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Coping with sleep with CLS

clswalt Message
29 Aug 2009, 03:10 AM

Does anyone have any suggestions or good methods of coping with little or no sleep with the CLS medications? I started last year on Terbutaline, Aminophylline and Singulair. I am only taking Aminophyilline now. Levels still look great. I have not slept more than 3-4 hours while on all three meds. When I switched to one med, I was sleeping all night and very sound for 6 straight weeks. For some reason, I am now again sleeping only 3-4 hours. Dr. Greipp or Dr. Druey - feel free to jump in and comment.
aporzeca Message
29 Aug 2009, 12:58 PM

Aminophylline is related chemically to caffeine, so if you take it or you take theophylline, like many SCLS patients do, which is a more potent and longer-acting version of aminophylline, then you will tend to be much more awake and nervous -- and sometimes downright nasty -- than normal. The things I've done to cope are (a) I take my medications several hours before going to sleep (say, at 7PM rather than 10PM), to let the effect wear off a bit, and (b) I also take in the evening one of the many anti-anxiety, tranquilizer medications available by prescription -- which, unfortunately, tend to have undesirable side effects of their own. Your own doctor should be able to help you, because it's a common problem that all asthma patients face; it's not an SCLS-specific thing.
claude53 Message
29 Aug 2009, 01:58 PM

In addition to the experience of Arturo, I think that it worth to control the blood theophylline rate. Indeed, an overdose of theophylline is possible. The blood rate should not exceed 20 µg/ml. Another solution is to divide the doses of medication on 24 hours : half of the dose at morning and at evening. Claude Pfefferlé .
clswalt Message
29 Aug 2009, 09:21 PM

Thanks for the quick response. I agree on the spacing out when you take the meds. I am following what Allen does taking meds at 6:30 am and pm. It works out a lot better than 3 times a day. I can work out now plus I am not as bitchy all the time. It worked for 6 weeks as far as sleep. I just wonder if it means anything now. I was also leaking every week and now have minor occurances that if I lay down and put my feet up high, it passes. I have not really leaked with a low BP since I changed meds. So is anyone monitored for something to make sure that sleep loss is not another problem that adds to our daily worries? I think the aminophylline works for me better than the theo -24 I was taking. The levels are great so I may back off from 1000 mg a day to 800. I can't believe it will hurt for thirty days until my levels are checked again.
greipp Message
29 Aug 2009, 10:01 PM

Agree with all that has been said about spacing the doses and taking the evening dose earlier. Sorry about the side effects. Sleep is critical - consider melatonin 3mg one hour before bedtime. Dr Phil Greipp
clswalt Message
29 Aug 2009, 10:42 PM

Hello Dr. Greipp Thanks very much. Is this the same 3 mg Melatonin like they sell at Walgreens.? Walt
greipp Message
30 Aug 2009, 12:04 AM

Walgreens melatonin is fine to try. Dr Phil Greipp.
clswalt Message
30 Aug 2009, 01:26 PM

I tried the melatonin last night. I did make a difference. Even though I did wake up at usual 12 minight, I went back to sleep rather quickly instead of laying there totally awake. I'll try it for a week and let you know. Again, thanks Dr. Greipp Walt
Ritz Message
1 Sep 2009, 12:51 AM

Hi Completely avoid caffeine, even chocolate. I also take Lexapro about 2 hours before bedtime. I was having a lot of trouble sleeping at first, but after three weeks I adjusted. Take Care, Ritz