Sativex for RSD and is eplilepsy possible ???
 

As many of you know Ive had RSD for three and a half years now and its constant in my leg and flares in my arm
At the moment I am having bad flares in both and the dystonia in my leg is worse along with the fact that I have now developed dystonia in my hand
Its often impossible to sleep and more often I am having small fainting episodes where sometimes I come round to find a white foam in the corner of my mouth
I meet with my doctor to look at medications to help me through this most recent flare on Wednesday - As you may be aware I currently take oral ketamine but on an as and when basis as I tend to cope with the pain much of the time by knowing my limits, listening to my body and pacing myself.
My doctor is looking at morphine for pain and baclofen or botox for the dystonias
Sativex has recently been licensed in the UK and I was wondering if its combined effects of reducing pain and helping muscle spasms may be something that would be beneficial to me. I have read the odd few articles on its use in RSD but understand it has been used for sometime in the USA and Canada so was hoping someone out there could advise me on whether it is worth pushing to try this
Also, a friend mentioned that pain, chemical imbalances and health conditions can bring on forms of epilepsy and that it is possible the seizures, passing out and foam could be signs of this - has anyone else experienced something similar
Thanks for any advice you can give me
Love
Ali x

Dear Ali,

I'm sorry to hear that you are still battling this beast, and that things don't seem much easier for you....I sincerely hope that you are still going to school and enjoying your coursework.

I can't give you any feedback on the drug that your doc has recommended because I have never heard of it - sorry.

My doctor in Boston recommends intrathecal baclofen for dystonia. There's a new thread here for pain pumps - check it out.

I truly wish you well...xoxox Sandy

Hi Ali,

First I'd like to say how proud I am of you and all you manage to accomplish living with this nasty beast. Forgive me if I'm short but I'm in the middle of my move right. My whole house is going into a storage container and my cat and I will get on a plane next Thursday but I wanted to answer your question.

I tried Sativex in 2005 when it first came on the market in Canada. Bottom line is that it is a THC derivative. Personally I don't like THC products it and the sativex made me feel very strange and I found it difficult to concentrate. I couldn't say that I had lower pain levels while taking it so I didn't continue with it. I still have my unused medication sitting in the fridge (need to drop it off at the pharmacist before I move next week).

I don't take too many meds either, like you I like to listen to my body and try to pace myself as best I can.

I found Magnesium citrate supplements seems to help me best with muscle spasms but I don't have major dystonia. It really helps with my internal bowel spasms.

Have you ever been able to try Lidocaine infusions?

I hope you find a good option that allows you to continue with your education pursuits. You are a real inspiration to many here.

MsL

PS: From what I've read and learned from the doctor who popularized Botox is that it has good results for pain reduction but there has been little benefit to restoring function to back to affected limbs. I had botox injections for my jaw and it did help my TMJ symptoms but not my RSD pain.

Oh, Ali..I've missed you and have wondered how you are faring with your coursework and busy schedule.
I am so sorry your pursuits are interrupted by continuing problems with your RSD and dystonia.
I am glad to hear you have been able to pace yourself and listen to your body for clues of over-exertion. I am wondering if the fainting spells can be caused by your current medications..or maybe even fatigue.
I'm sure your doctor will run lab tests and other tests to rule out any other reasons for the fainting.
I am not familiar with the medication your are considering..I hope your doctor can give you some insight on Wednesday.
Summer is here and I hope you will have a summer break from your studies and busy schedule to find some time to truly rest and relax and maybe feel some relief.
I pray that you and our doctor can find some relief for you and the increasing dystonia. I've read that there a good results with botox injections.
Thinking of you!!
hope4thebest :hug:

Thank you all for the replies, I really appreciate them :)!

Sandy - My Doctor suggested the intractable Baclofen pump to help with the Dystonia but unfortunately in the UK, they wont implant it until you are over 16 years of age so i'd have to wait at least another 8 months. He's wanting to inject into my spinal cord with Baclofen to see if that would work in the short term but unfortunately because I have been fainting, we have been told that we'd need to wait for this to subside before he'd be willing to do it.

MsL - Good Luck with your move, I hope everything goes well and wish you the best of luck! Thank you SO much for your input on the Sativex - I really appreciate getting input off someone who has already been on it! My mum and I have read a lot of good and bad stories about it (like everything I suppose) but it seems to work mostly in people with MS from what we have been told so not sure if it would help me. It's currently not used to license in children under 16 in the UK but we were told if we got strong evidence that it might work, my Dr may be able to license it for me so we will do more research into it!

Hope4thebest - Thanks for the well wishes! Unfortunately because I have been having a lot of pain and not sleeping / collapsing, I have not been able to attend school and am therefore having to go back down the home tuition route - something which I really don't want to do as it means I am not able to complete my college course in Health and Social Care but I have tried going to school full time on many occasions now and each time end up in a major flare. My mum asked if I could just have home tuition and go to college but unfortunately, that wasn't possible so I will have to pack it in. It's a shame as its something we fought soo hard for and I have many great friends on it but we have to put my health first. Hopefully i'll be able to continue it when i'm older if things settle down a bit healthwise.

I was wondering if the medications could be causing the collapsing also but I only take oral Ketamine and it isn't daily (only been told to use it when I really have to due to my age)! I collapse around 20 times on average a day so its getting really scary for my mum, boyfriend and I. Hopefully my Doctor will be able to help Wednesday.

Thanks again everyone and I shall keep you all posted as to how my appt goes. I hope you are all doing well :)!

Alison

I take baclofen orally, and I noticed it helped a bit with my dystonia. I was having alot of problems with shaking, twitching, and sudden jerks, and muscle cramping and shaking. If you haven't tried the baclofen, i'd start there :)

Ali,
I have not taken the med u are asking about. I live in the US & take a similar thc pill called Marinol. I take the highest dosage 4 times a day. It takes about an hour and a half before it kicks in. Makes you feel a little funny, but not bad. It helps with my anxiety, which helps me calm & so it helps a little with pain. I also have lots of chronic nausea/vomiting & it helps alot with that & stimulates my appetite. Hope u find a med that works!!