Blepharospasm/Virus
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Posted by: ClaireW ®

01/14/2003, 13:50:42
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I had an interesting conversation with my GP this morning....

Claire " have you had any patients with BVlepharospasm before"

Doc. " several"

Claire "how were they treated"

Doc " oh...it just went away..their blepharospasm was generally viral

I've never had to refer anyone for Botox..We don't refer for Botox here." (it was my neuro who referred Me for Botox)

Now am I missing something here?

I hasten to add she is a lovely lady doctor and I am going to send her some info on BEB forthwith!

Greetings

Claire







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Re: Blepharospasm/Virus
Re: Blepharospasm/Virus -- ClaireW Top of Thread Archive
Posted by: Jackie Dewey ®

01/14/2003, 14:17:10
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With professionals so uninformed is it any wonder that it took months if not years for many of us to receive a diagnosis?






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Re: Blepharospasm/Virus/Piracetam
Re: Blepharospasm/Virus -- ClaireW Top of Thread Archive
Posted by: Delaine Inman ®

01/15/2003, 10:47:22
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Yes I've given out lots of literature to doctors and put many on the mailing list to get the newsletter. We really don't know what causes BEB and there are probably multiple causes. Burton Goldberg the managing editor of Alernative Medicine Magazine and the a book called Alternative Medicine responded to an email I sent thanking him for the article on Cosmetic Botox in Jan/Feb magazine. The article went into some detail about the medical uses for Botox and about Botox itself. It also suggested some things besides Botox for preventing wrinkles. Anyway, he emailed me that he had called a doctor friend of his and told him about my BEB to see if he had any ideas for me to try. The Dr. is Deitrich Klinghart MD Ph.D. who is president of the Americal Neural Therapy Academy. He has a web page www.neuraltherapy.com that I found interesting. I talked with the RN who works for him and she says they have seen some cases where viruses and toxins are the cause of BEB and sucessfully treated them. I'm still looking into it. I got the Piracetam to take with my Klonopin and Benadryl and I'll let you know how it goes for those of you who remember the post from the person who had taken a similar combination with good results.

Delaine in TN, the research rat always trying something until I find what works best for me.

--modified by Delaine Inman at Wed, Jan 15, 2003, 10:50:03






Modified by at Wed, Jan 15, 2003, 10:50:03

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Re: Blepharospasm/Virus/Piracetam
Re: Blepharospasm/Virus -- ClaireW Top of Thread Archive
Posted by: ClaireW ®

01/15/2003, 11:24:29
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Reading Delaines letter made me realise how important it is to differentiate between Blepharospasm and Benign Essential Blepharospasm.

The E in BEB stands for Essential..which means of "unknown origin".

I guess that Blepharospasm that is "viral" has a known cause and therefore isn't "essential". I guess then that this would be more possible to treat!

Hope you understand that!

I would be really interested in seeing how the Piracetam goes...how did you get hold of it Delaine?

Best Wishes,

Claire






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Re: Blepharospasm/Virus/Piracetam
Re: Re: Blepharospasm/Virus/Piracetam -- ClaireW Top of Thread Archive
Posted by: Delaine Inman ®

01/15/2003, 14:13:12
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typed the name on my search engine and found some places out of the country. Got mine from England yesterday from Biogensis. Very reasonable.Each in a professionally sealed packet.






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Re: Blepharospasm/Virus/Piracetam
Re: Re: Blepharospasm/Virus/Piracetam -- Delaine Inman Top of Thread Archive
Posted by: ClaireW ®

01/15/2003, 16:13:05
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Thanks Delaine...I think I may give it a try too...I found Glorias post well worth thinking about too....

Claire






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Re: Blepharospasm/Virus/Piracetam
Re: Re: Blepharospasm/Virus/Piracetam -- ClaireW Top of Thread Archive
Posted by: Delaine Inman ®

01/15/2003, 22:13:41
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Yes, Gloria mentioned several things that I've heard positive results from other people. I'm going to do this other thing first. I'm starting slowly with one Piracetam yesterday and 2 today. It's hard to tell since days are different no matter what sometimes, but I actually felt more alert and my eyes were better today until about an hour ago. It's late and I hadn't had the Piracetam for 5 hours. I'll keep everyone posted. Not going to take close to bedtime since it is suppose to make you more awake. I will take the usual Klonopin and a Benadryl at bedtime.

--modified by Delaine Inman at Wed, Jan 15, 2003, 22:15:47






Modified by at Wed, Jan 15, 2003, 22:15:47

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Re: Blepharospasm/Virus/Piracetam
Re: Re: Blepharospasm/Virus/Piracetam -- Delaine Inman Top of Thread Archive
Posted by: ClaireW ®

01/16/2003, 03:43:28
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Delaine I was trying to find Biogensis as I would like to have a go with the Piracetam....can't...could you post a link please?

Or e-mail me with one!

wolstencroftgc@ntlworld.com

Claire






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Re: Blepharospasm/Virus/Piracetam
Re: Re: Blepharospasm/Virus/Piracetam -- ClaireW Top of Thread Archive
Posted by: Delaine Inman ®

01/16/2003, 10:02:45
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I'll email you. I use Google Search engine and it was listed out to the side beside a long list of sites on Piracetam. Don't want to get in trouble putting it on BB. rustyfox@charter.net if you have a problem or don't get my email.






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Re: Blepharospasm/BEB
Re: Re: Blepharospasm/Virus/Piracetam -- ClaireW Top of Thread Archive
Posted by: Delaine Inman ®

01/16/2003, 10:06:17
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Actually these were people who had been diagnoses with BEB and taking Botox and other things that weren't helping enough for them or who like me just would like to find something different that worked better and get to the cause and not just treat the symptoms.






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Re: Blepharospasm/Virus/Piracetam
Re: Re: Blepharospasm/Virus/Piracetam -- Delaine Inman Top of Thread Archive
Posted by: Ann Doyle ®

01/15/2003, 16:51:16
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I love it Delaine that you are our guinie pig. I want someone to try it first. I'm so glad you are always so willing. I'm just too cheap and lazy. I'm sure you will keep us posted. Ann Doyle






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