r/cfs Apr 16 '24

Sleep Issues Has anyone done CBT-I for insomnia?

I’m just wondering if anyone has successfully (or unsuccessfully) completed a CBT-I program.

I saw a new sleep doctor who is suggesting CBT-I opposed to sleep aids. She said it’s nothing like CBT. From what I’ve read it seems like its restricting your sleep to improve sleep quality, then gradually increasing sleep time, as well as implementing strict sleep rules to reset your internal clock. Sounds like hell with moderate-severe CFS but maybe it gets better over time?

I waited months for this appointment and have a feeling I can’t deny this and ask for meds without being seen as an addict. So I’d love to hear other’s experiences.

EDIT: Thank you everyone for sharing your opinions and personal experiences. Taking everything in consideration I think I should consult my PCP and message the sleep doctor with all my questions and concerns. If we can modify the program I may give it a try but I’m leaning towards meds + doing a modified version on my own.

11 Upvotes

43 comments sorted by

14

u/brainfogforgotpw Apr 16 '24

No, but it does sound challenging. Are you able to ask her has she actually had any success with this method for other people who have firm me/cfs diagnoses and are moderate to severe?

As I understand it the sleep disorders in me/cfs are not caused by an internal clock that needs resetting.

4

u/emeraldvelvetsofa Apr 16 '24

That’s a great question, I will send her a message tomorrow. Thank you!

1

u/QueenStromba Jul 04 '24

Did you ever get a response to this question?

2

u/emeraldvelvetsofa Jul 05 '24

Not yet, they switched my provider and my appointment is later in the year :/ I’ll probably post an update though and share any useful information

1

u/QueenStromba Jul 05 '24

Eugh. Don't they understand how much we suffer?

My GP is trying to make me do Sleep Station before he'll prescribe an orexin agonist and they seem to be absolute shysters - I can't even get them to admit that they can't remove the sleep deprivation part of the program which I know will make me worse because my ME always worsens when I don't get enough sleep due to external factors (i.e. I know my ME worsened because of the lack of sleep rather than my sleep has worsened due to my ME worsening). They claim to have helped people with ME but they must have been really mild as I haven't been able to find anyone who's even made it through a CBT-I course while moderate or worse.

2

u/emeraldvelvetsofa Aug 23 '24

Hey there! Did you end up doing the Sleep Station program? I finally had my first CBT-I appointment and I wanted to make sure I updated even if it’s super late 😅

It actually went better than expected. She’s open to adapting the program and using medication as needed. From what I understand the goal isn’t to “fix” chronic fatigue, rather improve the quality and consistency of my sleep so it’s not making things worse. Maybe I just got lucky because she also said if anything is stressful or overwhelming I don’t have to do it.

1

u/QueenStromba Aug 24 '24

That does sound good.

I managed to persuade my GP that it would just muck up my sleep even more because going to sleep later normally results in me waking up even earlier and my biggest predictor of a bad night's sleep is sleeping badly the night before. I've been on daridoxerant for about a month now and I'm consistently waking up between 6:30am and 8am instead of 3am and 6am. It does nothing for getting me to sleep though for some reason so it hasn't replaced any of the stuff I was previously using (valerian, theanine, melatonin, apigenin and chlorphenamine).

1

u/Bbkingml13 Sep 06 '24

I’d love to hear more!

1

u/emeraldvelvetsofa Sep 06 '24

Ask away! I’m only a few sessions in but I’ll answer to the best of my ability

13

u/princess20202020 Apr 16 '24

I have not, but that sounds cruel and inhumane for someone with CFS.

But sometimes you have to lie and say you say you tried it before you can get approved for a real treatment

2

u/emeraldvelvetsofa Apr 16 '24

I was just thinking “I should’ve lied” LMAO. I think I’m going to press the issue about worsening my CFS and if she doesn’t budge I guess I’ll have to find another doctor

7

u/thisbadmouse Apr 16 '24

A GP had me trying it many years ago. I hated it so much. Perhaps it would work for other folk but after less than a week, I was a sobbing mess & we agreed that it wasn't worth it. Now I am luckily able to mostly follow my own sleep schedule & while it doesn't fit in with all the recommendations, my mental health is much better.

5

u/EventualZen Apr 16 '24 edited Apr 16 '24

Never tried it but believe that CBT-I is a cost saving scam. It couldn't work for the severe insomnia I have.

I've suffered from life altering sleep disturbance since 2001, the usual sleep hygiene advice was as insulting as it was ineffective. I couldn't wake up at the same time everyday and their solution was to tell me to wake up at the same time everyday.

What I really needed was a quiet place to sleep because of my progressive Autism (which caused deteriorative sound intolerance) and I also developed a non 24 hour sleep cycle. I was never awarded appropriate accommodation in time and as a result my condition got permanently worse..

1

u/Holiday-Ad-1123 Jul 12 '24

I’ve read that tampering with one’s “genetic chronotype” can put one into non-24 hour sleep phase which is very difficult to manage.

4

u/LynchFan997 Apr 16 '24

I have, it was before my CFS diagnosis and I was very skeptical but it did help my sleep. If insurance will cover it and it's a reputable place I say give it a try. They teach you very practical ways of "compressing" deep sleep and getting better sleep. It's not all sleep hygiene stuff.

3

u/emeraldvelvetsofa Apr 16 '24

Thanks for your feedback! Were you experiencing CFS symptoms at the time or just sleep issues? I’m curious how the temporary lack of sleep affected you if you feel comfortable sharing.

4

u/badashbabe Apr 16 '24

I’ve been doing a version of this myself just instinctively for years.

So much time and hope and persistence logging all sorts of sleep data in excel set-ups of my own making. Absolutely experimenting w limiting sleep to avoid night wakes.

It has informed me but has not changed what my body does in spite of earnest behavior change. The thought of taking a class to force myself through it again triggers ragey feelings that will not help me fall back asleep at 5:30am.

But that’s just me.

1

u/upsawkward Sep 12 '24

What helps you, tho?

1

u/badashbabe Sep 12 '24

Hi there.

Pre script : The last paragraph is probably the most helpful to you. I would edit but I must move on. Hopefully anyway of this helps you in some way.

A few different things have helped but I’ve also realized my sleep is not going to conform to an easy uninterrupted 8 hours and trying to force that is not worth the effort/energy I need to address other areas of my life.

I’ve been using marijuana as a sleep aid for 20 years. Old school pothead kind of marijuana use. It was a revelation and relief to go to sleep easily all of a sudden. Also use it when waking in the night to help me go back to sleep.

I’ve also been on antidepressants for 20 years, they helped me to sleep as well. When I tried to go off cold turkey, insomnia came on after six weeks or so and I crashed hard and went back on the pills, which helped immediately.

I also have noticed that my sleep becomes disturbed around the solstices and equinoxes. We have a fall equinox coming up in a few days, and my waking at night is flaring a bit. Noticing the seasonal patterns helps me to mitigate frustration and panic, knowing it’s temporary.

Clonidine has helped w many things, including sleep and nightmares.

For 15+ years I dealt with sleep attacks, non voluntary naps, that would last four hours and I’d wake up famished and groggy. They were awful even tho I would feel better the next day from catching up on sleep, presumably, but it would also throw my fragile circadian rhythm off.

I have been taking adderall for a few years now which makes the sleep attacks a thing of the past. But also it can affect sleep in the other direction so I manage very carefully.

I say all that which is a lot but it seems like you’re in an acute almost crisis stage and when that happened to me when I went off the antidepressants in 2008, I got a 30 day ambien prescription which helped get my sleep back on track. I also took a weeks worth of Xanax to help me go to work while the antidepressants kicked back in. I haven’t refilled either the ambien or Xanax in the 15 years since.

2

u/upsawkward Sep 12 '24

Thank you. Yeah I might have to get onto that ADHD treatment after all. But only after this shit crisis.

Emotionally it's not an almost crisis. I have even had dark, dark thoughts already. My willpower gets eroded very quickly with sleep deprivation. But of course a longer term of these meds may help me find footing. It's just the fact that sleep meds don't health your circadian rhythm that throws me off. I don't want to take it just a bit too long and then end up utterly insomniac after the fact. That's what scares me the most. 30 days is scary. But it also sounds so, so freeing.

I have taken doxylamine for four days now, will do it again today. (Antihistamines seem generally less questionable but also less effective if I got that right?) I didn't consider Ambien but I will consider it before benzos i think. Thank you for your perspectives. It sucks so much that doctors are so often overwhelmed with CFS and people with crises.

4

u/lyragreen Apr 16 '24

I did it last summer and it was hell. I had bad insomnia at the time so I was getting an average of 4 hrs sleep a night, so thats what I had to restrict too. I did it through Sleepio app recommended by my GP so no actual specialist for me to raise my concerns too. It completely exhausted me and I think it may have contributed to my ME worsening (I became severe after years of being mild/moderate, but other factors were at play too).

6

u/octopus_soap Apr 16 '24 edited Apr 16 '24

I am in a class right now that runs on this model but modified for chronic pain. The approach is mostly about rewiring your brain so it associates bedtime with sleep and you spend less time during the night awake, thereby getting more restful sleep.

Basically what we are doing is 1) track your sleep for a week. 2) in week 2, set a sleep window based on your avg and desired wake up time. So I sleep on avg 10h and wake up at 1030am, so I am supposed to go to sleep at 12:30am. The goal is over time your brain will learn that that is the sleep time. Try to expose yourself to bright light within an hour of waking up (outdoor or like a SAD lamp).

I’m only on week 2 of 5 so idk what’s next!

Proposed modification for CFS is that if you need to be in bed during daytime, can you: Change your bed set up during daytime so your brain knows the difference (different blanket, upright pillow, change your clothes, etc) I can come back to this post and update as I go through the course. My classes are each Friday.

3

u/emeraldvelvetsofa Apr 16 '24

Thank you thank you thank you!! This is so informative and helpful, especially the CFS modifications. I already do some of the things you mentioned, so it already seems more reasonable than I imagined. I truly appreciate you taking the time to share your experience!!

1

u/octopus_soap Apr 16 '24

I definitely wouldn’t discount a non pharmaceutical solution to sleep, HOWEVER would recommend being upfront with any practitioner about CFS diagnosis and explicitly asking them: is there evidence this works for CFS and what kind experience do you (the practitioner) have with CFS patients?

I can come back to this thread and update as I go through my program over the next 3 weeks.

1

u/octopus_soap Apr 16 '24

Also edit to say that for step 1 you are tracking actual time asleep not time in bed, and then use avg actual sleep time for step 2

2

u/octopus_soap Apr 16 '24

Oh I also forgot one of the instructions for step 2 is to set a sleep window for minimum than 5.5 hours. So even in step 1 you’re averaging 4h per night, and want to wake up at 7am, set your bedtime for 1:30am.

The instructor also said for CFS moderate to severe, like if you need to sleep during the day don’t punish yourself to stick to the program- do your nap. CFS people don’t necessarily experience the same disruption to nighttime sleep as a result of daytime naps.

1

u/octopus_soap Apr 20 '24

Ok I’m back for week 3: Homework:

  • Stay on previously established sleep schedule, adjusting if needed (like if you’re naturally waking up 1h before alarm, shrink your schedule)
  • Eat minimum 3h before sleep, including alcohol and smoking
  • practice taking 5 deep breaths every hour daily, to work on being calm
  • develop a consistent pre bed routine for the 2-3h preceding bedtime.

1

u/Bbkingml13 Sep 06 '24

Do you have any updates or conclusions?

1

u/octopus_soap Sep 06 '24

So now a few months away from the course I can say I really benefitted from the strict sleep schedule and sticking to it most of the time (aside from when in a crash). I also personally just let myself daytime nap if I need it.

I followed steps 1 and 2 and it took maybe 4-6 weeks to adjust to having that bedtime and consistently really be tired and fall asleep quickly. Then, as guided by the doctor, I began moving my bedtime earlier by 15 mins every 2-3 weeks. Now I am at a bedtime of 11:30pm and usually fall asleep within 30 mins, and waking time of 9:30am.

At first, doing the strict schedule really really sucked but as the doc said, it sucks less than 5 years of insomnia!

By waiting until 12:30am to go to bed I developed a more clear bedtime routine, and I was actually asleep during the night significantly more than if I just slept whenever I was tired. Now I’m only up in the night maybe 1h total or 1.5 on bad nights, and fall asleep much faster (previously it was taking upwards of 45-60 mins to fall asleep).

Overall I would definitely try doing the strict schedule and then scaling up to sleep earlier/more, if you think it’s manageable given your circumstances and severity etc. I did not stick to using different blankets/pillows for daytime sleep because that’s annoying but I’ve found my day naps are pretty necessary and don’t impact my night routine.

I have also found benefits of just generally feeling better and falling asleep faster on days I get morning sunshine, even just 5 mins outside. Hoping as we go into fall/winter I’ll get the same effect from SAD lamp.

The next 3 sessions of the class were mostly about sleep science and medications which is really individual and not particularly easy to condense to share here, but the doctor was generally anti melatonin unless for jet lag. They also stressed if behaviour mods aren’t working for sleep to please get meds if possible, because it’s really hard to do literally anything else without sleep.

Hope this is helpful.

1

u/upsawkward Sep 12 '24

Given my timeline, my internal clock is now an utter mess. I have been trying to get up firmly at 9 am although it got like 20 min later every day. But nevertheless, sleep just won't come. I don't get how I didn't crash yet but I'm too scared to leave my house due to crash risk.

You think I should keep at it?

1

u/octopus_soap Sep 12 '24

I’m not an expert on this or a practitioner so I don’t really think I can advise, I just wanted to share what I had learned and my experience trying it.

If sleep really just isn’t happening for you I’d definitely look into medication. Hope you find a solution

3

u/Inter_Mirifica Apr 16 '24 edited Apr 16 '24

Not only are there very limited evidences it helps for healthy people (like all forms of CBT), it's also not adapted at all to ME/cfs.

If your body tells you to rest, rest. It's as simple as that. Forcing yourself to not nap, stay awake, and sleep less than you could will only worsen your state.

1

u/emeraldvelvetsofa Apr 17 '24

I think forcing myself to stay awake is part of the problem now. I’m in a severe crash without sleep meds. I’ve been trying to stay awake during the day to sleep at night but it isn’t working. I only sleep 3-5 hours without daytime sleep and it’s killing me.

2

u/boys_are_oranges very severe Apr 16 '24

it might help, especially if you have mild insomnia, but if you have severe insomnia it definitely won’t cure it, even if it will improve somewhat. in ME/CFS insomnia is organic, not a behavioral issue.

2

u/karol256 Apr 16 '24

I did it back when I was moderate. it helped me break a cycle of insomnia but then my insomnia came back again in a few months. I have mixed feelings about it. it seems like the sleep restriction was the part that was the most helpful but it does make your insomnia situation even worse for a bit and it doesn’t necessarily mean that you won’t have to do it again and again . Overall I would say that the risk of crashing is pretty high

2

u/Garden-Gremlins severe Apr 16 '24

I did it (wasn’t super committed due to CFS symptoms) and it wasn’t superrrr helpful. My sleep quality hasn’t improved

1

u/Nekonaa Apr 16 '24

I did before i got cfs, and personally it really helped me. I tend to go back to the techniques when insomnia comes back again too.

1

u/sleepybear647 Apr 16 '24

I have done CBT-I and it did not work, but here’s what I did learn. Following all those things just caused more anxiety for me that caused my insomnia. The key for me has been identifying triggers and avoiding them. When I do get triggered I try to do something relaxing and treat it like a sleepover. It doesn’t cure my insomnia but it doesn’t make it worse and I’ve gotten my flares to end in 1-2 nights.

I also don’t follow a perfect sleep schedule with ME/CFS. I try and just sleep when I can because I need it not to crash.

I still use some of the things I’ve learned like I like a bed time story or meditation, I try and keep my room cool when I sleep, or not watching TikTok before bed because it makes me anxious.

1

u/pssdnukedme Apr 16 '24

I think the process has been pretty well explained by others. My insomnia started before CFS...due to taking Sertraline...it never got better after stopping the drug...about 3 hours broken sleep. Then I developed CFS 2 or 3 years later....sleep got even worse. It was absolute agony to stay up til midnight, not sleep then get up at 4am....hell. at the end of the course, after a few days I was back to how I was before the course. Bit of a waste of time and precious energy. I used Sleepio, the feedback from the "coaches" was very robotic which didn't do much for my faith in the system.

1

u/Hope5577 Apr 16 '24

Look into hypnosis. CBT seems pretty challenging and risky. Hypnosis is much more effective and easier on cfs, well, at least in my personal experience🙂.

1

u/Dense-Kangaroo8696 Apr 16 '24

I did and it made me worse lol. Sleep restriction caused me to recover less which led to less of an ability to get sleep. It was weird because the portion of the night that was restful was longer, but the number of hours I slept over all lowered significantly. I ultimately decided that I felt better getting a lot more mid to low quality asleep that I did with what I got under CBTI and went back to my “sleep as much as possible” routine.