Posted by: Kelly Saffell ®
02/12/2003, 09:40:02
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I have recently had my dosage increased from 100 to 140 units. For me, it has increased the effectiveness enough for me to function better at home and drive a few miles easier. It hasn't made me functional enough to drive distances, read alot, or prevent the eyelid closure/squeezing altogether. The risk to increasing the dose is side effects. Too much botox can cause ptosis(droopy lids), dryness due to nonclosure, and double/blurry vision. At the 100 units, I would be reinjected every 8 weeks and at the 140 I am able to go 10 so I am getting a little more time out of it but not alot. Hope this helps.
Kelly
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Posted by: Kelly Saffell ®
02/12/2003, 18:56:26
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Yep! My Allergan rep came to a support group meeting I held last year and she said they have "approved" up to 75 units per eye for beb now. I talked to my doctor since it has been helping less and less over the years and he said "let's go for it" so we did. I have improved some from the increase.
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Posted by: IRENE SIEGER ®
02/13/2003, 15:35:31
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KELLY
HI THIS IS IRENE HOW ARE DOING. I'VE JUST GOT MY SET OF INJECTIONS BUT I GOT A DROOPY EYE MY LEFT EYE. DO THEY INJECT ON THE MIDDLE EYELIDS AND IF SO HOW MANY INJECTIONS DO YOU USUSALLY GET. I TOLD MY NEUROLOGIST THAT I USUSALLY GET A DROPPY EYE ON MY RIGHT SO SHE DID LESS OF THE BOTOX. AND NOW MY LEFT EYE IS HALF WAY CLOSED. I HOPE IT WEARS OF SO I CAN OP UP MY EYE COMPLETELY. THEY DON'T HURT OF ANYTHING JUST DROPPY. BUT THAN MAYBE I'LL JUST TELL HER NOT TO DO THE MIDDLE EYELIDS DO YOU THINK THAT IS POSSIBLE. AND GET THEM AROUND MY EYES AND FOREHEARD OR THAT CAN'T BE DONE. LET ME KNOW. I WENT TO GET AN EYE EXAM AND MY PRISCRIBTION DIDN'T CHANGE MUCH. FOR THE LONGEST TIME I WASN'T ABLE TO WATCH TV AND I WAS ABLE TO DO IT FOR A SHORT WHILE. I PRAY THAT I'LL HAVE GOOD RESULTS THIS TIME . BECAUSE THE LAST ONES THEY WORE OUT KIND OF QUICK.
TAKE CARE AND GOD BLESS YOU
IRENE FROM MISSION,TX
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Posted by: Kelly Saffell ®
02/14/2003, 09:59:46
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The doctor should NOT be injecting in the middle of the eyelid. That is the muscle that opens the eye. My injections are the inner and outer corners and then the forehead/brow/temple/bridge of nose. The droopiness should wear off in about 4 weeks.
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Posted by: IRENE SIEGER ®
02/14/2003, 12:53:21
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KELLY
THANKS FOR LETTING ME KNOW . I'LL HAVE TO LET HER KNOW NOT TO DO THE MIDDLE OF MY EYE LIDS. THEY ALWAYS DROOP NO MATTER WHAT. SHE DID VERY LITTLE ON MY RIGHT EYE BUT NOW MY LEFT EYE IS DROOPY.
GOD BLESS YOU AND GOOD HEALTH
HAPPY VALENTINE'S DAY TO YOU AND ALL YOUR LOVE ONES.
IRENE
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Posted by: Jackie Dewey ®
02/14/2003, 13:05:12
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It's surprising to me that your neurologist injected the middle of your eyelid. One of the first things my neurologist told me was that it is important to stay away from that area because it is the muscle that opens the eye.
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Posted by: Lori in Maine ®
02/12/2003, 12:24:02
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Hi Denise,
I asked my neurologist this question Monday when I had my second set of injections. My first set was 65 untis in 14 sites. It took 16 days to see the results and my eyes were open for 13 days. Monday, he injected 100 units in hopes it will last longer. His concerns about increasing the dosage or frequency of injections is the possibility of building up a tolerance. He likened it to a bee sting in that you would eventually not a reaction to the bee venom. I will keep you posted. I'm already feeling better, but read below, it may not be the injections.While I'm here, I would like to ask a question. I am receiving physical therapy for muscle spasms on the right side of my neck and shoulder which causes tingling down my arm and numbness in my thumb. During the massage, my eyes opened right up. Following my third treatment yesterday, my eyes have been surprisingly relaxed (not totally, but much better). The questions: Does anyone else have muscle spasms in their neck? Could this be meige (I know this is related to BEB) without the chin or tongue thrusting? Has anyone found that massage has improved the spasms around their eyes? Thanks in advance for any insight you might be able to offer, take care, Lori
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Posted by: denise mckew ®
02/12/2003, 13:04:20
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Lori,I have that problem too on both sides, mine is due to a whiplash injuries. I had this problem before the BEB. I get massages about once a month, and it does help relax my eyes temporarily. A good book to look at is The Trigger Point Therapy Workbook, Chapters 4 & 5 on head, neck and shoulder, upper back pain, it shows how one muscle group can have a domino effect on surrounding muscles. If one is in spasm, the surrounding muscles have to work harder etc. If I can give you one piece of advice on muscle problems, is to do everything you can to keep them relaxed so that they can heal. I think my biggest mistake after my first accident was coming off my muscle relaxant medication, so that I could have a clear head and go back to work. And then forcing myself to work through the pain. My doctors called it work-hardening and thought eventually the muscles would adjust. They didn't. And now I've come full-circle and take muscle relaxants daily to keep my neck and shoulders functioning. Hope this helps.
Take care,
Denise
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Posted by: Lori in Maine ®
02/13/2003, 09:08:21
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Denise,
I had my neck therapy on Tuesday and my eyes were fairly relaxed until last night. This morning they are in spasm again. I'm going to physical therapy again this afternoon and am looking forward to "seeing" if this again opens my eyes. One thing I've learned from everyone on this board is that we find what works for each of us by trial and error. I'll let you know.
Thanks for your input and take care, Lori
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Posted by: Ann Doyle ®
02/17/2003, 17:13:07
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Lori, who gives you the therepy? A chiroractor? Phsical Therapist? or What? I'd like to try it. Ann Doyle
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Posted by: Lynn Yarbrough ®
02/12/2003, 15:39:07
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>During the massage, my eyes opened right up.<I think this may be an effect of adrenalin, which usually is helpful to all of us. I know that when I was driving marginally (i.e. before Botox), having a near-accident always popped my eyes wide open, only to close up a little later. --- Lynn
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Posted by: Lynn Yarbrough ®
02/12/2003, 15:32:51
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There was a television program last week -- Law & Order/CI -- featuring the abuse of Botox -- someone committed a murder of a 'cosmetic' user by OD'ing her with 3000 MU, IIRC. Anyhow, it is certainly possible to overdose on this stuff, and it is lethal if you get too much: more is not always better. The trick is to find the balance between too much and too little, which is why your first dose was almost certainly too little, and why you will probably get at least one slight overdose in the course of your treatment.What is important is to keep communicating with your Dr. and let him work out the details. Tell him what you experience as often as you meet; keep a journal if you can. You are a unique person and the Botox will affect you uniquely. But be public about what you experience. --- Lynn
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Posted by: joanne matuzas ®
02/12/2003, 17:46:05
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Great question, Denise which I have wondered about myself. From my own experience, injection location sites are the most critical for a good result. Once that has been established, the question becomes will more botox in those same locations extend the length of botox effectiveness--seems to me trial and error would be the answer in each individual case. Kelly has increased her botox amount for a longer result--has it produced more undesirable side effects? Would it be worth enduring these side effects for a longer length result? If I am not mistaken, I think June fits into this category. There are different resulting scenarios so each person would have to make his or her own decision. So, there may not be a blanket answer to Denise's question. If more of you have experiences in this regard, your feedback would be
helpful....Joanne M. San Diego, CA
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Posted by: June in Toronto ®
02/12/2003, 18:50:10
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You are correct, Joanne, I do experience perhaps more side effects from the Botox injections and certainly for a longer period of time than some other people. I am now at 90 units but started out around 40 and then had to keep getting booster injections as it wasn't working very well. At 90 units I go anywhere from 3 months to 5 months (usually more like 4-5) but, as I said, I do get bad side effects. I win some and I lose some but everybody is different.June in Toronto where it was one of the coldest days so far but tomorrow is to be worse.
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Posted by: denise mckew ®
02/13/2003, 11:04:08
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June,At 20 and 25 units, I had flu symptoms where I was in bed for a few days with no energy or appetite, then my eyes closed for 4 days, then I had extreme facial pain and spasms on the right side of my face for about 2 days. Then my chronic pain kicked in, which I think was a result of distress my body was under. It was a good two weeks before I was "normal". This is why my dosage was decreased to 17.5 units. Are your side effects like this? Please let me know. And let me know what your doctors say about it. Thanks,
Denise PS - that cold air has moved into Maine. Brrrr-chilll!
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Posted by: June in Toronto ®
02/13/2003, 12:01:01
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Hi Denise,I've had side effects from my Botox injections even when my total units were much, much lower than the 90 units they are currently. The injection sites used are very good - I do not experience any ptosis for example. The side effects vary from injection time to injection time. I've had minimal flu-like symptoms but no loss of appetite or energy, but I've had sinus side effects. Using Nasalcrom (on Shirley's recommendation) for the sinus 2 days before the injections and a day or so after them seems to help. I did not get sinus side effects the last time I was injected even thoughI did not use the Nasalcrom (I forgot). I do experience a lot of eye pain - just like barbed wire keeping my eyes open - this continues for a month or so until I feel `normal' again.
My doctor just documents my reported side effects and suggests that some of them are experiencd by other patients but many do not report any problems at all. I feel I'm more vocal with the doctor and I send him information on anything that I feel is appropriate, i.e., injection needle gauges, suggested cures, etc. He usually takes time to discuss them all with me and I feel very confident in him speciality of BEB and other Dystonias.
I hope this is what you wanted to know. Cheers. June in Toronto
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Posted by: denise mckew ®
02/14/2003, 08:10:43
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June,
Thanks for the info, I also have that "barb-wire feeling, but I was associating that with my trigeminal neuralgia. I describe it as an electrical pins and needles that go through my eyelids. I have another question for you, how did your BEB come about? Did you have a facial injury, was it stress, or did it just show up? Thanks again,
Denise
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Posted by: June in Toronto ®
02/14/2003, 21:50:40
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I can remember my grandfather telling me to "stop blinking" when I was quite a small child, Denise. I was born in the U.K. and wore sunglasses there as a teenager even when it wasn't very sunny, so I believe I was sensitive to light even then. As a young adult I would blink a lot when stressed out but I didn't give it a lot of thought. In 1995 I had 3 female ops and also seemed to have a lot of blinking and eye pulling - I thought it was due to the stress of the ops and working full time in what became, after 18 years, a very stressful position at a university. I went to my doctor who gave me tranquilizers (I threw them back at him!) and then saw an ophthalmologist and a neurologist - neither diagnosed the eye problem. I took a 3-month leave of absence from work and went with my husband to the U.K. There I read about Dystonia in a woman's magazine, so I went to the London clinic and got all their paperwork and diagnosed BEB myself. On my return to Toronto I saw another neuro who diagnosed BEB/Meige.I know stress can bring on diseases/disorders but I don't believe it causes them. I haven't had any facial or neck injury, not does anyone else in my family have a history of dystonia - its all a mystery. June in Toronto
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Posted by: denise mckew ®
02/15/2003, 08:54:36
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June,Thanks again for the info. I was hoping that there was a similarity in how our BEB came on, since we both have Botox side effects. But I guess it goes to show, although we all have BEB, we all have our own symptoms. Take care,
Denise PS - It's freezing in Maine
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Posted by: MaryNY ®
02/15/2003, 13:35:48
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June, your history of BEB sounds a lot like mine. Even as a child, I blinked and squinted a lot. Even in the photos I've seen of me then, I'm always squinting, and people always told me that. And I have always been very sensitive to sunlight. (in fact, I'm now told by a dermatologist that I'm allergic to it! but that's another story.) I had a long period of stress during the 80's, and the BEB gradually appeared at that time. Took me 10 drs. and 8 yrs. to find out what it was. Including a couple of shrinks, of course. I was so relieved to have a name for it and couldn't believe my ears when I was told I should have shots of Botox around my eyes! But I started it about 8 yrs ago, and it works well enough. I had a limited myectomy 3 yrs. ago ( Dr. Anderson ) and still have 6 shots around each eye, 25 units each, every 8 weeks. That's less than I was having before the operation. I can function OK. Don't drive very far, and wear sunglasses, and occasionally bump into people or things, but overall, I'm so glad to at least know what's going on. I strongly agree that stress can bring on and make worse, BEB! I don't know of anyone else in my family that has any dystonia problems. This BB has been the most help of all! (Well, this and the Botox!) Mary
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Posted by: Barbara Molnar ®
02/17/2003, 09:26:45
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June,I remember always being nervous as a child but I don't remember ever having a blinking problem or any problems with the sun. I started this problem the day we buried my mom. She was not ill and I found her in a coma and the therapist I went to said I had Post Traumatic Stress. I have read that a sudden shock to the body can cause this and that's what I think happened to me although when I get nervous I'm much worse with the blinking. I try to stay calm and then I'm a little better. I just recently found out about the bulletin board and it has been a tremendous help. I have not seen a doctor yet but have the number of one from a friend in my town. This is a crazy illness and hard to deal with because some days are better than others . I don't drive much and I do walk into walls sometimes and I've fallen when I was walking but other than that I'm ok. Keep your chin up (or maybe not, you may fall by not looking down). Oh well, whatever works for you. Barbara in New Jersey - boy is it cold and snowy here
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Posted by: June in Toronto ®
02/17/2003, 16:35:38
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Hi Barbara, stay warm in New Jersey with all that snow. Its cold here as well and snowing, although in Toronto I think we are going to get about 6 cm.I don't think stress "can cause this (beb)". I believe we have the disease (and others maybe) in our body and stress can bring it on earlier in our lives. Personally, I don't think in earlier years that I handled stress very well, i.e., when told I had breast cancer (I didn't) I stayed up for nights cooking, cooking and cooking - so that my two children wouldn't starve! I was a single parent. Within 2 weeks of that first biopsy I got infectious mononucleosis which lasted for 3 years and, even now, I get days when it rears its ugly head and I'm tired for no apparent reason. I believe I finally handle stress better (thank The Lord). I'm glad you found this bb - it can be a life saver with people who understand and care. Good luck with your doctor's appointment when you make it. June in Toronto
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Posted by: Rita Molnar ®
02/18/2003, 22:22:04
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Hey there June..This is me...always looking for some kind of "link" among us BEB sufferers ... Your comment about not handling stress well in earlier years "turned on my light bulb". You described me perfectly....I would have done the same thing as you if I heard that kind of news....I never handled stress well...and I guess I still don't. Wonder how many of us are in common in that way? I never did learn metric...so I can't tell you in centimeters, but we did have about 18 inches around here. Guess that's nothing to you folks in Canada, huh? Rita in New Jersey where the snow is PERFECT today for snowballs...
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Posted by: June in Toronto ®
02/19/2003, 12:59:12
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Hi Rita, On this bb a couple of year's ago we did a survey (trying to find those common threads among beb'ers) and most of us came out as "high achievers" or A-type personalities, Because we are human beings, most of us have had a good share of stress in our lives. A lot of us have worked in the school or library environment as well. So who knows what the common thread is I don't?:-)18 inches of snow sounds like a lot more than our 6 cm - today is a grey day in Toronto but milder, thank Goodness. June in Toronto
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Posted by: Lyn Patterson ®
02/14/2003, 05:28:43
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Hi DeniseThis is a tricky one. My old doctor kept increasing my dose until he was giving me 70-100 units as it was only lasting about 11 weeks. The doctor I see now reduced this to about 40 and injected me in different places and I still get 10-11 weeks. I really do believe the injection sites are very important and that your doctor should study which muscles are the ones affected in your case. My doctor uses one of those huge surgery type lights so that he can see where he is injecting and which muscles he should be injecting. I have far less drooping of eyelids which I got all the time previously when the Botox kicked in. Lyn
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Posted by: debbie campbell ®
02/16/2003, 10:14:39
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Hi June,
I too have always had senstive eyes. I've always had to wear sunglasses when I go out. No one in my family has any form of dystonia. I have always wondered if the sensitivity had something to do with having scarlet fever as a child. I was 4yrs old and our house had to be quarintened. The drapes had to be kept closed to keep the light out due to the senstivity of my eyes. Could there be some connection??
Debbie from Canada
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Posted by: June in Toronto ®
02/16/2003, 19:48:56
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I don't know about any connection between you having scarlet fever and beb light sensitivty, Debbie. Look at my post today to dsal "New Member/Lights" about `our' light problems.Gosh its cold here isn't it? Keep warm. June in Toronto
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Posted by: Kathy in Oregon ®
02/17/2003, 08:09:45
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Interesting question debbie. I also had scarlet fever as a child but don't know if there is any correlation betewwn that and light sensitivity. As far as the darkened room , isn't that the usual thing to do when one is ill and to be kept quiet? especially a child.
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Posted by: Rita Molnar ®
02/18/2003, 23:00:44
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Hi Debbie...Never had Scarlet Fever, but I do recall my mother talking about it and saying that someone ill with it had to stay in a darkened room, because light could "hurt" their eyes.... I have light sensitivity, too. And I have a childhood memory of laying on the beach and staring up at the sun (stupid--but back then no one knew of the ill-effects of the sun's rays). I often wondered if I hadn't "hurt" my eyes by doing that... You sound like me--searching for that "common thread" so that we could understand what this BEB thing is all about... Rita in New Jersey
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Posted by: June in Toronto ®
02/19/2003, 12:52:32
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No offence meant to our U.K. posters, but when I was growing up in England I didn't go a beach (with sand on it - only pebbles) so it was difficult to lay out on! Also the sun didn't shine very much (!!!) so staring into it wasn't the cause of my light sensitivity.June in Toronto who had coffee with an U.K. friend today (a newish friend) and we talked about `the good old days' in England and had a great natter and it brought back many happy memories.
--modified by June in Toronto at Sat, Feb 22, 2003, 09:08:23
Modified by at Sat, Feb 22, 2003, 09:08:24
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Posted by: Raymond C. Fudge ®
02/19/2003, 16:56:12
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Scarlet fever, now that is something I can relate to, and finally join in. I had Scarlett Fever when I was 5, also rheumatic fever the same year. I have had sensitive eyes, to light, ever since I can remember. On the other hand, I have also had two major head traumas. One cousin has Parkinson's but no other dystonia I know of.
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Posted by: Christine ®
02/19/2003, 20:13:46
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I also had Scarlet Fever when young. I don't remember being in a darkened room with it, but the curtains were closed for something I had, I thought it was chicken pox, or measles?
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