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.

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.

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 .

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.

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

Hello Dr. Greipp Thanks very much. Is this the same 3 mg Melatonin like they sell at Walgreens.? Walt

Walgreens melatonin is fine to try. Dr Phil Greipp.

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

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