I had my telephone appointment with my MS yesterday we had a long chat. I told her i am just about done cant do this anymore. the orthotics signed me off as a hopeless case with just WE CAN KEEP YOU COMFORTABLE, i have tried most of the meds i am sensitive to them, i think it runs in my family.
she did mention Sativex which i know is really hard to get so she will request the neuro contact me to talk about treatment options.
I am not sure i want to take this stuff as i read a lot of negative stuff and i know when i saw nuero a few years back he said he hadnt heard anything positive about it.
anyone take this successfully i have PPMS. My spasticity and spasms at night are getting worse and worse. i wake up everynight in pain and find it hard to get back to sleep.
or is there something else you take. I have tried, amytript, lyrica, duloxtine, and a few others but they make me feel like a space zombie.
CC.
sorry to hear that you are have such a crappy time CC. As usual I have no useful knowledge or experience to share. Sending you virtual medication and a bit of good luck.
All the best
Mick
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I find magnesium helps ease problems with spasm & cramp and is a beneficial mineral, so no harm in trying.
Incidentally, I was on the original Sativex trial nearly twenty years ago and apart from a few too many sprays making me a little giddy, toleration was ok. Unfortunately, it didnât make any difference, but symptoms were much milder back then.
Not particularly useful, but mentioned it because I am PPMS too.
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it all helps thank you. my magnesium is fine its all been checked. but i did wonder it myself but doctor said my minerals in blood were very good.
the neuro and orthotics told me my toe is due to nerve damage in spine or something and nothing more they can do. so its a case of live with it. thankfully i had a better night. I hope your ok though PPMS is so not understood i dont think by the medics. xxx stay safe.xx
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Hello CC
Itâs unusual for you to be expressing your misery about your symptoms. I think you must be really suffering. I am sorry. MS is an absolute *„âŹ=;#!!
I only tried Sativex a couple of times some years ago. It tastes horrible and I didnât feel it helped at all. I also tried some actual cannabis to see if that helped (a friend who smokes the stuff gave me some!). It didnât, help that is. I believe that some people respond to CBD/THC (the active ingredients in Sativex and cannabis) and others donât. I never have.
My rehab neurologist (lovely favourite doctor) did offer me a prescription for Sativex a while back but I refused on the grounds that I didnât think it would work.
It does work for some people though, so if youâre given a prescription, it wonât hurt to give it a go. The drug leaves your system pretty easily and safely, so it wonât give you any bad side effects. It will just work or it wonât.
Youâve said you didnât get on with any of the drugs youâve tried for spasms an spasticity, but the ones youâve listed are for neuropathic pain not spasticity. What about Baclofen, or Cloneazepam, even Diazepam? Personally, I couldnât bear life without Baclofen. I take the maximum amount orally youâre supposed to take and sometimes have an extra one or two. I started taking Clonazepam when I noticed a sort of tremor, it felt like palpitations, but wasnât. The Clonazepam helps immensely.
I think it takes a lot of trial and error to sort out drug treatments. I agree with you about being a zombie. Certainly Amitriptyline too late in the evening has a âhangoverâ type feeling the next morning. For years I avoided taking it for that reason. But my rehab doctor (again) told me to take it by 7pm. That did the trick, I got used to it and now take it by 8.30 with no problems.
I hope you get something that just helps with the pain a bit and maybe gives you a good nights sleep.
Sue
Hi I taking Sativex since March 2019 and honestly wouldnât be without it. My spastisity was at the point where I was at the end of the line with it and he had mentioned it before 2 me so I asked him to let me trial it. There is a titration period whereby you build up the sprays over a week or 2, and it is definitely mind over matter when taking it. My mindset is and was this is for spastisity and thatâs exactly what it does it keeps my spastisity at bay, I donât get âhighâ or anything from it and you only take the amount of sprays you feel you need on any day I take about 3 a day now and always during the day. It is expensive but check if itâs available on the NHS. Only my husband and parents know I take it because I feel if anyone else knew theyâd have an opinion I donât need to know or hear about. Hope this helps you and best of luck with whatever you decide to do. I also take tizanadine 2mg if you wanted to think about that.
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Hi CC,
I hope youâre still reading responses to this but if itâs too late donât worry Iâm sorry. Iâve been taking Sativex For two or three years now and I have found it invaluable. I was taking baclofen to help with spasms but I found that if I took more than three a day I could barely function my legs were too weak. Iâd try and take 4 and wouldnât be able to get out of bed so I struggled on with three. A holiday in California give me the opportunity to try some of the cannabis pharmacies and so I bought some chocolates some cookies and some CBD spray thinking I could bring the spray back to the UK legally as full-spectrum would be illegal. The chocolate was incredibly strong and I loved the being stoned bit but it got in the way of functioning. The cookies were different though, I suspect because theyâre not so strong. What was amazing was that I could sleep without waking up for spasms and when I did wake up in the morning my legs were not in agony. That was quite a revelation. CBD did nothing.
I mentioned this to my neuro the next time I saw him and they suggested that this was good evidence that Sativex might work for me, so i was referred and given a try. The doctors advice was to start with one or two sprays and work up to a point where it was working but that I wasnât stoned so it was a fair bit of trial and error really. The main time to attempt it was at night so that I could benefit from the improvement in spasms that kept me awake so I started with three sprays at night. To cut a long story short, I now take six sprays at night and if I need one in the morning Iâll have one and I may have a couple throughout the day depending on how bad the spasms are. As time has gone on and Iâve exercised less than I should my spasms have got worse. Talking to the neuro we fiddled all the meds around and I increased the baclofen I take at night to keep the dosage of Sativex down. I was finding that taking more than eight or nine sprays a day was too much and occasionally in the day Iâll take three or four and will be in cloud cuckoo land.
I find it helps for joint pain as well as spasms, It can stop my knee pain in about 20 seconds itâs that fast. I had a patch in spring where I was over using it I think to about a dozen to 15 sprays a day which is too much and whilst thereâs nothing certain about it I have a feeling it affected my mental health so I cut it right back to 6 at night and very rarely another spray in the day, and increased baclofen to two x 10mg three times a day. Now the time in a wheelchair full time needing to keep dosage low so I can walk is less of an issue. Iâve been cautious about mentioning the mental health aspect to any medics in case they take the Sativex off me. I need to address it though as itâs still not right.
Hopefully helpful.
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