Dystonia


#1
Hi I have advanced parkinsons. I am on singlet, requip 5 times a day also entacapone 4 times a day also clozonopan. I spoke to my consultants secretary earlier this week and she after a discussion with my consultant advised that I should also take either gabapentin or prevailing due to extreme pain and inability to walk. Spoke to my surgery today and get flatly refuses to prescribe either without a consultant letter. Both my consultant and Secretary are now off sick!!! I have no idea what to do as cannot sleep either, at the end of my tether. Thanks

#2
Sinemet and advised pregavalin

#3

Have you a Parkinson Nurse you can contact?

or, whoever will take over the consultant's cases while he/she is off sick?

Best wishes

S


#4

 

hi

i'm going to stick my neck out here, I would be very careful in considering Gabapentin my Girlfriend had an addiction to it, it eventually controlled her, her Gp had too get specialist advice in withdrawing from it, the a pause, although you are in pain, might of done you a favour, there are im sure other choices.


#5

hi alan

                  my pd is advanced as well very aggressive ,i also have alot of pain also find it hard to sleep i take 8 tramadol -12 gabapentin =3  amitripyline & 1 zopiclone for sleeping also have facet joint injections & epidural for severe pain every 6 months maybe you could have chat to gp to refer you to a pain specialist, also have you considered dbs for dystonia


#6

Hi alan,

I was also px gabapentin for back condiiion i got, very effective for pain but i suffered geat hair loss, so i came off the drug as gp suggested,  the pain was really bad and thought i was losing the plot. when looked at the drug reviews on line it was frightening how many people couldn't come off It. wish I knew before I took It. pregabalin belongs to same type of drug also. Hope you get sorted.

Ollybex


#7

I visit fellow veterans who have advanced PD so I know how painful advanced can be.here are two things you might look into.Quinine has helped many but it can be tricky and has to be monitored.Botox shots help considerably for dystonia and can last fro several months.Sinemet has controled mone very well if I keep up the dose.AS far as gabepentin it does help with neuropathy but I cant take it cause it makes my jerks much worse.I also have found many take hot showers ,a whirlpool would be so helpful for many.

I know it can be hard finding good care but stick it out with you have and be firm.Only us can have the final word what care we get.

Take care

john