Hi all my husband age 57 has CBD. He has jerks which can be quite severe, the Consultant has tried sodium valproate which made him ill, modopar which had no effect and recently Topiramate which again made him ill. Does anyone have any experience of this please?
Also he is very low and teary. We have tried sertraline and fluoxatine which really knocked him off. Again any advice would be much appreciated.
Many thanks
My husband has both of these symptoms, he was prescribed diazepam and baclofen,
Baclofen 20mg 3 times a day and diazepam 2mg 3 times a day then extra if I thought he needed it. The jerks or spasms would cause my husband a lot of pain because of his stiffness I believe the diazepam can act as a pain killer aswell. We have reduced the baclofen to 10mg 3 times a day as we believe the spasms, jerks have calmed down a lot now, think they must be a sort of phase some people go through,
Good luck hope you find a solution that suits your husband.
Love and hugs Helen xxxxx
Helen thankyou so much for your reply. I will be able to suggest these when I speak to the specialist nurse xx
Love to you xx
We were also diagnosed with Baclofen and diazapam.
We seldom needed diazepam as my wife did not suffer from pain. We found Paracetomol was enough to cover pain control right to the end. Just been to the drugs cupboard to check and found an unopened bottle of Diazapam. Oops should have returned it to the pharmacy. Wishing you well and hope and pray that you get as much help and support as we did throughout our CBD journey. Love. Ken.
Thanks Ken good to hear from you xx
Anne has Piracetam. She normally has the jerkiness when she wakes up for a while, and she's normally OK rest of the day. I only give the Piracetam if she's having a bad day which is not very often thankfully.
Hi thankyou for your reply x hope you and Anne are ok
I think it is hard not to feel low as our bodies go down hill. It is so difficult to find the correct medicine or combination of medicines to help and some meds do cause depression. Sending hugs to you both as you keep on the search... Granni B
Thankyou Granni B hugs to you too xx hope your ok
These jerks sound like myoclonus. I experienced them earlier on with PSP, but there was never any pain associated with them. And though they are involuntary, I would always try to time them to music. I called them musical muscles as some here on this forum may know. I'm on Baclofen and Clonazepam which seem to be effective. The more painful contractions and twisting were diagnosed as dystonia for which I receive Botox injections. Nortriptyline and Effexor are prescribed for me to keep me on the edge of depression and not sliding down its slippery slope.
Tim
Hello Tim thankyou so much this will be very helpful to discuss with the Consultant.
Did you try several medications before you found these suited you please ?
Hope you are ok
Many thanks Joy x
I have an excellent team of doctors that follow me. They're are all associate professors at the teaching hospital where I'm seen, including a neuro psychiatrist who understands neurodegeneration and its' effects.. The MDS knows the disease well - has several PSP patients... got the right meds the first time. PSP doesn't present the same in any two patients and you might have to continue trialing different medications.
Tim
I have CBD and I have had trouble with jerks also. I’ve had myoclonus spasms in my legs and feet and also, my right arm (the one that is affected) is spastic. My doctor has prescribed Baclofen and Clonazepam. I take 10 mg of the Baclofen 3 times a day and the Clonazepam before I go to bed. They have really helped me quite a bit. Plus, I get Botox injections in my arm and hand every 3 months to help with the rigidity.
I also take Sertraline every day, my doctor prescribed it quite a while ago. I wasn’t sure why but now, I’m glad he did because I do think it helps me deal with things.
I’m sorry that you are still searching for something to help alleviate your husband’s symptoms. I hope you hit on the right solution for him soon.
Thankyou so much for your reply. This site is very helpful and such kindness from everyone xx
Yes, the jerks sound like myoclonus. Standard treatment is clonazepam (Klonopin in the US) or some other muscle relaxant. Myoclonus is common in CBD, Alzheimer's Disease, and other neurological disorders.
Many people have to try several antidepressants until they find something that works for them. Quite a few in our local support group take bupropion (Wellbutrin in the US) as it also acts upon the dopamine system.
Good luck,
RobinR
Thankyou so much for your advice xx
As Helen119 mentioned, Baclofen and diazepam are helpful. The Baclofen really helps my husband with the muscle pain/cramping. The diazepam acts as a muscle relaxer which also helps, whereas the Baclofen is specifically for use on pain originating in neurological conditions, according to our neurologist. We also use Tramadol as a general purpose pain pill twice a day, although he could have more.
My husband has PSP, not CBD, but I will mention that the doctor has recently prescribed Seroquel usually used for schizophrenia, but used off label for controlling symptoms of PSP such as impulsive movement. I hope you can find something to help your husband.
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