Hello, can anyone offer any advice about the use of CBD oil in PD?
My husband was diagnosed 6 years ago and his tremor is getting much worse. I wondered if anyone finds it helps with their tremor and other symptoms like stiffness and freezing.
He takes Sinemet and Ropinerole and I’m wary of introducing something that may cause adverse effects on his meds.
I will ask P D nurse when next speak to her but in meantime is there anyone out there who’s tried it and did it help?!
Hi jean i have tried cbd oil for tremor no relief but it may work for you but its expensive
Hi Calv1960, thanks for reply. I had a word with the PD nurse today and she said much the same. She said some people seem to find it useful but others don’t. So it’s back to relying on the meds… It would be great to find one that helps when his tremor is bad but there doesn’t seem to be anything other than going down the DBS route, and he’s not a suitable candidate for that sadly. Wishing you well.
Hi
When I was first diagnosed with Parkinson’s I was given Propranolol for my tremor (20mg twice daily) this helped me and 12 years later it still works and the dosage has remained the same. I know everyone with Parkinson’s are different but this may help you.
Kind Regards
Janny
Hello Janny, thanks for that. Ironically my husband was given propananol in the year before he was diagnosed with PD. They thought it was stress related at the time as he had shaking in hands and legs. Fast forward 7 years, 6 of which since diagnosed with PD. I’m wondering if it’s worth mentioning trying the propananol again to the PD nurse or consultant as an add on to his Sinemet and Ropinerole. Although he’s still tremor predominant PD, other motor and non motor symptoms have recently started to kick in which is making life much tougher… Glad to hear you are still doing so well after 12 years. May I ask if you take other meds for your PD or just propananol? Best wishes Jean
Hi Jean
Yes I take other meds…5/6am 1 Madopar dispersible…6.30am 1Madopar 100/25mg, 1Madopar 50/12.5mg 2 propranolol…9am 1 Madopar 100/25mg, 1 Madopar 50/12.5mg, 2 propranolol…12oclock 1 Madopar 100/50mg, 1 Madopar 50/12.5mg…3pm 2 Madopar 100/25mg…6pm 2 Madopar 100/25mg…9pm 1 Madopar 100/25…10pm 1 Sinemet. Over the last 6 months my meds have been chopped and changed umpteen times, I think I have the right balance now but still have the odd day where I am “off” but most days I’m “cooking with gas”. My Neurologist and Parkinson’s nurse are fabulous and I can contact them anytime. I hope your husband gets the help he needs. At the moment my left foot turns inwards and my toes curl under, I also feel my left leg turns inwards it is a terrible feeling and when I can’t take it anymore I take a Madopar dispersible (which helps) but I only take the dispersible if I really need it. I go back to see Dr Nelson who will hopefully be able to give me Botox for this and therefore I won’t need to take the dispersible when it goes like this.Please let me know how your husband gets on. Wishing you the best
Kind Regards
Janny
Hi Janny, thanks for getting back. Gosh, that is a complicated amount of meds! It’s bad enough trying to remember his 3 times a day. I think our consultant is of the school of thought that less is more where meds are concerned. It’s only recently my husband has had the Ropinerole increased by 2mg when his symptoms started to worsen. The Sinemet too has only had a tweak over the years. I am speaking to the PD nurse in couple of weeks and if things are no better I think she can increase the Sinemet (levadopa) a little. But we are both concerned that this may increase risk of dyskinesia and he has enough to cope with in his tremor. I hope there’s still room for improvement in his meds as the more recent other symptoms are a real worry, freezing, difficulty getting up from chairs and in and out of bed to name but a a few. And also non motor symptoms of constipstion and bladder issues. Oh and yes, he has a couple of very odd toes. One is bent over and I didn’t realise it was connected to his PD as he’s never had the nicest looking feet! Will put the Botox suggestion on my ever growing list for when I speak to PD nurse. Many thanks for advice and nice to chat with you. Regards Jean xx
Hi Jean
Yes the meds and amount does seem complicated but you soon get used to it. Nice talking to you and best wishes to you and your husband
Kind Regards
Janny
Hi Janny, yes I’m sure you soon get into a routine with the meds. I found it very difficult timing them as have to wait an hour before eating after the Sinemet. We’ve just been out for a walk from home as such a sunny day. Now sitting in the garden to try and get a bit of Vit D in our bones. It’s lovely weather but out of the sun still bit of a chilly wind. Must be getting old I think! Enjoy rest of the day. Best wishes Jean
Hi Jean, I just read what you put about the problems your husband has with his toes. Three years ago I suffered badly with the toes on my left foot, they had a a tendency to point upwards and sometimes it seemed like they were dancing uncontrollably. I was prescribed Baclofen 10mg 1 tablet twice a day and have had no problems with them since then. I know what works for one person won’t necessarily work for another person but they may be worth a try. Good luck, Mark
Hi Mark, thanks for the advice. I’ll mention it to our PD nurse at next meeting. There always seems to be yet another new symptom popping up lately. It’s becoming quite draining for us both. Take care and thanks again. Jean