Botox today / education


Posted by MaryNY (Mary,MaryNY), Mar 07,2001,21:32   Archive
June - How did your shots go? I had mine today, too. I tried the Emla cream again, a little heavier, and I think it helped some. The best thing that happened was.....I go to teaching hospital in Rochester, NY, to a wonderful neurologist. He usually has students observing ( with my permission), but HE gives the shots! He flatters me by calling me his "teaching assistant", because I am usually telling the whole story to a new student each time. Today, there was another one - this was a 2-3 yr. medical student who knew nothing about BEB, and spent half an hour asking me, very interested, and I ended up giving him my last brochure. Also, I took my new FL-41 tinted glasses with me to show my doctor. He had never seen or heard of them. He said he treats hundreds of patients with dystonia, many with BEB, and wanted me to give him the address of Knighton Optical, so he could find out more and reccommend them to other people. All in all, it was a good experience. And I even got to stop at a quilt shop on the way home!

Mary in NY, walking thru 14" of snow.




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Re: Botox today / education

Re : Botox today / education --- MaryNY
Posted by June in Toronto (June Floyd,June in Toronto), Mar 08,2001,03:58 Top of Thread Archive
Hi Mary, you certainly do have a good chance of educating people when you get your botox injections - that's great. I'm glad the emla cream helped you some and made the whole process easier.

My injections went ok - I used something called "Rescue Remedy" by Bach Flower Remedies in the U.K. (distributed by a company in British Columbia) - to calm me during the day. Its just a potion of certain flowers and you put it in water and sip at it during the day. I believe it helps me a lot - then all I do is just hit the arm of the chair a bit when the neuro is injecting!! I got a bruise even while in the chair and bled a lot - even though I'd stopped any blood thinners a week before. The neuro said vitamin E was not a blood thinner - I thought it was as I had read that on this bb sometime ago.

I educated my neuro in a different way - told him about Lynn Johnston coming to town and doing a benefit for Dystonia and also about the school curriculum on Dystonia. He was impressed, I think, that our support group was doing all this.

For me the next 3-4 weeks are going to be difficult - I usually have this kind of after-effects of the injections - how about you?

Thanks for asking. Enjoy your snow!

June in Toronto, where yesterday was a beautiful sunny day and I walked for a while after having my injections - even the snow was melting.




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Re:Vitamin E

Re : Re: Botox today / education --- June in Toronto
Posted by Shirley-Arkansas-USA , Mar 08,2001,20:05 Top of Thread Archive
Hi June, glad that your injections went well.
In my drug handbook, it says that vitamin E should not be used concurrently with anticoagulants or blood thinners as it has a cumulative effect and may cause bleeding.
I know that I heard recently or within the past 6 months that large doses of Vitamin E were thought to have caused strokes or bleeding in the brain. This might also have been in combination with Aspirin or other prescription anticoagulants. Vitamin E in moderate doses by itself probably wouldn't cause a problem. I stopped my extra vitamin E months ago when I heard the report of the study that had been done. I think that I heard it on a morning news show.

Shirley




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Re: Re:Vitamin E

Re : Re:Vitamin E --- Shirley-Arkansas-USA
Posted by MaryNY (Mary,MaryNY), Mar 08,2001,21:50 Top of Thread Archive
Geez, Shirley. I've been so proud of myself for taking 400 units of Vitamin E every day for several years, just as my GP told me to do. Now should I start worrying??? Nahh - it's just another pill ! Mary



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Re: Re:Vitamin E

Re : Re: Re:Vitamin E --- MaryNY
Posted by Shirley-Arkansas-USA , Mar 09,2001,02:15 Top of Thread Archive
Mary, don't stop it on my account. I take Klonopin and you know that can mess up one's memory. My husband remembers the same report of the study that was done but neither of us remember the specifics. We both stopped our extra "E", though. I take a handfull of other stuff, though, like Billberry, Calcium and Magnesium supplement, Grape seed extract, Borage oil, multivitamin, fish oil extract, etc, You're right, it is just another pill. I wonder sometimes about the handfull of stuff that I do take along with my prescription medication.
We all just keep looking and searching.


Shirley in AR.




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Re: Re:Vitamin E

Re : Re: Re:Vitamin E --- MaryNY
Posted by June in Toronto (June Floyd,June in Toronto), Mar 09,2001,04:27 Top of Thread Archive
I understood that 800 units of vitamin E per day was the recommended dose!!!!

June in Toronto




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Re: Re:Vitamin E and other alternative/complementary

Re : Re: Re:Vitamin E --- MaryNY
Posted by Delaine Inman , Mar 09,2001,10:22 Top of Thread Archive
When I worked in Cardiac Rehab we recommended 400(under 40yrs old) to 800(over 40yrs old)units per day. It helps in the normal clotting of blood, improves circulation and the repair of tissue, may help with inflammation of artery walls, speeds up wound healing and decreases scarring when used topically and is a strong antioxidant. It is not used if anti-clotting meds are taken. I noticed if I took 400 units I bruised more easily...I can't take a daily aspirin(which decreases clotting) for same reason. So I back off vitamin E before Botox. Just a fluke with me I guess....My body gets flukey about many things. Just another example of ...each body responds differently. I have tried dozens of supplements, magic potions, multi-market cure alls for BEB and Fibromyalgia. I believe I've even tried the Plus in the beginning. I tried amino acid supplements, Lysine for fever blisters and BEB and FMS. So far over the past 2 years with BEB and 8 with FMS none of them have worked. I've tried acupuncture, massage, energy work of several varities and found them to be relaxing and stress management tools, but not cures or helpful with BEB or FMS. Any thing for stress management is helpful for balance and coping and I'm all for it. But most of the expensive other stuff has not been helpful. Like I've said the Moistur Eye, Spectra 3 Vit/Min/Herb makes me feel better and for the first time since my surgery I am not sleeping with a movie star mask. I can't tell the Lutein/Bilberry is helping so I'm going to stop after I finish this bottle.
Delaine in sunny TN where it will be about 50 today. Buttercups blooming and yes Virginia isn't it wonderful that Spring is on the way.



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Re: Re:Vitamin E and other alternative/complementary

Re : Re: Re:Vitamin E and other alternative/complementary --- Delaine Inman
Posted by Evelyn , Mar 09,2001,18:02 Top of Thread Archive
I took Vit. E several years ago. My Opthamologist told me to stop taking it because it could make the bleeding in my eyes worse.
Evelyn



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Re: Re:Vitamin E and other alternative/complementary

Re : Re: Re:Vitamin E and other alternative/complementary --- Delaine Inman
Posted by kathy , Mar 10,2001,07:03 Top of Thread Archive
delaine, thank you for the piece you wrote for the newsletter. the feelings of pain you described i have been working on now for sometime as far as a description that others who do not have this disorder could relate to and my gosh, was yours ever graphic! and accurate. This is a very real problem and should not be politely swept under the rug.

--modified by kathy at Sat, Mar 10, 2001, 07:04:55




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Re: Re:Vitamin E

Re : Re:Vitamin E --- Shirley-Arkansas-USA
Posted by June in Toronto (June Floyd,June in Toronto), Mar 09,2001,04:30 Top of Thread Archive
Thanks, Shirley, - I just stopped the E for a week before botox - back on it now. Wish more studies could be done to sort this whole mess about vitamins and some more control over them. Perhaps in time!

June in Toronto - where dawn isn't even breking yet!




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Re: Re:Vitamin E

Re : Re: Re:Vitamin E --- June in Toronto
Posted by Joanne Johnson (joanne johnson,Joanne Johnson), Mar 10,2001,10:14 Top of Thread Archive
June, I take 1 Centrum Silver a day, and I think it meets my needs. On the other hand, my sister is on a very expensive Shakeley regiment, taking a handful of vitamins everyday. My belief is that if we eat well balanced meals, we don't need additional suppliments. Having studied herbs at our local tech. school, I am of the opinion that many of the herbs taken long term are not tested well enough in terms of "side affects." In fact, the instructor cautioned us about medicinal herbs, for that very reason.



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Re: Re:Vitamin E

Re : Re: Re:Vitamin E --- Joanne Johnson
Posted by June in Toronto (June Floyd,June in Toronto), Mar 10,2001,15:26 Top of Thread Archive
Joanne, - yet the Naturopath I go to on occasion, (who has 5 years (didn't complete) of medical school, completed vetinary college, and then complete naturopathic college), recommends many vitamins - especially the fish oils, A, Bs, C, E. I really believe he has enough knowledge of herbs/vitamins (he also specializes in Chinese medicines) to know what he is talking about. STILL its a subject that has not been researched enough. But I'd rather take these any day to medical drugs!
Also, sometimes, food is absorbed well enough to complete our daily requirment. An ongoing saga!

June in Toronto




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Re: Re:Vitamin E

Re : Re: Re:Vitamin E --- June in Toronto
Posted by Joanne Johnson (joanne johnson,Joanne Johnson), Mar 11,2001,13:05 Top of Thread Archive
June, the first route I took in terms of treatment was with a chinese doctor, who gave me acupucture, herbs, and minerals. When she could not successfully treat me, she suggested I had a psychiatric problem as the reason. Those treatments came out of my pocket, as insurance does not cover them. I feel that those of us who do have health problems that severely affect us, are often times exploited. A friend of mine recently died of breast cancer, however, in the last 6 months of her life she spent nearly $10,000.00 on "medicine" which she ordered from some person in Mexico. He promised her complete remission. It was sad to watch her being victimized in the last days of her life, when she was the most vulnerable. It takes the worst kind of person to be able to do that, in my opinion.



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Re: Vitamins and Such Like

Re : Re: Re:Vitamin E --- Joanne Johnson
Posted by June in Toronto (June Floyd,June in Toronto), Mar 11,2001,13:22 Top of Thread Archive
Thats so sad about your friend who died of breast cancer - you are right, at such times, people should not be exploited. You may also be right about people, in general, who are sick, being exploited.
I don't feel I have though - as I only buy one product from the naturopath - Bilberry which I know is helping me. The other vitamins I take I buy over-the-counter and decide for myself which ones they will be. I consider myself very lucky to have gone to the naturopath I did - he was recommended - and is an excellent person. He never pushed any drugs (herbs are drugs), or treatments on me and is very compassionate and caring. I believe he is a rare `doctor' indeed. Unfortunately I was his only beb/dystonia patient and he had nobody else to compare my symptoms with. He did know about the disease though (at least a step in the right direction)! I wish others had such a person to see and I would not hesitate to recommend him.

June in Toronto




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Re: Vitamins and Such Like

Re : Re: Vitamins and Such Like --- June in Toronto
Posted by Dan McNellis , Mar 13,2001,08:33 Top of Thread Archive
Joanne,

Glad to hear the bilberry is helping. Maybe I'll give it a shot. I'd rather use something natural as opposed to the lorazepam I now take which helps but leaves me feeling somewhat sedated. How much do you take and how helpful has it been. Did you see improvement right away?

Thanks,

Dan




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Re: Vitamins and Such Like

Re : Re: Vitamins and Such Like --- Dan McNellis
Posted by June in Toronto (June Floyd,June in Toronto), Mar 13,2001,11:45 Top of Thread Archive
Dan, this is June, and I take the Bilberry. It helps me with the light sensitivity involved with beb - I couldn't go to a cinema for 2 years, nor watch tv or use a computer - I can now (although a computer's moving screen still bothers me, i.e. the chat room!). I believe Bilberry helps me. I have tapered it off a few times, thinking it might just be a placebo, but each time the sensitivity increased. I still have light sensitivty but nowhere near the degree I had before taking Bilberry. I buy pure Bilberry from a naturopath, who gets only the best product available, in tincture form - I take 1 tsp 3 times per day, before meals, in a little water.
I hope this information helps.

June in Toronto




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Re: Vitamins and Such Like

Re : Re: Vitamins and Such Like --- June in Toronto
Posted by Dan McNellis , Mar 13,2001,15:25 Top of Thread Archive
June,

Thanks for the info. Light sensitivity isn't really an issue for me, just the spasms. Does the bilberry do anything for that and can you get it at a health food store or do you need to go to a naturopath?

Thanks,

Dan




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Re: Bilberry and Spasms

Re : Re: Vitamins and Such Like --- Dan McNellis
Posted by June in Toronto (June Floyd,June in Toronto), Mar 13,2001,16:42 Top of Thread Archive
Dan, I don't believe bilberry will help with the spasms at all. The naturopath tried me other herbs for spasms and they didn't work either. Yes, you can buy bilberry at a natural health food store and pharmacies - in tincture (alcohol-based) liquid form and small capsules.
If you don't know about bilberry - its been used for thousands of years - more recently during WW2 when it was given, as a preserve on toast to air fighter pilots, so they could recover from the flashes in the sky quickly. Apparently research showed that it worked. I'm positive it works for me. I took it for about 3 months before I tried coming off it (thinking it wasn't working), and then realised it was helping - although only about 75%, which is better than nothing! The better quality of bilberry you buy, obviously, the better results - that's why I buy it from a naturopath who knows `his stuff'.

Best wishes

June in Toronto




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Re: Bilberry and Spasms

Re : Re: Bilberry and Spasms --- June in Toronto
Posted by Dan McNellis , Mar 14,2001,07:21 Top of Thread Archive
Thank you very much June!

Dan




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Re: Botox today / education

Re : Re: Botox today / education --- June in Toronto
Posted by MaryNY (Mary,MaryNY), Mar 08,2001,21:46 Top of Thread Archive
June - Sorry that you (and some others) have a slow time getting the results from yout Botox. Mine seems to start right away. Part of it is psychological, I guess. But if I can stick to my routine of 50 units in each eye every 8 weeks, I'm doing fine. Mary



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Re: Botox today / education/ MARY

Re : Re: Botox today / education --- MaryNY
Posted by June in Toronto (June Floyd,June in Toronto), Mar 09,2001,04:26 Top of Thread Archive
What do you mean, Mary, by "part of it is psychological" - I don't understand?
Glad you have got your injections down to a fine art and they work for you.

June in Toronto - who woke up AGAIN at 4am and can't sleep - darn it!




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Re: Botox today / education/ MARY

Re : Re: Botox today / education/ MARY --- June in Toronto
Posted by MaryNY (Mary,MaryNY), Mar 09,2001,15:53 Top of Thread Archive
June - Yes, that's about it. I just talk to myself and say, it will work.it will work it will work. I can handle the shots because I know it will improve my eyes for a while!



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Re: Botox today / education

Re : Re: Botox today / education --- MaryNY
Posted by Sally - in - Idaho , Mar 09,2001,21:52 Top of Thread Archive
Mary ... That is exactly the schedule and dosage I am on and it seems to work well. I also get results quite quickly and, like you, think it is partly psychological. But it it works, so be it.

Sally




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