Have not been on this site for a while, my pain is ruling my life and taking any interest in things, just in case it starts my o.c.d. off, my consultant has put me on LYRICA has anyone been on this drug long term?its taken me weeks before my brain can except a larger dose,eases the pain, but does not take it away completely, bit like speeding or rush, then having to lay down for ten minutes etc, then up, still suffer stiffness but the c.b.d is the biggest problem,cannot be treated, anyone got this disease?my nurse said she knows of only 4 people in the country. can anyone tell me what happens as you go on?
So sorry to hear of your suffering. My pain is more of a background dull ache which I attempt to consign to the back burner. Parkies feel pain acutely of course and that includes the heat or opposite. Can I ask what C.B.D. is? I'm sorry I never heard of it but you do say it's rare. Fingers crossed, someone can share her/his experiences with you. Take care.
cbd is corticol basal degeneration. it attacks the basal ganglia like parkinsons but also the cortex like alzheimers, so the symptoms are a mixture of both. it is like AD in that it probably is associated with the tau protein not alpha-synuclein. it is incredibly rare, there is no cure and it is very aggresive though the rate of decline varies extraordinarily compared to other diseases.
statistically there is unlikely to be anyone on the forum with experience of this awful disease.
Debbie, even if no-one can share their experience of cbd, please feel free to use the forum in any way that helps. If you just want to let people know how you are getting on and share your problems, I am sure there are many good people here who will help in any way they can, even if it is only by listening.
ps lyrica is gabapetrin the same medication that rebekah8 is on (see post on i think recently diagnosed).