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.
Yes the medical profession is not really there to help you; they’re there to help themselves to you. None of them even want to apply their faculties to try to help. Most of them are just using charts and work instructions that almost anyone can follow but that you have to be a doctor to purchase for your use. None of them want to get paid to apply their education for your benefit even though that’s what they hold themselves out as wanting to do. Down with the doctors..
I really hope you eventually find a doctor who inspires confidence in you,
. It seems you've had a run of terrible experiences. Are there people you can talk to for recommendations, people who are happy with their doctors? Is insomnia your biggest issue or do you have other health conditions that need attention. It can be hard to get back out there and try again when you have felt dismissed so often, but you pay for your doctor's service and you need and deserve the best possible care. Warmly, Lori (Team Member)
You’re absolutely right
. A lesser talked about aspect of insomnia is just how lonely it can get across an extended period. No one really understands what you’re going through unless they’ve been through it themselves. And as well as that, when it’s actually happening, you’re all alone. Everyone you’d go to for support (if you have people) are asleep, and of course you’re not going to wake them up, knowing how precious sleep is. I truly believe it’s one of the most isolating things a person can go through, which is why these forums are so important for connecting people who know exactly what you’ve been through, and even if we can’t help, we can empathise.
Hope you’re doing well, take care of yourself!
P.S: Am writing this with little sleep/brain fog so sorry if some doesn’t make sense 😀
Being lonely is one of the greater aspects of insomnia, and I do not think it gets spoken about nearly as often as it should be. I love that across time zones there is usually someone online to chat with. This has eased a lot of the loneliness for me over the years, as I have friends all over the world. I know its not the same as having someone close on hand, but it has helped. Ho do you cope with those lonely hours? - Clair ( Team Member)
I am sorry about your situation. This is exactly how I feel now. No idea why all of a sudden I can’t sleep. I listened to the doctor’s advices. Turned off lights and electric and stayed in a dark room by 10pm every night. I just had my eyes closed and am completely aware of my surroundings. Tossing in bed until early morning. Get out of bed and go to work not feeling tired. As time goes by, now two weeks, I feel from stressed to frustrated, not knowing why this is happening all of a sudden. It’s actually scary, too. I really don’t want to rely on medication for the rest of my life. Quite depressing at this moment. 🙁
My heart goes out to you,
. That is a very long time to suffer with insomnia. It sounds like you have tried all the most common treatments, but I hope you never give up. Chronic illness often requires a huge commitment to self-advocacy, but it can be well worth it when you find treatment that is effective. Have you always been with the same health care team? If so, maybe it's time to look elsewhere even if you have to travel to find someone who can help. Here is an article about treatments: https://insomnia.sleep-disorders.net/treatment. You might find something there you haven't tried, but I do hope you will consider finding a new sleep specialist, preferably one who is open to trying new things. It's important to get new perspectives over time, especially when you have been dealing with insomnia for so long. I hope this helps and that others chime in with more ideas. Keep us posted if you don't mind. My thoughts will be with you. - Lori (Team Member)
