Posted by Judith Hallowell , May 05,2002,20:11   Archive
I am new to BEB and am trying to work with an eye doctor to hopefully control the spasms. What are small, medium, and or large amounts of Botox? Allowing for individual response, where do the injections generally work best? Have had four shots in each eye area (lids) and several above the brow. I have a feeling that injections in the cheek muscle below the eye would be of added benefit, but am functioning now, and don't want to push the doctor until more pressed. The trouble is I know I'm not going to last 3 months with the injections given. Do you have to wait 3 months before a second serries? And if so, how many units of Botox need to be given to require a 3 month hiatus?

Thank you for any and all information.
Related link:

Recommend Current pageAuthor Profile
Replies to this message

Re: Botox

Re : Botox --- Judith Hallowell
Posted by Virginia , May 05,2002,22:27 Top of Thread Archive
There are no easy answers to the questions you pose. Some doctors have standard injections sites and some will watch to see where you seem to need them most. Some have standard dosages and others will adjust in future treatments. The best thing you can do at this point is to be observant about how you respond to the injections - keep notes that you can take back with you. If the doctor won't work with you, you may need to change doctors. Most of us have been through several.

Doctors also vary with the three-month wait. I had my second set of injections a month after my first. I normally go every two months, but that may vary. Treatment for BEB must be tailored to each individual and that is one of the tough things about getting relief. You might also ask your doctor about meds that may help you in addition to the Botox. Good luck and welcome to the BB.
Virginia in AL

Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
  • Re: Botox --- Judith Hallowell ( May 06, 18:50, 2002 ) Re: Botox/WELCOME

    Re : Botox --- Judith Hallowell
    Posted by June in Toronto (June Floyd,June in Toronto), May 06,2002,07:28 Top of Thread Archive
    Welcome to the bb, Judith. I couldn't access the link you provided.
    I get 90 units of botox in the two eyelids - and approx. 10 injection points in all around each lid and in the brow area. I believe the limit has been raised (recently) from 100 units to 150 units of botox for the 2 eyelids. So 90 units is in the middle range (now). This dosage not take into account what people might get for meige symptoms. Some doctors choose to inject every 3 months max, but others might do it sooner. I go around 4 months between injections. Its good that you are working with your doctor to achieve the best results for you - only you and he/she can do that - we can't tell you, as it all differs person to person. Good luck - keep posting.

    June in Toronto (beb/meige)

    Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
    Re: Botox/WELCOME

    Re : Re: Botox/WELCOME --- June in Toronto
    Posted by Judith Hallowell , May 06,2002,18:52 Top of Thread Archive
    Thank you June. Am printing out your message to take with me to the Doctor. Judith

    Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
    Re: Botox/Welcome

    Re : Botox --- Judith Hallowell
    Posted by Sally - in - Idaho , May 06,2002,21:59 Top of Thread Archive
    Welcome to the BB, Judith. You will usually get answers quickly here, or at least leads on where to go for more help. I have Botox injections every eight weeks, 90-100 units total each time, in five or six injections around each eye. That is something that your doctor has to gradually work out to suit your needs.

    Post often and ask whatever you like, or feel free to make comments and suggestions. Bring your sense of humor!

    Sally in North Idaho

    Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
    Re: Welcome Judith

    Re : Re: Botox/Welcome --- Sally - in - Idaho
    Posted by debbie campbell , May 07,2002,17:44 Top of Thread Archive
    Hello Judith,
    Welcome to the BB. These is so much information shared here so read and post when ever you can. It has helped me emmensely.
    I have just had my second set of injections of botox and I received 50 units in a total of 10 sites, 5 each eye. My first injections were 25 units and only lasted a week. Since my second set, my eyes have been open since the April 1st and doing pretty well. We are still trying to figure out the right dose and sites and I understand this can take considerable time but so far I am feel very positive about the treatment. My eyes are not as bad as some on the BB. My eyes don't squeeze closed at all but instead just slowly close and I am unable to open them. I have no pain at all. The only thing I do have is grimacing, while I am trying to keep them from closing. Doing this is very exhausting if I am stressed at work or out trying to do some shopping and I am struggling a lot but as soon as they close, my face just completely relaxes.

    Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
    Re: Botox/welcome Judith

    Re : Botox --- Judith Hallowell
    Posted by Pippa , May 07,2002,17:48 Top of Thread Archive
    Hello and welcome Judith!
    I am fairly new too to beb having had it diagnosed in December. And since my first injections (100 units)were not as successful as my consultant hoped for he has given me me some more (but much weaker) just 8 weeks after the first lot. But he has warned me that i will have to have them at three monthly intervals in the future. What makes you think you will not be able to last that long? Are the effects wearing off? Did you get good results with it? i think there is a school of thought that the body will get used to high dosages of Botox and it will stop being so effective after some time, so they like to have a gap period in between injections.
    How soon after getting the injections did they start to wear off?
    Pippa, from Scotland.

    Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
    Re: Welcome Judith

    Re : Botox --- Judith Hallowell
    Posted by Shirley-Arkansas-USA , May 07,2002,20:34 Top of Thread Archive
    Hi Judith and welcome to the bulletin board. You've asked some good questions but, unfortunately there are no hard and fast answers.
    Others have already responded and I would just like to add my welcome and put in my 2 cents worth on your questions.
    BOTOX, just given for BEB can be in the area of 25 to usually a 100 units. A few people may requre more. This is a combined dose for both eyes. Doctors vary as to how much they will give. Some have a standard of 50 units and split the vial between two people. Doctors also vary as to the sites that they inject and they usually start out with what they consider a low dose or a standard dose and standard injections sites. After that, they really should individualize the dosage and sites. Some people's symptoms are controlled at 40 units, others may have to go up to 100 units or more. Some patients don't respond well to the BOTOX at all while others just have a lessening of symptoms.
    Most people get their injections approximately every 3 months. Others get them every 8 weeks. Most doctors won't do the injections closer than every 6 weeks. Here again, everyone is different and the trick is to find a good physician that will work with you and tailor things to each individual.

    In other words, it is a lot of trial and error and sometimes slow and frustrating.
    Take care and again welcome.

    Shirley in Arkansas

    --modified by Shirley-Arkansas-USA at Tue, May 07, 2002, 20:34:41

    Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile