Rest for the Wicked
So its been just over a year since the last sleep update.
Some time in June (I think) I switched sleep doctors. The new guy, after seeing my records, said something along the lines of "The other doctors are right, there are no other treatments out there." He gave me another prescription for Nuvigil, which wasn't helping much anymore and sent me on my way.
In September (I think) I read about two studies done by Emory University. The first discussed the use of flumazenil in treating idiopathic hypersomnia (something used to treat benzodiazepine overdoses.) The other discussed the use of clarithromycin (and antibiotic.)
After securing copies of these studies, I went back to the sleep doctor and gave him copies. I then asked to be put on clarithromycin (since flumazenil is currently by injection only and only lasts a couple of hours.) He agreed.
500 mg of clarithromycin twice a day helped, but not quite enough. Since the study noted that some patients continued with their use of stimulants, I added 150 mg of Nuvigil twice a day. This was great. I was awake, alert, in a good mood, and actually felt rested for the first time since I started Nuvigil (back in 2008 or so). Even better, I started to sleep only 6 hours a night, rather than 9-10. I woke up naturally before my alarm in the morning and stayed up later without consequence.
That great feeling lasted for about a month (maybe a month and half.) I'm still on it (at the same doses) and I feel better. Just not great. I'm more productive at work, I get up in the morning more easily (something the Nuvigil didn't address), and I'm more awake during the day. I still have my ups and downs. But both are generally higher. I sleep about 8 hours now. My creativity is pretty low, but I think that's a result of me being awake, rather in a constant half-sleep state. I don't think it's a direct side effect of the medicine. So far the only real side effects have been a bad taste in my mouth (hello tic-tacs) and loose stool, both common with antibiotics.
In the study, some patients were increased to up to 2,000 mg of clarithromycin per day (1,000 mg twice a day.) The sleep doctor doesn't want to increase my dose at all at this point (though I suggested it.)
He mentioned that I'm his only patient on clarithromycin. He said he spoke to his friend who heads the sleep center at Temple University Hospital and they don't have anyone on clarithromycin.
I was skeptical of taking clarithromycin. I've tried so many things and so few of them have helped. Even when I started to feel better on it, I figured it was the placebo effect. But after sleeping only 6 hours a night for a week and feeling great throughout the day, it became pretty clear to me that it helped.
It bothers me that a drug that's been around for 40 years and is cheap isn't being considered as treatment when other options have been exhausted. I'm not happy about being on antibiotics long term, but if it helps, I'm willing to do it. I don't know how long things will last, but they're still going ok after 3-4 months with no dose change.
Read more: http://www.livingwithhypersomnia.com/tag/idiopathic-hypersomnia-clarithromycin/
Some time in June (I think) I switched sleep doctors. The new guy, after seeing my records, said something along the lines of "The other doctors are right, there are no other treatments out there." He gave me another prescription for Nuvigil, which wasn't helping much anymore and sent me on my way.
In September (I think) I read about two studies done by Emory University. The first discussed the use of flumazenil in treating idiopathic hypersomnia (something used to treat benzodiazepine overdoses.) The other discussed the use of clarithromycin (and antibiotic.)
After securing copies of these studies, I went back to the sleep doctor and gave him copies. I then asked to be put on clarithromycin (since flumazenil is currently by injection only and only lasts a couple of hours.) He agreed.
500 mg of clarithromycin twice a day helped, but not quite enough. Since the study noted that some patients continued with their use of stimulants, I added 150 mg of Nuvigil twice a day. This was great. I was awake, alert, in a good mood, and actually felt rested for the first time since I started Nuvigil (back in 2008 or so). Even better, I started to sleep only 6 hours a night, rather than 9-10. I woke up naturally before my alarm in the morning and stayed up later without consequence.
That great feeling lasted for about a month (maybe a month and half.) I'm still on it (at the same doses) and I feel better. Just not great. I'm more productive at work, I get up in the morning more easily (something the Nuvigil didn't address), and I'm more awake during the day. I still have my ups and downs. But both are generally higher. I sleep about 8 hours now. My creativity is pretty low, but I think that's a result of me being awake, rather in a constant half-sleep state. I don't think it's a direct side effect of the medicine. So far the only real side effects have been a bad taste in my mouth (hello tic-tacs) and loose stool, both common with antibiotics.
In the study, some patients were increased to up to 2,000 mg of clarithromycin per day (1,000 mg twice a day.) The sleep doctor doesn't want to increase my dose at all at this point (though I suggested it.)
He mentioned that I'm his only patient on clarithromycin. He said he spoke to his friend who heads the sleep center at Temple University Hospital and they don't have anyone on clarithromycin.
I was skeptical of taking clarithromycin. I've tried so many things and so few of them have helped. Even when I started to feel better on it, I figured it was the placebo effect. But after sleeping only 6 hours a night for a week and feeling great throughout the day, it became pretty clear to me that it helped.
It bothers me that a drug that's been around for 40 years and is cheap isn't being considered as treatment when other options have been exhausted. I'm not happy about being on antibiotics long term, but if it helps, I'm willing to do it. I don't know how long things will last, but they're still going ok after 3-4 months with no dose change.
Read more: http://www.livingwithhypersomnia.com/tag/idiopathic-hypersomnia-clarithromycin/