March 20203 NOTE: I have recently posted an updated, thorough article, Correcting Sleep Dysfunction in ME/CFS and Long-COVID, that is written for patients but also perfect for sharing with doctors (it includes scientific references at the bottom). It is more complete, though this post here is still additive; it explains our own experiences in finding just the right treatments for my son and I.
I'm doing much better this week - my two-week long crash seems to have finally ended - but last night I had the worst night's sleep I've had in years! No idea what went wrong - I took all the same bedtime meds I take every night - but I was up about 8 times during the night to go to the bathroom. As my doctor once told me, "You're not waking from a sound sleep because you have to go to the bathroom; you're going to the bathroom because you're not sleeping soundly." So, this seemed like a good time to write about the sleep dysfunction that plagues just about everyone with CFS.
The most common question I get asked is how to treat sleep problems. I've explained CFS's sleep dysfunction and linked to articles on treatment in dozens of e-mails, so I figured the topic deserves a blog post. I'm certainly no expert, but I've learned a lot in my 7 years with CFS and my current treatment plan provides me with natural-feeling, sound, refreshing sleep about 90% of the time (last night was an unusual occurrence).
After a year of searching for answers when I first became sick, I finally stumbled onto the doctor I see now. She's a local family doctor, but she has several other CFS patients and recognized it in me almost immediately when I showed her my year's worth of charts and graphs! Once I learned a bit about CFS and saw that it fit my symptoms perfectly and was, in fact, a real diagnosis, I went back to see her. She said, "Now that you feel comfortable accepting CFS as your diagnosis, are you ready to try some treatments?" Was I ever! She told me, "The first step is to treat the sleep dysfunction. Correcting that and getting you good quality sleep will improve all of your other symptoms."
She was absolutely right! Getting good quality sleep reduces pain, improves immune function, often vastly improves cognitive functioning, and, of course, reduces fatigue. The key is to correct the root cause of the sleep problems, not just mask them with sedatives.
There are many kinds of sleep dysfunction in CFS patients, but the most common is light sleep, where you never hit the deep stages of sleep (Stage 3 & 4) required for restorative sleep. The reason behind this is simple. The endocrine system (which produces hormones) is dysfunctional in people with CFS. In a healthy person, the body naturally produces more dopamine and serotonin in the evening, as it gets darker. These two hormones are released in the brain, causing the normal progression of all of the stages of sleep, including deep sleep. Without enough of these hormones, the brain stays in the light stages of sleep.
So, the key is to increase levels of serotonin and dopamine before bedtime. There are many medications that do this. I know that some people don't like taking "sleeping pills," but these are not sedatives; they are medications that merely help to mimic what a healthy body would naturally do. The medications that do this are formally classified as anti-depressants, but don't let that deter you. When used in small doses, they lose their anti-depressant properties and help to treat sleep dysfunction by increasing serotonin and dopamine.
There are two articles that explain all of this better than I can. One is from a 2001 issue of the CFIDS Chronicle and the other was written by Dr. Bell.
The best approach is to share these two articles with your doctor and use them as a guideline for deciding which med(s) to try. The chart attached to the CFIDS Chronicle article is particularly helpful. It usually takes some trial and error, and everyone is different. Start with very low doses and slowly work up. If any medication has side effects that you don't like, try another.
In my case, my doctor first tried amitriptyline. I started at the lowest dose (10 mg), but it left me feeling groggy in the morning, so we moved on. Next I tried 50 mg of trazodone (Desyrel), and that worked very well for me for awhile. I was thrilled to be sleeping again, soundly through the night, and waking up feeling rested and refreshed. My doctor was right - it made a big difference.
After awhile, the trazodone didn't seem to be working as well, so we increased my dose to 100 mg. That worked well for about a year. When that dose started to become less effective, I consulted with Dr. Bell who recommended adding a different medication rather than increasing the dose further. He and my doctor advised trying nortriptyline (Pamelor) which is available as a liquid so that the dose can be adjusted by minute amounts. I have stayed on this combination of trazodone and nortriptyline for several years now, and it still works well (last night not withstanding!). I can adjust the nortriptyline dose if I need to, and I have found that small changes make a big difference. Most nights, my sleep feels normal, I only wake up once during the night to use the bathroom (if at all), and I wake feeling like I got a good night's sleep.
My older son, Jamie, also takes nortriptyline (on its own) for CFS sleep dysfunction. We have each found the right medication and dose for our individual needs.
In an odd coincidence, Jamie stayed after school today to work on his science fair project. Guess what topic his group chose? The science of sleep and the effects of sleep deprivation on cognitive function! Isn't that the perfect topic for a teen with CFS? He has assured me that he will not be experimenting on himself! A couple of his night-owl classmates have agreed to be the guinea pigs.
I firmly believe that correcting my sleep dysfunction is a large part of the reason that I function as well as I do. It really makes a difference.
I hope that answers some questions and provides some guidance. If you're still struggling with sleep problems, I strongly urge you to look into treatment. My doctor was right - good sleep really does make all other symptoms better.
Pleasant dreams!
UPDATE 10/22/09:
Jamie's sleep was getting worse recently, and his doctor didn't want to go any higher on his dose of nortriptyline, so we added trazodone for him, too. The combination is working well for him, as it does for me, and he's now sleeping through the night again.
UPDATE 7/24/13:
Both of us are still sleeping well on the combination of trazodone and nortriptyline. For me, this is now over 10 years on these meds, at the same doses for the past 5 years or so, and still working very effectively. I do have a prescription for Ambien, but I only need to take it when I travel (and then only a half of a 5 mg pill).
The most common question I get asked is how to treat sleep problems. I've explained CFS's sleep dysfunction and linked to articles on treatment in dozens of e-mails, so I figured the topic deserves a blog post. I'm certainly no expert, but I've learned a lot in my 7 years with CFS and my current treatment plan provides me with natural-feeling, sound, refreshing sleep about 90% of the time (last night was an unusual occurrence).
After a year of searching for answers when I first became sick, I finally stumbled onto the doctor I see now. She's a local family doctor, but she has several other CFS patients and recognized it in me almost immediately when I showed her my year's worth of charts and graphs! Once I learned a bit about CFS and saw that it fit my symptoms perfectly and was, in fact, a real diagnosis, I went back to see her. She said, "Now that you feel comfortable accepting CFS as your diagnosis, are you ready to try some treatments?" Was I ever! She told me, "The first step is to treat the sleep dysfunction. Correcting that and getting you good quality sleep will improve all of your other symptoms."
She was absolutely right! Getting good quality sleep reduces pain, improves immune function, often vastly improves cognitive functioning, and, of course, reduces fatigue. The key is to correct the root cause of the sleep problems, not just mask them with sedatives.
There are many kinds of sleep dysfunction in CFS patients, but the most common is light sleep, where you never hit the deep stages of sleep (Stage 3 & 4) required for restorative sleep. The reason behind this is simple. The endocrine system (which produces hormones) is dysfunctional in people with CFS. In a healthy person, the body naturally produces more dopamine and serotonin in the evening, as it gets darker. These two hormones are released in the brain, causing the normal progression of all of the stages of sleep, including deep sleep. Without enough of these hormones, the brain stays in the light stages of sleep.
So, the key is to increase levels of serotonin and dopamine before bedtime. There are many medications that do this. I know that some people don't like taking "sleeping pills," but these are not sedatives; they are medications that merely help to mimic what a healthy body would naturally do. The medications that do this are formally classified as anti-depressants, but don't let that deter you. When used in small doses, they lose their anti-depressant properties and help to treat sleep dysfunction by increasing serotonin and dopamine.
There are two articles that explain all of this better than I can. One is from a 2001 issue of the CFIDS Chronicle and the other was written by Dr. Bell.
The best approach is to share these two articles with your doctor and use them as a guideline for deciding which med(s) to try. The chart attached to the CFIDS Chronicle article is particularly helpful. It usually takes some trial and error, and everyone is different. Start with very low doses and slowly work up. If any medication has side effects that you don't like, try another.
In my case, my doctor first tried amitriptyline. I started at the lowest dose (10 mg), but it left me feeling groggy in the morning, so we moved on. Next I tried 50 mg of trazodone (Desyrel), and that worked very well for me for awhile. I was thrilled to be sleeping again, soundly through the night, and waking up feeling rested and refreshed. My doctor was right - it made a big difference.
After awhile, the trazodone didn't seem to be working as well, so we increased my dose to 100 mg. That worked well for about a year. When that dose started to become less effective, I consulted with Dr. Bell who recommended adding a different medication rather than increasing the dose further. He and my doctor advised trying nortriptyline (Pamelor) which is available as a liquid so that the dose can be adjusted by minute amounts. I have stayed on this combination of trazodone and nortriptyline for several years now, and it still works well (last night not withstanding!). I can adjust the nortriptyline dose if I need to, and I have found that small changes make a big difference. Most nights, my sleep feels normal, I only wake up once during the night to use the bathroom (if at all), and I wake feeling like I got a good night's sleep.
My older son, Jamie, also takes nortriptyline (on its own) for CFS sleep dysfunction. We have each found the right medication and dose for our individual needs.
In an odd coincidence, Jamie stayed after school today to work on his science fair project. Guess what topic his group chose? The science of sleep and the effects of sleep deprivation on cognitive function! Isn't that the perfect topic for a teen with CFS? He has assured me that he will not be experimenting on himself! A couple of his night-owl classmates have agreed to be the guinea pigs.
I firmly believe that correcting my sleep dysfunction is a large part of the reason that I function as well as I do. It really makes a difference.
I hope that answers some questions and provides some guidance. If you're still struggling with sleep problems, I strongly urge you to look into treatment. My doctor was right - good sleep really does make all other symptoms better.
Pleasant dreams!
UPDATE 10/22/09:
Jamie's sleep was getting worse recently, and his doctor didn't want to go any higher on his dose of nortriptyline, so we added trazodone for him, too. The combination is working well for him, as it does for me, and he's now sleeping through the night again.
UPDATE 7/24/13:
Both of us are still sleeping well on the combination of trazodone and nortriptyline. For me, this is now over 10 years on these meds, at the same doses for the past 5 years or so, and still working very effectively. I do have a prescription for Ambien, but I only need to take it when I travel (and then only a half of a 5 mg pill).
UPDATE 7/1/22:
All of the above is still true! The same treatments at the same doses still work very well for both my son and I.
UPDATE 9/18/19:
I wrote an article on Treating Sleep Problems in Chronic Fatigue Syndrome for ProHealth that covers everything in this blog post, plus more! Check it out for the latest research and advice on correcting sleep dysfunction in ME/CFS.
I wrote an article on Treating Sleep Problems in Chronic Fatigue Syndrome for ProHealth that covers everything in this blog post, plus more! Check it out for the latest research and advice on correcting sleep dysfunction in ME/CFS.
47 comments:
What a great post! it's so true. Jessie is on Pamelor. We've adjusted her from 25 mg a.m. & 25 mg p.m. to 50 m.g. pm. How much are you and Jamie taking at night?
I'm so glad to hear you're feeling better.
Take care,
Lori
Lori -
Jamie now takes 40 mg of nortriptyline (Pamelor) before bed, but his doctor is adamant that he not go any higher than that. She looked up the limit for teens somewhere (?). So, if he needs more, she'll look into other options.
I now take 100 mg trazodone and about 46 mg of nortriptyline (I adjust the nort. depending on how I'm doing).
We both still take the liquid so we can adjust it, though we hate the taste! Actually, with Jamie at a nice, round dose, we could switch to the 10 mg pills.
Sue
I take 100-200 trazadone every night. This stuff is magic. I know my dose is very high. My MD is king of relaxed about medication. This works well at times and not so well at others. It's nice to sleep after all those years of not sleeping well.
I thought the LDN was probably a placebo, but if I forget to put it in my pill pack I become ill. Not a placebo.
Is anyone else really worried about the H1N1 (swine flu) this year? Im a bit freaked out. If I get this stuff, and with my kids I certainly could, how will my body react?
LDN has really helped me a lot, too. That and fixing my sleep have had the greatest impact on my well-being.
There's a lot of conflicting info out about swine flu, but most of us with CFS already have immune systems that over-react to viruses, so we're probably less likely to catch H1N1 than other people...however, just being exposed to it could further rev up our up-regulated immune systems, causing a crash. Just have to wait and see, I guess.
I highly recommend taking Olive Leaf Extract, an herbal supplement that acts as an anti-viral, antibiotic, and anti-fungal. Everyone in our family takes it (even my husband who doesn't have CFS) and it has really helped to cut down on infections.
Sue
This is such a good post, Sue. Really informative. I learned alot from it, that's for sure.
Hopey you are back to sleeping again....
Sue, What a great post and a timely one for me. I see my CFS doc. soon and the return of sleep dysfunction is on the top of the list of what I want to talk about.
I have been an a med. for years that has kept my sleep regular. It is non-narcotic. I also take it for chronic migraines and neurological dysfunction. Recently, my sleep probs are breaking through. I've had more sleepless nights, so need to do a little something different.
Wondering if other CFSers experience days of hypersomnia as I do. On these days, I can't stay awake. (I have found nothing that will keep me awake when I'm in a hypersomnia state...caffeine doesn't do a thing and usually I am very sensitive to it.) When this happens, I sleep straight then through the night. The hypersomnia usually starts in the afternoon. Perhaps hypersomnia might be a kick in of too much dopamine and seratonin...a dysregulation of these hormones (most often too little, once in awhile too much).
Thanks Sue for addressing the sleep disorder that is such a part of CFS. I'm going to print the articles out so I can read them before my appt.
Your family doc. sounds like a gem! Your son sounds like a scientist in the making.
Kerry -
Like a lot of people with CFS, I experienced hypersomnia a lot in the first year or two, then switched to not being able to sleep soundly. I've read that's a fairly common pattern. Your hypothesis sounds like a good one - that your body can't regulate dopamine and serotonin correctly, so sometimes you have too much and sometimes too little.
Good luck with your doctor's appointment - I hope the sleep info is helpful!
Sue
Sue
Thanks for your comment on my blog post about how some of your family sees how you are...that you are not invisible to them...I had left that out of my post and went back and added how much support I get from family too...I struggled writing this post..brain fog is high...so thanks! wouldn't want to imply to my family that I don't feel I have their support...not true!
Fantastic post Sue!…Sleep is soo important, and we're all looking for that perfect "cocktail"…I'm a Trazodone fan myself, along with LDN and Klonopin (which I think does wonders in general…Dr. Cheney is right!)…I feel like a complete drug fiend at bedtime, but on the other hand I'll do WHATEVER it takes to sleep. I'm glad you're coming out of your crash…me too, thank goodness!…I think for me the B-12 shots, SAM-e, Magnesium, Klonopin, NO STRESS, and tons of sleep saved me from falling off the cliff! Here's to a crashless Fall, Winter & Spring. Thank you so very much for your posts, we all get a tremendous feeling of support and camaraderie from your very articulate and well informed writings! Not to mention your honesty and warmth.
Best, Martine
Thanks for the kind words, Martine! And for the reminder about magnesium, which I forgot to mention.
Several supplements can help with sleep - magnesium citrate (the most absorbable form of Mg), Valerian (especially when combined with lemon balm), and melatonin (a little trickier since some people with CFS have too much and some have too little). Any of these is helpful, but in my experience they provide only mild help and aren't enough on their own to actually correct the sleep dysfunction. I take Mg along with my meds before bed; Jamie takes 1 mg of melatonin plus 2 valerian (he has a lot of trouble falling asleep) along with his nortrityline. I also take 2 valerian before my afternoon nap - it's very mild, like drinking a cup of chamomile tea.
Sue
Great post! Yes, sleep is such an issue. I can't take antidepressants at all in any dose. My first cfids doctor tried me on five of them. All low dose, including the one mg liquid pamelar. I threw up for the two days I was on one mg of one, had a seizer at 2 1/2 mgs of another, couldn't sleep at all on the next three, etc. My doctor had me sleeping on some xanax and a small sleeping pill but that really was tricky, too. When the doc I started seeing 8 years into the illness gave me klonipin (which you would think worked like Xanax but doesn't), not only did it help my sleep but it helped immensely with other neurological symptoms, such as involuntary muscle twitching, inability to tolerate sound, light, just about everything. My life was returned to me. I'd already tried melatonin and Valarian root, too. Nada. (Yes, I'm a pain in the rear when it comes to doctors). I still have to get quiet in the evening...no tv, no phone calls after 8, hopefully no stress. I just zone out and fiddle with a poem or something relaxing. Doing that, my sleep most of the time is adequate, though I've never waked refreshed since the very beginning.
Wow, you've really had a tough time with the sleep issues, Pris! I know that Dr. Bell uses Klonipin with some patients. I've heard it works well for some, especially when neurological symptoms are present. Glad to hear you've found a regimen that works for you, even if it's not perfect.
Sue
Great post, Sue. I just wanted to mention that for those of you for whom Trazodone doesn't work (I couldn't sleep in the early morning when I took it), Remeron (generic: Mirtazapine) is a similar class of medication and it works really well for me. (You're not supposed to take more than 15 mg. because then it turns into a stimulant). It can exacerbate Restless Leg Syndome for some people who have it. It did for me but I just increased the Mirapex I already took for RLS by a bit. It's worth it so that I can get a good night's sleep. I also take a small dose of Xanax at bedtime. It helps to calm the heart-pounding wired fatigue so that I can fall asleep better. So that's my bedtime "cocktail" (carefully worked out by my doctor and me): xanax, remeron, and mirapex.
Thanks for this post. It was interesting and informative!
Wow! You have shared the best information concerning management of sleep disturbance I have found. Thank you, and blessings to you for all you do for others!
I guess there is no real cure for a snoring hubby...LOL!
I appreciate the comments on H1N1, which appears to be no more dangerous than regular flu; I am not taking the vaccine. I am currently on IVIG (IV Gamma Globulin).
Blessings;
Grace
(CFIDS since 1969---40yrs; Stage 4A NH Follicular Center Cell Lymphoma in remission since 1998-9)
Thanks so much for your kind comments, Grace! I'm glad you found the information helpful. Good sleep makes such a difference.
Wow, 40 years of living with CFS...and so interesting that you had lymphoma, in light of the new XMRV research.
Thanks for taking the time to comment.
Sue
Thank you so much for posting this Sue. Its tremendously informative!
Here's an interesting observation I made (though until reading your blog post never understood why it happens). I had a NeuroScience test done recently on my neurotransmitter levels and my serotonin is quite low. Whenever I eat a high carb meal in the evening (such as pizza) I usually have a better sleep that night. I believe this is b/c the refined carbs do a good job of releasing serotonin (that's what I've read). So it all fits together!
i have recently started taking a night-time anti-histamine (Atarax) for itching and it is sedating and has really helped me with sleep. I did not realise i was not sleeping well, i do get up to the toilet many times as i have long had problems with my bladder, but i certainly was getting many hours of sleep and a daytime nap. Before i started taking these tablets the itching was affecting my sleep, espceially if i woke up in the early hours, but as i said i felt i was catching up later... BUT since sleeping better my baseline of activity has gone up quite a lot and i have left the house more often, i am in MUCH less pain as it had got worse and worse recently, and i just feel more human in general ;)
If the sleep aid effect wears off i will certainly be looking for something else as i have probably not been getting good sleep for years... unbelieveable! Interesting to hear what others are taking - i will be taking notes - thanks Sue and all!
Great blog, if only I had read years ago!
I've had cfs for ten years, along with major sleep disruption that prevented me from getting a decent nights sleep for years.
After much experimentation I've found 300mg of Neurontin, 100mg of 5htp and 0.5 xanax
to be the best possible sleep combo, and keeps cfs anxiety at bay the whole day after.
I hope that my combo can help others as it has been a life saver for me...
Thanks,
John
Hi, John -
Thanks for stopping by and taking the time to comment. Well, I'm glad you finally found this blog! Welcome!
There is a wonderfully supportive online community here and at other CFS blogs (I have some of them listed on the left side). I hope you'll look around and stop by again.
Glad to hear you found a combination of treatments that helps your sleep.
Sue
Thanks Sue.
A question. Now your sleep is better quality with drug intervention to you sleep for what is considered a normal amount of time (say 7-8 hours)?
I tend to need to sleep for between 9-12 hours since I've had ME even with good quality sleep with LDN. Would adjusting my tricyclics possibily help adjust this need for extra long sleeps I wonder?
Rachel -
I'm not sure how it would affect your need to sleep a long time. I need about 9 hours to feel good, plus I take a 60-90 minute nap every day. But I have always needed a lot of sleep, even before CFS, I needed at least 8 hours.
The difference for me with the meds is that my sleep is refreshing now and I'm getting the deep-stage sleep I was missing before, so I wake up (most mornings) feeling rested and ready to go...big difference from sleeping 10 hours and STILL feeling exhausted!
Sue
Thanks for that :)
Great stuff, thanks everyone. I too have been dealing with these issues related to CFS for about 4 years now. I am 35 years old and CFS is the strangest thing for a somewhat young man to deal with. I have fought it every step of the way and even tried working my way through it by exercising, pushing the limits ect.. and you can all imagine how well that worked. So 4 years later I am at a place where I have accepted CFS for what it is but I am trying my best to return to work on a semi full time basis after being off for about a year and a half and I am 3 weeks into this plan.
Sleep has been a HUGE issue for me and I feel as though I have tried everything. Zoplicone, then Amytrypllin(where is the spell check lol), trazodone(I think this is what they were, like huge multi vitamins but white), valerian ect.. I am now taking .5 to 1 mg Clonazapam with 150 mg of Lyrica which I am not even sure if it is helping. with a half pill of Zoplicone to wash it all down :-(.
After reading all of this I may ditch it all and try your combo Sue so thanks for that.
I have also started to take, first Wellbutrin for about a month for "energy" but it did not go well. I then after reading a paper onlin from a Dr. Lepp I believe started experimenting with Ritalin of all things, first the SR mixed with IR which was ok I guess but then I looked into something with a better release mechanism and turned to Biphentin 20mg 2x a day. This mix allows me to get through a work day which before seemed almost an impossible task. The down side is the inside of my body feels like it has gone 5 rounds with a UFC fighter come evening and mornings. I then get up and down 2 cups of coffee, take one 20 mg at 10 am and another at 2:40pm....Kinda crazy hey? Yet I seem to be able to function well when I am at work from 9-4pm, I manage a small Insurance Agency so no heavy lifting involved just paper pushing and customer service :-). I really need this to work but do not want to crash and burn....
Just wondering if this is going to be a sustainable solution over the long haul as the alternative is me and my family living on the street(due to no income). This CFS is no joke but I refuse to give up and I am sick of sitting at home trying to wait things out.
I will check out your links and thanks for your blog, it allowed me to release some much needed steam lol.
Jamie K from Mission, BC Canada
Hi, Jamie, and welcome to my blog! My son's name is Jamie, too :)
Thanks for sharing your story - yes, as you expected, much of it is familiar - probably to most people with CFS.
You mentioned trying trazodone before, but your description of the pills leads me to guess that perhaps you were on much too high a dose. My 100 mg trazodone pills aren't big at all. In using TCAs to treat sleep dysfunction, you want to stick with low doses taken at bedtime - much lower than what is typically prescribed when using these drugs to treat depression.
Wow, your current regimen does sound kinda crazy, as you said! But, hey, at least you have found something that is working for now. You ask whether this is a sustainable solution long-term. I'm no expert but I would guess no. Caffeine is definitely not recommended for people with CFS. Ritalin and other stimulants ARE fairly common as CFS treatments, but I have no idea whether your doses, timing, type, etc, will work over the long-term or not.
My suggestion would be to try treating some of the underlying issues in CFS while continuing your current routine for now. I highly recommend treating sleep dysfunction, orthostatic intolerance, and immune dysfunction as first steps. here are some past blog posts to help you get started:
http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.html
http://livewithcfs.blogspot.com/2011/03/treating-mecfs-with-beta-blockers.html
http://livewithcfs.blogspot.com/2012/01/how-i-improved-in-2011.html
http://livewithcfs.blogspot.com/2012/01/immune-system-abnormalities-in-mecfs.html
http://livewithcfs.blogspot.com/2010/02/update-on-my-low-dose-naltrexone.html
http://livewithcfs.blogspot.com/2012/01/treating-mecfs-with-immunovir.html
That should keep you busy for a while! i suggest reading those in the order listed - and trying the treatments in that order, too, starting with treating sleep dysfunction.
These types of treatments (for sleep dysfunction, OI, and immune dysfunction) can often result in some pretty significant improvement.
I hope this is helpful to you - let me know how it goes.
Sue
What a great post! I'm thinking of printing it out and brining it to my MD, who so far has refused any sleep meds and only gave me tramadol for pain after LOTS of pressure. His suggestions for better sleep: practice good sleep hygiene! He recommends warm milk! I've had this disease for going on 25 years, but he doesn't think I know anything about it. You sound like you hit the jackpot with yours. I don't have many options for switching docs because of insurance issues, so my only options are to educate him. Thanks for all the good info.
Thanks, ATC! Glad to hear it helped you. Unfortunately, the two great articles I linked to from this post have now been removed - both sites are no longer active. I am trying to find a way to get them back online. I hope my post alone will help you explain to your doctor what is behind CFS sleep dysfunction. I get so angry when I hear doctors talk about sleep hygiene when there are real, physiological problems behind CFS sleep dysfunction. Like we haven't tried a cool, dark room!!!
Anyway, good luck, and let me know if you need one of those article I mention here - I will try to dig through my own stuff to see if I printed either of them before they disappeared.
Sue
Sue - you are amazing!
My sleep studies show I'm waking every two minutes all night, and I wake enough to be aware of it nearly every hour all night, every night. I've tried tons of different sleeping meds of various types at various strengths and nothing does more than very slightly helping, if that. I've tried all the sleep hygiene things like getting up at the same time and avoiding computer and TV before bed. Nothing helps. I have a sleep specialist who has given up completely. He has no more ideas. Trazadone actually does the opposite for me and acts as a stimulant, keeping me wide awake for 8 hours.
What you are describing is classic ME/CFS sleep dysfunction. And, no sleep studies don't do us much good and sleep specialists don't know how to treat it! That's why I wrote this blog post.
The medications discussed here and in the link by Dr. Bell are not "sleeping meds." They are very small doses of certain meds typically used as antidepressants that help your body to produce more serotonin and dopamine at night (as a healthy body would normally) - they aren't sedatives but actually help to correct the endocrine imbalance that is causing the sleep dysfunction, providing you with normal, natural sleep and mimicking what a healthy body would do on its own. If the trazodone didn't work for you (and make sure you took a TINY dose - smallest available then cut in half - at bedtime only), then try one of the other alternatives - it usually takes a bit of trial and error and some patience, but there are lots of options to try - check out Dr. Bell's article at the link.
Hi sue,great article! have you happened to find the chart of sleep meds or anything similar?
Not yet bit still have piles of papers to go through. But I did find a copy of Dr. Bell's article online and updated that link here - he lists some specifics.
Hey, I'm a doc that used to have CFS (still feel residual symptoms sometimes with extended stress + unfamiliar exercise...). Though I'd chime in about trazodone, as I've taken it for many years. If you're having trouble getting it to work consistently, try taking it with food. This drug is especially susceptible to absorption variations....if possible, try to eat your dinner with it! If it works for you on an empty stomach, carry on :)
Thanks for the tip! When used to treat sleep dysfunction, it is taken at bedtime only, so yes, I do take it on an empty stomach (and my son, too) - we've never had a problem with it, but maybe this will help others & I will definitely keep it in mind for those struggling. Thanks!
I've had CFS/ME for over 30 years, and took an OTC sleep aid containing doxylamine succinate for about 7 years, but then I read about how it can lead to Alzheimers so I stopped and take only melatonin. Watch those drugs! They are all ultimately destructive. I take only nutritional supplements.
What dosage of nortriptyline do you take? 25mg of amitriptyline for sleep works like magic for me, but I've switched to nortriptyline with the hope of fewer side effects. My dr. prescribed 10mg, but it hasn't helped!
Thanks! :)
Amitriptyline and nortriptyline are in the same class of meds but are different. Even just 10 mg of amitripyline was too much for me and made my feel groggy! I doubt that 10 mg of nortriptyline would do anything at all! It's more typical to maybe start at 25 mg, with the expectation of moving up in dose as needed. We started with the liquid so went up in very small increments but after a year or twop, we both settled at 50 mg nortriptyline and 100 mg trazodone, where we've stayed. When using these meds for correcting sleep dysfunction, most docs recommend low doses, taken only at bedtime, and if you get too high and need more, adding in something different, like we did. Good luck!
Yes, I would never recommend OTC sleep aids. Most are just antihistamines, and they are not intended for long-term use. The meds recommended in this post actually help to normalize sleep and correct sleep dysfunction, rather than just making you drowsy or knocking you out.
Oh, and this is an article I recently wrote for the ProHealth website that covers the options for correcting sleep dysfunction in more detail and includes scientific references, so it is great for sharing with your doctor:
https://www.prohealth.com/me-cfs/library/treating-sleep-problems-chronic-fatigue-syndrome-91790
Hi! I was able to sleep fairly well with 50 mg of trazadone at bedtime, but after having my second child, it no longer worked as well. I have now been on mirtazapine for 18 years, and it is not working as well and my sleep has become really bad. I take a long time to fall asleep and stay asleep and I am so sensitive to noise. I take 30 mg of mirtazapine and 5 pm of zopiclone and I sometimes have to also take a very small dose of clonazepam! The sleep specialist only recommended trying to increase the mirtazapine dose, but that made things worse! Any suggestions?
Sorry you've struggled so much! Getting good sleep makes a huge difference.
So, back when the trazodone "stopped" working, you probably should have done whatr I describe in this post and just gone up a bit on the dose to 100 mg. 50 mg is a tiny dose, and I also got used to it and moved up. As you can read in this post, my son and I both ended up on a combination of trazodone and nortriptyline, and once we got to our effective doses (which can take some time and trail & error), we've stayed at those doses - and they've remained effective - for well over a decade now.
From what I just read, your zopiclone is strongly addictive and only recommended for short-term use, so you might have trouble weaning off it. Clonazepam is a controlled substance and also very strong.
You already know trazodone works for you, since it worked before, so I would start by going back to that, increasing the dose to 100 mg if/when needed. You can go up to 150 mg but our doctor recommended adding in the nortriptyline at that point instead. This way, we are on very low doses of both, and the combination is very effective - and both are much milder drugs with fewer side effects than what you are on.
Good luck! Let me know how it goes.
Sue
(Please note I am not a doctor and only sharing what has worked for us. Hope you find it helpful).
Thanks for all the information. I did gradually go up to 100mg of Trazodone but it made me very groggy the next day. The only reason I take clonazepam occasionally is due to the extreme anxiety I have developed around my sleep. I have extreme sensitivity to noise. My sleep specialist does not recommend adding a small dose of trazodone with mirtazapine and he does not want me to come off the mirtazapine. What sometimes helps is taking a lower dose of the mirtazapine - 15 mg instead of 30 mg - I find the lower dose helps me fall asleep faster. And a quick question - what do you do if you wake in the night and can’t get back to sleep? Thanks!!
It’s interesting because when I first got sick, and for a year or two after having a stoma as well, I was barely sleeping. Countless episodes of insomnia, and on days where I did sleep it was an hour here and there. In 2019, I started getting dreams and nightmares every single night. I still am. At the start of the pandemic, or just before, my sleep changed the other way entirely; can’t wake up in the mornings even if the house were on fire (one of the most frustrating things I’ve ever known), constant dreams and nightmares even if I’ve only been asleep for 10 minutes, auditory hallucinations before falling asleep, and sleep paralysis on waking. It’s so, so strange and infuriating. A respiratory sleep doc suspects narcolepsy. I don’t know if it’s related to the fatigue, iron deficiency (which the docs won’t help with), or the autoimmune disease affecting levels of things in my brain.
I tried Amitriptylene and also found that horrendous grogginess. I’m glad the higher dose of Trazodone helped you a bit but it obviously took a bit of trial and error to figure what works best and sadly some things don’t work forever (or come without nasty side-effects). It’s great that both you and Jamie now have a decent med regime to help your sleep needs. 🙏
Caz xx
Anon -
So, then it would probably make sense (if you ever want to switch) to try 50 mg of trazodone and a small dose of nortriptlyine - we find the combination works very well. And nortriptyline also comes as a liquid, so you can start with TINY amounts and gradually work up until you stabilize at an effective dose for you.
As for waking during the night, I get up once or twice to pee (OI means we can't hold onto fluids!), but I almost always fall right back to sleep - that's how well the trazodone/nortriptyline combo works. On the VERY rare occasions that I can't fall back to sleep (maybe because there is something on my mind), I take two Valerian (which I take daily at naptime) and might have a small snack with carbs to increase serotonin. Usually works.
Sue
Caz -
So sorry to hear of your struggles - wow, that sounds awful!! If your doctor suspects narcolepsy, then you need a sleep study to find out for sure - that is a treatable primary sleep disorder. What you are describing does NOT sound typical for ME/CFS, so it seems like a definite possibility that you have something else going on as well.
Yes, it does take some trial and error to find what works for you, but it is well worth it! And our doses have stayed the same now for over 15 years and are still effective.
Definitely ask for a sleep study to find out what's going on. Good luck and let me know how it goes!
Sue
Hi Martina… how often do you take the B-12 shots?? TY.
Hi -
I'm not sure Martine will see your question since she left her comment here many years ago. But I can tell you about B12!
B12 helps with immune function, energy, detox, and much more. There are four different types of B12 and many different ways to take it. My son and I do B12 subcutaneous (tiny needles and not painful) injections every other day, alternating Hydroxy- and methyl- types.
Here is everything you need to know about what B12 does, how it helps, and the different types and forms:
http://livewithcfs.blogspot.com/2014/04/vitamin-b12-and-mecfs.html
Hope that helps! Let me know if you have any questions :)
Sue
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