Long time Insomniac open to anything...
I'm going on 20 years without regular sleep. I go about a week and then crash for maybe three hours. For the first 10 years I just felt tired a lot. Now, I feel exhausted and frustrated, like I'm, losing my mind. My memory has been embarrassingly bad since this all started Sometimes even to the point where I forget the point of what I'm saying mid-sentence or can't think of a very simple word needed to finish my thought. Prior to all of this I had a very good memory. I've somehow managed to maintain my employment, although I'm about 50% on a even a very good day. I take way too much Tylenol to cope with the severe sleep deprivation headaches I endure nearly every day. Very seldom I'll have days where I feel so incredibly sleepy - actually *sleepy* - only to close my eyes to nap and then I still maintain semi-consciousness. In fact, on those rare occasions when I do "sleep", I am still extremely aware of my surroundings for the duration. I've taken various medications for years, such as benzodiazepines, Ambien and Lunesta. Lunesta has worked best. I've been taking it for six or seven years straight. Even though it only gives me one or two hours of light sleep a day, without it, I would've gone mad. I was nearly already there, which is why I was prescribed the medicines in the first place. At least with the Lunesta, I can maintain some semblance of normalcy. I have no real close friends, except for my wife. She listens (not so much anymore, understandably), but doesn't understand the unbearable agony of what it takes every day just to stand up. I so desperately miss that incredible feeling of waking up feeling refreshed after a good nights sleep. I'd give everything I own to get it back. I've tried over two years of CBT and it helped me to relax, push anxiety out of my mind, and put myself in a happy place, but it never leads to sleep. There is no compassion for insomniacs. Even work penalizes you when you yawn, like you purposely stayed out late. Their solution is to go to bed earlier. I can't count the likely thousands of hours I laid in bed "early" staring at the ceiling like a kewpie doll. I'm not sure there is any help for me anymore. I just know I really need some and to know I'm not alone, as selfish as that sounds.
If you've gotten through my ramblings, thanks for reading my poorly organized thoughts. No paragraphs (besides this one), just scrambled ideas emerging in the linear way my functionally-limited mind produces them now.
I feel your pain. I have been diagnosed with "Alpha Intrusion" - a kind of disruption to the brain waves in deep sleep. Many nights my sleep feels very light and not very restful. I also have Erythromyalgia, or "hot feet syndrome" which contributes to my insomnia because I have to soak my feet in cold water multiple times a night. I have restless legs, too. I'm 61 and thinking that I'll likely retire when I'm 62 as I've tried everything to deal with these issues and nothing has really helped. I take CBN gummies + 2.5 mg of Ambien every night. Without that, I'd not sleep at all! 🙁
What a painful sounding combination of problems! Have you been able to get support for the restless leg syndrome? You might be interested to know (and you may already!) that we have a sister site for support with Restless Leg Syndrome https://restlesslegssyndrome.sleep-disorders.net/
I have only heard of erythromyalgia in the context of other medical conditions, and I'm assuming that your doctor has ruled out those more common causes? I have some homework to do now!
What is your retirement plan?
Thank you for being with us @jmkroll - and for sharing your story with us! Warmly, Tracy (Team Member)
I’ve fought not sleeping about 15 years now, think I’ve tried everything there is to try to get some sleep. I found that ALL LIGHTS OFF, TV OFF AND 1 hit off a THC Vape and I can usually get 2-4 hours of sleep. Then I try to get a 2-3 hour nap after lunch, I’m retired so I have the ability to take a nap.
There are times I’ll have a 2 week period that I can only sleep 1-2 hours every 24 and have no reason why it happens. But at the end of two weeks I’ll end up going to sleep at some point and sleep 22-26 hours straight. Wake up feeling great but then I’ll start the struggle of sleeping all over again. Been tested for sleep apathy 3 times and always seem to pass the test, how I have no idea.
It’s so frustrating as it’s affecting my physical and emotional health..
I’ve given up, I’m 70 years old and figure this is what will kill me in the end, and to tell you the truth I’m ready for it to end any time. I hate me quality of life.
Hi
. My heart goes out to go. I am glad you are retired, so you can have a flexible sleep schedule. but you deserve to feel strong and healthy. Sleep apnea testing will not tell doctors whether you suffer from some other kind of sleep disorder. Have you considered finding a sleep specialist who will do deeper testing, like polysomnography, a multiple sleep latency test, or actigraphy? These are tests that are usually performed to confirm narcolepsy, but they can identify other sleep disorders as well. Thinking of you. - Lori (Team Member) 
hi there, I wanted to see how you are doing. I know you were going through a lot when you posted last month. It can be incredibly frustrating. Let us know how you are and if there's any other information we might be able to help with. - Liz (Team Member)
Good Day Christopher!! I'm dealing with a similar issue as well. I don't sleep and I'm up until around 4am ( currently it's 4:23 am) and like clock work if I do fail asleep I'm back up around 7am My psychiatrist prescribed trazadone (150 mg) but lately it hasn't worked !! When this occurs it's so frustrating. Thanks for letting me share. Hang in there..it won't always be like this!!😀
About two years ago my sleep doctor prescribed Dayvigo, one of a new class of sleep meds called orexin antagonists. No other med I tried -- e.g. ambien and ativan -- had any effect. These new meds have had a remarkably different, and effective impact, with no important side effects discovered as yet. I can tell within twenty minutes of taking it that I better get into bed, lest I do something dumb.
I am so thrilled you've found something that helps,
. It's easy to lose hope that new treatments will come along, but there is always something in the pipeline and you never know when it might be lifechanging. Thanks for sharing your experience. - Lori (Team Member)
