4 years ago I fell and hit the base of the skull, I never was unconscious; but have a MTBI and Post Traumatic Hypersomnulence (PTH). I damaged the sleep clock which is located in the brain stem. This is a very rare condition which has no current cure only medications to treat the condition and keep me awake.I've had multiple sleep tests and it shows that I have extremely severe PTH without medication (stimulants) I fall asleep within 40 seconds. However, the sleep that I get is only to level 2, and I wake daily unrefreshed like I never slept at all. It is affecting my quality of life, I'm prematurely aging from lack of refreshed sleep and my brain can not heal without deep REM sleep. I'm 48 y/0 and was 44 when this happened. By accident we've found that Xanax allows me to shut off but I still do not get deeper sleep. My sleep specialist wanted me to try Xyrem (aka GHB or street name ruffie). This medication is an extreme; there are huge gaps of time before and after taking the medication, that is missing. This is not a risk that i am willing to take. I must take stimulants in order to wake and remain awake, which is the treatment for PTH. I take stimulants in the morning 40-60mg of dextroamphetamine and don't take any more during the day. So the dronabinol or Marinol would be taken at bedtime, and by then the stimulant would be out of my system. I'm a woman that went from being a very health active female that didn't take any medication, to now having to take stimulants to wake and downers to go to sleep. My neurologist advised cannabis but in WA state where I live, cannabis is state legalized but my doctors are all federally licensed; cannabis is not federally legal. So this puts me in pickle since the dr's could jeopardize their medical licenses.So I'm stuck between a rock and a hard spot. I've never smoked a cigarette in my life, let alone marijuana. Bringing the subject up was uneasy for me until my neurologist explained that it could be in lotion or butter form. Great, but again the legal issue arises federal vs state etc. Could this medication possibly help and allow deeper sleep for me? My pharmacist, just told me to look into dronabinol/marinol and that this may be of help to me.
5 Jun 2012
I actually am considering trying the Xyrem. My sleep neurologist says there's a lot of pre-auth paperwork to be done beforehand - but I'm thinking about it. I have REM Behavior Disorder - I dip into REM sleep and bounce out to light sleep very quickly. You're right - no REM sleep pretty much equals no sleep. I take Nuvigil during the day- it works much better than the dextroamphetamine, Vyvanse and Intuniv that I was previously on. The Xyrem might be the trick - there are some really good user reviews on it. You mix it, take in while you are in bed, then set your alarm for 2 1/2 - 4 hours later to take the second dose - already mixed and by your bed. People say they - sleep - and wake up feeling like they've slept all night. Yes, there are some really off-the-wall sleep behaviors that can happen, but you wouldn't believe all the things I've done in my sleep during my life.
I could write a really funny book about that alone! I can't really comment on the marinol - really sounds like something you have no control over. Either your doctor would write for it, or they won't - it's their license that is on the line. Don't know if I've helped you - other than to suggest trying the Nuvigil - it's lightyears better than the dextroamphetamine. Regards - ElizaJane
- Dronabinol Information for Consumers
- Dronabinol Information for Healthcare Professionals (includes dosage details)
- Side Effects of Dronabinol (detailed)
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