Botox injections for excessive saliva and dystonia

[am2015]

I just wanted to find out if any of your loved ones have had Botox for excessive sativa or dystonia. My Mum is really struggling with both. Spluttering and coughing and has slowly lost the use of both her hands to dystonia. I did post a video a few months ago on the issue, but would love to know your experience. Doctors are very clinical, the real life experience of everyone on this group is so much more valuable.

[VronB]

John uses atropine which is very effective at the moment. X

[am2015 in reply to VronB]

We have been using Atropine for about 8 months, but it is no longer working

[41273416a]

I have had Botox injections for excessive unrelenting neck pain from neck dystonia. It worked well but only for a short time. And you can only receive it every 3 months and the cost was prohibitive. I have PSP and am 71 years old.

[am2015 in reply to 41273416a]

I'm so sorry it only worked for a short period. Have you tried anything else for the dystonia, my mum's neck is arched backwards. It's good to hear from someone who has PSP, my Mum unfortunately has lost all ability to communicate, she is 69, probably in her sixth year now.

[41273416a]

I was diagnosed 2 years ago but started having symptoms about 4-5 years ago. I started deteriorating quite rapidly, I felt, but for the last 2 years have been in a new drug clinical trial and have had certain things get so much better. I do walk with a rollator Walker, to keep myself from falling frequently and have a care giver 6 hours a day to walk with me, help me dress and shower etc. I'm not too bad yet, I don't think. I'm not sure how long we will be able to afford the care giver, but it sure helps. I certainly hope your Mum stops deteriorating . I am fortunate as I can still communicate.

[am2015 in reply to 41273416a]

My mum was also diagnosed about 2 years ago as well. I'm so glad to hear that the drug trial is helping you. Hopefully it will prevent other people and their families go through this ordeal. I'm assuming your in the US, where healthcare costs are phenomenal.

Could I ask what trial drug you are taking, I don't think it will help my mum but may help someone else on the site.

All the best xx

[CM2015]

My mum has excessive saliva especially at night and now takes amitriptyline tablets just before going to bed. They work for her.

Cx

[am2015]

My mum was on amitriptyline, but it began to cause her to be less aware and resulted in urine retention. I'm glad it works for your mum.

[Richard33]

Hi,

My wife has had 2 sessions of Botox (free - care of the UK NHS) for pain in her foot from dystonia. If they can inject the muscle causing the pain, Botox does work. It takes 2 weeks to take effect and then last 3 months or so before needing to be repeated. But the problem is that it is hard to isolate where the pain is coming from and what muscles are involved. But definitely worth it if you can get it for no great expense, as there are no side effects to Botox as far as I can see.

Richard

[am2015 in reply to Richard33]

I think we will definitely need to try it, as nothing else seems to be working. I'm glad it's working for your wife

[loustalet]

We have been usung Astragalus Extract sold by NewtonEverett for several years now and it works well to fight excess saliva. Apparently no side effect.

[am2015]

Thank you, but my Mum passed away a year ago. All the best with your loved one.

[Dosco]

My wife has received botox injections for dystonia in her toes in the right foot. The injections have so far been very effective. Another injection is scheduled in three months' time for dystonia in large muscles that are causing her right foot to turn inwards (pronate?). Botox is very expensive, however, my insurance covered the entire amount. If you have insurance, or can afford it, or live in a country with publically funded health care, I would consider botox if recommended by the neurologist.