[aiw]

Hello all,
Thank you for being here and sharing your stories, struggles, and successes…they truly are invaluable for anyone in search of support for this dreadful condition. I’ve been experiencing insomnia since 2006 and now have anxiety due to health conditions created by the chronic sleeplessness which makes it even worse. Up until about 6 months ago I could count on getting 4 hours sleep pretty much every night but now with health anxiety on top of the sleep anxiety issue, I can only get from zero sleep to 4 hours…I don’t have to tell you it’s excruciating. The support I’m looking for is hope from people with very long-standing insomnia (sleep maintenance) and even their smallest successes. Feel free to ask me any questions you like. Thank you all again for being here!

[Edgar]

I know you’re not here anymore, but what the hell:

I wish this forum had a solid base like the old Sandman’s Insomnia Forum used to have a long time ago. Now Reddit and other social networks have taken over and they are full of all kinds of people, kids, and bots, rarely a genuine chronic insomnia sufferer. And even if one genuine case comes by, things just move at a such hectic pace you don’t get to discuss anything properly, it’s already yesterday’s news. So, you have superbusy sites like Reddit on one hand, and sites like Martin’s where a post gets maaaaybe one reply, if it gets any at all, and what’s worse posters don’t tend to reply bavk or say thanks for some reason. And I would have liked to share a few back and forths with you, I am a lifelong insomnia sufferer myself. Maybe you pop in despite no activity, and we’ll talk.

Edgar

• This reply was modified 1 weeks, 1 days ago by Edgar.
• This reply was modified 1 weeks, 1 days ago by Edgar.

[aiw]

Hi Edgar…I’m still here and posting on the week 1 forum mostly but would love to chat with you about this horrid life disrupter called insomnia! Thanks so much for responding 🙂

[Chee2308]

There is no such thing as a lifelong chronic “insomnia sufferer” imho. But there is such thing as a lifelong chronic obsession with sleep that it completely takes over your life and makes sleep as the main focus in everything that you do or think. But whatever you claim to have, it’s business as usual for your body. It will still sleep regardless.

[aiw]

Hi Chee, thank you for chiming in and reminding me insomnia is just a very bad habit of allowing fear to rule your life. I read Sasha Stephens book years ago but it helped only partially. Finding Martin’s website has been invaluable in learning, and overcoming, even more about this illness and how it can take over your life. I’m only in my first week of the 6 week program but can tell what he says is true because sleep WILL happen no matter what and that’s very comforting!! 🙂

[Edgar]

Hi, atw,

I hope you are doing well and that the course is helping.
I haven’t tried it myself, and don’t know if actively doing anything would help or hinder my sleep.

My insomnia is also of the maintenance variety. It didn’t use to be. For the most part of my 25-ish insomnia career I had onset insomnia, what Chee says fear of sleep and of not sleeping, but I overcame that and actually slept all right for a few years. But when insomnia came back with another method – waking me up too early, which has been going on for 8 years now, I just haven’t found a way to help myself. It’s like that sleepy feeling from the beginning if the night is gone, and now you’re wide awake.
Have you tried any therapy? I’ve tried low dose Valium, high dose Trazodone and a couple of times Ambien, but nothing really helped in the long run. I don’t think there is a pill that helps chronic insomnia, though I can’t say I’ve tried them all.

How do you manage through the day? I am generally all right till about 11 a.m., then I’m exhausted the rest of the day, which kinda sucks, but what can you do.

It’s really a tough hand to be dealt. I have managed to keep a career, to have a family life, but I wish I could enjoy it all more.

So how are you handling it all? Any tips and tricks after all those years?

[aiw]

Hi Edgar,
I’m so glad you came back…it’s nice to know I’m not alone in this and especially grateful to have someone to chat about all the nuances of such a long-standing problem. Thank you for reaching out!

I did try the doctor’s methods (antidepressants and benzodiazepines) but, like you, it was only ever a short term solution and unfortunately the docs left me on them so long I had to taper off them and go through even more torture. My insomnia has always been the sleep maintenance type and I believe it’s related to my digestion, and/or a very fragile CNS, with a messed up circadian rhythm. I fall asleep rather quickly and can get about 4 hours sleep (sometimes less) and then awaken quite suddenly as if something wakes me up…it’s never a gradual wake-up like I would get so many years ago. My gut feeling is it’s cortisol release too early (circadian rhythm issue) as my 3am cortisol measurement is quite high. I was up by 3:30 am for my job for years also. Have you ever had your 24hr cortisol checked? I’m hopeful that adjusting my circadian rhythm and working through Martin’s course will help me regularly get more than 4 hours a night.

Martin’s two-week free email course was very helpful in overcoming the burden of insomnia during the day as it reframes the thought processes and relieves the sleep anxiety. I’ve been retired for 2 years now so coping and doing the exercises is much easier than it would have been before.

I wish I had some magic for you Edgar but I think Martin really has the answer for insomnia as most of mine, I believe, is due to sleep anxiety. Luckily, I don’t suffer much with exhaustion during the day. Is it possible you have another medical condition that may be contributing to the insomnia? Have you ever had a sleep study?

[Edgar]

My situation is specific. Yes, I do have another condition – multiple sclerosis. I asked my neurologists if my insomnia could be related to that, they said no, insomnia is a common complaint in the general population. I asked my psychiatrist the same question and she said yes, and gave me a diagnosis of organic insomnia. So, in the end I’m none the wiser. In my heart of hearts, though, I don’t think it MS related.

My wake ups are the same. You described it so well. No slow waking up from a dream, more like flipping a switch.

My psychiatrist suggested a cortisol check, but we didn’t yet get around to that. You say yours is high, is there any way you could lower it? Sorry for being such a tool about cortisol, I never got around to exploring it in more detail, though it is mentioned on the forums from time to time.

As for a sleep study, no, I don’t think I could do it. Fall asleep in a lab with someone monitoring me, hardly. Have you had it? What were the results? I know there is an in home version of the test, but honestly after some 20 years of quiet suffering I have only relatively recently started to see a psychiatrist, perhaps we will get around to a sleep study soon. But other than ruling out apnea, I don’t know what else good it can do.

It’s good to hear you don’t suffer from exhaustion during the day that much. Have you ever wondered why? I’ve always assumed that not sleeping enough wreaks everyone as it is a basic human need, yet people do say they can get a lot done on very little sleep. I meam, I can, too, but I am NOT enjoying it. 🙂

It’s tough.

I also believe anxiety is at the root of most insomnias, maybe even all of them, but that knowledge does not help me when my UNCONSCIOUS mind wakes me up at 1, or 2, or 3… Isn’t it maddening?

I hope you are enjoying your retirement despite all this. You say you have had insomnia for 19 years, why 19? Can you remember a specific time around which it started or? Mine seems to always have been there in one way or the other, except maybe in early childhood. But when and why exactly I acquired it, who knows. In any case, the why doesn’t matter, only how to make it better matters.

• This reply was modified 6 days, 7 hours ago by Edgar.

[aiw]

You can ask any question you like, that’s why we’re here, to get support for insomnia struggles. I’m hoping that adjusting my circadian rhythm and working on my anxiety (from childhood trauma and insomnia) will lower my cortisol. It takes a lot of conscious effort to overcome the triggers that cause constant anxiety…fight or flight mode, survival mode, hypervigilance, or however someone might describe it. And I may need some therapy to help with it, but in the meantime, this program makes sense to me so I’ll give it the best chance I can. I’m sure when I find the answer, my anxiety and cortisol will come down at the same time.

I’ve had two sleep studies over the years…the first said I was having panic in the middle of the night and the second said I had sleep apnea after only sleeping 20 minutes and waking me up to hook up a CPAP! I’m currently waiting on a callback for another just to see if the science has any new insights since the last time. I tried the CPAP for a month but couldn’t get a wink as my sleep is so fragile.

I honestly believe my cortisol being so high (but not high enough to be Cushings) is what keeps me awake and functioning all day. But I still would love to get a full night sleep every night as on the occasional 6+ hours, I feel great! As it is, my mood suffers greatly every day and it is very tough!

I am enjoying retirement as it took 43 years to get here…thank you for that! And yes, my insomnia started one night in April 2006 when I woke suddenly and the monster was born. I was going through some personal crises that affected my health for the 3 years leading up to that fated night. However, my anxiety issues started the summer of 1986, most likely setting me up for the insomnia to follow 20 years later.

I hope you choose to have the cortisol test and a sleep study as at least they give you some answers and possibly a path for resolving your insomnia.

[Edgar]

They eoke you up on purpose, hooked up that machine, you couldn’t fall back asleep and they declared you have sleep apnea? Some clinic.

I heard someone refere to CPAP as “that dreaded Darth Vader mask” and I couldn’t agree more. I don’t think I could sleep with that thing on, either.

The thing is, with me at least, the more effort I put into falling asleep, like actual effort like a sleep mask or that machine, the less sleep I get because there’s more focus and more pressure to sleep. It’s a nasty circle, and a very delicate balance that can be thrown off easily.

My insomnia is also connected to a stressful event, as they often are. I was selected to do a presentation on college in front of the whole auditorium and couldn’t sleep for two days and two nights. Needless to say, it didn’t go well. That was when I sort of became aware of insomnia and when it kicked into a stronger, worse second gear, but looking in retrospect I relised I had it for a long time before that event. I never slept like the other kids.

I think our minds are just wired that way, I am a bit of a worrier and I’ve been a nail biter since the seventh grade, I get stressed easily and it all cumlinated in my sleep. I think you and I are alike in that way.

I think insomnia can start when you simply become aware it is a thing. When you realize it, it’s impossible to erase that realization from your memory, unfortunately.

Cortisol I will measure for sure. My psych said on the last visit that it is one of the things we have to look into next. I imagine it will show to be high. A sleep study, though, I don’t think so. I could never fall asleep in that lab, kudos to you for making it, even if it was for a short time only.

I like your spirit, you didn’t give up, you think positive and I believe Martin’s course WILL help you. Keep us posted!

• This reply was modified 5 days, 15 hours ago by Edgar.

[aiw]

Yes, I believe you’re right about us being alike…I’m also a worrier and bit my nails for years. I will keep things posted here and you too, as I’d like to hear about the results of your cortisol test. Thank you Edgar!

[Author]

Posts