Alternatives


Posted by Andrew Nagle , Mar 15,2002,05:44   Archive
Hi all,
I have not posted for a while but have been following threads daily.
I was diagnosed BEB last September and have had three courses of Botox injections. Although the symptoms are not as severe I am disappointed with the results and side effects ( droopy eyelids, headaches and some spasms ).
Has anyone experience of alternative treatments such as acupuncture and hypnosis as I am considering these.
Any feedback would be welcome.

Stay cool
Andrew in Sheffield, England




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Re: Alternatives/Andrew

Re : Alternatives --- Andrew Nagle
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 15,2002,05:51 Top of Thread Archive
Andrew, if you are having constant droopiness, you need to feedback to your doctor abou this so that maybe he can adjust your injection sites and dosages. Others will hopefully reply on the whether these alternative treatments have helped them.



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Re: Alternatives

Re : Alternatives --- Andrew Nagle
Posted by Pippa , Mar 15,2002,07:38 Top of Thread Archive
Hello everybody! I was diagnosed as having Blepharospasm with associated dry eyes in December 2001. So I am new to all this, having never heard of it before. This site is going to be a great help and comfort.
Symptoms starteded last May and I thought I had an allergy! When did yours start Andrew?
While waiting for the Botox injections I happened to mention to a friend who works in a homeopathic clinic, that I was surprised that I had no spasms while I was on our boat sailing. OrI should say motoring, as it was calm flat weather but we were still moving, and so I expected spasms constantly as I have them while walking outside. So she spoke to a homeopathic doctor who suggested trying Bromium as a homeopathic remedy for people who are better on the water, ie at sea. It was emphasised to me however that usually a holistic assessment was required and this was just a suggestion to try meanwhile. So, having nothing to lose I tried it for 10 days but it had effect for me. However apparently this homeopathic doctor, in Lancashire, England has had successes with other beb patients. So if after trying all the conventional treatments I am still not happy I will definitely give homeopathy a try.

Pippa, watching a buzzard just nowfly high in circles above me here in the Highlands, and grateful that I CAN see it!




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Re: Alternatives

Re : Re: Alternatives --- Pippa
Posted by Sally - in - Idaho , Mar 15,2002,10:43 Top of Thread Archive
Hi Pippa (what an unusual name ... nickname?) Welcome to the BEB bulletin board. It is so romantic to be "hearing" from someone in the Highlands.

Thank you for sharing your story with us. Please continue to share as much as you feel comfortable doing and drop in often. We can be serious when need be, but also have fun to lighten up our moods.

Sally in North Idaho where it is snowing again and we're supposed to get two inches.




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Re: Alternatives

Re : Re: Alternatives --- Pippa
Posted by June in Toronto (June Floyd,June in Toronto), Mar 15,2002,11:41 Top of Thread Archive
Welcome to the bb Pippa, sorry you have this disease, but sure you will find out a lot here and make new friends. I went to a homeopathic doctor a few years ago and tried a couple of treatments - one really upset me and the other one didn't work at all. But we are all different, so good luck to you and let us know what you try and how you are doing. I was in Inverness 2 year's ago - beautiful - we did a small tour of Scotland before returning to Bath to visit my family there. I was born in London.
Best wishes
June in TOronto (beb/meige)



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Re: Alternatives

Re : Re: Alternatives --- Pippa
Posted by Pippa , Mar 15,2002,16:26 Top of Thread Archive
Thanks Sally and June. That was a nice welcome!



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Re: Alternatives/Pippa

Re : Re: Alternatives --- Pippa
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 16,2002,06:55 Top of Thread Archive
Do you read Rosamunde Pilcher's great novels? Half of the places you mention are in her books. Also ocean currents are supposed to alleviate some of the symptoms of BEB. Have you considered this aspect?



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Re: Alternatives/Pippa

Re : Re: Alternatives/Pippa --- Kathy in Atlanta
Posted by Pippa , Mar 16,2002,09:06 Top of Thread Archive
Yes i have read some of her books. I am into Diana Gabaldon's huge epic books. (of Crosstitch fame)just now and they cover Scotland and America in various time frames. However I find that although I am off work now that i cannot settle for some reason to read for long, (or in fact to do anything sitting down for long.) Reading used to be my way of relaxing. My concentration is not as good as it used to be. I don't tknow if it is my imagination or not. Is this also a side effect? Or am i just wanting to "be doing something" to stop me thinking about Bleph all the time? Is it my way of "coping"?
I wonder how ocean currents can have a good effect on Bleph? (I didn't know that) Do you think it is because the air is damp on the sea and it helps dry eyes?
Diane



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Re: Alternatives/Pippa

Re : Re: Alternatives/Pippa --- Pippa
Posted by June in Toronto (June Floyd,June in Toronto), Mar 16,2002,10:33 Top of Thread Archive
I envy you being able to read books - I can't with beb. I can read short articles but sustained reading is out as my eyes sting and burn so much. On occasion I have to use my reading glasses plus a magnifying glass - what a life:-) Its a matter of beb, all the creams and drops, film (which occurs with aging) and the very beginnings of cataracts.

Some of us get talking books - I get them through the Toronto Library and the Canadian Nat. Institute for the Blind - 3 months supply delivered free at a time. They are good (although not up-to-date books are available (lack of volunteers I'd imagine)), but I can't sit still very long to listen to them. I can clean my kitchen and listen, but not curl up in an armchair with a cup of something and just veg out with a good book. Oh how I remember that!

I would think the wind from the sea and the salt water would be bad for beb - I know the cold wind really hurt my eyes, although wearing glacier glasses help.

June in Toronto (beb/meige) whois going to see Lord of the Dance tonight - hope there are no strobe lights!




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Re: Alternatives/Pippa

Re : Re: Alternatives/Pippa --- June in Toronto
Posted by Kelly Saffell , Mar 16,2002,17:04 Top of Thread Archive
I "read" Books on Tape also. I get them from the Talking Book Program free of charge but they are pretty current. I did fall asleep once though. I only read books to the kids and short articles as well. I don't know if it was coincidence but when we went to Florida the last 2 summers for vacation my eyes were better. I don't know if it was the ocean or if it was simply being away on a family vacation relaxing with no stress.



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Re: Alternatives/Pippa

Re : Re: Alternatives/Pippa --- Pippa
Posted by Sally - in - Idaho , Mar 16,2002,22:59 Top of Thread Archive
I find that my eyes, in fact my whole system, are much better in cool damp weather ... not windy though. My soul longs for the sea. I think I'm Irish or Scottish at heart, and I am part English.

Happy Irish Day to all tomorrow.

Sally in North Idaho




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Re: Alternatives

Re : Re: Alternatives --- Pippa
Posted by Pippa , Mar 15,2002,16:27 Top of Thread Archive
Thanks Sally and June. That was a nice welcome!



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Re: accupunture

Re : Alternatives --- Andrew Nagle
Posted by denise mckew , Mar 15,2002,09:00 Top of Thread Archive
Andrew,

I have accupunture about once a week. Origionally it was for my chronic pain condition, but it does seem to help w/ BEB, as it settles me down. We work on keeping energy balanced and she has been able to slow down the spasms by using points on my face. It's not a cure, but anything that helps seems worth it to me.
I also just started with polarity massages. I have had two so far. I love it. I feel so good afterwards even better than after accupunture. So tranquil. It's like all of the stress is gone from my body. My rehab trainer started studying polarity and offered it to me. Since it couldn't hurt I tried it. Again, not a cure - but feeling good for a few days is worth it to me.
Hope this helps you out.
Denise




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Re: accupunture

Re : Re: accupunture --- denise mckew
Posted by Andrew Nagle , Mar 16,2002,13:13 Top of Thread Archive
Thank you Denise and Tricia ( i have a sister called Tricia who lives in Los Angeles ) for the advice. It seems I will have to 'suck it and see'.
I will keep you posted.

Andrew




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Re: Alternatives

Re : Alternatives --- Andrew Nagle
Posted by tricia campbell , Mar 15,2002,12:25 Top of Thread Archive
Hi Andrew. I tried both acupuncture and hypnosis in the nine months before I was diagnosed but niether had any effect, although I still use relaxation techniques taught to me by the hypnotherapist whenever I feel particularly stressed. Every little helps, so it might be worth a try. Nice to hear from someone else in the U.K. Tricia from Coventry.



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Re: Alternatives

Re : Alternatives --- Andrew Nagle
Posted by Priscilla R , Mar 16,2002,19:43 Top of Thread Archive
Hi Andrew,
I tried acupuncture but did not get any results from it. What I did get results from was the vitamins I was taking. I haven't had botox since last August. I consider myself pretty lucky. My spasms aren't so bad anymore.
Priscilla




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Re: Alternatives

Re : Re: Alternatives --- Priscilla R
Posted by Pippa , Mar 17,2002,03:07 Top of Thread Archive
What vitamins are you taking? And what dosages? Do you really think that is helping your spasms? (No matter though what it is...I am glad for you that you are better!)
I was told by a young girl who is into "eating for health" etc that vitamin B6 was good for spasms. Is this one of the vitamins you take?



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Re: Alternatives

Re : Re: Alternatives --- Pippa
Posted by Priscilla R , Mar 17,2002,15:12 Top of Thread Archive
Pippa,
I take 100 mg b6,500mcg b12,a multivitamin,calcium-magnesium complex
500mg/300mg,magnesium potassium asparte 600mg/198mg.
I have been taking these for 1 1/2 yrs and i have done really well.
I'm not completely healed but I can keep my eyes open. i guess my body
was just depleted of vitamins. I really don't know. I was taking all these vitamins twice a day but i have cut done to once a day.
Priscilla



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