Medication: Artan(e)?


Posted by Lyn Patterson , Aug 12,2001,07:03   Archive
Hi Everybody and Shirley (resident guru)

When I first contacted BEBRF they sent me the name of a fellow sufferer in Western Australia - Joan Boladeras. She is not on the Internet - apparently a friend put her in touch. I wrote to her to see if she wanted to get in touch and this afternoon she rang me.

She told me who treated her and to my surprise it was yet another doctor to add to my growing list of doctors using Botox in WA. To think that for 10 years I was deliberately led to believe there was only the one !!!! She was diagnosed in the late 90's . She said Botox did not agree with her as she had injections every month for a year and they didn't last long so her doctor gave up on them. Unfortunately she does not know what dose she was on. It sounds a very strange regime to me and he does not seem to have experimented to find different sites and doses. She said she was now on something that sounded like ARTAN - I looked it up and it is possibly ARTANE. Shirley, are you familiar with this drug? Joan said it worked well for her - when she has bad spasms, she pops a pill and in about 3/4 of an hour she can open her eyes. To complicate matters, she was also diagnised with glaucoma or symptoms of glaucoma. She is 71.

I am going to keep in touch with her - she said she was in touch with one other patient of her present doctor so will ask her to put me in contact with her. I would like to see if I can approach all doctors using Botox and see if they would put me in touch with their patients so that we can exchange experiences perhaps via a Newsletter or something.

Lyn wishing I was not so far away from all the action !!!




Recommend Current pageAuthor Profile
Replies to this message


Re: Medication: Artan(e)?

Re : Medication: Artan(e)? --- Lyn Patterson
Posted by Shelley Chambers , Aug 12,2001,13:31 Top of Thread Archive
Dear Lyn: I have had BEB and Meige for about one year. The first drugs I took were Artane and Valium (yes, regular old Valium)! I took them in order to be able to open my eyes enough to begin the school year (I teach 1st). Well, it sorta worked - I don't really remember much about the 1st quarter of school! I had to stop because the side effects were too much. I had a lot of mouth problem - EXTREMELY dry ( I had to carry a water bottle with me at all times)being the worst. I had drink water while reading stories to the children.

Another member of this group, Mindy, told me about something similar to Artane called Parsitan. Both of us now take this and we order it from Canada because it is not available in the US. This is now the only medication I take (except supplements for dry mouth) and along with Botox every 3 months, I am doing really well. In fact, I almost felt normal this entire summer. It might be a drug you want to check out.
Shelley who must go make lunch for a son who will "starve to death" if I don't.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Medication: Artan(e)?

Re : Re: Medication: Artan(e)? --- Shelley Chambers
Posted by Priscilla R , Aug 12,2001,15:45 Top of Thread Archive
Shelly,
Do you get dry mouth from teh Parsitan?



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Medication: Artan(e)?

Re : Re: Medication: Artan(e)? --- Priscilla R
Posted by Shelley Chambers , Aug 12,2001,19:53 Top of Thread Archive
Yes, I get dry mouth, but not as bad as with Artane.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Medication: Artan(e)?

Re : Re: Medication: Artan(e)? --- Shelley Chambers
Posted by Kelly Saffell , Aug 12,2001,17:27 Top of Thread Archive
I couldn't handle the Artane either. I have never tried Parsitan but currently take very low doses of klonopin. My oldest daughter just started 1st grade last week!

Kelly in Dallas




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Medication: Artan(e)?

Re : Re: Medication: Artan(e)? --- Kelly Saffell
Posted by Shelley Chambers , Aug 12,2001,19:54 Top of Thread Archive
Kelly - I would love to know how your little girl is doing in 1st! I go back two weeks from tomorrow.
Shelley



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: first grade

Re : Re: Medication: Artan(e)? --- Shelley Chambers
Posted by Kelly Saffell , Aug 13,2001,09:07 Top of Thread Archive
So far so good. Kindergarten here is only 3 hours so this is her first year to have recess, buy lunch, etc. She got a GREAT teacher so I am thrilled about that. Academically Morgan is advanced but socially she is right where she needs to be (she didn't turn 6 until May). Last year her K teacher pushed her having her right short stories instead of a sentence in her journal, sending home chapter books (like Frog and Toad, Henry and Mudge) and giving her reading comp sheets. At first she protested because she wanted to finish her work and play but once she got the hang of it she did great. My goal for this year is to keep her challenged without her getting frustrated! Any tips?

Kelly in Dallas




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Medication: Artan(e)?

Re : Medication: Artan(e)? --- Lyn Patterson
Posted by Shirley-Arkansas-USA , Aug 12,2001,20:02 Top of Thread Archive
Hi Lyn, Artane is trihexyphenidyl hydrochloride. It blocks the central cholinergic activity in the basal ganglia. It is used for Blepharospasm and other forms of dystonia and Parkinson's disease. Some people get good results with it. Others have problems with side-effects. I tried it and couldn't tolerate the side-effects. Dry mouth, blurred vision, nausea and constipation and confusion are some of the more common side-effects.
It also has to be used with caution in patients with Glaucoma so your friend would need to be aware of that so that her eye doctor could monitor her glaucoma very carefully.

You said that the botox did not agree with her. Was she maybe getting frozen, reconstituted botox, also? Sorry, just had to ask.

I'm glad that you are finding more doctors that give botox and you are doing a good thing by trying to locate others with BEB and organize some sort of support network. I sure know how important that is. Keep after it. I can tell that you are doing better and I'm glad.

Let us know how things go.

Maybe someone will post that is on Artane. I just know about a lot of ones that tried it and couldn't take it. It messed with my short term memory when I tried it.
Hope this helps a little.

Shirley in AR. more of a mother hen than a guru




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Mother Chook

Re : Re: Medication: Artan(e)? --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho , Aug 13,2001,01:51 Top of Thread Archive
Shirley, I think I'll name you our Mother Chook ... sounds classier than Mother Hen. You are too young to be my mother anything, but sometimes I feel that you are just that when you give me welcome advice. Keep up the good work!!

Sally in North Idaho who had better go to bed.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Mother Chook

Re : Re: Mother Chook --- Sally - in - Idaho
Posted by Shirley-Arkansas-USA , Aug 14,2001,02:18 Top of Thread Archive
Sally,
Mother Chook it shall be. I kind of like that. Heaven knows why.
Might be better as Night Owl. Couldn't sleep so here I am wandering around for awhile until I decide that I can get back to sleep.

Mother Chook from AR.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Mother Chook

Re : Re: Mother Chook --- Shirley-Arkansas-USA
Posted by Lyn Patterson , Aug 14,2001,08:10 Top of Thread Archive
Hi Shirley

Sad news - down to 3 chooks - one passed on yesterday and is buried in the compost.

Lyn




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: The need for more chooks (or chickens) and cake

Re : Re: Mother Chook --- Lyn Patterson
Posted by Shirley-Arkansas-USA , Aug 14,2001,11:32 Top of Thread Archive
Heavens NO! You must get more babies and start a new family of chooks. We need a whole cluster (herd, group, bevvy, flock?) of chooks. We need lots and lots of eggs. Then you can make a lovely angel food cake from scratch. I hope there are others out there that do that besides me. Yes, angel food cake with strawberries poured over it. I do get distracted easily.

Shirley (Mother Chook) in AR.
Sally, stop reading these posts about chickens. They are not doing you a bit of good.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Medication: Artan(e)?

Re : Medication: Artan(e)? --- Lyn Patterson
Posted by Lyn Patterson , Aug 13,2001,08:37 Top of Thread Archive
Thanks everybody and Mother Chook for all your comments re the above. I shall write to Joan and share the information -she is very isolated living on the far south coast miles from anywhere - 10 hours to Perth on the bus.

Lyn still enjoying the relief - how long will it last this time




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Reaching people

Re : Re: Medication: Artan(e)? --- Lyn Patterson
Posted by Shirley-Arkansas-USA , Aug 14,2001,02:30 Top of Thread Archive
Lyn, I hope that your injections last for a long time.
I am so proud of you for trying to reach and help others. You're doing such a good thing. There are so many people out there in your part of the world and mine that don't have anyone to share information with. I can only imagine how alone they must feel.
I found this site right away and it has always been here for me. I send Judy little silent thankyous all the time for starting this bb. I don't know where I would be without it and the knowledge and support that I have gained from it.

Where else would I be called Mother Chook? We've heard that dogs and cats sometimes develop BEB. I wonder if chickens ever do? OK, OK, I've lost it and I just need to go back to bed.

Nite-Morning?




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile