Not sure...
Posted: Tue Apr 09, 2013 1:18 am
Hi
I'm not sure if it's okay to post here because I'm not the RLS sufferer, my hubby is? I thought I had better come clean upfront! I'm trying to understand how I can help him, aside from emotional support which I try to give even when my nerves are on edge after what seems an age of him struggling with the syndrome.
He has been on pramipexole for almost a year and it has been a huge help. It's not been 'the cure' but at least we could get a little sleep. The only side effect seems to be that to me - he often seems in a brain fog. Connecting with him is quite difficult sometimes. I don't know if that is because of the drug or just because he is so often tired despite it, or both.
Anyway, last week a scan showed up fatty liver and he had to go off the pramipexole so that they can test his enzymes next week to see if the drug is the cause of his liver issues. It might not be the cause as he may also have hemochromotosis - he is getting the gene test for that so we just don't know yet. His sleep specialist said there is no evidence that pamipexole can damage the liver, but the doctor wants to rule this out as a cause.
The doctor prescribed him a 'stand in drug' I forget the name. That night after taking it, he had full body jerking the whole night. He slept through some of it but I was very worried about him. I have never seen anything like it, usually his legs just kick. I think it might have been withdrawal as well as the new drug - whatever it was, his brain/body went into a crisis. In the morning he called his sleep specialist who said to take codeine - this has helped, but again it's still not optimal.
I also got him a tens machine - it helps for daytime movement. Daytime RLS is a new thing - he never used to get RLS during the day. Is it possible this could be due to withdrawal from pramipexole?
He is still very tired during the day & we are at a stage where we are looking at our life as we once knew it ebb away. It's like swimming in a vortex, every day we just get tireder & more despondant. I get anxiety attacks at times about what the future holds and I cry a lot although I don't let him know. He can barely work and we are facing financial issues because of it on top of everything. He looks and feels ill. It's so scary and I feel so sorry for him.
Even though we are both worn down I can't rest! I have read as much as I can on the subject, researching day & night to try to find a way forward.
I'm sure many of you have done the same. It looks like there are few answers and trying to manage it is about the best it gets ( if one can do that effectively) but I keep hoping we will get lucky! I hope you all will too.
Sorry for off this longgg offloading...but I don't really know where else to turn at the moment.
I'm not sure if it's okay to post here because I'm not the RLS sufferer, my hubby is? I thought I had better come clean upfront! I'm trying to understand how I can help him, aside from emotional support which I try to give even when my nerves are on edge after what seems an age of him struggling with the syndrome.
He has been on pramipexole for almost a year and it has been a huge help. It's not been 'the cure' but at least we could get a little sleep. The only side effect seems to be that to me - he often seems in a brain fog. Connecting with him is quite difficult sometimes. I don't know if that is because of the drug or just because he is so often tired despite it, or both.
Anyway, last week a scan showed up fatty liver and he had to go off the pramipexole so that they can test his enzymes next week to see if the drug is the cause of his liver issues. It might not be the cause as he may also have hemochromotosis - he is getting the gene test for that so we just don't know yet. His sleep specialist said there is no evidence that pamipexole can damage the liver, but the doctor wants to rule this out as a cause.
The doctor prescribed him a 'stand in drug' I forget the name. That night after taking it, he had full body jerking the whole night. He slept through some of it but I was very worried about him. I have never seen anything like it, usually his legs just kick. I think it might have been withdrawal as well as the new drug - whatever it was, his brain/body went into a crisis. In the morning he called his sleep specialist who said to take codeine - this has helped, but again it's still not optimal.
I also got him a tens machine - it helps for daytime movement. Daytime RLS is a new thing - he never used to get RLS during the day. Is it possible this could be due to withdrawal from pramipexole?
He is still very tired during the day & we are at a stage where we are looking at our life as we once knew it ebb away. It's like swimming in a vortex, every day we just get tireder & more despondant. I get anxiety attacks at times about what the future holds and I cry a lot although I don't let him know. He can barely work and we are facing financial issues because of it on top of everything. He looks and feels ill. It's so scary and I feel so sorry for him.
Even though we are both worn down I can't rest! I have read as much as I can on the subject, researching day & night to try to find a way forward.
I'm sure many of you have done the same. It looks like there are few answers and trying to manage it is about the best it gets ( if one can do that effectively) but I keep hoping we will get lucky! I hope you all will too.
Sorry for off this longgg offloading...but I don't really know where else to turn at the moment.