Re: Reply to your message re: Blepharospasm
Thanks Pat, I appreciate your kind words. I'll get in touch with you.Shirley in AR.
Re: It took one hour???
What on earth did that doctor do for one hour? I'd have been a basket case by then. My doctor does the injections quite quickly, probably ten minutes. I thought I was doing pretty well with managing the pain/ discomfort of the needles, but today he told me that I am his only patient who "feels any pain." I felt pretty bad over that. I never yell or anything, but I do clench my fists really hard and on a couple of the sites I kind of groan. I promised I would try to be better next time and not react. Don't know how I'll manage, but we'll see.Sally in North Idaho
Re: Don't feel bad
Sally, don't feel badly about the injections hurting. Everybody has different thresholds of pain and he may have told you that to make himself feel better since he was the one that was sticking you. Him saying that you are the only one that "feels any pain" is ridiculous. Let's lie him down and give him the injections around his sensitive eye area and see how he feels about it then. His attitude would change very quickly, I'm sure. You might try using the EMLA cream. I've used it for one area that it really hurts. If all the spots were as bad as that one, I would really dread getting them but I've been lucky with just having the one really tender area. Now, I won't have to get them there anymore, because of the surgery.Shirley in AR.
Re: Don't feel bad
My injections take less than 5 minutes and I agree with Sally, I just clench up a bit once in a while to stop moving when a bit of pain occurs and to ease it. I couldn't be bothered with applying emla cream so often an hour or so before, as its over (for me) so quickly - I can take it. I can understand others would feel more pain though and that doctor doesn't know what he is talking about if he thinks we all don't feel some pain with botox injections.June in Toronto
Re: Don't feel bad
Shirley - I will help you hold him down. We may even invent some NEW places for him to get Botox!!!! How ridiculous of him to say that! I think that eyes and lips, in fact, any place on the face has lots of nerves! Shelley
Re: Don't feel bad
Thanks, Shirley. I think he felt he had to point out that I am his only "pain" because he was performing for an associate yesterday. She was asking me several questions about my symptoms, etc., and I said that I knew several people who painted themselves up with thick layers of EMLA cream first to deaden the pain, and she said she had heard of that. My doctor said it's a waste of time and he has never used it for anyone. I then commented to the lady that I figured it would be more bother than it was worth because I just tell myself it will be over with quickly and I can endure a few minutes of hurting. That's when he said that I apparently feel pain more than anyone else, because none of his other patients feel any pain ... maybe just a little needle prick. Next time, I will do better and will take a silver bullet along. Wonder if the insurance would cover that!You should see my black eye today; I look like I was in a ring and came out the loser! The swelling and blurriness are a bit better, but it's really sore (at least to me it is, probably not to anyone else!!). Sally in HOT North Idaho ... 90 degrees today.
Re: Black Eye and Pain
Sally, I sometimes get a black eye whilst I'm sitting in the chair after having the botox injections - it comes up that quickly! I talked to my neuro some time ago about pain from the injections (in general) and he said he has one lady who always feints - from being scared I think as much as from the pain itself. We all react differently to pain and that doc. of yours should realise this - after all you don't even scream out for goodness sake.June in Toronto
Re: sally
sally, have you had alot of the injection over the years as i have ?. I just maybe figured out that it is scar tissue that has built up that is so hard to get thru.
Re: sally
Kathy, I have been having them every two months since October 1999. I have considered your theory, as they seem to hurt more now than the first time.Sally in North Idaho
Re: sally
oh, that's not long at all; no wonder mine hurt so much. i think i might be right.
Re: It took one hour???
Sally, this is very interesting, I just had my second dose of injections Monday last week, the first dose March 21st and both times my dr. injected me approximately 10 times around my eyes and it took maybe 2 minutes and I did have pain both times but the pain is gone as soon as the needle is removed and with the results I can certainly tolerate the pain. I just don't want people to think there isn't supposed to be pain. My dr. warned me it might be very painful.I can't imagine an hour or more of this kind of treatment. I'm glad Pat found another dr. penny
Re: It took one hour???
That's exactly how I feel, Penny ... it goes so quickly and I can stand discomfort if I know it's ending soon. My doctor blots any bleeding before going on to the next site and if I have kind of lost my breath from the "sting" of a needle, he pauses to let me get my composure and then asks if I'm ready to continue. I know that some people have posted saying they have extreme pain and I really feel sorry for them having to endure that.Sally in North Idhao
Re: It took one hour???
As I am reading all of your messages on getting your injections it almost hurts just reading about it. Tuesday when I got my injections, I told the doctor that ones of these times I am just going to yell really loud. My doctor always is amazed at how well I do and how I sit so still. I told her I had my teeth clinched and every muscle in my body tightened up and I am afraid to move. My doctor is pretty fast and it dosen't take very long. I think I hate the ones in my eyelids the most. I can handle the pain because I know it is over very soon & it helps me to see. However lately my injections aren't working as well as they used to. I really thank the Lord that I can see as well as I can. I think a good eye day for me is as long as I can see well enough not to run into something. I have had some close calls.Billie
Re: A good eye day
Billie, you made me smile when you said that a good eye day is one where you can see well enough not to run into something. I can really relate to that. It really isn't funny but, oh so true. It is all the little (or big) things like that, that we can share with each other and understand when others really don't. That's why I smiled. This is a place to come to and feel comfortable and be able to laugh at ourselves a little. You'd scare your doctor to death if you screamed. My doctor always tells me that I do really good and that some people do experience quite a bit of pain with the injections. He is also fairly quick with the injections and it only takes him a few minutes. He stops briefly in between and holds pressure on each site, checks it again and then if all is well, goes on to the next site which he taps with his finger to let me know where it will be given and then goes again. He seems very relaxed and thorough when he does them. It is over quickly but I do feel that the people that experience more discomfort shouldn't hesitate to use the EMLA cream or a little something for pain (just not as much as Shanasy does)Sorry Shanasy, I couldn't help myself once again. :-) And no one should be made to feel badly about the fact that at times and in some spots those injections can hurt. That is inexcusable as far as I am concerned and I'm afraid that I would have to have a major talk with the doctor and his attitude. I really do like the idea of Shelly holding the doctor down and I'd be delighted to give the injections to him myself. I'm pretty good with a needle when I need to be. };-& Shirley in AR.
Re: A good eye day
Shirley, I remembered one of the other questions that I was going to ask. Right before I went out of town last week, you mentioned pictures from the conference. I couldn't figure how to click on the link to see them. It's also possible on my computer I can't get them. I have seen your pictures though, the ones after surgery. I haven't been on the internet very long, so there are a lot of things I don't know how to do. I got a book, AOL for dummies and I have trouble understanding it. I guess that is pretty bad, but sometimes when I can't see very well to read I have a hard time understanding what I am reading. Of course sometimes when I can see okay to read I still have trouble understanding what I have just read. Especially when it has to do with my computer. Billie
Re: Billie-conference picture from 2000
Hi Billie,
I couldn't sleep so I am at it again. I think that I am addicted to this bulletin board.
Anyway, my eyes aren't working so good right now but I found the link again to the conference picture. I stole Virginia's as it was easier than the way I did it the first time.
I'd have trouble reading the book, too. I am able to read a little bit now, where I couldn't before my surgery. Do you realize that I had saved and stacked up newspapers from a year ago. I finally had stopped the paper except for the Sunday addition but couldn't bear to throw the old papers away until I had "gone through" them. How crazy can a person be? They are gone, now. Off to the recyclers.Just put your little cursor on the link (in color) below and click on it with your mouse one time and the post should come up and when it does it will tell you the names of the people in the picture. You click on the little tiny picture in the lower left hand corner and that will enlarge it. Hope this works. Let me know if it doesn't. Shirley http://www.blepharospasm.org/forums/beb/archive/7005.html#7005
Re: stacks of reading material
I couldn't help but laugh when I read your comment about the newspapers. I did the same thing with magazines. I still have them (fortunately they don't come every day). I can read and do, but I had to limit it quite a bit. I have since dropped most of the magazines - at least until I catch up on the old ones. I do read books, though; they were harder to give up and I would use my good reading time for those.Virginia in AL
Re: stacks of reading material
Virginia ... I think that you, Shirley and I are just a bunch of "stack-a-holics!" I hoard and hang onto and hide newspapers and magazines until they start spilling out everywhere and my husband goes through the roof, and then I sadly let them haul off a few.Those of us who enjoy the written word have a very difficult time letting it go before we peruse it. Even when I could read virtually nothing except big headlines, I always skimmed the daily paper and pretended to myself that I was reading. It was so frustrating. I can read a little bit again and that is one of the greatest gifts I've received. Sally in North Idaho
Re: stacks of reading material
Girls - I think I could give you all a run for your money concerning PILES of things! I just keep buying books and magazines and teacher stuff. Can't stop myself. Don't intend to, because someday, I will get to them. ALL of them! I just got back from a five day trip and am working my way through the newspapers. I LOVE TO READ!!!!!
Shelley/CA
Re: Billie-conference picture from 2000
Hey Shirley, Thanks for explaining about the picture. I got it and looked at the picture. I think I remembered Alan & you from the conference, but no one else looked familiar. It has been almost a year. There was a lady that sat next to us at the banquet that was from Canada, but I can't remember her name. She was there with her sister. We were laughing because we were so cold. I had on my husbands suit coat & they went back to their room and came back in layered clothing. Also, we were amazed that our chicken wasn't done. I think I remembered you because you are from the same place one of my best friends live. She used to live just up the street from me. I hate it when best friends move away.
I was thinking about one of the things you said when you went shopping with your husband, about hanging onto his pocket. I have done that so many times from the car to the store. I sometimes can't get my eyes open in the bright sunlight. I can usually see fine once I get into the store. It's just the trip in. My husband is pretty understanding
when I can't see. I think he also found new admiration for me when he went with me to get my injections. He is afraid of needles, so he thinks I am really tough.
Billie
Re: Billie-conference picture from 2000
Billie, I'm glad that you were able to see the picture. It is a bit fuzzy, but then, isn't everything?I think that my chicken was done. I would have noticed that. My husband would have noticed that right away, also. He is very particular about his chicken (chook) and how it is cooked. Where did your friend move to? I live in North Little Rock. I feel that all spouses should see the injections being given unless they are going to pass out or something. My husband watches me get them and my oldest son has watched several times. My son just seems to get a little too much enjoyment out of it, though.
The doctor that does my botox injections now, always tries to run my husband and son out and they always say they want to watch. He says that it always concerns him for people to watch as he was giving the injections to someone one day and their spouse was watching and passed out on the floor. He quickly found out that the person had done more than faint and they had to call a code on him and resuscitate him. He says that he has been leery ever since.
I guess I would be, too. Shirley in AR.
Re: Billie-conference picture from 2000
Hey Shirley, glad your chicken was done, guess you must have gotten it off of a different table then we did. Most everybody abound us didn't eat theirs. The rest of the food was delicious though. I believe you said you all were going to this next conference. I wish we could go, but I don't think we are going to.
My friend used to live in North Little Rock. Now they live in Mabelvale. I think that is there close. We've been there several times. Right now they live sort of in the country.
One of my daughters has gone with me to get my injections, she goes in the office with me, but she probably doesn't watch. My doctor that I've had since 94 was out of the country for 6 months, so I had to get my injections from a different dr. They both are really good at giving them. She and her family went to Switzerland for 6 months but will be back in July. I've decided to go back to her in August for my next injections. They don't work as well for me as they used to. I get 100 units for both eyes, and my doctor wasn't sure about raising the amount. I may have to go back to the other one because he said that he would. I got my injections Tuesday and they haven't seemed to start working yet. Today has been a bad eye day for me. I feel bad telling you that. You and some of the others have had so much more trouble seeing than I have. I feel so fortunate sometimes.
Billie
Re: It's ok to share with us
Mabelvale is just in south Little Rock. If you get back down here to see them again, let me know and we'll get together for a short visit. Don't ever feel bad about telling us on the bb that you are having a rough time. That is what we are here for. We all have those bad days and it is not so bad to know that others have them too and get through them. We need to hear about the good times and the bad times.
Sharing our experiences is what brings us together. Knowing that many others save magazines and newspapers is sad but funny, none the less. I still couldn't read much of the newspaper, now. I remember when I first started posting on here a couple of years ago and someone took offense to the fact that I said that I couldn't drive while holding one eye open. If they could, that was fine but I could not do it as my eye goes every which away when I try to hold it open. Somehow it got turned around with the gist of it being that my symptoms might be worse than someone else's. I mean, who cares, it is a matter of perspective and changes on a day to day basis. Some people are worse than me and others are better. The fact remains that I have Blepharospasm and so do you and I understand what you are going through. Don't ever feel bad about telling us when you are down or your symptoms are worse. I feel fortunate, too. Take care Billie, Shirley in AR.
Holding eyes open
I held one eye open to read for at least a year before I started having serious BEB symptoms and that was no problem. But I never could figure out how to hold one eye open to drive - not with those wraparounds over my regular glasses - I can't even reach my eyelid through all of that. Virginia in AL
Re: Billie-conference picture from 2000
My doctor invited my husband in to watch my very first injections. He did come in, but was bored and much more interested in reading an old "Time" magazine. So I told him to just get lost after that.Sally in North Idaho
Re: Reply to your message re: Blepharospasm
Dear Pat, Haven't posted in a while and am rusty. I have to get Botox every 7 weeks. Last time I tried to go 8 and it was a not a good thing....Everyone has different problems and reactions to the shots. I learned deep breathing exercises on Oprah and they help a lot when I get my injections. My doctor and I have an agreement-- first the left eye then I get a rest--then the right eye. Last time we were talking about his impending surgery and it was a lot easier. People ask me "How can you do this every 7n weeks" and my answer is that I do not have to look very far to see friends who are dealing with much more than I have to. Two of my friends are fighting cancer.... it really puts it into perspective for me. What I have to do is minor compared to what they are doing. I have had surgery and it is very painful when he hits a bit of scar tissue... but it is tolerable. I just am so very fortunate to have a very understanding, kind and informed doctor helping me manage the conditions that I have. Try the deep breathing.. it helps Mary
Re: Reply to your message re: Blepharospasm
Mary GThnaks for your message re: botox injections. I have been getting my injections every 3 months but they only last about 8 weeks so I am now going to get them every 8 weeks. In live in Pa but my husband and I drive 4 l/2 hours to Baltimore,Md. to the Wilmer Eye Institute at John Hopkins to see my doctor. He is just wonderful. He takes only 10 minutes to give me 18 injections and I hardly feel anything. I previously went to a doctor in PA for a year and it took her 1 hour to give me the injections and I was a basket case when I left her office. I decided it was time for a change and I feel like a lost a year because I got nowhere with her. I feel quite fortunate to have found a doctor a John Hopkins who not only specializes in Botox but also is a Professor at the John Hopkins Hospital. He is a neuro-ophthamologist and I just think he is great. I have had only 2 treatments from him and I see a remarkable difference. I am sure it will take time but I pray to get this condition in remission within a year. I feel tough times don't last tough people do and I am determined to beat this condition.
I have had had the problem for 4 years but it took 2 years before I was properly diagnosed. I was told it was my nerves until I finally decided to get another opinion and that is why I went to John Hopkins.
My problem is constant blinking and squinting especially when I am out in the sunlight. I am extremely light sensitive - I can't even watch TV - not that I watch it that often but I use to like to watch a movie once in a while in the evening. However, that too will come back I am sure. I do drive my car but I am careful regarding the distance I drive. This really bothers me because I feel like I lost my independence.
I am 69 and retired from my position as a secretary at East Stroudsburg University for 22 years in the Early Childhood & Elementary Education department. A job I really enjoyed. Working around young people is a rewarding experience and I miss students stopping by just to say hello or perhaps discuss a problem they might be having. My husband was retired for 5 years so he really wanted me to retire so we could do things together. I too was diagnosed with breast cancer 6 years ago but consider myself lucky. I did not have any chemo or radiation but I did have a mastectamy. I also had 23 lymph nodes removed and they were cancer free so I was put on the drug tamoxifen for 5 years. I stopped taking this in October 2000 and I sometimes believe that this drug could have caused my problem although the doctor says he never heard of anyone having a problem with it. I read about some of the side effects and I guess I feel different about this but I thank God that things worked out for me like they did.
I hope all is going well for you and thank you for your response. I will keep you in my prayers as I do all of us who suffer from this difficult disease. Keep in touch.
Pat Soulia
Stroudsburg, PA
Re: I'm still curious about first doctor
Hi Pat, I'm still curious as to what that first doctor did for a whole hour?????Sally in North Idaho
Re: Reply to your message re: Blepharospasm
Pat,
I also took tamoxifen for 5 years after a lumpectomy and radiation for breast cancer (at 45). I have blamed the tamoxifen for a several problems I've had, but not the BEB. It can cause vision problems, but AFAIK not neurological ones. I would like to know the cause of the BEB, but it doesn't seem likely that I ever will know for sure.Virginia in AL (who gets botox in FL)
Re: Reply to your message re: Blepharospasm
Mary GThnaks for your message re: botox injections. I have been getting my injections every 3 months but they only last about 8 weeks so I am now going to get them every 8 weeks. In live in Pa but my husband and I drive 4 l/2 hours to Baltimore,Md. to the Wilmer Eye Institute at John Hopkins to see my doctor. He is just wonderful. He takes only 10 minutes to give me 18 injections and I hardly feel anything. I previously went to a doctor in PA for a year and it took her 1 hour to give me the injections and I was a basket case when I left her office. I decided it was time for a change and I feel like a lost a year because I got nowhere with her. I feel quite fortunate to have found a doctor a John Hopkins who not only specializes in Botox but also is a Professor at the John Hopkins Hospital. He is a neuro-ophthamologist and I just think he is great. I have had only 2 treatments from him and I see a remarkable difference. I am sure it will take time but I pray to get this condition in remission within a year. I feel tough times don't last tough people do and I am determined to beat this condition.
I have had had the problem for 4 years but it took 2 years before I was properly diagnosed. I was told it was my nerves until I finally decided to get another opinion and that is why I went to John Hopkins.
My problem is constant blinking and squinting especially when I am out in the sunlight. I am extremely light sensitive - I can't even watch TV - not that I watch it that often but I use to like to watch a movie once in a while in the evening. However, that too will come back I am sure. I do drive my car but I am careful regarding the distance I drive. This really bothers me because I feel like I lost my independence.
I am 69 and retired from my position as a secretary at East Stroudsburg University for 22 years in the Early Childhood & Elementary Education department. A job I really enjoyed. Working around young people is a rewarding experience and I miss students stopping by just to say hello or perhaps discuss a problem they might be having. My husband was retired for 5 years so he really wanted me to retire so we could do things together. I too was diagnosed with breast cancer 6 years ago but consider myself lucky. I did not have any chemo or radiation but I did have a mastectamy. I also had 23 lymph nodes removed and they were cancer free so I was put on the drug tamoxifen for 5 years. I stopped taking this in October 2000 and I sometimes believe that this drug could have caused my problem although the doctor says he never heard of anyone having a problem with it. I read about some of the side effects and I guess I feel different about this but I thank God that things worked out for me like they did.
I hope all is going well for you and thank you for your response. I will keep you in my prayers as I do all of us who suffer from this difficult disease. Keep in touch.
Pat Soulia
Stroudsburg, PA
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