four times a day. These meds do seem to help a bit by calming the "tiger" down and especially by allowing me to sleep really well. When I use them in conjunction with my mechanical therapies, they work better than just by themselves. As a friend said, "It's a squirrelly little sucker, ain't it?" However, to tell the truth, the meds really are "ify." They seem to sort of work and not work. It just depends on a lot of things and there doesn't seem to be much of a pattern to any of it.

I learned early on that there were certain activities I did that caused the seizure/spasms to increase, and other activities that helped calm them down. The things that rile them up are:
1. Reading
2. Writing
3. Driving or riding in a car.
4. Exercise
5. Walking into a store or other building (not home).
6. Listening to someone talk...especially on the telephone.
7. Standing in a line.
8. Watching TV or a movie.

Things that help calm everything down:

1. Painting (I'm an artist so this is really good news!) or anything that requires close eye/hand coordination.
2. Handyman activities like building things or fixing things.
3. Working on a wood lathe is especially helpful. But doing metal work on the same lathe increases the seizures. Go figure.
4. Listening to certain kinds of music with earphones on.
5. Humming or singing along with the music.
6. Sleep
7. Pulling weeds

So, anyway, that's my story. My own personal variation on this most "Squirrelly" condition. One interesting aspect of it is that I'm a Hospice volunteer and the dystonia was making it harder and harder to be effective while listening to people or just sitting with them...along with driving to the visit etc. My condition was causing consternation for my clients who were dying. Not good! But I had noticed with all my hospice clients that they always needed something fixed or installed or looked at or....whatever. So I told my supervisor that I would probably have to stop doing hospice work and the reasons for it. And as I was talking to her it occurred to me that what hospice needed was an on-call handy man to help deal with the physical aspects of people's lives while they were still in the physical world. So I asked if this would be a possibility and she thot it a great idea so now I am still doing hospice work as the "Official Hospice Handyman." It works out great. I get the benefit of the therapy for my dystonia and the patients get their stuff fixed. Win, win. So there are ways of turning the 'affliction" into something positive. There just aren't enough of them!!!!!

I do have a question for the group. I'm thinking I want to go off the meds because they do not seem to be very effective. Have any of you ever been on Trihexyphidyl and Clonazepam? How did you go off them, if you did? I could ask my doctor but he's not real available.

Any ideas or suggestions are very welcome!


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Replies to this message

Re: Meds
Re: Meds -- Rio Top of thread Archive
Posted by: Ann Doyle
03/11/2004, 18:54:05

How neat that the Hospice thing worked out so well. You are one in a million.
I used Clonazepam and it worked really well for 2 1/2 months, then the magic wore off and it only reduced the spasms a little bit and then not at all. I get Botox shots for my eyes every 10 weeks. Just got them today. It takes awhile for them to kick in. Sometimes it works by the next morning and sometimes it takes a couple of days. With some people it takes 2 or 3 weeks. A Movement Disorder Specialist gives me my Botox shots.
Isn't it a relief to give your disorder a name. I kept going to Drs. and they kept prescribing tranquilizers--"It was all in my head and I needed to get a life." I finally saw my GP , after going to all kinds of specialist. I was spasaming at the time and he took one look at me and said;"You have Blepharospasm with Meige syndrome." He knew because he had another patient who happened to have it. She was the one who told me about the Specialist.
So glad you found us. Ann Doyle

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Re: Botox/Ann
Re: Re: Meds -- Ann Doyle Top of thread Archive
Posted by: June in Toronto
03/12/2004, 05:15:17

I hope the botox injections you received today work extra well this time Ann. Best wishes

June in Toronto

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Re: Meds
Re: Meds -- Rio Top of thread Archive
Posted by: Mary, upstate NY
03/11/2004, 20:00:50

Welcome to the club, Rio, so to speak! You will find lots of understanding, and maybe some help on this bulletin board. You don't mention Botox -- have you tried that? I go to a "knowledgable" neurologist every 8 weeks and get shots (for Blepharospasm) and have been taking .5 mg of Clonazepam 3X a day(generic Klonopin) for several years, which I believe helps me. I previously tried other meds (mostly during the 8 years that I was looking for a diagnosis) but the Clonazepam seems to be the ticket. I have no side effects and it works. It's addictive, but so is coffee! Have you contacted the BEBRF for information? (it's clickable at the top of the main page). Sorry to hear of your condition, and glad that you finally found a diagnosis, and the BB. Your lists of "what riles and what calms" sounds familiar, too. Good luck on your treatment, and thank you for being a great hospice volunteer!

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Re: Meds
Re: Re: Meds -- Mary, upstate NY Top of thread Archive
Posted by: Rio
03/12/2004, 17:53:55

Hi Mary-- Thank you for your kind email and for the info. No, I haven't tried Botox yet. Most of the seizures are in my throat at this point and I understand it is pretty difficult to get to that area with the injections. Plus, the only medical service I have available is with the VA. But I will see if they offer Botox and what their program is.

Yes, I have contacted BEBRF and have the info they sent.

Thanks again for your email!


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Re: Dystonia in Throat
Re: Re: Meds -- Rio Top of thread Archive
Posted by: June in Toronto
03/13/2004, 02:50:30

Rio, you might try posting/looking at the Spasmodic Dysphonia bulletin board if you haven't already. They all have problems with their speaking and throat and often discuss the injection procdure (some say its not so bad). You can access it at the bottom of this bb. Cheers

June in Toronto

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Re: Dystonia in Throat
Re: Re: Dystonia in Throat -- June in Toronto Top of thread Archive
Posted by: Rio
03/13/2004, 21:58:16

Thanks June! I'll give them a look.


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Re: Meds -- Rio Top of thread Archive
Posted by: June in Toronto
03/12/2004, 05:13:46

Hi Rio,

I'm glad you took me up on my suggestion to post your story on this beb bb - welcome. Your post will be an inspiration to many of us - you have dystonia problems but have found ways to keep going and enjoy life in spite. Becoming a handyman at the hospice, instead of just listening to the folk there (and finding your eyes close like a lot of us do when not talking ourselves) is a great compromise and very welcome I'm sure!

I diagnosed my own beb/meig condition 9 years ago (read about it in a women's magazine whilst vacationing in the U.K.) and was happy to put a name to it, as I'd tried to find out for 2 years with various doctors. I was put on Clonazapam at one point (among other meds) but didn't find it helped, as none of them did. I would suggest you come off any medication VERY, VERY, SLOWLY - I'm sure you had to build up slowly to the med and its the same coming off it. I now receive 90 units of Botox every 3-5 months and it works quite well for me -due for my next set on Wednesday (St.Patrick's Day so I should wear green!). I had to leave my position at a university as I could no longer commute to work or read what I was supposed to. As I was 55 years young then it wasn't as drastic a decision as some younger people having to leave. I still can't look at a moving computer screen, but actually read my first big-print book (first book in 9 years) a couple of months ago (it was great to be able to do so again).

A lot of us have dry eyes along with the beb - I'm sure having botox injections adds to this effect. I use a nightime routine of placing a fine line of pure white petroleum jelly along the lash lines (upper and lower), then a nightime cream in the eyes, covering it all with plastic wrap and then a mask (blind) - pure relief after a day of trying to keep them open and see. During the day I use LOTS of preservative-free drops and gels (365 days/year). It all helps, along with humidifiers in the home.

I welcome you again to our group and thank you for sharing your story. I hope some of the guys will post back to you as well as the gals. Best wishes.

June in Toronto who first `met' Rio via the Dystonia D-mail newsletter.

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