Marguerite
Active Member
It's early morning Boxing Day here. That's the day after Christmas Day. Public holiday plus weekend. Here, it's public holiday until Wednesday.
difficult child 1 & daughter in law just left. She's not in good shape and we are really worried about her. We love her to bits but she is not well. Long story cut short - she has a diagnosis of chronic fatigue syndrome, plus past hx of epilepsy (controlled with medications). She also has anxiety/panic issues and WAS on zoloft for this. Main problem for years has been fatigue, but recently this condition has upped the ante to include an increase in myalgia and arthralgia. She also has had restless legs thrown into the mix and is often in so much pain she can't sleep.
So - she finally is seeing an immunologist who said that with CFS, Zoloft is not the best choice. He changed it to moclobemide. Initially this seemed to give her an energy boost but then she became increasingly depressed/suicidal at times, and manic at other times. She knows this is not her, it's the pills. She spoke to the specialist who said to persevere, it would stabilise. Just before Christmas it had seemed to settle, we had a lovely day with them at the mall. But her energy levels are a sham; when she flags, it can be sudden and extreme. Physically she has to rest, but lately she can't sleep. Either it's pain, or her legs twitching. Then her mind starts racing and difficult child 1 has said he has found her looking up data online to find out how much of her medications she can take, to end it all. She is very distressed.
They had planned to stay with us for another day or two, but have headed home after another sleepless night, so hopefully in her own bed she can sleep. I suggested a trip to the local ER, but they've done that - their advice was to DOUBLE the moclobemide. Because this will take the dosage over the recommended amount, apparently it also brings some dietary restrictions so she hadn't yet increased the dose before Christmas, so she could eat normally with us. However, she's not eating well, I heard her telling easy child 2/difficult child 2 last night that she feels sick if she eats, and feels sick if she doesn't.
I've suggested to difficult child 1 that he take her back to the ER. However, they've got a 50:50 chance, on the long public holiday weekend/week, of finding someone with a brain, or some idiot. I think suggesting she double the medications was idiocy, if the medications are what is causing her mental state to be so disordered. I've told them to call me if they go to the ER and I will try and get there too, to yell at doctors if needed. As daughter in law just said before they left, the doctors are trying to use the moclobemide to treat the fatigue and ignoring the mental health aspects of the whole regime. She wants to go back onto Zoloft - that was helping her anxiety (which she had long before the CFS) and off the stuff that seems to be messing with her head. difficult child 1 is worried about her to the extent that he has chucked in his apprenticeship and is only working on a casual basis so he can stay home with her if he is afraid to leave her alone. They can't go on like this.
So - any ideas, folks?
The specialist probably won't be available until after January. The GP is not available until after January. All she has is the hospital and hopefully, a functioning mental health team. Or not.
Has anyone heard of similar problems with moclobemide? I was put on it years ago (for similar pain issues) and had weird reactions. It made me very depressed, plus I had racing thoughts and was almost manic at times. I was told this was unusual, but now I'm not so sure. I remember saying to someone, I reckon Stephen King must take this stuff... my problem was, I could sleep but my dreams were so nastily vivid, I didn't want to.
Marg
difficult child 1 & daughter in law just left. She's not in good shape and we are really worried about her. We love her to bits but she is not well. Long story cut short - she has a diagnosis of chronic fatigue syndrome, plus past hx of epilepsy (controlled with medications). She also has anxiety/panic issues and WAS on zoloft for this. Main problem for years has been fatigue, but recently this condition has upped the ante to include an increase in myalgia and arthralgia. She also has had restless legs thrown into the mix and is often in so much pain she can't sleep.
So - she finally is seeing an immunologist who said that with CFS, Zoloft is not the best choice. He changed it to moclobemide. Initially this seemed to give her an energy boost but then she became increasingly depressed/suicidal at times, and manic at other times. She knows this is not her, it's the pills. She spoke to the specialist who said to persevere, it would stabilise. Just before Christmas it had seemed to settle, we had a lovely day with them at the mall. But her energy levels are a sham; when she flags, it can be sudden and extreme. Physically she has to rest, but lately she can't sleep. Either it's pain, or her legs twitching. Then her mind starts racing and difficult child 1 has said he has found her looking up data online to find out how much of her medications she can take, to end it all. She is very distressed.
They had planned to stay with us for another day or two, but have headed home after another sleepless night, so hopefully in her own bed she can sleep. I suggested a trip to the local ER, but they've done that - their advice was to DOUBLE the moclobemide. Because this will take the dosage over the recommended amount, apparently it also brings some dietary restrictions so she hadn't yet increased the dose before Christmas, so she could eat normally with us. However, she's not eating well, I heard her telling easy child 2/difficult child 2 last night that she feels sick if she eats, and feels sick if she doesn't.
I've suggested to difficult child 1 that he take her back to the ER. However, they've got a 50:50 chance, on the long public holiday weekend/week, of finding someone with a brain, or some idiot. I think suggesting she double the medications was idiocy, if the medications are what is causing her mental state to be so disordered. I've told them to call me if they go to the ER and I will try and get there too, to yell at doctors if needed. As daughter in law just said before they left, the doctors are trying to use the moclobemide to treat the fatigue and ignoring the mental health aspects of the whole regime. She wants to go back onto Zoloft - that was helping her anxiety (which she had long before the CFS) and off the stuff that seems to be messing with her head. difficult child 1 is worried about her to the extent that he has chucked in his apprenticeship and is only working on a casual basis so he can stay home with her if he is afraid to leave her alone. They can't go on like this.
So - any ideas, folks?
The specialist probably won't be available until after January. The GP is not available until after January. All she has is the hospital and hopefully, a functioning mental health team. Or not.
Has anyone heard of similar problems with moclobemide? I was put on it years ago (for similar pain issues) and had weird reactions. It made me very depressed, plus I had racing thoughts and was almost manic at times. I was told this was unusual, but now I'm not so sure. I remember saying to someone, I reckon Stephen King must take this stuff... my problem was, I could sleep but my dreams were so nastily vivid, I didn't want to.
Marg
