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Your experience with CBT was exactly the same as mine. At the outset, I would fall asleep fairly easily but wake up after only a few hours. By the end, after five weeks of having to get up after 20 minutes of being awake, I also had sleep onset insomnia. I got so anxious about having to get up I couldn’t fall asleep at all.
I think there is a small percentage of us who need something a little less stimulating. Even our local sleep clinic claims only an 80% success rate.
I have finished my first read through of The Sleep Book, and it strikes me that the techniques outlined in the book are precisely what my Grief Counsellor trained me on three years ago. Her take on it was that two 20-minute daily sessions of mindfulness (with a focus on the breath) would help me stay calm and help me sleep.
Life got in the way, subsequently, but I do know these techniques already. Most of the time I can just live with my thoughts, but the one that always makes me alarmed and alert is the thought that my husband will die from his cancer, whether it be in a year, or five. That one I am not able to just welcome in (for obvious reasons).
Now, with the Coronavirus changing all of our lives, I have a new thought to keep me alert: what if our hospitals become so stretched for resources that they start to triage cancer patients? My husband, with his stage 4 cancer at the age of 70, would be in the group that would be triaged out.
Of course that hasn’t happened, and it may not, b ut the mind is wilful and thinks what it wants to think.
I’m jumping in here after reading the first two chapters of The Sleep Book and now being convinced that this is the way for me to go.
I’ve had insomnia virtually all my life, since I was a child. I grew up in a chaotic household where my two middle-class parents apparently didn’t understand that watching loud TV at night and having arguments at 3 am. was not going to help their children sleep. I guess I learned that night time was not for sleeping, but rather waiting for the noise to stop so I could sleep.
I had insomnia all my life and ended up taking Ativan for 16 years so I could work. When I came off it 7 years ago, my sleep seemed to be okay for a few weeks, but it gradually faded away until I slept no more than 2 hours a night. It took me a few months, but eventually I started sleeping tolerably well again by just not worrying about it so much. We’re both retired. I don’t actually have to do much during the day. I thought it would be okay.
Then my husband was diagnosed with stage 4 cancer. And three weeks later we moved to a new city where we knew virtually nobody. We couldn’t stop the sale of our home because we’d already bought our new retirement home, so in the midst of the appointments with the Cancer Agency and hospital visits for scans and blood tests, I had to pack up 35 years worth of belongings and move us.
I am now the sole caregiver. Needless to say, sleep went out the window. It got so bad that my GP put me on mirtazapine, and when that stopped working, Seroquel. When that stopped working I had a year without sleep again and he prescribed 1/3 gm Lorazepam with 25-50 mg Seroquel a few months ago just so that I can stay sane and do what needs to be done.
The thing is, I know this is a temporary relief. The medications might keep working, and they might not. My husband might live another 3-5 years on chemo (and yes, that is a possibility), and he might not. I need a bit of certainty in my life.
I tried CBT – I last year and made me so stressed my sleep actually got worse over the 5-week course of “treatment.” Getting out of bed constantly during the night made my heart race and pound and there were many nights where I felt that suicide was actually the preferred option. During the last week I got about 10 hours of sleep in total. I never did get to the point where my sleep drive overcame the racing heart. I had severe panic attacks throughout the program. So that is absolutely 100% the wrong approach for me.
I think ACT will work for me because in the past I just accepted that insomnia was a part of my life. I’d have a couple of bad nights and return to my normal. And as recently as 6 years ago I got my sleep back on track simply by making a pact with myself not to make such a big deal of it.
Even though I’m on medication now, I’ve just started some of the methods described in The Sleep Book. I learned to meditate three years ago, though a grief counsellor. I gave up the practise during a three-month cancer emergency, but it seems to be exactly what is described in the book and I can start that again.
I see in this thread that many people have had greatly improved sleep, and I hope I’ll be one of them.
Cheers.
I haven’t taken Martin’s full course yet. My personal circumstances are pretty bad right now, and my GP wants me to sleep as much as I can so I do use the antidepressants at least twice a week, as well as one other one that works on a one-off basis.
I have in the past overcome a very bad, long bout of insomnia, following withdrawal from over 15 years on a benzodiazepine, and that was by convincing myself not to worry so much about it. It took a few very tough months but I did get back enough sleep to have some quality of life. I was generally sleeping between 6 and 8 hours a night, with a couple of 5-hour nights each week. That lasted until my husband’s cancer diagnosis, and then it all went out the window, needless to say.
I do plan to do the course at some point. I’m pretty sure that CBT is the only way for any of us to get back our sleep naturally. Yes, the pills work, but most doctors here won’t prescribe them (though under the circumstances I’m lucky to have such a supportive doctor) and I hate being at the mercy of medication.
Okay, first off, stop panicking. It won’t help, as you’ve already realized, and it will just make you worse.
There’s a lot of good advice on this forum, especially with tips on how to implement CBT Cognitive Behavioural Therapy for insomnia, so you should browse some of the posts. Martin also has a free two-week course here on this website that I found very insightful and I recommend it.
In the meantime, here’s what this old insomniac knows:
You’re so focused on getting to sleep that you’ve made it impossible to sleep. If lying in bed awake makes you stressed, then don’t do it. Forget about sleeping altogether. Get up and go somewhere else, read a book, have a cup of tea, listen to some quiet music, eat something, watch TV if you must, in order to get your head away from the insomnia. Lying in bed stressing is boring as hell on top of exhausting, so get up and do something more fun.
Put your clock away. Seriously. If you have to set the alarm, put the clock under the bed where you can’t see it. Don’t look at it once you go to bed. That way lies madness.
Don’t allow yourself to stay in bed all morning, either. Get up with the sun. In fact, if you can go outside for some early morning rays or even a walk, you’ll feel better. Honest.
Alcohol will not help your sleep. It might knock you out for a while, but then you’ll get the blood sugar drop and you’ll wake up. And if you drink a lot, you’ll be exhausted AND hung over. Forget the alcohol. It’s a dead end when it comes to sleep.
I’ve lived with insomnia on and off for much of my life so I’m not the best example of a success story, but I do know that as soon as the panic reaction sets in, I have to get up and go somewhere else, because if I don’t I’ll drive myself gaga. I’ve been where you are many times over the years, and I finally learned that awful though insomnia can be, it’s always much worse if you freak out over it. And if you calm down, it will get better.
These days most of my bad nights now are spent either lying quietly in bed or on my couch with my cat and a book. Often just moving to the couch will send me to sleep for a couple of hours. I’m definitely the poster child for chronic insomnia, but at least I don’t drive myself completely nuts over it any more and my days are much better for it.
You might try planning to stay up for the whole night. Sometimes, when I really can’t drift off, I just forget about sleeping altogether and get up for the rest of the night without even bothering to go back to bed. That takes the pressure off and I can focus on something else instead of the insomnia. My time is more enjoyable and I almost always sleep a lot better the next night.
Since your insomnia is recent, you will be able to get over it. Honest. Most of all, stop catastrophizing the insomnia. It will pass.
Breathe.
Ele,
Mirtazapine made me very hungry for the first month and I found that eating a big protein and high-fat breakfast really helped with the hunger pangs. Loads of salad and water, too. Over time the hunger diminished and in the end I only gained 3-4 pounds.
As for the withdrawal, it wasn’t difficult. I was taking the full 15 mg pill for 6 months and then it stopped working for sleep, so I just cut the pill by 1/4 every three or four days. It was no trouble at all.
Interestingly, once it stopped working for me, I was still able to use it on a one-off basis as long as it wasn’t more than once or twice a week.
Deb, I can’t help you with using ACT to get off your sleep meds, but I do know how to get off sleep meds without CBT/ACT. I took 1 mg Ativan every night for over 16 years and came off it without too much trouble over three months. That might seem an excessive time, but I had virtually no withdrawal symptoms even after being so habituated to the medication.
You didn’t state what you’re taking, but the strategy is to go slowly and make cuts of 10% of your current dose every week or two, depending on how you feel. This strategy was first suggested by Dr. Ashton a while back, and a lot of people get off medications successfully this way.
I would not suggest a 50% cut of any medication you’ve been on for any length of time, particularly the benzodiazepines and z-drugs but also antidepressants, though to a lesser extent. That’s how you can end up with serious withdrawal symptoms. And I will add that most doctors, in my experience, do not know how to get their patients off medications properly. It’s not something they’re taught and they don’t understand because they’ve usually not had to go through it.
Interesting. Another morning waking up ten minutes before the alarm. And I’m starting to yawn a lot and feel sleepy even before I take my medication. I’ve been turning the light out at around midnight for the last week — about an hour later than my usual shut-down time.
Amy,
I took medication so I can’t really say I fell asleep faster because of this change (I did fall asleep, thanks to modern chemistry). I do know that having a consistent waking time is really important for the circadian rhythm, so that’s why I started there. It seems like it’s a really important part of the whole sleep/wake cycle.
According to the theory behind CBT, spending long periods in bed without sleeping is counter-productive. It’s hard not to do it, though, especially if sometimes you do eventually go back to sleep for a couple of hours after being awake for ages. I often lie awake for an hour or two, sleep for an hour, then wake for two to three hours, falling back to sleep at aroun6 am and sleeping until 8, at which point I feel groggy and useless.
Fun.
Hi Amy,
I, too, suffer from both sleep onset and sleep maintenance insomnia, and it’s been getting worse over time.
Your comments about your insomnia and CBTI could be me talking, especially the part about feeling that you had to “hurry up and fall asleep.” That was what I found so difficult about CBTI. After I got out of bed once, that was pretty much it for the night. All I could think about was, “Twenty minutes. Twenty minutes. I have to get up in twenty minutes.” No way to go to sleep with that in your head, right?
Because I had a failure with CBT before, precisely for the reason you expressed in your post, I haven’t fully embraced the whole CBT thing all at once this time, not yet, but I am taking small steps to get to it because it does seem to be the one thing that can help — aside from medication, which both of us know is a dead end.
I do still use medication occasionally because I have to sometimes, but I would love to live my life without it. Right now I’m bound to a life that depends on having a doctor willing to prescribe sleep medications, and those are few and far between here in Canada. It ties me to a small town that I would like to leave some day as I get older.
My first step towards instituting CBT is a simple one. Normally I stay in bed for ages, trying to get as much asleep as I can before I finally give up. I might sleep two or three hours or less over eight or nine hours in bed, and I might get out of bed anywhere between 5 am and 9:30 am. Last week I decided to get up at 7 am every morning, no matter what. I can be in bed and not be asleep as long as I’m comfortable and not flipping out, but I have to get up at 7 am. I will note that I was using medication this week because this is an especially stressful time for my husband and I (it’s the week before he has a CT scan to see if his chemotherapy is still working).
After one week, I am most encouraged by the fact that I woke up five to ten minutes before my alarm for the last three mornings, even though I am taking medication.
It may not seem like much, especially since I was using medication, but to me it’s a little victory. It means my circadian rhythm can reset even with the medication. It’s a tiny little change for the better. And 7am is a time that I can stick to under any circumstance and I can do this for the rest of my life. It’s not too early, it’s not too late, it doesn’t preclude the odd late night out, and I can be up and about and have a full day.
Yes, it will be a lot harder to do without medication, and I’ll be trying that next, but I’m sticking with it. It’s the one thing I can do, precisely because it doesn’t involve launching myself out of bed twenty minutes after I lie down.
A final thought. One of things that has always plagued me most is the thought that I’m alone with this. I lie awake and feel so alone. I wish I could be normal. I feel like I’m never going to feel better. I feel as though I’ll never have any kind of life. I only started to reach out to other insomnia sufferers recently, and it helps me to know that I’m not the only one and that my insomnia isn’t the worst experienced by any human being ever in the whole course of history since the dawn of time. It seems there are quite a few people who have had success with CBTI and maybe, in spite of our reservations about it, we can too.
Martin very generously does a free two-week course by email that I’m finding really useful, too. It challenges you to think about your preconceptions about sleep and insomnia. You might find it helpful. I have.
That is helpful to know since I’m in a bind at the moment. I was pretty sure I was told that last year when I signed up for the CBT course I took here, but then the CBT therapist got very upset if I used them so I thought perhaps I’d been mistaken.
My goal is to not need medication, although I don’t rule it out entirely. I just don’t want to depend on it all the time. I hate this feeling of being trapped.
I think what I’ll start with is a 7-hour window and move it back by half hours if I start to sleep a bit better. Right now just the thought of only having 5.5 hours in bed is too much for me to even think about. I get panicky at the thought. Also, I usually go to bed at 10:30 or eleven pm but if I do a seven hour window to start with I’ll go to bed at midnight, so I should be a bit sleepier than I normally am. 7 hours in bed is a lot less than normal for me, too. I often get four hours of sleep over an eight or nine hour period.
Thanks for the response. I appreciate it.
The two that worked for me without daytime grogginess were Mirtazapine and Seroquel, taken in sub-clinical doses. These are not benzodiazepines or Z drugs. I felt great when I took them, but they both stopped working after a few months.
Some people are fortunate enough (my sister is one of them) that these antidepressants work indefinitely for sleep issues. However, if you’re like me, once they stop working you’re back to square one.
My doctor and I are working on a medication regime to keep me sane until after my husband dies and I’ve had a chance to regroup. I didn’t want to be taking sleeping pills every night, so we settled on three times a week just to make sure I can function when I have to through this horrible time. I also found that I can take Mirtazapine or Seroquel twice a week because they work on an as-need basis (they stop working if I take them more often than that). If I can get three or four reasonable nights a week I’ll be okay.
After that I am committed to trying the CBT regime again. In the long term I’m pretty sure it will be the answer for me. A lot of my insomnia is hormone-related (including thyroid) but a big part of it is my attitude towards insomnia. At the moment it really is a disaster if I don’t sleep, but in the future, when I no longer have to worry about a sick spouse, that probably won’t be the case.
Could you ask your doctor for a low-dose antidepressant until your CBT program starts (such as the ones I mentioned above — Seroquel or Mirtazapine)? These are far less addictive and easier to get off and even at very low doses they can be wonderfully effective for insomnia. It’s not ideal, but it might keep you sane as a stop-gap measure.
The information brochure I received from my sleep clinic also said I shouldn’t discontinue sleep medications prior to the sleep test, which made no sense at all because then they can’t really tell what’s going on, apart from breathing issues.
Anyway, during my five weeks CBT course the therapist was really upset that I used my sleep aids (mirtazapine) a couple of times at the end of the first week. She said it completely negates the effects of the therapy. After that I didn’t use it at all, which was brutal.
Sablana,
The way insomnia hijacks our lives is astonishing. You and I were both fortunate enough to find sympathetic doctors who kept us able to work, but of course in the long run that isn’t a practical way to live. And yes, retirement hasn’t been nearly as fun as I hoped it would be. Even without my husband’s illness, most of the time the thought of travelling just wears me out.
I only started HRT six years ago, when I consulted a naturopath for the first time. Here in B.C. they are licensed to prescribe most medications, and she was shocked that nobody had started me on HRT previously. I use bioidentical hormones, which seem to be easier on the body in the long term. HRT no longer helps me sleep, though.
My doctor also prescribed cannabis (legal here in Canada). I was really hoping it would help, but it didn’t, and because I’ve always disliked the effects I gave up on it.
I try to exercise regularly, though the last year has been difficult because of my husband’s illness. Still, I have a brisk walk whenever weather permits.
It’s a puzzle.
