15+ yrs chronic insomnia. Surely there is someone somewhere to help?

Long before I had a stroke, I struggled with insomnia.

First, in 1999 I learned I had sleep apnea. Getting a CPAP helped a lot.

But job stress and other factors kept me awake. Acupuncture helped a lot. I also practiced EFT (Emotional Freedom Technique, aka "tapping").

I was doing pretty well until I had a stroke seven years ago. The subsequent incessant pain ruined my sleep. I have always avoided drugs because they don't help and make me feel like a zombie.

But that's another story.

Please don't take this as anything more than a stupid question from a non-medically-trained stranger (who would like to help): Have you ever been formally assessed for generalized anxiety disorder (GAD)? Lot's of us simply cannot turn our brains off. I'm one such person. I fall asleep too quickly, according to my Samsung Galaxy watch and its managing health app on my phone. I get a nod of approval if I can stay awake for at least five minute after putting my head on my pillow, but I often get the orange or red square with the exclamation mark displayed prominently inside it. Now, I know some would kill for that problem 😀 but falling asleep is not my particular predilection. Instead, it is awakening near 0500 (I'm a night owl and am rarely in bed before 0030 hours, usually more like 0115). Once I have had some sleep, it's hard to get back to sleep.

I feel for you. You have apparently responsibly and actively pursued most/all readily available and do-it-yourself remedies or tricks. I do know that our bodies work actively to neutralize the initial potency of any medications over time, whether heart arrhythmia medications or sleep aids and mood-altering drugs. Sometimes all that works, for a while, is the optimism we have when we are suggested or offered something novel that we haven't tried.

I hope you get both carefully considered and useful suggestions here, and that you eventually find relief.

@gloaming I appreciate your kindness and respect and your response. I was so fearful to post here afraid of what I might get in response that would only make me feel worse.
I do think the issue started the culmination of events, kind of like the perfect storm, including some panic and anxiety around job changes and having children close together and I know there is an element of anxiety, but my sleep doctor says he often doesn’t see true insomniacs get better by trying to treat the anxiety. Obviously that’s what they are trying to treat with the clonazepam and alprazolam at night but now I’m only continuing to take those because I can’t just stop them without a taper.
I did throw my hands up to summer ago and tried to get on an antidepressant, but I could not get past 10 days without making the insomnia worse and losing weight. My doctors concluded that SSRIs did not work well for me.

But I do agree that sometimes someone’s novel consideration of a long-term problem could at least help me with some relief. That would be grateful to find five hours of sleep most nights, but staying awake the entire night 3 to 4 times a week is my norm down the last year.

Grateful for you.

I have a similar history with insomnia, since age 12 - am now 70. Nothing works every night, but most recently am using a sound machine, eye mask, and taking Trazodone, Seroquel and Mirtazapine, and recently added NUMO sleep gummies ( all natural ingredients with no Melatonin which have been helpful for me). To be honest, what seems to help most is the sound machine and NUMO gummies, and the eye mask as I am sensitive to any ambient light. I wish you great luck in finding a solution that works for YOU. I understand the frustration and health issues that come from chronic insomnia.

Well, These are shots in the dark but increase physical activity during the day. Try Yoga and meditations and body scans when you lay down. D/C all caffeine after 12 pm. D/C alcohol. Get out into nature. Did you do CBT-I?

I'm just trying to think of things that might help.

I exercise almost every day, including a hike on a mountain nearby no matter how bad I feel. I don’t drink caffeine do not drink alcohol and do not smoke. I have done CBT twice and body scanning seems to increase anxiety about not being asleep.

Of course, I have tried all of the normal things for regular cases. Keep em coming. Praying for a doctor/clinic for severe cases

Check into low-dose Naltrexone. I started taking it for my fibromyalgia but found it helped immensely with my sleep. You have to get it from a compounding pharmacy and it's not covered by insurance. The maintenance dose is usually 4.5mg/day. You have to start at a low dose and build up to 4.5mg/day. Then it can take several weeks to notice improvement. Most people have no negative side effects (I haven't noticed any.)

Here is one article about it now naltrexone can help with sleep: https://neurolaunch.com/naltrexone-and-sleep/

I so wish I could help you. I can only offer suggestions on how to cope with the situation, which may or may not be useful to you. So here goes.

I found that the practice of mindfulness was most helpful. I am not talking about sitting mindfulness meditation. I am talking about the kind of mindfulness that stays with you as you go about your daily activities, eating, showering, etc. This takes practice; it won’t come to you right away, but if you endure it will.

In your quiet moments, you can start by watching your breath without clinging to the expectation that a certain result must occur. This is important as clinging to expectation is what causes the suffering. When you can’t get what you want, you suffer. Once I reduced the clinging and just watched my breath, the suffering was so much less. Just pure watching. This takes practice. When you start, many thoughts will come into your mind. Don't let that scare you. As you practice, the space between each thought will get longer and longer, and before you know you will be watching with a silent mind. The silence is beautiful.

Also important: don't try to get rid of the thoughts as they come into your mind. That will never work. The more you resist, the more they will persist. Just let the thoughts be. You have a choice: you can choose not to feed them. The moment you feed your thoughts, they take you away from experiencing the peaceful nature of your mind. In other words, don’t feed your thoughts. Just watch with bare attention to the rise & fall of your thoughts, feelings & emotions until they dissipate. One part of your mind can stand aside and watch the thought mind.

Endurance is one of the most difficult disciplines, but it is to the one who endures that the final victory comes.

Here are some important quotes that might be of help to you:

The most difficult emotion is impermanent & will die down in time if left alone.

The moment you pay attention to your emotions, you will find that they lose their strength & eventually die out. However, when you are inattentive, you find that these emotions go on & on.

Thoughts & emotions by themselves are just momentary & possess no life of their own. By clinging to them, you prolong their stay.

When we see that emotions rise & fall in the empty space of awareness, they no longer rule us.

As soon as mindfulness occurs, we find that the mind acts no more; it stops like a witness to watch the inner state. When this watching becomes a constant habit, second nature, the cycle of reacting mindlessly to the environment is broken.

It takes 21 days to form a new habit, but once the mindfulness habit is established, it becomes an automatic reaction and is a most useful tool. You don’t have to think it, just happens automatically.

Learn to watch your mind like a witness, without likes & dislikes (Judging)

Let the desire thoughts & emotions just be without feeding them or clinging to them..

May you be free from your suffering.

I take doxepin (a tricyclic antidepressant) 40mg/night for insomnia. I am 70 years old. I was started on doxepin many years ago at higher doses for depression. I don't know if it ever did much for the depression but it sure made me sleep. I believe that it is prescribed at low doses 3-10mg for sleep. I quit taking it completely for a time but decided that the insomia wasn't worth it and went back on it, with medical supervision of course. I get it in 10mg capsules and will taper off to 30 mg in summer and 40 mg in winter. Been on it for many years. Side effects of dry mouth and eyes aren't even noticeable anymore.
I will also mention a substance that people are finding helpful for withdrawal from benzodiazapine's and for sleep is muscimol derived from the Amanita Muscaria mushroom. The difficulty with this is you need to seek a reliable source or find your own Amanita Muscaria and do the chemistry of decarboxylation yourself. Wild Amanita Muscaria contains ibotenic acid which can be dangerous to consume. There are reliable resources on this online. The rules wouldn't let me post a link.

I've been using ChatGPT as an interactive sleep journal and that is really helping me. I upload my sleep data from my tracker every morning and it gives me so much insight.