My husband, who has CBD, is about to embark on a course of Baclofen. This is in the hope that it will ease off his spasticity. I know all sufferers are different but has anyone had positive results from this medication? He is starting on 10mg per day increasing to 100mg per day depending on how he tolerates it. What should we be looking for? Thanks for your help. Hope life is as good as it can be for all of you.
Margaret
They prescribed this for me this past summer. Did absolutely nothing for me so the doctor sAid to stop taking it. Nothing has given me any relief at all.
You should be looking for a reduction in the spasticity. We tried this medication but it didn't help. Definitely worth a try!
Margaret, my sister has CBD and is experiencing rigidity and contortion in her neck and hands, and even the muscles around her eyes. She started a low dose of Baclofen, three times a day, but we stopped them after 4 days as they made her impossibly tired and sleepy. Her doctor thought that she could be very sensitive to the drug, or it was not combining well with her other medication. She also enjoys a glass or two of wine each day, and I wondered if that was causing a reaction. My sister does not believe the drug will help (she would prefer the wine!), and the doctor is inclined to agree, so we won't try again. We have ordered soft splints for her hands to prevent the extremely tight fists she ends up with.
However, everyone is different and this horrid disease affects people in many ways, so it may well be worth a try. Just be alert to any changes in your husband. I have also read on this site that people have been using morphine patches to alleviate the spasms - my sister has rigidity of muscles but no pain so I would be reluctant to suggest that at this stage.
Anyway, my best wishes to you and your husband.
Thanks everyone for your input. It has always been my understanding that there is no medication that helps with this dreadful illness but we'll give it a go anyway. My main worry is that it will make him even more dizzy. He already suffers dizziness 24 hrs a day because of an acoustic neuroma which is a non-malignant tumour that grows on the balance nerve so I definitely don't want to make this worse. Take care everyone and many thanks.
Margaret
My Dad used this drug with some success. Actually it was the only thing that helped his pain. He had terrible leg cramps at night from PSP. The prescription was 10mg 3x a day which was way too much to start for him. The side effects being confusion and disorientation. We started cutting the pills in quarters even. More at night. It worked and then 6 months later he was taking the full dose. He needed more as the body gets used to it and then you have side effects. My advice would be start slow and watch for the negatives and positives. Good luck.
Hi Fothegilla. Thank you so much for your advice. We will definitely take it slowly. My husband's life is such a daily struggle for him already that I don't want to make it any worse. I have to tell you that I am finding this the most heartbreaking situation. He has lost all his faculties but is still well aware of what is happening to him. I always try to include him in conversatioms when people are in, even though he can't speak, so that he knows that I haven't forgotten he is there. Thanks again.
Margaret
My husband with cbd is just starting it again too....4 days on....seems to help so far! Makes him extra sleepy I think....but at least when he dozes off he looks relaxed and comfortable with very few kicks and jerks of the legs like before. He prefers to sleep in a seated position on a chair. His neck goes down to his chest. How does your husband prefer to sleep?
Hi Senoritaparks1. My husband hadn't slept in a bed for about 3 years because he has panic attacks and, like your husband, slept in a chair. However, we persuaded him to use an adjustable hospital-style bed where he now sleeps still sitting but leaning back a bit more. I have been a bit uncomfortable about using Baclofen because of all the possible side-effects so I have started him on only 5mg per day instead of the 10mg suggested by the consultant. I don't know if it's 'wishful thinking' but after only 3 days his limbs seem a lot less stiff. His head, however, is still down and very tight. I am not building my hopes up about this but at least so far there are no adverse effects. I hope your husband beneftis from this medicine. It looks as though he has been on it before. Why did he stop? Good to hear from you.
Margaret
Hi Pentland
My husband has CBD too.
Iam just looking for some support this disease is so cruel, it started in 2015 he is 47 years old!! I hate it and never really get any straight answers, just comparisons to other neurological diseases. If you don’t mind could you please tell me a bit about your journey so far
Thanks Demlach
Not sure what is happening?
PSP- is fever a symptom?
Restlessness. Anything that can be done to help?
Incredibly fast turn around!
