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I’ve been struggling with a sleep disorder for eight years now. It started as simply getting fewer hours of sleep when I was about 16 and in my final year of high school. At the time I thought it was because of stress due to coursework, university applications etc. I saw my school psychologist who recommended that I try following sleep hygiene guidelines, and try sleep aids like melatonin and valerian to supplement it.
I followed her recommendations and took the sleep aids as suggested. It helped for a little while but eventually stopped working. Gradually I adjusted to functioning on less sleep, and gave up on what I had been told. As time went on, my sleep duration continued to decrease.
About 2 years later I saw my GP about it, and he gave me another sleep hygiene/CBT regime (stopping caffeine after a certain time, limiting blue light exposure, stopping exercise after a certain time, having a consistent sleep/wake schedule etc.).
I tried all sorts of things in addition to what I had been told: meditation, yoga, stretching, more exercise, less exercise, music which is supposed to “tap” into your delta waves and make your sleep deeper, relaxation techniques with music etc. Unfortunately, nothing worked and the problem kept getting worse.
At this point, I was getting roughly 4 hours of sleep a night, if so much, and I had learned to function on that amount of sleep. Then the sleep began to become less and less restorative. Even if I slept for 4 hours, the sleep wasn’t remotely restful, and I remained exhausted.
My GP prescribed a low dose of Amitriptyline for three months. Unfortunately this didn’t help.
I had a sleep study done (2 nights) and determined that there are four problems: inadequate sleep duration, a mild periodic limb movement index, an extremely high spontaneous arousal index, and apparently little to no REM sleep (1.8% instead of the normal 15-20%). None of this was caused by “common” sleep disorders like sleep apnea, restless leg syndrome etc. The doctors had never seen a report like it.
After this, my GP prescribed Gabapentin, but that didn’t help either, and at the end of three months I stopped taking it.
I’ve reached the point where I simply can’t keep adjusting to the kind of sleep that I’m getting. The most recent doctor I saw has recommended CBT-I prior to more sleep studies including all the things I’ve tried in the past that haven’t worked including sleep hygiene, stimulus control and sleep restriction.
I know that CBT is the gold standard for treating problems like these, but I really haven’t found it helpful. Prior to this most recent round, the longest I tried CBT/sleep hygiene techniques for was ten months.
Has anyone experienced anything like this or know someone who has? If you have, have you found or tried anything that helps? I would be grateful for any advice or help.
I’ll chime in just to get the ball rolling, though I can’t really help. I have no idea what the right approach to treating non-restorative sleep is. I’m sorry you’re going through all this, though, for sure.
What do the people who did the sleep study say?
Is there a sleep doctor anywhere in your area? Your case seems perplexing, so maybe a bit too much for a regular GP.
That’s okay, I appreciate the sentiment all the same.
The people who did the sleep study are primarily focused on respiratory issues and sleep, so they advised me to go abroad to a more comprehensive sleep clinic. I’ve done so, but all I’ve been told so far is I need to do more sleep studies – the take home ones that are less stressful – and to try CBT-I again in the interim.
That will happen sometime next month.
Yeah, sleep studies are there basically just to determine if you have apnea of not. I don’t know why they’re sending you on more, don’t know what they’re hoping to find.
Don’t know much about gabapentin or amitriptyline, but I know they’re not your typical first line remedies for insomnia. Have you tried the more usual ones – ambien, seroquel, that sort of thing. If yes did they help?
I had sleep apnea as a child because my tonsils were too big for my size – but I grew out of it. I think they wanted to check to see if anything like that could potentially be the cause. I believe the studies to come are meant to be looking in depth at my “sleep architecture,” and I think trying to determine how much time I actually spend in each stage of sleep.
I haven’t tried the more usual ones, no, but I suppose after the next study I’ll hear what the doctor says.
You sound A LOT alike me. I am scheduled to do a sleep study next week. I wouldn’t be surprised if my sleep arousal index is through the roof, and I know there are some nights REM asleep is elusive. With that said-this started for me about 3-4 years ago. I have been prescribed Seraquel which works only when I’m exhausted already. I hope your sleep improves and you find answers. ?
Welcome to the forum and I’m sorry to hear about your difficulties with sleep, Aeglaeca. I was very disappointed to hear that the first form of advice you received was sleep hygiene, melatonin, and valerian — because none of these are effective treatments for chronic insomnia.
You mentioned that you tried stimulus control and sleep restriction. Why do you feel these techniques didn’t work for you? Do you recall what kind of sleep window you were observing when you were implementing sleep restriction? When you implemented stimulus control, were you repeatedly getting in and out of bed throughout the night?
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The content of this post is provided for informational and educational purposes only. It is not medical advice and is not intended to diagnose, treat, cure, or prevent any disease, disorder, or medical condition. It should never replace any advice given to you by your physician or any other licensed healthcare provider. Insomnia Coach LLC offers coaching services only and does not provide therapy, counseling, medical advice, or medical treatment. All content is provided “as is” and without warranties, either express or implied.
Hi Martin. The reason why I say that I don’t think these techniques have worked is because I have yet to see any positive change with this latest run (so far going for 1.5 months), and because during the last run (approx. 10 months), I didn’t see positive change/results either. In fact, during the 10 month run, my sleep became significantly worse.
The sleep restriction window I started with was about 7.5 hours, which, based on how I felt in the morning, was completely inadequate. At present I’m looking at a window of about 8.5 or 8.75 hours. That’s somewhat better, but it’s still very much a struggle for me to function.
The question about stimulus control is a little trickier to answer. I would say that I have roughly four hours of “true” sleep a night. Following that four hours, I will come to full awareness, and then for the remainder of my time in bed, I will drift in and out from full awareness to semi-aware (for example I’ll be aware of sounds or of what’s happening, but it won’t disturb me/I will have strange thoughts or things almost like dreams that don’t strike me as strange until fully awake). I think that this is likely me going in-between being awake and Stage 1 of sleep, though I can’t be sure.
Because I’m not usually 100% awake, staring at the ceiling and wondering why I can’t sleep during these periods, I don’t get out of bed. However, if I am completely awake and unable to sleep – which also happens – then I will get out of bed. I would say that I would usually only get out of bed once or twice if that were to happen.
Do you have any ideas about why it not be working for me?
How are you getting on, Aeglaeca? I suspect that CBT-I techniques aren’t working for you because you aren’t actually implementing the techniques.
If you are currently averaging four hours of sleep each night, your sleep window should be around five-and-a-half hours. Following a sleep window of eight-and-a-half hours is only going to guarantee you three hours of wakefulness during the night.
If you aren’t getting out of bed when you wake during the night, then you aren’t implementing stimulus control. Stimulus control, in particular, needs to be implemented consistently, every night for at least a few weeks before you will notice improvements. It took time for your insomnia to develop, so it will take time for CBT-I techniques to get your sleep back on track.
—If you are ready to stop struggling with insomnia you can enroll in the online insomnia coaching course right now! If you would prefer ongoing phone or video coaching calls as part of a powerful three month program that will help you reclaim your life from insomnia, consider applying for the Insomnia Mastery program.
The content of this post is provided for informational and educational purposes only. It is not medical advice and is not intended to diagnose, treat, cure, or prevent any disease, disorder, or medical condition. It should never replace any advice given to you by your physician or any other licensed healthcare provider. Insomnia Coach LLC offers coaching services only and does not provide therapy, counseling, medical advice, or medical treatment. All content is provided “as is” and without warranties, either express or implied.
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