2400+ Days Off - My Insomnia/Benzo Advice

[[Buddie]]

I wish I had insomnia lol I have non 24 instead and haven't met a single person that's healed from it

About HETLIOZ® (tasimelteon)

HETLIOZ® is a melatonin receptor agonist that is FDA approved for both Non-24-Hour Sleep-Wake Disorder (a serious, chronic circadian rhythm disorder) and nighttime sleep disturbances in Smith-Magenis Syndrome (SMS) in patients 16 years of age and older. In addition, HETLIOZ LQ™ oral suspension is approved for treatment of nighttime sleep disturbances in SMS in pediatric patients 3 years to 15 years of age.

There’s an FDA-approved therapy to help you improve nighttime sleep and decrease daytime sleepiness. Ask your doctor about the first and only treatment for people with Non-24 and nighttime sleep disturbances in SMS, called HETLIOZ® (tasimelteon).
HETLIOZ® is the first prescription medication approved to treat Non-24 and nighttime sleep disturbances in SMS.

In clinical studies, HETLIOZ® helped many people living with Non-24 and nighttime sleep disturbances in SMS sleep at [...] and stay awake during the day. Taken as directed by your doctor, HETLIOZ® may help you break the cycle of disrupted nighttime and unwanted daytime sleep that you've been struggling with.

The most common side effects associated with HETLIOZ® include headache, elevated liver enzymes (ALT), nightmares or abnormal dreams, and upper respiratory or urinary tract infection. These side effects may occur more frequently in patients 65 years of age or older.

HETLIOZSolutions™ was created to support people who have been diagnosed with Non-24 or nighttime sleep disturbances in SMS. The program can assist with coordinating care to help answer insurance questions, as well as provide financial support and educational resources. And most importantly, by letting you know that you are not alone on this journey.

If you have questions, help is available by calling HETLIOZSolutions™ at 1-844-HETLIOZ—that's 1-844-438-5469—from 9:00AM to 8:00PM, Monday through Friday, Eastern Standard Time.

[[Buddie]]

I wish I had insomnia lol I have non 24 instead and haven't met a single person that's healed from it

About HETLIOZ® (tasimelteon)

HETLIOZ® is a melatonin receptor agonist that is FDA approved for both Non-24-Hour Sleep-Wake Disorder (a serious, chronic circadian rhythm disorder) and nighttime sleep disturbances in Smith-Magenis Syndrome (SMS) in patients 16 years of age and older. In addition, HETLIOZ LQ™ oral suspension is approved for treatment of nighttime sleep disturbances in SMS in pediatric patients 3 years to 15 years of age.

There’s an FDA-approved therapy to help you improve nighttime sleep and decrease daytime sleepiness. Ask your doctor about the first and only treatment for people with Non-24 and nighttime sleep disturbances in SMS, called HETLIOZ® (tasimelteon).
HETLIOZ® is the first prescription medication approved to treat Non-24 and nighttime sleep disturbances in SMS.

In clinical studies, HETLIOZ® helped many people living with Non-24 and nighttime sleep disturbances in SMS sleep at [...] and stay awake during the day. Taken as directed by your doctor, HETLIOZ® may help you break the cycle of disrupted nighttime and unwanted daytime sleep that you've been struggling with.

The most common side effects associated with HETLIOZ® include headache, elevated liver enzymes (ALT), nightmares or abnormal dreams, and upper respiratory or urinary tract infection. These side effects may occur more frequently in patients 65 years of age or older.

HETLIOZSolutions™ was created to support people who have been diagnosed with Non-24 or nighttime sleep disturbances in SMS. The program can assist with coordinating care to help answer insurance questions, as well as provide financial support and educational resources. And most importantly, by letting you know that you are not alone on this journey.

If you have questions, help is available by calling HETLIOZSolutions™ at 1-844-HETLIOZ—that's 1-844-438-5469—from 9:00AM to 8:00PM, Monday through Friday, Eastern Standard Time.

This isn't available in Canada and I might try melatonin first. Also hoping it heals on its own with time since benzo wd is what caused it in the first place.

[[Buddie]]

If it was Benzo induced, it should fade and end....melatonin can be used to reset your circadian rhythm. 

Good luck!

[[Buddie]]

If it was Benzo induced, it should fade and end....melatonin can be used to reset your circadian rhythm. 

Good luck!

It was definitely benzo withdrawal induced. Started having sleep issues literally right when I tried tapering but ended up in severe withdrawal. I never dealt with any sleep issues in my life, not even insomnia. To have something as severe as I do now is so strange.

[[Buddie]]

Benzos are known to cause severe insomnia.  I've been on this forum long enough to have come across some buddies that had "ultra extreme" insomnia (my term).
One survivor only had 2 perceived sleep events in an entire month and that poor of sleep literally lasted an entire year.  Not that she only had two sleep events per month for the year, but her sleep wasn't much for an entire year, which seems impossible, until you experience something similar yourself!

[[Buddie]]

..and wear earplugs when sleeping

[[Buddie]]

Update:

I am closing in on 6 years off of my CT and my sleep is still slowly improving....how you might ask?

I sleep longer between waking up.  For about the first 4 years off, I'd wake up a lot most nights...sometimes 10 times per [...] but could almost always fall back to sleep, but some nights it could take an hour or longer.

I didn't get much more than 2 or 3 consecutive hours of sleep during that time

Today I sometimes get 4 and 5 hours of consecutive sleep before waking up and that's usually to pee....LOL 

I'm writing this to give you [...], not to scare anyone.  My life returned to "normal" or pre-benzo several years ago.  Today, I average 7-8 hours of sleep each [...].  My Fitbit shows about 1 hour and 15 minutes of deep and REM sleep each [...] with about 5.5 hours of light sleep on average. Sometimes my deep sleep is as high as 1 hour 45 minutes and my REM was as high as 1 hour 50 minutes.  Both Deep and REM sleep are physiologically and psychologically restorative!

[[Buddie]]

Benzos are known to cause severe insomnia.  I've been on this forum long enough to have come across some buddies that had "ultra extreme" insomnia (my term).
One survivor only had 2 perceived sleep events in an entire month and that poor of sleep literally lasted an entire year.  Not that she only had two sleep events per month for the year, but her sleep wasn't much for an entire year, which seems impossible, until you experience something similar yourself!

I definitely experienced zero-sleep nights for about 2 years after my rapid-taper from clonazepam. I was adamant about not getting on another prescription so I tried melatonin, Benadryl, medical marijuana edibles. That stuff left me groggy and toxic feeling, but at least it would give me 10-minute to hour intervals of sleep. Otherwise, I was utterly sleepless.
I don't know how I survived. It was and has been a total nightmare. I wasn't on the insomnia boards, though I should have been- my cognitive impairment kept me from knowing how to navigate this website adeptly.
Now, at almost 5 years off clonazepam (though I was on a bunch of other drugs that I rapid-tapered before clonazepam), I sleep about 4 hours per [...], sometimes more and on a rare occasions, less.
Completely natural for about 3 years. I am praying that my sleep keeps getting better, overall. We need it for recovery, resilience, and overall wellness.

[[Buddie]]

[...],

Sorry that you are still suffering from poor sleep.  Maybe some of the "newbies" could learn from your experience and resilience of living on 4 hours per [...] average.  I did that for awhile but not even 1 year...Kudos to you and here's hoping that your sleep continues to improve! 

[[Buddie]]

Thanks so much for sharing this really helpful post ❤️❤️ Also.. for addressing the Fatal Insomnia!! Wow.. it’s a relief to hear that I am not the only one who has self diagnosed myself with that horror 😳😬😩!!  This whole thing is new.. I have a long way to go.  But with prayer, determination and a family I love I will see it through