[Teresa333]

Hello, I am Teresa. I have had insomnia since I was 9. When I was 19, I started having episodes going weeks without sleeping. I have been in the hospital 7 times for sleep deprivation and related suicidality. They were never able to help me there. No sleeping pill or tranquilizer works on me. Even 10 mg of klonapin doesn’t knock me out, so I stopped taking meds. They would just make me feel poisoned and not make me sleep. Has anyone experienced this? I feel like I am not human. I have been suffering so intensely for 20 years and feel beyond repair. I feel like I was made wrong with a broken brain and am uniquely cursed with the worst insomnia ever seen in history. It has ruined my life. I have never been able to work. Many days I can’t drive a car or hardly walk my dog and cook my meals. I live with my mom. I also have Limbic System Impairment / Central Sensitization Syndrome/ TMS/ Chronic neuroplastic pain, in case anyone has any clue what any of that means. I do DNRS brain retraining which got me out of a wheelchair but hasn’t touched the extreme burning throat chest and rib cage pain and insomnia.

I feel so alone. So utterly abandoned by God. So punished and so ashamed. No matter how much I try to believe it’s not my fault, I feel that it is my fault, and that if only I could make the exact RIGHT choices and do the RIGHT things then I would be REWARDED with sleep. Not being able to sleep feels like punishment for making mistakes. To the point that I wonder if I have OCD because my thoughts are so looping and obsessive about sleep and thinking about thinking. Can anyone relate to thought loops like this?

“OMG I am so sleep deprived and miserable and in so much pain I would do anything to get to sleep. I better do the right breathing, right meditations, right mantras. So I can get some relief. OK Here we go. Breathing, doing my mantras. Shit. It’s not working. OK let’s try a different technique. Is this going to work? How long will it take? Should I try a different one now? Oh wait. I’m supposed to NOT try. OK let’s try not to try for a while. OK, hours later, that’s not working either……why won’t my mind just STFU. What is wrong with me. Why can other people sleep? What do they have figured out? What are they doing right that I am not doing right? Where is God? Why doesn’t he have mercy on me and allow me to sleep? Maybe he is mad at me. What do I need to do to please him ? I should have more faith. OK let’s try that, here I go, practicing faith, trusting him to give me sleep. OK, that’s not working…..”

This is so traumatizing , heart breaking , and soul stretching. Can anyone relate. Yes I know about CBT I and have read the books. At first they helped and I practiced stimulus control. But when it’s really bad and I havent slept in days I feel too defeated and exhausted to get out of bed and do anything. Plus how can anyone concentrate to read when that sleep deprived. The only thing that sometimes helps at all is a super dumb TV show. But some times it takes me an hour to choose a movie or show and I overanalyze everything, feel bad and like a lazy person for the fact that I have seen every movie, worry about choosing the wrong one or something triggering, etc etc.

I need to know there is hope for even someone like me. The DIRECTOR of the big main stream psych clinic in my city gave up on me saying he had never seen anyone like me and that there was no medical human explanation for going so long without sleep and being so resistant to medication. Also it doesn’t matter how much I wear myself out or how PHSYICALLY tired I am, I can be yawning nonstop and still unable to sleep. My mind just won’t stop.
I jog, do yoga daily, swim laps, meditate, affirmations, pray, I am really trying.

[Greenleaf67]

Teresa, my heart goes out to you. I want to assure you that God loves you and I will be praying for you! It’s hard to understand why He allows suffering like what you are going through. I am sure He has a plan for you! Jeremiah 29:11 says: “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
When I have struggled with feeling like God doesn’t see my pain and struggle, I have found it helpful to remind myself of the times I have witnessed the ways He has been faithful in my life and in other’s lives. It reminds me that even when I can’t see the big picture, He can and that he provides in many ways to help me, some of which are hard to see in the midst of my pain and isolation. Jesus even told us that in this world, we will have troubles but to be encouraged because He has overcome it all. We all want relief from our trials. Pain is not easy to bear. Especially chronic pain such as yours. I want to encourage you that despite your sense of isolation, that He, indeed, does see you and is helping you through. That He is near and providing you with as much comfort as you need each day and each night. I’ve learned that just because I can’t feel it, does not mean that God has abandoned me. It means I am human and so are you. We can’t see the bigger picture and we need to trust that He does and is helping us day by day and night by night. That’s what faith is. Believing in what we can’t see because we have seen evidence of what we hope for. It’s not blind faith, its faith built upon what we have witnessed He has done and knowing that He provides according to His purpose in us. You are a living, breathing gift to the world, created by Him for a purpose. It could be that your story, your pain, your achievment of living each day (despite the profound hardships and suffering you experience) might be a testimony that has and/or will encourage others with whom you share it. Maybe someone you have or will come into contact with will be reassured that YOU are evidence of what they hope for. Consider that God is using you for a greater purpose, His perfect plan for someone else’s life. After all, living for Christ was never meant to be for ourselves. You have a purpose given by Him and no amount of pain or hardship can get in the way of that. Perhaps, your testimony will help save someone’s life from eternal pain. God might reach others through you and many souls may be saved through your example of Christ in you. If you believe in Jesus and that He suffered and died for you to give you eternal life, have turned from your sin and chosen to follow Jesus, you also will have eternal life. God heals, sometimes in this life but ALWAYS in the eternal life and you have that promise if you believe and follow Him. This life on earth is not all there is. There is so much more. Be encouraged! God truly loves you, cares for you and will provide all you need ( whether you sense it or not).

[Chee2308]

Hi @Teresa333

May I ask you a very simple question? So why are you so extremely obsessed with sleep?

[Edgar]

Because, Chee, sleep deprivation is torture. Figuratively speaking, imagine someone breaking your fingers and you trying not to think about your fingers. It’s tough.

[Chee2308]

Breaking your fingers eh… And then when you start zooming out to look at the bigger picture, you begin realizing it’s actually your other hand that’s doing the breaking. Interesting analogy though.

Any insomnia struggle is almost always self-induced and self-inflicted. Leave it alone and it leaves you alone. If sleep ability is completely lost, you would have ZERO sleep all the time and you won’t last very long either, the average being 18 months. These sufferers would often suffer many symptoms such as unable to speak coherently let alone get into a forum like this and type a ton of stuff complete with excellent grammar and punctuation! They would also have trouble walking even let alone show up at work, take a paycheck to take care of your family. The fact you are still around despite decades of “suffering” strongly suggests your sleep ability is fine, there was nothing wrong to begin with and therefore nothing to fix. Trying to fix an inexistent problem becomes the problem.

[Edgar]

Oh, no, I agree completely, this is exactly the kind of battle I fight from time on Reddit when people say they literally haven’t slept for weeks or months.

I didn’t get the impression from Teresa that she is one of those people. I could be wrong, though.

What I meant with the gruesome finger breaking analogy wasn’t that people were literally not sleeping for such a long time, but sleeping POORLY for a long time.

Quality of life is definitely impacted, and when your eyes are burning, your brain feels squashed, you are nauseous, but you still have to push through, work, and function, it’s very very hard to just ignore it. And life is about QUALITY, not QUANTITY, isn’t it?

I appreciate all the work you do here, Chee, I really do. But I can’t help shake the notion that your attitudes are sometimes reminiscent of the way they used to tell clinically depressed people that they are fine, exhaggerating, that they just need to go out more and whatnot.

You can’t just will insomnia away. As wonderful as that would be. I mean, some people can, people who have only has a slight brush with it, and they think it works for everybody, but for most it isn’t a “just be happy” kind of thing.

[Bronte]

Hi Edgar and Teresa333

I agree that you need to have true insomnia to understand it and appreciate how debilitating it is and how it cripples your life. Yes you can’t stop thinking about it and the utter desperation for sleep overrides everything else in your life. I do believe that Chee2308 has been there and fully understands how you and poor Teresa333 feel.

I feel desperately sorry for you Teresa333 as you clearly have a lot of problems. I too have TMS and neuroplastic chronic pain. I have had insomnia for 45 years. I did have a period of 10 days with no sleep at all. Fortunately I have responded to medication during my life to help me sleep and that is how I have survived it. It is only in recent months that I decided to come off all sleep aids. Hence I found Martin’s course and forum.

Teresa333 unfortunately I am not able to offer any advice based on your religious beliefs. However, I can comment about your struggle with TMS and pain. Interestingly the principles and treatments for these conditions and insomnia are the same. In fact insomnia is a TMS condition. They are all derived from a hyper alert nervous system, fear and ingrained neural pathways, usually stemming from childhood. I suspect you have experienced some kind of trauma when you were young. These neural pathways can be retrained and your nervous system can be calmed. I recommend looking into Curable.com (there is an app). After listening to this and exploring all the information you might feel up to reading some of the big authors who are Alan Gordon, Howard Schubiner, David Clarke, John Sarno to name a few. There are also podcasts.
With insomnia Chee2308 is absolutely right that you have to learn to change your mindset. You cannot just continue on the same track with the same attitude. You will not get better, sadly. You have to be receptive to changing the way you think about sleep. It is very hard work and it takes time to reduce the fear and improvement is gradual. You have to be very patient. I can testify that I have felt as desperate and exhausted as you but I have been able to find my way out, even after decades of problems.

Please look into Martin’s principles and open your mind and listen! I have also made great progress with the Mindbody techniques and education that you can get from Curable. Once you are able to calm yourself you can use this forum to gain knowledge in how to resolve your insomnia. I am still in the process of recovering but I can have some good nights, with the bad nights, which I never thought possible. Open your mind to new ideas and accept that you do need to make changes to the way you think. The help and information is out there for you so reach out and embrace it if you want to recover. Good luck!

[Edgar]

Wow, Bronte, that was really beautifully written.

I hope Teresa responds, it would be nice, I don’t know why so many thoughtful replies here are often left, as kids say these days, ghosted.

I will refer to only the part you wrote to me. Yes, I do have a lot of health problems, you are right. In addition to this chronic insomnia, I also suffer from multiple sclerosis and epilepsy.

I asked my neurologist if maybe my sleep problems might be connected with my MS, he said probably not. There are lots of people with MS who sleep great, and lota of people without MS who don’t.

I asked my psychiatrist the same question and she said probably yes, and gave me a diagnosis of organic insomnia and a prescription for Trazodone (a little more than a sugar pill for me, sadly).

Who is right, who is wrong, I will never know, but it ultimately doesn’t matter. I just wish I was well…

I remember one period of my life when I basically applied the ACT approach (before I even heard of ACT), and it worked great for a few years. But when insomnia returned in a different form, nothing worked anymore. I won’t hijack Teresa’s post, I just want to say that in some cases yes, a change in the way you think can lead to tangible improvements. But that was when I feared insomnia, obsessed about it all day long, dreaded the night, dreaded the bed, classic fear-fueled anxiety insomnia. As I got older and learned to relax, I developed this misterious mid-ldle of the night night/early morning awakening insomnia, and everything fell through.

I believe that the core of ACT, and CBT, is letting go of the fear. But I’m not afraid. I still live my life, I still work, I still socialize. And I still wake up too early every single night. Is it the MS or hidden anxiety, like I said, I will never know. I just know that it’s there for me to live with. And I know that with other conditions, like the ones Teresa has, sleep often takes a hit. You say you have the same conditions and CBT still helped, that is great. And after all that time, too. That gives hope to all of us, thank you. I still doubt that one approach can work for every single patient in such a complex issue such as insomnia, but your example shows we should never give up hope.

• This reply was modified 4 months, 2 weeks ago by Edgar.

[Bronte]

Thanks Edgar

I agree with your psychiatrist and think your insomnia is quite likely related to your MS and your epilepsy. I believe health fear is very powerful. What will happen in the future, will my symptoms get worse, these questions are always in your mind. I’ve had health scares and still have health issues and I empathise with you. You have a lot to deal with.

I’m glad to hear that you have reduced the fear associated with insomnia, although you still wake early, but maybe sometimes we have to learn to live with these nights, as I do too. As Martin says we don’t all need the recommended 8 hours! It’s great that you are able to live your life fully regardless of the insomnia and I’m sure you will gradually get some better nights with your positive mindset.

Actually CBT didn’t help me. I have gained a lot from Martin’s principles and also from the Mindbody arena. I prefer ACT and find that very useful with insomnia. I wish you luck and also hope that some of what we have all said can help Teresa a little.

[Edgar]

Nah, I don’t fear for my health, either, what will be will be. But thank you.

I also think ACT beats CBT in many ways, which is too intense for many.

Thanks again, and may your nights continue to be (mostly) all right.

• This reply was modified 4 months, 2 weeks ago by Edgar.

[Chee2308]

Hello @edgar

Thank you for your response and I appreciate it. Tough love is the greatest love.

I am sorry to hear about your health problems. But any case, I still encourage everyone to live a full and balanced life whatever their conditions. Because ultimately, we can’t control what afflicts us. But we can control how we live our lives. Living well in spite of daunting circumstances is graceful and elegant, in my opinion.

It is always possible to find perfection in a sea of imperfections. Indeed, it is because life is imperfect that it is actually perfect. Because it allows us to truly grow, mature and appreciate. Best wishes to you and Teresa.

[Edgar]

Hi @chee2308,

Yeah, like I said I know your heart is in the right place, even if your methods definitely sound like tough love. 🙂

Thank you for the wise words. Yes, ultimately we have to live with the hand we are dealt. After all, what else can we do. You have to live.

Thanks again, and sweet dreams to all!

[Author]

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