New Sleeping/Insomnia Medicine: Dayvigo (Lemborexant) — Here's My Experience

Discussion in 'Support' started by hans799, Dec 19, 2020.

    1. hans799
      Mellow

      hans799 Member Benefactor Hall of Fame

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      Hey folks,

      Just wanted to share my experience with Dayvigo (Lemborexant) which is a brand new sleeping pill, came on the market in early 2020 in the US and Japan.

      A lot of us struggle with insomnia. It is my #1 complaint every time my tinnitus spikes, too. I haven't really found any good options for it, even though I've read all the sleep threads here a dozen times. I tried Alprazolam (Xanax) and Zolpidem (Ambien); these sedate me heavily and leave me feeling like a slug until the next afternoon. Melatonin (tried all kinds of doses from 0.5mg to 3mg) doesn't help me sleep, just turns me into a zombie. Tried Valerian, it works, but only in large (500mg+) doses, and only for about 3 hours or so. Tried Mirtazapine (Remeron), didn't really do anything except give me side effects. There are several other antidepressants mentioned around here - I respect that these worked for many forum members, but using a drug for its side effects always felt like a risky hack to me.

      So I was very excited when Dayvigo became available. It's the second member of the orexin inhibitor family, the first one being Belsomra (Suvorexant). These drugs claim to work not by tranquilizing the whole brain, but by specifically targeting orexin, which is thought to be responsible for the wake drive. So instead of systemwide sedation, your brain function remains unaffected, except it no longer wants to be awake.

      Dayvigo's clinical trials seemed to be very promising. This is the first sleeping pill which is suitable for long-term use, they did a trial that went on for a year and the pill's effects didn't get weaker, in fact it became slightly more effective over time (compared to the beginning of the year, and also compared to placebo used for the same amount of time, too). Even better, there was no rebound insomnia, meaning that the participants could just discontinue the pill and their sleep was like before they started taking it - no physical dependence or withdrawal like with benzos. Also, sleep structure (e.g. deep sleep) was left intact, maybe even improved a bit.

      Overall, looked extremely promising. Just tried it, 5mg (which is the half-dose, the full being 10mg). Subjectively, it felt just like it was supposed to: my brain continued to work normally, except there appeared this strong drowsiness, great desire to sleep. I slept pretty well, had normal dreams, and when I went out to the washroom, I moved entirely normally. No sleep paralysis, nightmares, or any bad stuff.

      Now in the morning, there is still some mild version of that drowsiness left over, but "underneath" my mind is fully capable (unlike the zombie state induced by Xanax). It's also clearing up rapidly, I've been up for 45 minutes now and I'm almost back to 100%. I was in bed for a total of 7 hours, which is the very minimum recommended for this drug. Would probably work even better if I stayed in bed for 8.

      Best of all, my tinnitus is at the lowest end of its range of fluctuation!

      So overall, I found my new go-to option for sleep. This seems to be miles better than any other drug I tried. I don't plan on using it continuously (even though it would be actually an OK idea!!), but it's great to have a new weapon.

      Just wanted to raise awareness because there doesn't seem to be any discussion of Dayvigo around the forum, and I think it could help a lot of people here.

      Cheers!
       
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    2. BuzzyBee
      Bookworm

      BuzzyBee Member Benefactor

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Not Sure
      Thanks for trying it and sharing the results! Please keep the updates coming and let us know how it works long-term.

      I wonder if the lowered tinnitus was tied with the drug or just a better sleep?

      With the exception of Valerian, I've had the same results as you with all of the drugs listed. Ativan, which I took twice, did have the effect of lowering the tinnitus the next day, but it could have been a coincidence. And of course Ativan is not good long term.
       
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    3. AUTHOR
      AUTHOR
      hans799
      Mellow

      hans799 Member Benefactor Hall of Fame

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      Pretty sure it was just the better sleep. It's often lower in the morning for me. The key takeaway was just that the drug didn't make it worse... unfortunately, I didn't expect it to make it better, there's nothing in its mechanism of action that suggests that it could affect tinnitus.
      Thanks, will do!
       
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    4. DreiT
      Paranoid

      DreiT Member Benefactor

      Tinnitus Since:
      02/2020
      Cause of Tinnitus:
      Benzo caffeine insomnia earbuds
      Wow I want to try this drug. Is it ok if you're withdrawing from benzos?

      I have the exact same problem. I can fall asleep but wake up after 3 hours.

      Is this only available in America?
       
    5. HeavyMantra
      Bugridden

      HeavyMantra Member Benefactor

      Tinnitus Since:
      Steadily worsening since 2018
      Cause of Tinnitus:
      Unknown
      I've been looking for a sleeping pill that would make sense for me to take and works well, but I've found none so far.

      If this doesn't have adverse effects on tinnitus, this is great news!
       
    6. Turgy

      Turgy Member

      Location:
      Germany
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      acoustic trauma
      Is Dayvigo (Lemborexant) already approved in the EU?
       
    7. AUTHOR
      AUTHOR
      hans799
      Mellow

      hans799 Member Benefactor Hall of Fame

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      They compared Dayvigo to Ambien (which is benzo-like) and trial participants preferred Dayvigo. However, benzo withdrawal is a serious matter and you should talk to a doctor about it.
      The United States and Japan, currently.
      I've been following sleeping pill development closely for the same reason, and this is the first pill that seems to be good enough. Also google Daridorexant, which will be a molecule in the same family. Finished Phase 3 trials a few months ago and looks even better than Lemborexant. Even more effective and with less side effects. However it's still 1-2 years from hitting the market.
      No, unfortunately. Hope that's coming soon, though.
       
    8. friend74
      Doubtful

      friend74 Member

      Location:
      Germany
      Tinnitus Since:
      1994
      Cause of Tinnitus:
      Loud Music
      Where did you get it from? You are based in Europe, aren't you?
       
    9. AUTHOR
      AUTHOR
      hans799
      Mellow

      hans799 Member Benefactor Hall of Fame

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      Grey market (just Google it).
       
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    10. Dolgoruki

      Dolgoruki Member Benefactor

      Location:
      United States
      Tinnitus Since:
      07/2020
      Cause of Tinnitus:
      Hearing loss
      I have been taking Ambien shortly after the sudden onset of my tinnitus last July that made it extremely difficult for me to fall asleep.

      It's worked really well for me and have not built any tolerance to it just yet but my psychiatrist (based in California) mentioned I could potentially switch to Dayvigo. He mentioned it might be better for longer term use. I am now considering switching to it over the next few weeks.
       
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    11. Drachen
      Tired

      Drachen Member

      Location:
      United States
      Tinnitus Since:
      December 2020
      Cause of Tinnitus:
      Currently unknown; awaiting evaluation
      Wow, this is fascinating! As someone who has been struggling with various forms of insomnia for years now, trying several different sleep aids and alternatives along the way, this may be what I need to stabilize.

      My only concern is that given it is a new drug, there isn't anywhere near as much information on it compared to others in its field. Side effects and other potential concerns such as withdrawal are a big reason why I stay away from things like benzos or Ambien-like drugs.

      I still think I'm going to give it a shot given 1) my doctor thinks it's a safe bet and 2) my insurance covers it. The latter I am mostly worried about given how it's only been available on market for a year.
       
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    12. JayZee
      Stressed

      JayZee Member Benefactor

      Location:
      Canada
      Tinnitus Since:
      12/2020
      Cause of Tinnitus:
      Nortriptyline / Hydromorphone / Unknown
      @hans799
      Did you have any bad side effects from it?
      There's always something...
      I've learned that the hard way from antidepressants.
       
    13. Tweaker
      Transparent

      Tweaker Member Benefactor

      Location:
      UK
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      Noise exposure
      This sounds very promising. It is difficult to obtain a licence for Japan markets as the regulatory bodies have very stringent standards for registration. FDA of course also has very high standards. Roll on EU, UK filings. I would definitely try this, as insomnia is my greatest battle.
       
    14. Tweaker
      Transparent

      Tweaker Member Benefactor

      Location:
      UK
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      Noise exposure
      Looks like there are a handful of meds from the same family being pursued by companies.
       
    15. AUTHOR
      AUTHOR
      hans799
      Mellow

      hans799 Member Benefactor Hall of Fame

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      Of course there are, all meds have side effects. I didn't have any, personally. You could check the studies for what the researchers have found - it was low-impact stuff like next-day somnolence and headache for around 5% of study participants. Seems pretty trustworthy to me, but it's fairly new, so who knows what we'll find in the long term.
      Yeah, orexin inhibitors. I know about three: suvorexant, AKA Belsomra; lemborexant, AKA Dayvigo (this drug), and daridorexant, which has completed Phase 3 a few months back but isn't on the market yet. Based on my lay reading of the various studies, they get better in this order. Dayvigo's already very good but if daridorexant's Phase 3 results are to be believed, it's gonna be a wonder drug. Very prominent hypnotic effect, very prominent improvement in next-day function, almost no side effects.

      Orexin inhibitors are well worth watching.
      Hell yeah. This time it's not the regulatory agency that's slowballing things, the companies themselves haven't filed for approval. Which I honestly can't fathom, here's a bunch of rich countries with single-payer healthcare systems and stressed-out populations, do they not want our money? Lol.
       
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    16. Dolgoruki

      Dolgoruki Member Benefactor

      Location:
      United States
      Tinnitus Since:
      07/2020
      Cause of Tinnitus:
      Hearing loss
      @hans799 are you still taking Dayvigo, and if so, how's your experience one month in?
       
    17. AUTHOR
      AUTHOR
      hans799
      Mellow

      hans799 Member Benefactor Hall of Fame

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      Thankfully I've been sleeping very well lately, so I haven't been taking Dayvigo.
       
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    18. Dolgoruki

      Dolgoruki Member Benefactor

      Location:
      United States
      Tinnitus Since:
      07/2020
      Cause of Tinnitus:
      Hearing loss
      I tried it last night and had a terrible experience with it! I ended up experiencing sleep paralysis (which was really terrorizing) and barely caught any sleep.

      Dayvigo is definitely a hard pass for me.
       
      • Like Like x 1
    19. Lyta Norman

      Lyta Norman Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Unknown
      Just wanted to say that I second this review of Dayvigo!I had been trying to use melatonin (extremely hit or miss), PharmaGABA (also hit or miss due to the fact that it's hard to get the dosage right from day to day. Too much and the GABA converts back to glutamate. Not good.) After two months of poor to non-existent sleep I decided to use Dayvigo, based on the above post. I am using the 5 mg. dose and have to use it usually once at bedtime and once more during the night. I'm definitely dreaming plenty - does not interfere with REM sleep. I'm unclear ( only used it two nights, so far) if I am getting into the deeper sleep stages, yet. BUT, no spikes in tinnitus (noise induced hearing loss), and just getting sleep and not worrying or stressing about getting sleep is a huge plus.
       
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    20. Lyta Norman

      Lyta Norman Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Unknown
      Additionally, I feel that a sleep aid that blocks wakefulness rather than trying to induce sleepiness through manipulation of GABA receptors can be very beneficial. I have no side effects with this, and I cannot take Valerian (makes me WIDE awake) and many other herbal and prescription meds seem to cause my body to react in the opposite of what I am going for. Not a fan of Big Pharma. But this has been an (albeit temporary) godsend. I realize it doesn't translate into being the answer for everyone.
       
      • Agree Agree x 1
    21. Lyta Norman

      Lyta Norman Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Unknown
      Thank you for turning me on to Dayvigo @hans799!
       
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    22. AUTHOR
      AUTHOR
      hans799
      Mellow

      hans799 Member Benefactor Hall of Fame

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      Glad it works for you! Sleep is crucial and finally medical science is starting to churn out sleeping pills worthy of the name.

      Sorry to hear you had an adverse reaction to it, @Dolgoruki. May you find something that works better for you.
       
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    23. Jcmc

      Jcmc Member

      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      Very Loud Headphones!
      Are you still taking Dayvigo?
       
      • Good Question Good Question x 1
    24. DreiT
      Paranoid

      DreiT Member Benefactor

      Tinnitus Since:
      02/2020
      Cause of Tinnitus:
      Benzo caffeine insomnia earbuds
      Does Dayvigo touch GABA receptors? I can't take drugs that do.
       
    25. AUTHOR
      AUTHOR
      hans799
      Mellow

      hans799 Member Benefactor Hall of Fame

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      It works on orexin receptors, not GABA. I don't touch anything that screws with GABA, not even alcohol.
       
    26. DreiT
      Paranoid

      DreiT Member Benefactor

      Tinnitus Since:
      02/2020
      Cause of Tinnitus:
      Benzo caffeine insomnia earbuds
      Me too. Not even Magnesium.
       
    27. AUTHOR
      AUTHOR
      hans799
      Mellow

      hans799 Member Benefactor Hall of Fame

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      Slightly offtopic but I wouldn't worry about Magnesium. The problem is when you take something which bypasses the body's own homeostatic regulation. That's when you get a backlash as the body corrects. Magnesium is just a building block, it's "within" the normal bodily process.

      In fact, you cannot not take Magnesium. It's a common mineral, found in lots of foods. Don't worry about it.
       
    28. Jcmc

      Jcmc Member

      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      Very Loud Headphones!
      Are you still taking Dayvigo?

      Is Dayvigo non-ototoxic?
       
    29. TheRavenNZ

      TheRavenNZ Member

      Tinnitus Since:
      2020
      Cause of Tinnitus:
      Sudden sensoneural hearing loss - possible due to Shingles
      That sounds amazing - help with getting to sleep that can be used long term is exactly what Tinnitus sufferers need to live a normal life. I live in NZ so doesn’t look like I can get it here yet and will probably be a long time till we can :-(
       
    30. Matchbox
      Wishful

      Matchbox Member

      Location:
      BC Canada
      Tinnitus Since:
      August 2020
      Cause of Tinnitus:
      Noise Induced, Prednisone (drones), Barotrauma (distortions)
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