Botox treatments for dystonia - experiences, opinions, advice?

@cinar73 Hello cinar73, thank you for opening this discussion. I've moved it to our Treatments for dystonia group for more visibility.  Let me tag some other members who can potentially share their experiences with you.

Good morning everyone, how are you today? Have you tried botox injections for your dystonia? Has it worked for you? How many treatments did you undergo? Do you have any advice to share?
@Audrey#‍ @GillWil‍ @Gemma2803‍ @Cervicaldystonia‍ @Mazza1959‍ @whoami‍ @Paulphi‍ @Bjacko‍ @Gentyc‍ @joanne4142‍ @AngelaHackworthy‍ @Zozime‍ @Woolydee‍ @Walletr‍ @Mand_0‍ @Mazz73‍ @KATHRYNM‍ @deirdra‍ 

Feel free to share your experiences and advice here, we're all here to support one another!

Take care,
Courtney

I have had focal dystonia in my neck for 15 years. This is the first time that I have had my appointments cancelled due to covid 3 times (9 months now) and been getting steadily worse. My next appointment hopefully is 2nd October. Anyone else in the same boat?

Cinar73 hi, they've got to hit the right muscles, also they start with a low dose and gradually increase until you get maximum relief. Excercise also helps. Go on line and look at excercises for Dystonia. If they inject you in your mastoid muscle make sure they do it at either end not in the middle you can have problems with swallowing. I had mine done a couple of weeks ago and he got a bit too close to the middle and i am having to swallow all my food twice to get it down. Just some useful advice. 

Cinar73 Hi, I have had Cervical Dystonia for 35 years and been receiving Botox treatments for the past 23 years.  As Creamware2 said, they have to find out what is the best dosage for you.  I started with Botox injections and didn't get much relief so my doctor then tried Dysport which I have had ever since.  I find that the longer I go between injections tends to make my symptoms much worse, hence lengthening the period when I start to feel release from the symptoms after treatment is given.  The optimum for me is 13 weeks between injections - I can then lead a pretty normal life constantly.

My injections are quick and pretty well pain free plus a lifeline for me to live my life normally.   Persevere and you will soon find out what suits you - like every medical treatment, it takes a bit of trial and error to get the best relief for you, be sure to tell your doctor about the problems you are having rotating your head at your next appointment, or even prior to that if it is really bad - they can offer you some additional relief with tablets or recommend physiotherapy which can also help enormously.

Creamware2 - my injections were cancelled at the beginning of lockdown, as I am a key worker in the NHS I got my GP to send a letter to the Neurology dept at the Hospital and also contacted the head of department myself.  I managed to get a cancellation so was only a couple of weeks delayed in the end.  My advice is to keep contacting them if your symptoms get bad as it has a huge impact on your quality of life and also ability to work affectively.  Good luck - keep us posted if you got your appointment on 2nd October. 

Hi, I had my appointment on the 2nd Oct and things have slowly improved,  however things like driving become limiting due to increasing pain so they never seem to get it quite right.  I get the same dose every time (150 mlts) I think regardless of what I say to the consultant.  I sometimes wonder if he knows what he's doing.

 İ would like to thank toCourtney, creamware2 and Mazza1959 for your effort to make me feel better. I had my 3rd botox injections on The 6th of november. Since then I have been feelings much better. I can control my head, keep my head straight which makes me on cloud nine after many months. I Just have the feelings that i have stiff neck but i hope it will be better after my next botox injection. Thanks again for your help. 

Hi everyone

A few months ago I was diagnosed with cervical dystonia.

A few weeks back after seeing a neurologist I received my first treatment which was two botox injections in the neck and two botox injections in my upper back.

The neck ones are fine but after two days of treatment my upper back is really sore I can only describe it as a burning stinging sensation and I am at a loss on how to make this painful discomfort go away.

I saw my neurologist and he is at a loss as to why this is happening.

Has anyone else experienced these symptoms.

I now wish I had never started the treatment.

Any help/guidance would be appreciated.

Thanks

Hello @Sundaychild‍, thank you for your comment, I've moved it to this discussion in our dystonia group for more visibility. Let me tag some other members who can possibly share with you! 

Hello everyone, how are you doing?

For those of you who have undergone botox injections, have you experienced the burning, stinging sensation that @Sundaychild‍ describes? If so, what did your doctor say? Did it go away? If not, can you offer any advice?
@Sandokai‍ @Widjaja‍ @lynndoconnor‍ @Tillybilly‍ @Creamware2‍ @cinar73‍ @Joanne41‍ @danimaddonnigmailcom‍ 

Don't hesitate to share with us here!

Take care,
Courtney

It may take several sessions of Botox treatment to achieve the desired results. Communicating openly with your doctor about your progress and concerns is very important.