Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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New sleep medication belsomra

Discussion in 'General Treatment' started by heapsreal, Jul 22, 2017.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    8:52pm here in australia and i have taken my first dose of belsomra for sleep.

    Belsomra is a new sleep medication that has only just been released in australia. Its not covered by the pharmaceutical benefits scheme here so full price is $56 for 30 x 20mg tablets.

    Its different from other traditional sleep meds in that it doesnt work on gaba receptors but instead on orexin receptors. Belsomra is classed as an orexin antagonist. Orexin is a neuro peptide that regulates arousal, so supposedly helps us fall asleep and suppose to help maintain sleep. A lack of orexin is said to be implicated in narcolepsy. The above information can easily be found on multiple sites through google.

    I have also taken lyrica tonight which is my normal medication i use for nerve pain i get in my legs during the night that can interrupt my sleep.

    Normally i take a z drug such as zopiclone or zolpidem with 5mg valium to initiate sleep and an antihistamine such as doxylamine to help maintain sleep. This generally gives me 6 to 7hrs sleep. On occassions i have bad nights and depending on what time i wake up i may take a low dose of something short acting or maybe tryptophan.

    So if belsomra is effective, Id like to use it for a month or two and hopefully this may reduce my tolerance to previous medications ive used and i can alternate belsomra with my previous sleep treatments every month or so.

    The above is not medical advice but is what I am doing under medical supervision and is presented for educational and entertainment purposes.
     

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  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Reviews i have read on belsomra have been mixed at best. But i have seen reviews from others who have had long term insomnia and under similar treatments to what i have used and it has been successful for them, so not just people who are new to insomnia and naive to medication for sleep. But i have also seen reviews where it hasnt worked at all.

    Time will tell. Thirty minutes has passed, maybe a hint of sleepiness coming on??
     
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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    10:35pm almost 2hrs. I feel a little groggy but not sure i feel like i could sleep but will lay down and see what happens, see if i drift off??
     
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  4. perchance dreamer

    perchance dreamer Senior Member

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    @heapsreal, 15 MG of Belsomra works well for me. However, I take it only every other night because nightly use really lessened the effectiveness. I alternate Belsomra with 100 MG of Trazodone.

    I used 20 MG of Belsomra for awhile, but I found that 15 MG was as effective and caused less next-day sedation. My sleep doctor said he's found that 10 MG (U.S. patients are required to start at this dosage) is not at all effective for his patients and the participants in the clinical trial at his practice and that some people need more than the 20 MG. So you might have to experiment a bit with the dosage.

    I'm so used to things not working for me that it was a pleasant surprise that Belsomra helps. Hope you get good results. I know you've struggled with sleep for a long time.

    An out-of-the box thing that helps my sleep is the Quell Pain Device. It's a device you wear below the knee. It's similar to TENS, but much more powerful.

    It does not help my pain, but it does help my sleep. When I called Quell and asked about this, the representative said they have had not other reports like this. It helps a lot of people with sleep, but that's because it helps them with pain. It may be really rare for someone to get sleep benefits without pain relief.

    However, as with the Belsomra, I can only use it every other day because daily usage lessens the effectiveness for me.

    Here's the technical explanation.

    https://www.quellrelief.com/wp-content/uploads/2016/06/science-behind-quell.pdf
     
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  5. geraldt52

    geraldt52 Senior Member

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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Not sure i can say belsomra was a success. I felt sleepy but not enough to shut me off. I lay in bed quietly for a couple hours comfortably, maybe u could call it a very light sleep. 1:30am i got up and to z drug to knock me out. I slept until 9 with one awakening due to the cat i had to put out side but fell back asleep.

    I feel abit hungover and i dont think its much of a sleep onset drug but more of a sleep maintenance drug. I feel crappy and not well rested.

    I will try it again and maybe take it with a z drug to help sleep onset and see how it goes. But i wont do it when i have to work the next day until i get a better feel for it.

    My dr mention his other patient needed as small dose of temaze with belsomra, im guessing for sleep onset.

    At this stage im not real sure about. I think for hardcore insomniacs they will still need another med with it to fall asleep. At the current price i dont think i will buy it again until the cost comes down. I can get the similar effects from antihistamines.

    Cheers
     
  7. Prefect

    Prefect Senior Member

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    Last night I had my usual wake up and can't go back to sleep at 3 am session and decided to try a novel solution I've been resisting for a long time.

    I had a bit of whiskey.

    It worked.
     
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  8. Alvin2

    Alvin2 Senior Member

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    Orexin is only a modulator of wakefulness, shutting it off will not guarantee sleep.
    When you wake up in the morning and feel groggy or are tired and groggy (usually in the evenings) thats because Orexin is likely turned off, the orchestrator is taking a break but the instruments can still play, they will just be out of sync.
     
    Last edited: Jul 23, 2017
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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I wish alcohol helped me sleep. Its just so easy to get etc but it has the opposite effect on me and my bladder lol
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Yeah i understand, but we dont know unless we try. Im sure for some it can have a knock on effect and help people fall asleep, as it does.

    I think of orexin receptor like the accelerator and belsomra is taking your foot off the gas, we may slow down but we may not stop or take a while to stop. Where the gaba receptor is the brake, hit the gaba receptor a its like jumping on the brake, although some of us need new brake pads too.

    I will experiment with it and try it with melatonin and want to try it again with my normal meds to initiate sleep and take it at the same time as belsomra and see if my sleep quality improves.

    I want to research it more but it feels alot like antihistamines. Im going to google and see what effects antihistamines have on orexin. It didnt have the dry mouth feeling one can get from antihistamines though.
     
  11. Alvin2

    Alvin2 Senior Member

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    I know a great deal about Orexin because its associated with Naroclepsy (which is why i would never try an Orexin interacting drug personally, but thats another discussion). As i said it orchestrates wakefulness and in narcolepsy the cells that produce it are destroyed, (likely through an autoimmune reaction). The symptoms of narcolepsy (which are life long and irreversible) are daytime sleep attacks, REM sleep intruding into regular sleep (hence destroying sleep quality), episodes of sleep paralysis, hypnagogic hallucinations, cataplexy attacks and so forth. The wikipedia article explains this well. Lets hope the drug can't cause any of these effects, and i assume they tested it for 6-8 weeks before it was allowed on the market. :bang-head:
    Histamine is a major player in wakefulness, anti histamines that cross the blood/brain barrier are usually sedating. Orexin modulates many neurochemicals as well as histamine (and including but not limited to dopamine, serotonin, acetylcholine, cortisol, etc).

    Why are you needing a sleeping pill, ME/CFS does screw with sleep and circadian rhythms, in my case it seems to be causing non 24 hour circadian rhythm disorder but sleeping pills (which don't work well on me) plus Armodafinil could in theory force me to function but at great cost, its simply easier to work with my body clock instead of loading up with high dose medications which can cause lots of other problems and won't work as effectively (in my case).
     
    Last edited: Jul 23, 2017
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  12. perchance dreamer

    perchance dreamer Senior Member

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    My sleep doctor is a neurologist who has treated narcolepsy patients for decades. He said some people can have mild narcolepsy, which seems to have been my case. My N. symptoms are gone now.

    My doctor thinks my symptoms came on as a result of a head injury and that the symptoms disappeared as my brain healed.
     
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  13. geraldt52

    geraldt52 Senior Member

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    I know that the conventional wisdom is that alcohol does not work for sleep, but that has not been my experience, and I may well have lost my mind from lack of sleep without it. After a disastrous withdrawal from a disastrous few years on Klonopin I have been fighting severe insomnia for nearly 20 years. I have tried most drugs, supplements, and home remedies out there, and found that most of them do more harm than good over the long haul.

    I've found that the trick with alcohol is not to try a couple of beers or glasses of wine before bedtime. Better to go to bed, get yourself "settled down" for maybe a couple of hours, then get up and have a shot (or a little more or a little less) of something with high alcohol content, so not so much liquid...I use vodka. If I immediately go back to bed I'll nearly always go to sleep when that wave of "relaxation" kicks in. It won't get me 7 or 8 hours of sleep, but it usually gets me a few hours...which as anyone who really suffers from insomnia knows is a tremendous amount better than no sleep at all.

    Caveat: mixing sleep meds and alcohol is dangerous, and if you're currently taking sleep meds you'll need to be off of them for awhile for the alcohol trick to work.
     
  14. Prefect

    Prefect Senior Member

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    Absolutely. Hard liquor is the answer, otherwise you'll spend the night making bathroom visits.

    In fact if you read old medical books about how doctors treated sleep problems in what this condition was called in the early 1900s, Neurasthenia, alcohol was in their sleep aid arsenal next to bromides and such.
     
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  15. Alvin2

    Alvin2 Senior Member

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    You have brought this to mind :woot:
     
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  16. Prefect

    Prefect Senior Member

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    Lol. The sad thing is medicine hasn't come all that far from the early 1900s in terms of understanding and treating this disease. President Roosevelt himself suffered from it.

    Sometimes I wonder if I'd have been better off living in those times because doctors would have given me some real sedatives for my insomnia and anxiety and sent me to a farm to only do physical work out in the country, instead of stupid SSRIs which my doc's got me on, calling my condition a mood disorder. She doesn't eve want to discuss the fact that my standing pulse is 90 when my BP is 100/70, which is insane for a guy who is in relatively good cardiovascular shape until my recent flare up.
     
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  17. Alvin2

    Alvin2 Senior Member

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    I've heard of secondary narolepsy but its not the same thing, the causation is completely different (as you've mentioned) and it can resolve since its usually not the same disease mechanism.


    You can send yourself to the farm and dose up on vodka and brain tonic :D
    Don't forget, Moxie prevents brain softening.
    Don't be afraid to ditch your doctor, wean of the antidepressant (carefully after research, they can cause life threatening side effects in some people when discontinued) and find some better physicians
     
    Last edited: Jul 23, 2017
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  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I am still function well and working. My sleep is controlled with meds reasonably ok but always looking at alternatives. I could just go with my heywired natural sleep cycle but then i wouldnt be able to financially support myself and my family. Plus with crappy sleep id feel much much worse and its not worth it, i doubt if id be able to work so treating sleep is quite important for me.

    Id say that for me and many other mecfsers that sleep issues are more than just circadian rhythm disturbances but all out insomnia as well as a lack of stage 4 deep sleep. I dont think theres any black and white answers and people have to weigh up the risks themselves on which direction they want to go.
     
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  19. Alvin2

    Alvin2 Senior Member

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    I see
    I agree that sleep is vastly affected, interestingly i have been finding acetylcarnitine (which increases acetylcholine) to have positive effects on sleep.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Wow thats the opposite of my experience with those supps. It shows how very undividual we all are. Plus our physiology is probably adjusting all the time.

    Ive tried many supplements but nothing i can say consistently helps. Tryptophan in doses like 2000 to 3000mg a few hrs away from eating protein has helped. I probably have more luck with supplements giving me an energy boost then helping me sleep.
     

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