Hello everyone, does anyone have experience with using Botox for Ataxia specifically for facial twitches and dystonia. My neurologist Dr. Suzane Perlman referred me to two specialist in the movement disorder Center at UCLA to receive Botox injections on my neck and face. My appointment is this Friday. I’d love to hear more about this.
Hi. My friend is getting it on her legs soon
I've had botox injections for the muscle tension headaches/migraines I get with gluten ataxia and they really helped me. Now that i am on a gluten free diet, the tension is resolving on its own. The shots dissolved the tension in the back of my neck at the base of my skull immediately. Unfortunately, the effectiveness wears off after 2 months or so; and you can only get them every three months.
I will offer a word of caution about potential side effects. There is a small chance of muscle paralysis (I believe temporary but not sure), so getting shots in the face would seem riskier with all the delicate facial muscles. They warned me a a potential drooping eyelid since several of my shots are in the forehead. Seriously consider side effects before proceeding. good luck
Thank you so much for the advice, I will definitely consider this. I will say that a few drooping muscles will. Be far less painful than the dystonia pulling my bottom jaw out over my top jaw. So very painful and with it I can not speak or eat well.
Hi! I received an injection of regeneress, which is similar to botox, in my vocal cord. It was to enlarge the one side that is paralyzed. It was relatively painless and helped my speech and swallowing a lot!!
That’s good to know, thank you. Ill ask the doctor about this.
used Botox for bladder problems - didn;t work for me!(MSA sufferer)
Yes, Linilu, I also had Botox injections for urinary incontinence and they did not work. I recently had TVT surgery and am almost 95% better! FYI... ;o)
Although I don't personnally have experience with Botox injections for you problems Lavender, for what it's worth, I've heard they can be very helpful...best wishes to you!
I have had botox injections for over 3 years now into my salivary glands (3 injections on each side just below the ear) They are used to stop the excessive production of saliva in my mouth - stopping me from drooling. They are quite painful to have as I have no anethsetic. Initially, they worked well, but after about 18 months my body became adapted to having them, so the dose was increased. I am finding that again now, so next time I go (every 3 months) I might ask for the dose to be 'upped' again, other than that, I have no side effects.
Thank you every one! I feel less alone with you sharing. I sure hope they use a topical anaesthetic. Ill keep you all informed. Here’s to more needles…less pain and distortion. Think happy thoughts
Hi there! Yes, I've been receiving botox in my face and neck every 3 mos for the past 10+ years since I was 22 y/o...and I'd say, it has been a LIFE-SAVER!! The facial dystonia was the first symptom that I had been experiencing related to Ataxia and it was unbearable to me. I must say that the first two years or so, it really was a matter of trial and error -- trying to figure out which muscles to target...having many errors along the way: droopy eyelids, inability to smile, affected speech, etc. But the good (also bad) thing about botox is that it is temporary. The actual procedure itself isn't that painful...depending on the number of injections you will receive, but I must say: IT IS ABSOLUTELY WORTH IT!!
You can read more about my story on my website: www.sunnyprom.com/sca3
Best of luck to you tomorrow!
Hi Patsy, having the dystonia in the face must be extremely painful. Hopefully my Ataxia will not extend to the state you have had it since years. Mine is still not really defined, but as i have a clear family history with SCA6, this could be SCA6. i have got also extra health problems, probably associated with gene mutations. These have been - for the main disorders - psychoses (after child births) and bone marrow changes which ended in acute myelogenous leukemia.From the four siblings of the family of my mother all are affected somehow, but only two show the clear traditional features of SCA6. Well, SCA6 has differentiations. My genetesting results, avaiable in so 4 or 5 weeks will show if i would have inheridated just this SCA6. Rest would be mystery or more genetic testing. My family has been affected by migration and war, but not in the extent as yours. i admire your coping with the disease, always smiling. Wishing the best for your family and you! i would like to try out a PEG, to see if i could handle it easily. With my history of swallowing difficulties and perhaps also lung diseases (already got a diagnosis for asthma bronchiale, COPD Sleeping apnea, and other) it could be that i would need it one day and i fear the siuation that i would not be prepared for it and without sufficient help. Some years ago i provided - bed-sitting-assistance to a man after stroke, he also on PEG. The problems in a caring home sometimes affect the hygienic handling and i would prefer to know how to manage this my myself, and educated my assistances, if necessary, at home, and not live in such an caring home. Also i have read from PEG that patients are mostly not allowed to be mobily id est - mobile= wheelchair driving by themselves or walking. Is this correct? Anyway PEG is for another thread. Have a nice weekend.
Kind regards to all, Akita
My husband looked it up last night the name of the injection is "radiesse". It is fda approved to improve the voice...I hope you find relief!!
That's good to know, thank you. Ill ask the doctor about this.
What an adventure… My hopes of combatting my dreaded facial tremors and dystonia came to a screeching halt a couple days ago. I traveled 4 hours each way which in of itself is difficult, only to learn from the Doctor at the UCLA movement disorder clinic that to give me botox injections in the are of the jaw and neck was too risky because it might couse problems like swallowing and breathing. Even after they witnessed a mild seizure like event they said no.
I was so disappointed and upset because my jaw was only one area that needed attention. It would have been nice to have had something for my eye twitches and cheek dystonia too. We left 2 hours after we arrived and drove the 4 hours back home with complete amazement.
What was prescribed was more cogentin…lovely more drugs! I think I may reach out on my own for the injections I need and have to pay cash now that I was denied by a physician covered by my insurance. Very confused…and disappointed.
Bummer, Lavender!! What kind of discomfort are you experiencing exactly? Were the muscles that you wanted to target deep below the surface in the neck-area? As I've said before, I've been getting botox injections for 10+ years as I feel so much tension in my face and neck area that I feel as though my face were contourted and one of the areas that I get treated every-other 3 mos is the superficial lateral neck muscles...I call it the 'pterodactyl' look! I also used to get my masseter jaw muscles injected every 3 mos but noticed significant weakness and difficulty chewing, so I haven't had any botox in that area since 2003 bc I haven't really felt the need to...somehow the dystonia in my jaw has dissapated for the past 9 years! My neurologist essentially focuses on superficial surface muscles which is all I really feel that I need...I say that he's my angel after each treatment! I'm sorry that you couldn't get any relief from what you are experiencing...it's incredibly frustrating, I know!
Thank you Sunny. The area is deep in the neck and the doctor felt the side affects would be to risky in my neck. I also have what feels like pulling and stretching with my forehead and jaw. Because not all of the results from the genetic testing is done they want to hold off until they have a firmer diagnosis with my cerebral ataxia. Hopefully I’ll get some relief with my facial tremors by increasing the cogentin. The side affects are extreme fatigue and dry mouth with vision problems…everything is blurry.
I don’t know, it is all so over shelling. One would think the patient could select what risks are tolerable.
I'll be praying for you... it's good to read others' experiences with botox. Hoping it might be helpful to me as well.
Keep us apprised...all the best