Re: Newly Diagnosed
Hi Diane and welcome to the Blepharospasm bulletin board. Sorry that you've been diagnosed with this but you have come to a good place for help and support.
I've had Blepharospasm for about 2 1/2 years, now. I'm 49 and married with two sons that are now 18 and 20.
It is difficult to answer your question. For me, the first time that I got the injections, I was already at the point that I couldn't drive, read, watch TV, prepare meals or work so my situation will be different from yours. I can say that they did not incapacitate me or make me any worse. They were minimally uncomfortable and I had little tiny bruised areas. It will depend on your doctor and how you tolerate the injections.
I was initially told and I believe that this holds true, that most people find them a little uncomfortable and over with very quickly and then go on about their business. Others find them moderately painful and a few find them really painful. There is a numbing cream called EMLA cream that is a prescription that you can ask for ahead of time. It would need to be applied several times over a two hour period. The problem being that initially you will not know where your injections are going to be given. The doctor might have his nurse apply it for you ahead of time if you ask.
Especially the first time, it is a nerve-wracking experience as just the thought of getting injections around your eyes is scary. I would suggest that you have your husband or a friend take you in the first time so that they may be there with you and be able to drive you if possible. I think that you will be fine, but better to have someone with you. I doubt that you would need to take the day off. You could have some bruising and possibly a little swelling and redness where the injections were given. I'm talking generalities here.
The injections usually don't take effect for a few days although some people notice a difference right away. You should have the full effect of the botox within 14 days. Things depend on the dosage that you get and the sites where they are given and the expertise of the person giving them. It is a slow process getting this all worked out. It will be very unlikely for things to be perfect the first time. It rarely happens and usually takes several sets of injections before the correct dosage and sites are obtained.
Let us know how you do and ask whatever you like. Be sure and get in contact with the BEBRF if you haven't already and up at the top of this Bulletin board page is the BEBRF Main Pages which has a lot of factual information in it. Just click on it and read what you can.Again welcome to the bb and know that you are not alone with this. Shirley in AR.
Re: Newly Diagnosed
First of all, I am always very sorry to hear about someone else "coming down" with this disorder which while not life threatening, is certainly frustrating! We will do our best to extend as much support as we can to each other. To answer your questions about botox -- while this may not be true of all of us, in my experience botox should not hinder you from going to work right after and it would not be necessary to take the day off, but why don't you do it for the first time anyway? As for bruising, I have never had much, but some of the others have experienced brusing and/or droopy eyelids. The bruising usually disappears in a few days. I'm sure you will get more replies to your questions. One of the frustrating things about this is that it can affect us so differently! Take care, Diane, and hoping that you have a good 1st time botox experience.Be sure to contact the BEBRF if you haven't already. They will send you more info. Prayers,
Cynthia in IL where it's the hottest, humidest day this year!
Re: Newly Diagnosed
Hi Diane,
I too am sorry to hear of someone else being diagnosed with this disorder. I was diagnosed in March of 2000. When I got my first
injections it was just wonderful It helped me a lot. My next 2,3,4 injections really did not help much. I did get black eyes after getting my first injections but everyone at work was so nice they said my makeup hid it pretty well. I take Klonopin twice daily and get botox injections. Now it seems every 5 months. I think what improved my condition was being put on vitamins. I started taking magnesium,b6,b12
and multivitamins about 9 months ago and I have seen improvement in my symptoms. Lately i have been taking sinus sudafed and that has helped my eyes but I also have allergies so I know that is why it helps.
Please don't be afraid of the shots. My doctor has been very gentle with me it never hurts. You may get some bruises when you get the injections. Keep the faith and this condition can get pretty annoying but as time goes on you will learn to deal with it. I hope your husband offers you support because for you alone this may be a little hard to deal with it. I still work but I was out of work for 6 months. But I'm back now and very happy to know that I can work.
If you ever want to e-mail me i lft my e-mail address. take care.
Priscilla
Re: Newly Diagnosed
Hi Diane,Welcome to the BB! I'm sorry that you have need for this support, but it's a good place to come for answers, suggestions and fun. The biggest boost you can give to your well-being is to keep a sense of humor. You will need it with all the frustrations. You have received good answers from the people above here and I can only add that I was terrified the first time I had Botox ... couldn't imagine having all those needles around my eyes! I have been fortunate in that I don't find it extremely painful, just hurtful a bit at the time, but my doctor is gentle and it's over with quickly. I have had bruising and a couple of real shiners when a vessel has been nicked, but I just explain it to people and go about my business. I don't think you should have any problem with going to work that day. As for the results ... good/bad ... that could take a few days to show. I have been diagnosed for about 2 1/2 years and get Botox every eight weeks. THe results can vary from time to time, but basically they have been helpful. Driving is very difficult for me and I do it on a limited basis in a fairly rural area where I've lived most of my life and am familiar with all the roads. Good luck to you. Don't hesitate to pop in and ask or say anything at any time. There is usually someone around who will reply to you in a short time. Sally in North Idaho
Re: Newly Diagnosed
Thank you so much for the encouragement. I think I have a better idea of what to expect. When my doctor spoke of "slight discomfort" I did not know if that was "code" for "LOOK OUT!!" Apparently he was being accurate. I appreciate your responses tremendously - I know no one with this condition, or who even heard of this condition, so this is real life saver for me. Thank you all so much.
Re: Newly Diagnosed
Welcome to the bb. Sorry about bleph. but it's good to have been diagnosed. The bb has been wonderful for me. However, I don't response often. RE: botox injections. I don't find them very painful, & only notice a slight sting for 30 min. or so. You should be able to go ahead with normal activity immediately. I have had slight bluising a couple of times. The most bothersome for me has been a droopy eyelid a couple of times making driving, reading, etc. more difficult than before the injections. Last time the droopyness only lasted about 10 days. This time it's worse, but am hoping it'll get better shortly. Had my botox 13 days ago.
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