blefro


Posted by Mona Kueker , Feb 13,2001,16:41   Archive
This is my first time on this site. I could use a little advice getting around. My father-in-law as this disease, and is afraid to have the shots. He wants to know if they really work, or just another dr. trying to get money. Could I hear som stories from some who have had the shots? Why you decided to go that route and whatever else you deem helpful.
Thanks a bunch.



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Re: blefro

Re : blefro --- Mona Kueker
Posted by Sally - in - Idaho , Feb 13,2001,17:51 Top of Thread Archive
Dear Mona,
Welcome to you and your father-in-law. I hope you will find this site useful; we all try to help one another, along with having a bit of fun. I am 66 years old and have been diagnosed with blepharospasm for about three years ... after much tromping between doctors begging for some answer. My mother also had BEB, but the doctors all refused to consider that it might be hereditary (it is). Anyway, I first tried the drug Neurontin and that totally zonked me out. Of course my eyes did not spasm, because I was always asleep! If drugs do not work, and they don't seem to work totally alone for most people. then Botox is the only answer at this time.

I have been having Botox injections around my eyes (now six shots around each eye, 100 full units) since October 1999. I have them every two months and that is working out to be the right length of time between for me. I go to a movement disorder specialist neurologist. The injections are not extremely painful ... a couple of the sites really do hurt me, but they are over with very quickly and the benefit I get from them makes it worthwhile.

The Botox injections do not help at all with the light sensitivity, which is very bad for me, but it helps the spasms so that my eyes do not lock shut like they used to. They still prefer to be closed, especially when I am tired or under stress, but I can open them.

How bad are your father-in-law's symptoms? Is he still working? Able to drive and read? Where does he live?

Feel free to ask any questions here and someone will try to answer them or direct you to another site where you might find helpful hints. We hope you will stay with us and share the struggles and little successes that go with this affliction.

Sally in North Idaho




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Re: blefro

Re : Re: blefro --- Sally - in - Idaho
Posted by Mona Kueker , Feb 19,2001,08:48 Top of Thread Archive
Dear Sally,
Thanks for answering my plea for help. My father-in-law has had this disease I am guessing for the past 8 years or so. it is hard to know exactly when the symptoms started getting real bad. He has a nervous condition also, and blinks and nods his head a lot. I can remember, he had an eye exam about 8-10 years ago, and that seemed to start the sensitivity to light or at least make it bad enough for him to notice. He has stopped driving the last 2 years. He has occasionally driven out to the fields (we are farmers in Minnesota) and that is pretty scary. I have a now 13 year old son, and he has been driving grandpa around on the deserted roads quite a bit.(not making us too happy, but he is safer driving than my father-in-law). After the light sensitivity started, then the dry eyes came. He would go through 3 bottles of solution a day. We only knew what this was about 5 years ago. My mother-in-law was talking to some people, and they sent her some info on it. We didn't say anything for a long time to dad. But it had gotten to the point where he goes no where, doesn't drive, and pretty much sits in the house. He had a heart attack 4 weeks ago and talked to a neurologist when he was in the hospital(he hates hospitals). It has been a long struggle for him. We all are trying to convince him to try the shots, but he is a very stubborn man. Also afraid of needles I think. Anything would be worth trying to see if it helped. He has no kind of a life now, just sitting around. I did copy off some info I found here and gave it to him to read. Also the info on collecting Social Security. He is 63 already and will collect in a few years anyway. Hopefully he will follow through and try to go back the last year and get retroactive benefits.
This is getting long, I better go for now. Thanks again.



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Re: blefro

Re : Re: blefro --- Mona Kueker
Posted by Sally - in - Idaho , Feb 19,2001,21:59 Top of Thread Archive
Hi Mona,

If your father-in-law does give in and try Botox, tell him to try to stay calm and not stressed (easy to say, huh!). Also, make sure that he takes no aspirin for at least ten days prior. Tylenol is okay. Aspirin tends to make the injection sites blee, the toxin to spread, and cause it to be less effective.

There really is nothing to lose by trying Botox. It took me a bit to get up the nerve, then I wondered why I was such a chicken.

We ar farmers in eastern Washington/North Idaho, so know whereof you speak!

Sally in North Idhao




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Re: blefro

Re : Re: blefro --- Sally - in - Idaho
Posted by Mona Kueker , Feb 22,2001,10:54 Top of Thread Archive
Thanks Sally. The only thing right now that we can do is pray that he will give in and try the shots. He is a very, very stubborn man (aren't they all). Thanks for all your help.



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Re: blefro

Re : blefro --- Mona Kueker
Posted by June in Toronto (June Floyd,June in Toronto), Feb 13,2001,19:27 Top of Thread Archive
Hi Mono, welcome to the bulletin board - sorry to hear your father-in-law has beb. Mine started over 6 years ago - I went from doctor to doctor and finally got it diagnosed and have been having botox injections (90 units each time) since at 4-6 month intervals. It works well for me - some pain from the injections, but they are over in 5 minutes. I get side effects which last about 3-4 weeks afterwards - pain, burning, etc. afterwards. Without botox I would not be able to see. I had to give up my job because of beb and have had to change the way I live as well - don't drive very far, can't drive at all at night - and even as a passenger in the car I have to cover my eyes up due to the darkness and bright traffic lights. I have light sensitivity, but can watch tv and movies - can't watch a moving computer screen (thank goodness I touch type), cannot read for more than short periods. It takes time to figure out how to deal with this disease - drugs by the way, did not help me - botox is the only thing that does. I wish your father-in law good luck with his decisions. June in Toronto



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Re: blefro

Re : blefro --- Mona Kueker
Posted by Delaine Inman , Feb 13,2001,22:21 Top of Thread Archive
Mona welcome to the Board. Sorry your father-in-law has this dreaded stuff. I really didn't want to try Botox until I tried other things. Nothing else was working so I had Botox every 3 months without getting help from them for 1 year from 2 different doctors. I had surgery and it didn't help as much as I hoped, but the Botox did seem to help some after having the surgery. Everyone is different. For some Botox is a miracle, for some it helps, for some it doesn't help that much. If he doesn't try he won't know. He needs a very experienced doctor who will give the injections where he is spasming the most. I had also tried a lot of medications that hadn't worked and since the surgery and the botox I have started on a low dose of klonopin and it seems to be helping a great deal. So you see sometimes it is a combination of things that work. Ask for EMLA cream and apply 2 hours around the eyes, forehead, between brows and sides of nose and that helps with the discomfort of the needles. Needles should be small...30gauge...smaller the better...Botox should be mixed in a saline that has no preservative. Sometimes you have to be assertive and ask if that is how the doctor is going to give the injections. We have found out the hard way you can't assume anything. Good luck.
Delaine in TN



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Re: blefro

Re : blefro --- Mona Kueker
Posted by edith nalepa , Feb 14,2001,00:40 Top of Thread Archive
Dear Mona. Hello, I am also a new comer to this site. I am 71, and have had BEB for about 5 yrs. and for 3 yrs I was afraid to get Botox injections. I have been getting them for 2 yrs from an optamologist. just one eye, 20 units, yes it does work for me, it wears off in 3 to 4 months. Its not perfect, but I am glad I have been getting it.Hope you can get your Father in law to try something, and I hope it works for him. Edith in Florida



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