Botulinum injections for Dystonia


#1

 Has anyone any experience of Botulinum injections  for Dystonia please? I have had Parkinson;s for 9 years now  but also have had CRPS for 3 years in my foot. Am taking Requip & Sinemet. Thanks. Meg


#2

Hi Meg

I hope someone who has had Botox for dystonia will post about their experiences. In the meantime, our information sheet on Muscle cramps and dystonia does mention botulinum as a treatment. There may be other useful information there for you as well. 

I have also found an article on the NHS choices website about the use of this treatment. 

I hope this helps,

Ezinda


#3

 Thank you for your comment. Yes I have looked at the 2 sites.   Thanks Meg

 


#4

Hi meg i have had pd for 10 years now and i am suffering with dystonia in my right foot the nurse has suggested botox i would like to hear from anyone who has had botox.

The only way i can relieve the pain in my foot is to put my foot on something warm,hope this helps


#5

Hi meg i suffer with dystonia in my foot,i have just been to see the gp about botulinum but am rethinking about it. For some it can work it doesnt get rid of it it just helps to relax the muscles, but it could affect your walking it just dependes on how you react to the injections. Hope this helps.


#6

Hi Meg great to meet you today at the Parkinsons conference very interesting meeting

 


#7

UPDATE.........I didn't know where to put this on the forum but  here goes am gonna put it here.

                      My wife was diagnosed with PD in October 2013 she managed to stay in work for 12 months ish but has been off work for the last 9 months.currently she is pursuing ill health retirement and wont be returning to work. Her meds started off on 3x sinemet tabs a day then it was upped to 4 she was also taking citalapran 30mg.anti depressant because she got upset easily.

                      After seeing the consultant he recommended to take Rasgaline ( Azliatec ) but by searching this forum we found out she couldn't take citalapran with Rasgaline. We spoke to our GP and my wife came off  citalapran and whent on Mirtasapine, she started off on 15 mg and was suppose to up it to 30mg but has stayed on 15mg, this combo has made feel better.

                       Also my wife started doing acupuncture she had it once a week for 2 weeks and felt a bit better .Then the accupuncture stopped for 2 weeks why the acupuncturists went on holiday.My wife said she felt ok but not as good when she was having acupuncture. She started it again and has been going again for the past 3 weeks and  feels better again.

                         Anyway to sum up we think coming off 30mg of Citalapran and the acupuncture have helped a lot, she feels better in herself and that is half the battlle

                        All the best i hope this info helps someone.......Billywhizz

 


#8

Hi Billywizz

did I read that you And your wife live in Cheshire?

we do too having moved back from France just ove,r a year ago

i am 64 and have had Parkinson's for 10 yea rs

i was diagnose,d in France

meg


#9

Hi Meg, as you did not seam to get much come back to you on the injections question i thought I;d let you know how I control my Distonia. I use a drug called Apo-Go. It is very effective in correcting the Distonia within 10 minutes of an attack you can also use it at a preventive.

I find an attack happens if i am late with my PD meds or I get Cold or very stressed out.

Hope this Help's.

BB XX


#10

Thanks for your help

My situation has changed so am on hold at the moment

Meg


#11

I have a variety of dystonia called blepharospasm  (which means my eyes clamp shut, often as many as 120 times a day) which has been treated with botox injections with diminishing returns.  It started  after I had DBS, and the treatment team has run out of ideas. It gets worse progressively through the day.

 

 


#12

I am sorry to hear this Stephen I get really peed of when mine rears its ugly head but at least it is not anywhere near my face. Have you tried APO-GO Injections?


#13

My main symptom, tremor in my hands is largely controlled by a relatively small amount of medication, plus the DBS (which works when it is either switched on or off, it makes no difference).  That is until the blepharospasm came along, in the delightful way that these things do with PD, for little did I realise that such a small thing  could have such a large impact on my life.


#14

Ask for a med review they might have something to add to your mix that might help x


#15

Hi Stephen

I have a similar problem, Blepharospasm /Dystonia. Botox injections around the eyes is the best that I have found but not reliable enough to drive again.


#16

Wow, Zap, you are the first person I have found to have similar problems!  Have you had DBS?  I have had four sessions at the botox clinic, with diminishing returns and increasing doses, the last being effective for just a few days.  I am not having more. 

Having to stop driving is a pain, but more so is my inability to cross a road on my own. Do your eyes shut as often as mine do (up to 120 times a day, getting worse in the evenings)?  It feels more the default position to be shut, such is the effort involved in getting them open.  Have you found any tricks to open your eyes? 


#17

My eye spasm problem started soon after I was diagnosed with Parkinson's early in 2013. My eyes were often blinking all the time and some times closed more than they were open. I found it very difficult to hold them open at the peak of a spasm and like you it was not safe to cross a busy road or drive. They were worse in the evenings, watching TV or a PC screen was impossible as it would set them of again. I have not had DBS, just the normal Parkinson's drugs. I have not found any tricks that would hold them open. Often the Botox injections would have side effects of their own. Mainly double vision but this would only last a week or so, thereafter my eyes would be good again for a couple of months and if I am lucky I am able to drive again, just short distances around the village. 

 


#18

HI Shaking Stephens

That must be very pain full i get dystonia in my feet and that hurts. Its my left ankle that hurts the most because it  turns to the left.They have put me on some tablets to see if that helps, its helping a little. They said to try these before trying the botox injections. So we shall see.

                                                                                              From Zo


#19

Hi Billywhizz

Sorry to hear about your wife,i was diagnosed with pd 11 years ago. I have worked up to this year and i am trying to finish work on ill health but not having a lot of luck. Let me know how your wife gets on.

                                                                 From ZO


#20
Hi Zo. What you have said resembles what happens to me. What are the tablets you are on becase there is an injecton that works in minutes called AP=GO. XX