| Frequency of Botox |  | ||
| Archive | |||
|
Posted by: Brenda ® 02/24/2003, 17:56:43 Author Profile Mail author |
Hi, I have only had botox injections once, then had additional injections around my nose, cheeks and mouth about three weeks later. By 2 pm of each day I have a hard time keeping my eyes open and now, at 5:50, I am opening them now and then only and struggling to breathe through my nose. I spend the evenings listening to television, sitting back with my eyes closed. I don't know how soon I can schedule the second set of botox. I know I can call the doctor to ask that question, but I wondered if any of you had the same experience when you first started botox. I had the first one around January 23, but my physician admits that he starts very conservatively. My right eye got a droop after the first set but is a little better now. Thanks for any help. |
| | Recommend | Alert | Previous | Next | Current page |
Replies to this message
Re: Frequency of Botox Re: Frequency of Botox -- Brenda Top of Thread Archive
Posted by: Moderator-JB ®
02/24/2003, 19:53:19
Author Profile Mail author
Normally, injections are scheduled at 3 month intervals. It usually takes a minimum of 3 visits to find the most helpful amount of Botox to be used and which injection sites are the most helpful.
Everyone reacts differently and Botox is not the 'majic bullet' that cures the disorder. Sometimes it helps and sometimes not. It does seem to be the best temporary solution at the moment. (in my opinion)
By afternoon most of us are tired. It is 5:45 p.m. now and my left eye is closed for the most part, my other eye tired. Usually a nap is helpful.
Hang in there and be sure to ask any of us whatever you wish.
Judy (who has been at this for 6 yrs.)
--modified by Moderator-JB at Mon, Feb 24, 2003, 20:23:09
Modified by at Mon, Feb 24, 2003, 20:23:09
| Recommend | Alert Where am I? Original Message Top of Thread Previous | Next | Current page
Re: Frequency of Botox Re: Re: Frequency of Botox -- Moderator-JB Top of Thread Archive
Posted by: Brenda ®
02/24/2003, 20:11:51
Author Profile Mail author
Thanks Judy. So, even if the botox is successful, it will not render us symptom free? There will always be some symptom of Blepharospasm? I think I could handle that if I didn't have the breathing difficulty. That is the toughest in my opinion. Do you still drive?Brenda
| Recommend | Alert Where am I? Original Message Top of Thread Previous | Next | Current page
Re: Frequency of Botox Re: Re: Frequency of Botox -- Brenda Top of Thread Archive
Posted by: Moderator-JB ®
02/24/2003, 20:42:04
Author Profile Mail author
Botox works better on some than others. BEB, which is only one type of Dystonia affects us in different ways. It's kind of a 'what you see that day, is what you get.'I've driven probably 5 times in the last couple of years. Just the 4 miles to our local car repair business when one vehicle had to be picked up. Driving was once very enjoyable for me but is now unsafe as I can be blindsided (bad usage of word) without much trouble and eyes will both close quite often.
But I CAN do digital photography! Focus on what you can do, not what you can't.
Judy
| Recommend | Alert Where am I? Original Message Top of Thread Previous | Next | Current page
Re: Frequency of Botox Re: Re: Frequency of Botox -- Moderator-JB Top of Thread Archive
Posted by: Brenda ®
02/25/2003, 07:38:35
Author Profile Mail author
Thanks Judy. I guess I expected, after Botox, that I'd be back to normal again. I am learning more and more from y'all.Brenda
| Recommend | Alert Where am I? Original Message Top of Thread Previous | | Current page
Re: Frequency of Botox Re: Frequency of Botox -- Brenda Top of Thread Archive
Posted by: Rita Molnar ®
02/25/2003, 01:03:43
Author Profile Mail author
Hi Brenda...Sounds like this BEB problem is really troublesome for you. I remember feeling very much like you after I had my first Botox injections--wondering what they were doing to me, and wondering if or how much they would help, and wondering what was in store for me further on down the road with this BEB thing. Let me share some of my thoughts and experiences with you, and I hope that they help a little.
ABOUT MY BOTOX INJECTIONS...
I had my very first Botox injections about 2 years ago. I had been getting them at 3 month intervals...My very first set of injections were VERY successful--I couldn't believe that my eyes were staying open as well as they were. I still did have symptoms, but I also got a great deal of relief. The injections would usually help me for about 2-1/2 months out of the 3, and during the last two weeks of the 3-month intervals, I would bump into walls, and I could not drive because my eyes would keep closing.There were also several times when the injections did not help at all. My doctor (a neuro-opth) keeps a "map" of the injection locations and checks it EVERY TIME prior to injecting, and always asks me first to explain to him the effects I had from the Botox over the previous three months. In the beginning, I faithfully kept a daily diary of how I was feeling, so that my answers would not become exaggerated when I explained things to him during my visits.
My doctor is not open to injecting anywhere else but around the eyes, even though I have Meige. He doesn't believe it will help; conversely, he feels that it would create other problems with speaking, chewing and smiling--not worth the attempt.
Currently, I was due for the Botox in mid-January, but I'm postponing the injections because my eyes have been behaving reasonably well since blepharoplasty surgery on January 13th. I'd like to think otherwise, but it appears that the blepharoplasty offered what is to be short-term relief, and that I'll need to resume the Botox again before long. When I do, it will again be on 3-month intervals, since that is what my insurance carrier limits me to. Also, my doctor feels that it's a good idea to go as slowly as possible with the Botox so that the body will not develop immunity to it.
ABOUT BREATHING...
I never had breathing problems which I could connect with the Botox injections. I do have nasal stuffiness, but I believe it's either sinus or allergy related, or, perhaps in some stupid way related to the BEB or Meige itself.ABOUT BEING TIRED...
When my symptoms are full-flown, I am totally exhausted by the end of every day. (Usually by 5PM) I believe this is from the battle I wage, ALL DAY LONG, trying to stop what my eyes and face are doing. BEB is a very exhausting condition.ABOUT THE FUTURE....
None of us can know what's around the corner for us, unfortunately. But that's not enough reason to become pessimistic about the future. I don't think that anyone can tell you for sure that the way you are now is the worst you'll be. But there are many people with BEB who will tell you that their condition has stayed almost the same from the beginning. Some will even tell you that it has gotten a lot better. And there are some, I understand, whose symptoms disappeared altogether.
We are all so different.Until several years ago...before Botox...there wasn't much help out there except drugs (with sometimes bad side effects) for BEB sufferers I can remember that that neurologists I'd seen didn't even know what BEB was, and that wasn't too long ago. Currently (much credit to the Foundation) research is ongoing, and maybe some major breakthrough will happen before long.
Regarding my own experience, my BEB condition has stayed pretty much the same since my diagnosis about 2 years ago--some very good and some very bad days--but that's the nature of this thing, so it seems.
Three things have been EXTREMELY HELPFUL TO ME in this battle, and I'd like to share them with you:
(1) I'm convinced that the Botox, through trial and error, has made a tremendous difference in the symptoms I would otherwise be experiencing.
(2) I've learned that stress adversely and directly affects my symptoms. STRESS ALWAYS CREATES A "BAD DAY" for me. And so, I keep working on ways to both relieve stress in my life, and to learn to handle it the best I can.
and(3) And, I remain close to this BB...always learning from other people, and keeping my eyes open for anything that might help me...
My best wishes to you as you go through this difficult time. I hope that you can soon feel some relief, and that you'll have many sunshine days ahead of you.
Rita in New Jersey
| Recommend | Alert Where am I? Original Message Top of Thread Previous | Next | Current page
Re: Frequency of Botox Re: Re: Frequency of Botox -- Rita Molnar Top of Thread Archive
Posted by: Brenda ®
02/25/2003, 07:37:03
Author Profile Mail author
Thank you so much Rita! I know I've taken a lot of your time with all of my questions but I really do appreciate your answers. One more, if you will. Do you use the ointments or the drops...that is, I'm assuming, you have the extremely dry eyes like I do. I try the drops but it just seems that the ointment (even during the day) is more soothing than the drops. I think that is all...I have 8 grandchildren, 5 of whom live here. I've always been the "ememgency" babysitter, and would keep some overnight at least 2 to 3 times a week. Most of my kids are concerned and supportive...I just have one that is in mourning because I would keep at least 2 of her 3 kids at least twice a week, driving them to and from school, etc. I am trying to focus on "good" things that I CAN do..I can still paint, at least most days. I paint portraits. I used to be commissioned quiet often, and will attempt one soon. I just hate to lose my independence. What about travel? Can you do any traveling? Anyone play golf? I tried one but it was so windy that it set me back a couple of days. I have since gotten some "wrap around" glasses to try on still days, if the sun isn't too bright.Brenda
| Recommend | Alert Where am I? Original Message Top of Thread Previous | | Current page