Re: NASALCROM-Active ingredient/Shirley?
Can you tell me the active ingred. in this please Shirley - sodium gl.....somthing or other. Thanks.June in Toronto (beb/meige)
Re: NASALCROM-Active ingredient/Shirley?
Hi June,
Sorry that I didn't say something before. I'm having a lot of eye difficulty right now. Lot's of squeezing going on.NasalCrom nasal spray (nasal allergy symptom controller)
Active Ingredient-Cromolyn Sodium
To be used every 4-6 hours-must be used before an exposure to an allergen (in this case we are assuming that is the botox) that might be triggering a slight allergic reaction.
If taken after the exposure to the allergen, it will not work. This is a preventative type thing. I don't know if it will help or not but is a harmless thing to try. It is an over the counter item in the USA. Shirley in Arkansas
Re: Thanks Shirley
Sorry to hear you are continuing to have eye squeezing Shirley - hope it clears up asap. Thanks for the information - I really appreciate it, and hope to get NasalCrom when I'm in the U.S.A.June in Toronto(beb/meige)
Re: Shirley-eye squeezing
Shirley, you mentioned that you are having eye squeezing. Is it your top lids or botom lids? After I had my surgery the squeezing/spasms under my eyes were twice as bad as before. The top lids work fine but the squeezing under the eyes still cause my eyes to close. Is this stuff weird or not. Oct. 8th I had 52 units of Botox and they helped especially the mouth and nose . He came further down the cheek area and gave me two on each side of the nose. I can tell the Botox is wearing off because when I get up in the morning my eyes are in the shut down mode. The Klonopin helps but I can tell it is not as effective now as when the Botox was working. I think I must be kin to Alan - guess what I have done now!! It is all Delaines fault. She inspired me in the planting of flowers, etc. Well we cut down some bushes and I helped gather them up not knowing that there was POISON OAK/IVY in the bushes. I went to the doctor because it had gotten infected and he gave me a form of Penicilin and I broke out in hives . Naturally I stopped taking the medicine but the hives are driving me crazy. I have to call back tomorow if it is not better. Joyce in NC BEB/Meige We are having crisp temperatures - 30 degrees last night.
Re: Joyce & Poison Ivy
Joyce, Joyce, Joyce, - what to do about you:-) Sorry to hear about this latest episode of poison ivy - not nice is it? I get hives from penicillin as well - although, when tested, I wasn't supposed to be allergic to it! Now don't scratch and do take care.June in Toronto
Re: Shirley-eye squeezing
Hi Joyce.
The squeezing is coming from my forehead and lower lids which as you have found can definitely close your eyes. I do not having squeezing from my upper lids anymore and the lower lid squeezing is not any worse since the surgery-it is just more apparent to me. My upper lids, before the upper myectomy, overpowered everything else and so I noticed it the most. That problem is gone.
I received 45 units of botox 8 days ago and it is helping some. I'm breaking in a new MDS so we haven't quite gotten our "sites" and dosages worked out yet. If I had been able to see where he was injecting, I would have had him do things differently. We talked about where he was going to inject me beforehand but I do believe that we didn't follow that pattern. I'll have some "suggestions" for him the next time.Part of the problem, also, is the fact that my husband is going to be job hunting very soon and we are trying to get some things cleaned up and fixed up around the house so that we can sell it and move to a smaller, one story house. We may be relocating. So, there is a lot of stress and unusual activity going on right now. We all know that stress makes this worse but I can't get rid of that at the moment. Glad that you are doing better and you need to stay away from the poison ivy. Shirley in AR with BEB/Apraxia
Re: Shirley-eye squeezing
Joyce, Joyce, Joyce, Joyce (one more "Joyce" than June came up with)
... we must get a rocking chair and tie you in it so you can sit and knit and stay healthy!! I hope the itching has let up by now. That can be horrid to put up with.Sally in North Idaho with BEB/Meige which has my voice coming and going and scratching and rasping, but is fairly good the past few days.
Re: Rocking chair for Joyce
Sally, I do like that idea. I will help you tie her in. I'm afraid that she may be hard to catch, though, especially if she knows that she is going to have to "sit (rock) stay". I can just see her running through the fields of poison ivy trying to get away from us and that rocker.Shirley in Arkansas
Re: Shirley-eye squeezing
Joyce, sorry to hear your problem. If you are a kin, it must be distant as you have to have a lot more wierd experiences to classify yourself as a close relative. Seriously though, I know what you are going through and it isn't fun.By the way, I have actually started putty up the Christmas decorations inside the house. My son bought ne a new ladder and made me throw away the one that I fell off of last year. I have to tell you, I am a little squeemish climbing now and I hesitate to reach out for things for fear my eyes will shut and the same thing will happen as did last Christmas. I don't need any more broken heels. The one I broke last year still hasn't completely healed. Anyway, that is why I am starting early so that I can take my time and not rush. Christmas is my Holiday and I want to enjoy it this year. I am only playing Santa six times so I should be able to handle that without much problem. Oh well, back up the ladder. I now have to tackle the great room which has a twenty one foot ceilings. I probably will get a nose bleed from the heights. ....Alan
--modified by Alan Phair at Fri, Nov 09, 2001, 13:03:51
Re: Alan ~ Pictures, please
Hi Alan,I kept hoping you would post or e-mail a picture of the 22 lighted pumpkins in your front windows and all the other ghoulish attractions. Guess I'll have to give up on that, but please show us the Christmas splendor. You need a forklift or a cherry picker to decorate that 21-foot high room. Put that on your Christmas list so we'll know you are safer than on a ladder. Sally in North Idaho where it's in the 40s today
Re: Alan ~ Pictures, please
Sally, I am not sure if I have a picture of the house lit up at Halloweenor not. I may have one from last year. If so, I will post it for you. As for the Cherry Picker, believe it or not, I used to use one at my old house to decorate all the big trees in the yard. Since we moved to this new house, the trees are all either small ones I just had planted or tall pines over one hundred feet tall which I am not going to decorate....Alan
Re: Shirley-eye squeezing
Santa please be careful...you are our Knight in shining armor...we wouldn't want a repeat of last year. Would it be too much if you asked for help in getting the decorations down and put on the highest trees???
Re: Shirley-eye squeezing
Alan, hearing about you climbing up the ladder gives me shivers. Listen to Delaine, the voice of wisdom, and ask for help - please!
Say, weren't you in Las Vegas recently? You didn't tell us how you did.
I heard about you, when I was there, they say you broke the house -- every house, and aren't welcome there anymore. :-)Christel in Ca. who saw "Riverdance" at the "New York".
Re: Shirley-eye squeezing
Actually, we did very well. I say we which is a change because I usually am the only one that wins. This time, both my wife and my sister won which made my winnings real winnings for a change. I won't s say how much but it certainly more than paid for the airfare and any meals that I did not get for free and the shows. Fortunately, Caesars palace gives me the room for free so I came back in great shape. I did have problems with the eyes but you don't really need to see what you are doing with the slot machines. Just be lucky. I had not been down to old Vegas for quite awhile and really enjoyed the way they changed it. The light show was spectacular and they did a patriotic show that had my wife and I in tears along with just about everyone else. I had not been in the Golden Nubgget in years and believe it or not, there was this bank of 5 slot machines (all the same kind) and I hit the jackpot on all five before the casino person came to pay me for the first one. They were not big jackpots but amounted to a little over $4,000. This was probably within the first half hour that we went in. We had a great time and the real reason my wife and I went was that my sister had never been and we wanted to show it to her.
Re: Shirley-eye squeezing
Good for you, Alan, I wasn't so lucky, but now I know why, you already cleaned out all the machines. :-)
We actually went to see relatives who live there and didn't do much gambling. I find walking through casinos very difficult, once I'm in front of a machine, I'm o.k., because I just have one thing to focus on.Christel
Re: Shirley-eye squeezing
Hi!My name is Hillary, and my mother has Blepharospasm. I am a senior at Ohio University in Athens, Ohio and am very interested in hearing personal stories from others who have this disorder. I am researching the disorder for a Health Communication Class, because, in my mother's experience, very few doctors (at least in our part of the country) knew about the disorder. It took her 2 years to get a dignoses and begin her Botox infections in 1992. I am very interested in hearing all of your personal stories (everything from beginning symptoms to falling off the ladder to opinions about your doctors and support groups). Any help that all of you can give me will be greatly appreciated. Thank you and Have a Great Evening! Hillary
Re: Shirley-eye squeezing
Hi Hillary,It's great that you are undertaking a research paper on this dratted affliction. Your mother must be proud of you, and it will be helpful to you (but not to her!) that you have a real, live subject to report on. The two-year search for a diagnosis is about par for the course. Some have taken longer, and a few have been "lucky" to have a quick diagnosis. Even though we know it's not going to kill us (unless we stumble in front of a truck of something similar), it is quite a jolt and usually a big loss of freedom. I used to love to get in my car and drive; it was my escape and a major source of freedom. Now, I drive very little and only when I have to, staying with roads I am very familiar with. Reading was my major love and I am a retired school librarian. There was a period of time when I could only read large headlines. That was extremely depressing. After about a year of Botox injections, I became able to read again, but but can't devour three or four books a week as I could before BEB. I have Botox injections every two months: 100 units in five or six sites around each eye. I take no medications for BEB, although I take many for other causes. Light --- both sunlight and fluorescent --- is a killer! The photosensitivity is my most troublesome symptom, even more so than the spasms. My eyes prefer to stay closed, even with the Botox, so I have a lot of strain from trying to make them stay open. I am 66 years old and my mother (now age 84) also had BEB about 25 years ago. She had a neurectomy, which is the severing of the 7th cranial nerve near the ear lobe ... in fact she had this done four times ... and was supposedly cured. She is now developing a hoarse voice, which is possibly related to the old BEB. I also have hoarseness and a crackly voice that is getting worse. My neurologist tells me that is part of the Meige. Now for your mother: does she receive Botox injections? other meds? able to drive/work? sensitive to light? Please tell us anything you'd like us to know, and feel free to ask any questions. We'll try to help you out all we can. You are correct in assuming that Shirley is the one who can best explain many of the medical details, etc., and I'm sure she will do just that. She's a great gal! Thanks for sharing with us and perhaps you can get your mom on the BB. Sally in North Idaho BEB/Meige
Re: Shirley-eye squeezing
Hi Sally,Your information will be extremely useful to my research. Personal stories are the most important part to the equation, because it's so hard to describe the disorder from my own words. I have lived with a mother who has BEB, but I don't actually know what it's like myself. I've got my mother's story, yours, and a few more from this bulletin board. Every story is different, and I really appreciate that all of you are willing to share with me. My mom has received Botox since 1992, and she goes every 4 months. She's doing well now. She works as a secretaty, can drive everyday, etc. Of course, she doesn't even think about leaving the house without sunglasses and her eyes turn black and blue after her injections, but she is getting along quite well. She went through around 12 doctors to get a diagnoses, so the beginning was hard for her and our entire family. She is so thankful for her injections. Hillary
Re: SINUS SUFFERERS UNITE:-)
Nobody has indicated to my original post if any of you sinus suffers (thinking its caused my the botox injections) get an injection at the bottom lid, close to the nose? I'd love to know. ThanksJune in Toronto (beb/meige)
Re: SINUS SUFFERERS UNITE:-)
June, I do have some sinus problems and have never been injected with botox at the inner corner of the lower lid. (that I remember) :-)
I've always been told that this is a problem area to stay away from.Shirley with BEB/Apraxia
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