Re: How Often Get Botox?
Tim,
I think many of us struggle with that question. I get them every two months and they don't last the whole two months. Botox has never been very effective for me, but it does help some. It is unlikely that you will develop antibodies by getting botox every two months at the dosage that is normally given for BEB. Doctors differ in their opinion about that, I guess, but from what I got at the conference, I am not hesitant to have injections every two months.
Virginia in AL, expecting our first real frost tonight
ReFrequency of Botox and my own Dilemma
Hi Tim. Good to see you posting. We've missed you but know that you have been having a rough time.
I've been one of those people that the botox only lasts about 8 weeks for. It's a tough question that you ask. It is for all of us. Sometimes our decisions are dictated by what our doctors will or won't do and sometimes the decisions are left up to us. The decision for this one has been dumped in your lap and there are no easy answers. I opted for an 8 week schedule in the past because by 9 weeks, I was miserable and at 10 weeks, I was non-functional. I think that you just have to weigh the pros and cons and go with what you can live with.
I'm 12 weeks post botox right now but the new medicine, Parsitan, that I am taking, I believe, has contributed to me being able to go this long. I'm having my local MDS do my injections this next time and he really likes to wait the three months. I agreed as I knew that I would be starting the Parsitan and I was hoping that it would help. Things aren't great but things have been bearable most of the time. I'm definitely ready for the botox, though.The doctors at the conference did say that they really tried to get their patients to a three month schedule. In saying that, they were also saying that they changed sites and dosages to help do this. Is your doctor working with you on this? Virginia had a recent experience with a new doctor that told her this also and that he would change things to work with her to get to a three month schedule. This means that a doctor has to make adjustments in how he is injecting you. Things won't change if the doctors don't. Then you can also throw in what Delaine's support group meeting talked about with the botox occasionally not being up to standards and it doesn't make one feel real comfortable. We're sort of at the mercy of a lot of different variables. Now, haven't I made you feel better? :-) So, why didn't you ask an easy question? Since I can't answer your question, I'll tell you my problem. I'm scheduled for botox this Monday. I got a phone call Friday afternoon at 5:20 from the hospital where my MDS does his botox injections. They tell me that my insurance won't pay for having the injections done in their facility as it could be done in his office. I've had it done there before and the same HMO paid for it. The lady told me that the hospital has been negotiating with my HMO for some time over this but they are saying that it won't be paid for. She asked what I wanted to do? Did I want to reschedule? (Yeah, Right) Of course, my eyes have squeezed closed at this point as I asked why she had even bothered to call on a Friday after office hours when my appointment was first thing Monday morning. She very perkily said that she would be happy to tell my MDS that I wouldn't be there Monday and let him know what the situation was. She then said that I could reschedule for another time. I'm thinking "DITZ" you don't have a clue why I'm getting the botox. She mentioned something about she was sorry if I had to take a day off from work and it wasn't necessary. (Screaming inside now and eyes won't open). I asked her to get in touch with my MDS through the medical exchange and let him know and ask him what we could work out. She replied that number was only for emergencies and she couldn't do that. She then offered me the number to call in the phone book for after office hours (now I'm wondering how she got the job of office manager of a hospital?). I calmly replied that would be the emergency number that she was talking about that "SHE" couldn't call. I told her that once my eyes opened back up that I would be able to locate that number on my own. I then asked her why no one had bothered to call me earlier in the week when I might have been able to do something about the problem myself? She sweetly answered that they had been working on it for several weeks now and thought that they could take care of it and what did I want to do about Monday? I told her that I would consider it over the weekend and let her know first thing Monday morning when I either showed up for the appointment or didn't. For some reason she didn't like that answer. Apparently it didn't fit into her plan.
I love people's organizational skills.
Sorry to vent but I think that I feel somewhat better now but you still don't have an answer to your question. Sorry that I couldn't be of more help to you.
Shirley in Arkansas who may or may not get her botox Monday or Tuesday or Wednesday----------yes, Mindy, I am deep breathing.
Re: I have a story, too
Shirley mentioned that I had seen a new MDS, who impressed me with his knowledge of BEB and his willingness to work with me on my "other than eye" Meige symptoms (breathing being the one I was most concerned about - I really like being able to breathe). The appointment was 10 days ago, at which he said he would set me up for botox within the next couple of weeks. I waited a week for a call from them and, having heard nothing, called them. The botox scheduler said she could work me in sometime in January. I protested; she said she'd get back with me and I still haven't heard from her. I will call again on Monday. It's especially hard because I was encouraged by his attitude and experience and now it is a real let down because there seems to be a lack of communication between the doctor and office staff. I guess we all go through these ups and downs, but it never is easy.Virginia in AL, trying to keep breathing (deep or otherwise)
Re: I have a story, too
Virginia,
The office staff can make or break a doctor's practice. I have stopped seeing doctors before because of the nurse or receptionist. If you can't get past them and to the doctor, things just aren't going to work no matter how much you like the doctor. The only option that you have is to write to the doctor or talk to him in person (if you can get past the nurse or front desk) and let him know that you want to be his patient but his office staff is making it quite difficult. Sometimes, I don't even think the doctors know what is going on "out front". In other cases the staff are following his orders.
Make an issue of it if you really want to see him. But watch out for the fallout from the nurses whose toes you step on. :-) They are not all as nice as Delaine and I.Shirley in Arkansas who has been having internet problems and has been "doing without" (internet service) off and on for a week, now. :-(
Re: Parsitan
Shirley,
I have gone back and forth on whether to try Parsitan. Have you had any adverse side effects? How much is it helping you? I have had such a hard time the last few weeks I may reconsider my decision. Thanks for the help.
Kelly
Re: ReFrequency of Botox and my own Dilemma
Hi Shirley Do you still go to St. Louis to
get your botex? The way they are doing you
doesnot sound like St. Louis
Hope you get some help soon. Colleen in IL
Re: my own Dilemma
Hi Colleen. You are right-it does not sound like St.Louis and isn't. I'm trying to work with a local movement disorder specialist as my husband will be looking for a new job in the near future (he took an early retirement buyout) and I knew that it would not be feasible to continue traveling 7 hours one way to get my botox. So, I am trying to train and break in a new doc for myself. I have found one that I think that I can work with. The fiasco I was telling about was not of his doing but where he does the injections.
I did wind up getting the injections but in a very devious manner which I won't go into. I'm waiting to see how they work out. I know that we will have to do some things differently next time as far as injection sites and the concentration of the botox is concerned. I do wish that I could continue to see Dr. Perlmutter in St. Louis. I was quite pleased with him and comforted by the fact that he knew more about this than I do. That is not the case with who I am trying to train. He is very nice but he didn't know who Mattie Lou Koster was. He does now. Shirley in Arkansas-where we are having cool nights and days in the low to mid 60's with the sun shining. It's really pleasant weather.
Re: How Often Get Botox?
tim, when my injections wear off the pain is so intense i have to have them right away and my eyes muscles completely lock up. i think the quality of life on a day to day basis is important here if you can't go longer than that. However, the new info from the conference about changing both the sites and the dosage is obviously something that is effective perhaps in extending this period. lynn, another guy on this support group also mentioned this as something that worked for him and also requires thought and work on the part of your doctor as well. i haven't touched on this yet with my doctor yet, but maybe if we all start to mention this as a way of extending the botox's effectiveness, we can arrive at some sort of answer. as shirley said, this will take time.
Re: How Often Get Botox?
I too receive botox every 2 months and that is marginally effective. I "live for the moment" at this point in my life and just can't worry about what could happen in the future. My kids are 3 and 6 and I have to care for them. I did try to stretch to 10 weeks ONCE and was kicking myself by 8 weeks! I still have 1 1/2 weeks until my next injections and my daughter is going to start riding the school bus Mon because the 1 mile drive at 3:00 ( I go down hill as the day goes on) is just too much for me. My doctor did modify my injection sites this last time using a model from the conference and I have done worse instead of better. It is all trial and error and everyone is different.Kelly in Dallas where we are still wearing shorts!
Re: How Often Get Botox?
I'm curious tim, How much klonopin do you get? Also I am looking into the quality control of the potency of the botox. It seems to vary a lot. Even some of the Doctors say so. I am having trouble seeing right now since I would give my last shot a 1 out of 10. 10 being the highest. Ann D.
Re: How Often Get Botox?
Tim I know you and some others are faced with this dilemma of the
botox interval time. What I have learned from other blephros and this
bb and the conference is that two month intervals are acceptable if
the doses are reasonably low (I believe they are for blephs and meige;
it's the folks with cervical and dystonia affecting larger muscles who
receive much larger dosages) and if the doctor is receptive to it, which
yours is. I have been fortunate so far in that the botox is effective for me--it's now a matter to maximize injection site placement and
amount of toxin. I on on a 3-month schedule and I notice a definite
decline and increase in symptoms during the last month but so far I have
been able to keep it in check with the meds. I have this breathing irregularity and Virginia and some others have and this is a bit more
complicated to address and getting some kind of balance in the lower face and neck area together with meds to give us relief. Sorry to hear about your delay with the new doc, Virginia. Keep pushing. I had a month followup visit with Dr. Chung (my new neuro in LA)and after
evaluating the last set of injections, he agreed to do more in the neck
area so we'll see. I'm due beginning of Dec. Anyway, good luck with your decision. Currently myobloc is just approved for cervical dystonia--hopefully it will soon
be approved for blepharospasm as that might be another option for you.
Drs. are using it for blephs now but I don't know if insurance will cover since it is not FDA approved for blephs. Take care and I continue
to pray for you. Joanne M. San Diego, CA
Re: How Often Get Botox?
What is the maximum ammount you can or do recieve for klonopin and what is the differenece in klonpin and paristan for those who have tried both? Ann D.
meds
Ann,
Below is a link to the Dystonia site where meds are listed. Parsitan and Klonopin may be taken in combination. They are different kinds of medication, thus have different ways of acting on our disorder. I don't take Parsitan, so can't answer your question directly, though.
Virginia in AL
Related link: http://www.dystonia-foundation.org/faq.asp?r=8#q13
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