Hi, after a little advise.
My husband has CBD. The neurologist has prescribed Gabapentin. He is on 900mg three times a day. This is to try and controlled his jerky movements...... as yet with no success.
Has anybody found anything else that works, or is it a case of upping the dose until this works.
At the minute he's known as jumping Jack flash.....
Thanks in advance
Deb xxx
Hi, my dad also has CBD and the neurologist tried a few of the standard Parkinsons meds. He kept upping the dosage in hopes something would work, eventually dad started having mild hallucinations from the meds and all the doses were slowly dropped, then discontinued. As of now there is no real shaking but he has extreme stiffness, especially on the right side. Dad was diagnosed January 2016, stopped walking in April 2016. If I didn't have a hoyer lift he'd be bedridden today.
Ron
My husband has similar symptoms. I am in the US and doctors are reluctant to confirm an absolute diagnosis . They say it is either PSP, CBD or perhaps MSA. My husband has only an occasional tremor in a few fingers. He also has severe stiffness and freezing, especially on the right side. I have asked about a lift, but worry that he may not have enough strength to help. Thanks, the disease seems to be progressing at a more rapid rate. It is nice to hear everyone else's experience. Good luck and strength to Deb and Ron.
Karyn
Hopefully the Gabapentin may work in time Deb. My husband also has CBD and he has been on Sinemet ( a Parkinson's medication) for two years but we are just discontinuing it as it doesn't seem to have any effect. He is now extremely rigid and bed ridden. He is just on a small dose of donepezil and citalopram. I asked about muscle relaxants but they said they are not recommended. Has anyone any other positive experiences with medication? I used to give him Co -enzyme Q10 and ibuprofen every day.
My dad found the muscle relaxer baclofen to be very helpful with his leg cramps for about 6 months. He had to start with a low dose at first or he was too out of it mentally.
Hi my husband also has CBD,
He used to take Sinemet but hasn't taken that for at least 2-3 years now.
He takes Escitalopram, Clonazepam, Pregabalin. All in low dosage. I think the Pregabalin is for the jerks but which ever medication he takes for the jerks it has kept them at bay and he doesn't suffer too much with them.
He has been on the same medication mostly since he was diagnosed July 2013. ONly the dosage has changed on a couple. THere hasn't been a need recently to change anything and Iwould be reluctant to add or take anything away. No medication he takes is a cure, just keeps him comfortable as possible as the disease progresses.
Denise x
I have Fibromyalgia and take 1800 mg of Gabapentin a day, this marginally keeps my pain controllable. I have found that more than that causes me major hallucinations. So be very careful about increasing the dose since they are already over what I take. Just a warning.
My mother has been suffering for 4.5 years. We did not have any luck with Gabapentin either. She complained that it made her feel nervous and made her tummy hurt. Currently she is not really being treated with anything other than Ibuprofen for mild arthritis pain, as the other drugs have also not had much effect.
New to this horrible disease 
Advice on breaking PSP to my father in a way he can understand. 
Husband progressing quickly 
New here Dad just dx with PSP :(
