CBD oil/gumming Etc

[Derek1uk]

Hello, now I know I'm pretty new to the group as my wife was diagnosed on 12th March but given a PSP diagnosis from 29th Jan but she's had the symptoms for a while now and not seen a Neurologist due to Covid (blah blah blah). But she's been on Co-careldopa and that didn't seem to help, she's now on Pregabilin and some antibiotics for a possible chest infection. My main concern is the pain she is in, she doesn't sleep at night and it's getting worrying now as we all need to recharge our batteries. So my question is I've seen CBD oil in Holland and Barrett in the UK, has anyone any experience with it? If so is it any good for pain/relaxing/sleep?Sorry for being long winded. Lol

[Polesden11]

Hi Derek (& nameless wife 😀)I'm sure you'll get advice from a number of people on here who will have lots of personal experience.

I'm afraid I always go straight to my GP. Milld "background " pain I try to ignore or resort to oromorph and paracetamol taken at the same time. My Gp has left in my fridge "proper" morphine so when it gets rreeally bad I getting a DN TO call and inject me with that.

I'd also contact the MSA TRUST in London. The nurses there will give yoou advice. More later my carer is waiting!!!!!!!!!!

Sue x

[Derek1uk in reply to Polesden11]

Hi Sue, Thanx very much for the reply, my wife (Jackie) with the condition had been prescribed a mild Morphine by her (locum) G.p last week but was waiting till the usual Doctor phoned her today Thursday to see if that was the right thing to do.......... well hang on FGS just talk to each other and phone us. Now she's had to be in pain for a week and when we phoned yesterday she had to beg for the morphine to be sent to Pharmacy when all it would have taken was a Gp in one room talking to another. Grrrrrrrrr.

[Paul_and_Sue_Wood]

Hi

My wife has pain and we have used gabapentin, pregabalin and duloxatin over time with increasing doses all the time. We now use a matrifen patch with gabapentin in addition.

We tried CBD oil and found it great for a week or two BUT then we started to see issues.

As CBD oil is not a medicine it's not regulated and you don't know how it reacts with anything else you are taking. Also each dosage could be different strength quality.

Be careful.

We stopped as we found it had reactions with sue s medication

Paul

[Derek1uk in reply to Paul_and_Sue_Wood]

Hi Paul,

I think your right you know, we should stick to the Prescribed stuff. Just desperate to get Jackie to be a bit less pain/discomfort. Thanx for the reply.

[Paul_and_Sue_Wood]

I understand your predicament.

Stick with the prescribed but push them if it doesn't work

[Derek1uk in reply to Paul_and_Sue_Wood]

Oh we will, one thing that I've learnt THROUGH Covid and after is that G.p's/specialists will just sit on stuff and not act unless pushed.......... Long story another day. Thanx for reaching out