REGARDING BACLOFEN vs XYREM - effects on EEG on polysomnogram for nap and overnight... Here is an article that might be more convincing for doctors to prescribe Baclofen for Narcolepsy.
In short, Baclofen and Sodium Oxybate (Xyrem) have similarEEG patterns, showing similar effects on improving quality of sleep, but Baclofen has a delayed reaction and thus lasts longer... That's why, for me, it is more effective to take it an hour before bed, and why, for me, it isn't necessary to re-dose on Baclofen in the middle of the night... (I take Baclofen in combination with Temazepam an hour ahead of bed.)
This is a study performed on healthy adults, ages 20-26. The article is tedious to read, but if you use Evelyn Wood's Speed Reading method, you can get through it... Basically they did a double-blind study to compare Sodium Oxybate, Baclofen, and a placebo to see how they affect improvements in sleep...
I AM NOT SUGGESTING THAT ANYBODY QUIT XYREM IF IT IS SUCCESSFUL FOR YOU... It is just that many cannot take Xyrem for various reasons, and their doctors are reluctant to prescribe Baclofen...
Here is the article, published by NCBI, which is a reliable source for research information:
Some questions for you Do you have N w/ c and if so, is the Baclofen more helpful for the cataplexy or is it helpful for both cataplexy and daytime sleepiness? I don't have cataplexy and I tried Xyrem after initially being diagnosed with N and it just didn't work well with me (could never wake up for the second dose, I live alone and it put me into such a deep sleep that I feared I wouldn't be able to wake up or move in an emergency) so I am currently on adderall but I have been curious about Baclofen, I just don't know much about it or what it targets best
Here is something that I wrote awhile back on Baclofen, and I post it when asked for more info about Baclofen:
Baclofen is a muscle relaxer. It has been on the market for 50 years. There are no known harmful effects from being on it long-term.
……Baclofen is a GABAb receptor agonist, as is Xyrem, but chemically different from Xyrem. Baclofen is derived from GABA. Xyrem is derived from GHB.
…..GABAb receptor agonists stimulate the brain to make more GABAb, a brain chemical that signals the brain to make other chemicals necessary for quality sleep. Narcoleptic sleep is broken. We have fragmented sleep patterns, and many of us don’t go into the deeper stages of sleep. With the production of certain brain chemicals, the body is able to regulate the sleep patterns for a restful night’s sleep.
…..Repairing our broken sleep is a big factor in being able to stay awake during the day. Stimulant meds may still be necessary, but they are more effective with a good night’s (restful) sleep.
…..Many people are successful with Xyrem. It changes lives. I cannot take Xyrem for various reasons.
…..a great number of sleep specialists are unaware of Baclofen as an alternative to Xyrem, and they are reluctant or unwilling to prescribe it. There hasn’t been much research on Baclofen for narcolepsy… likely because it won’t make anybody rich… It costs $8 per month.
…..There is a MODIFIED version of Baclofen (R-Baclofen) that is currently being studied… so far only on lab-created narcoleptic mice. Results are promising so far. I hope they can put this drug on the fast-track for human use… (I took articles about R-Baclofen to my sleep doctor to help convince him to let me try Baclofen.)
…I take Baclofen in combination with Temazepam. Some people who are on Baclofen are not using any additional meds for sleep. As with any medication, it may not work for everybody. We all have our own unique body chemistry. That is why there are so many different types of meds being used for the treatment of Narcolepsy.
…..I still take Modafinil in the morning. I think it might be rare that a person could be successfully treated with a single medication. For many people, a combination of meds is necessary to “correct” the brain chemistry.
I take Baclofen and Temazepam in combination, an hour before bed... I sleep well, but I can wake in the night if I need to... My husband is diabetic, and he has a continuous glucose monitor that is used in conjunction with his insulin pump... If his blood sugar goes too low (or high) it sets off an alarm on his pump... Somehow, he can sleep through the alarm... I wake up, and if he is low, I get him the sugared pop or candy that is always on the bedside table... When his blood sugars drop low enough to set off the alarm, he is often disoriented and doesn't realize that the sugar is there... His insulin pump will go into "suspend" mode at that point to stop giving him insulin until his blood sugars start to go back up...I've been on Provigil for ten years, and Temazepam for at least that long... Provigil was somewhat effective in the morning... better with coffee... but with follow-up MSLT, it showed that after the first "try not to fall asleep" period, I was unable to stay out of REM for more than 5 minutes... In period 4, I was in REM before the tech even got back to his booth to run the tests on the sensors. This told the doc that SOMETHING more had to be done...

He wanted me to try Xyrem, but then we found that there were various reasons that it was contraindicated for me... I did the research and found Baclofen, and he agreed to let me try it...

I started taking Baclofen in September, for sleep, along with what I was already taking... Since adding Baclofen, my daytime wakefulness has improved to the point that I rarely need a nap during the day... I have joined the land of the living...

Previously, I needed two very long naps just to function in between... every single day... And I was a zombie... especially in the morning... much difficulty getting out of bed, and much difficulty remembering what I was supposed to do to get hubby's lunch and breakfast ready, so he could head out the door... even though it was the same every day...

Now, I don't have involuntary sleep attacks during the day... I fall asleep in the right order at night... no dreaming before falling asleep... and I don't really remember dreaming much, except in the morning, during the lighter sleep phase that happens when we are supposed to be transitioning from sleep to wake...

I am able to remember things... went shopping recently and had forgotten my grocery list... I remembered almost everything on it! Plus, I am able to successfully drive long distances!
I feel like I almost need to print scientific literature and bring if to my doctors when I discuss adjusting medications and adding other medications to supplement treating all my symptoms (with my onset age traceable to 9 years old I've had the tetrad of N symptoms since I was 14 diagnosed at 21) There's good scientific literature on medication to treat various symptoms of N, but health care professionals seem unwilling to keep relevant with the literature.
You are right that this might be helpful for people who cannot tolerate Xyrem and whose doctors are hesitant to prescribe Baclofen. Doctors like to base their treatment plans on evidence. This is one study, on a limited population, but it carries much greater evidentiary weight in a doctor's eyes than anecdotal reports from other patients in an internet support group. Even more weight because it is human subjects and not mice
A big flaw is that the experiment was conducted on healthy subjects. It shows effects of sodium oxybate and baclofen on the sleep patterns and neurobehavioral performances of "normal" people, not narcolepsy sufferers.
healthy subjects still show comparative changes to show that Baclofen and Xyrem cause the same changes, and that the changes differ from the placebo. Healthy subjects would have less variation in their sleep patterns, and therefore, it would show generalized effects in a better way. I have been looking for objective studies on narcoleptic patients, but the only comparisons I have found between Baclofen and Xyrem / Sodium Oxybate were sponsored and monitored by Jazz Pharmaceuticals... big conflict of interest, and therefore difficult to discern the objectivity of the study... The wording that they used for their results in those Jazz Pharmaceutical studies was rather vague.
Thank you for that the last time I made mention of baclofen my sleep dr wouldn't enter into a discussion but I will ask if he is familiar with that article
Regular baclofen right? I take xyrem at night for narcolepsy with cataplexy I don't like putting the stuff in my body but I have improved some , funny thing is my pain doc for fybro has me on day time baclofen for muscle spasms and a pain patch I wear
I have had similar results as Becky and many people on reddit, (and I started taking it based on her recommendation a few months ago). The difference is even though I only need 5mg per day, and I take it in the morning(since if I take it at night it keeps me awake), I have been able to reduce my dosage of Modafinil by 100mg. Naps at first were completely eliminated, but I have found that napping is good for overal function for the day, but naps are way shorter now, and are restorative. It also has eliminated my sleep paralysis issues, and partial cataplexy, meaning I can get off my couch when I want to now.

For me it seems to have affected adderal a bit as well in that I can focus better, I am thinking I may be able to reduce dosage of it in the near future! I have found I am over focusing on things recently which is a nice change. And the longer I take it the better I seem to be doing.

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