Posted: Sun Oct 24, 2010 6:54 pm
I am tempted to call a doc like Earley. I have a lot of his papers already! and books that he has contributed to. But I will give this new guy a bit more of a chance. GG thanks for reminding me that he is not evil and probably does want what's best for me. I have finally been able to compose a fax that's not too lengthy or emotional (they gave me his fax number, not as good as a phone call but something at least.) I said, basically, the sleep study was to find out if I had something besides RLS, but at this point that is not my priority since the RLS is not being managed so if I am not going to get enough time to talk to him about managing the RLS during the sleep study and MSLT, could I please have an appt to discuss the RLS because everthing else is pointless without that. I said it better than that, and hopefully it's calm, clear and concise. I will fax it tomorrow from work.
I've tried clonazepam/Klonopin, brenda; it has a powerful sleep-inducing effect for me but unfortunately that mostly happens the next day; the drug cannot overcome the RLS at night, unless I already have taken something else to help the RLS. I still have leftover clonazepam pills, and I will use them if I get too burned out, but every time I take one I will be able to do nothing for the entire next day.
I like the suggestion of reminding the doc how it feels to have no sleep. I work with a bunch of scientists, so I 've used a similar method to try to get them to understand. I say to them, have you ever tried to read a journal article when you're bone-tired, and you find you've been reading the same sentence over and over and you just cannot grasp its meaning? so you tell yourself, gee I'd better get some sleep then try this again, and you go and get some sleep and when you come back to it, it all makes sense. But for me, I'm not allowed to sleep, and I have to keep trying to understand that paper without sleep, going over and over that sentence til it makes sense, moving on to the next one, forgetting the last one and going back to it, finally getting it all days later, only to do it all over again in 2 weeks when I need the information again, because I've forgotten it.
But how can I have a conversation that long with a busy doctor. This may seem crazy, but I would like to go off my meds and be witnessed by a bunch of doctors. I would like them to KNOW what it's like, to see the effects if not feel them. I think the visuals would be pretty dramatic, and they would walk away with a whole new visceral understanding that would enable them to be more compassionate and proably more effective in their jobs. They could even videotape it and use it as a training video. I would do that, for the impact it would have. It would probably take months off my life!! but I would do it.
Oh another thanks to GG for the suggestion to alternate 9's with 15's. I don't know if I'll go that far - a night with 9 at this point would entail a sacrifice of the whole next day, because I wouldn't sleep and I would have enough RLS the next day to ruin my concentration - but you've made me realize I don't have to go all out on the 15's. Last night I lived with 12. It wasn't fun and I was up a lot and slept lightly and had to sleep in, but I should be able to make it to Nov22 by alternating 12 and 15, then I will still have a bit of my stash left.
I am only scared that I won't get my medication changed on Nov22/23, that he won't change it until the follow-up whenever that will be, which means I would have to last even longer like this. But that's what the fax is for, maybe he'll give me a quicker follow-up or just forget the darn sleep study and deal with the RLS.
GG what med are you on that you take every 4 hrs?
I've tried clonazepam/Klonopin, brenda; it has a powerful sleep-inducing effect for me but unfortunately that mostly happens the next day; the drug cannot overcome the RLS at night, unless I already have taken something else to help the RLS. I still have leftover clonazepam pills, and I will use them if I get too burned out, but every time I take one I will be able to do nothing for the entire next day.
I like the suggestion of reminding the doc how it feels to have no sleep. I work with a bunch of scientists, so I 've used a similar method to try to get them to understand. I say to them, have you ever tried to read a journal article when you're bone-tired, and you find you've been reading the same sentence over and over and you just cannot grasp its meaning? so you tell yourself, gee I'd better get some sleep then try this again, and you go and get some sleep and when you come back to it, it all makes sense. But for me, I'm not allowed to sleep, and I have to keep trying to understand that paper without sleep, going over and over that sentence til it makes sense, moving on to the next one, forgetting the last one and going back to it, finally getting it all days later, only to do it all over again in 2 weeks when I need the information again, because I've forgotten it.
But how can I have a conversation that long with a busy doctor. This may seem crazy, but I would like to go off my meds and be witnessed by a bunch of doctors. I would like them to KNOW what it's like, to see the effects if not feel them. I think the visuals would be pretty dramatic, and they would walk away with a whole new visceral understanding that would enable them to be more compassionate and proably more effective in their jobs. They could even videotape it and use it as a training video. I would do that, for the impact it would have. It would probably take months off my life!! but I would do it.
Oh another thanks to GG for the suggestion to alternate 9's with 15's. I don't know if I'll go that far - a night with 9 at this point would entail a sacrifice of the whole next day, because I wouldn't sleep and I would have enough RLS the next day to ruin my concentration - but you've made me realize I don't have to go all out on the 15's. Last night I lived with 12. It wasn't fun and I was up a lot and slept lightly and had to sleep in, but I should be able to make it to Nov22 by alternating 12 and 15, then I will still have a bit of my stash left.
I am only scared that I won't get my medication changed on Nov22/23, that he won't change it until the follow-up whenever that will be, which means I would have to last even longer like this. But that's what the fax is for, maybe he'll give me a quicker follow-up or just forget the darn sleep study and deal with the RLS.
GG what med are you on that you take every 4 hrs?