Sleeping for the first time in my life - Amitriptyline

[snowathlete]

I should have posted this ages ago, but better late than never 'ey!

I have always had trouble sleeping, both getting to sleep and staying asleep, and i would wake up feeling terrible. Things got even worse when i got ME/CFS, and i ended up going for a sleep study. I had to wait a long time for it, and in the meantime i started taking Melatonin, after a little while getting used to it it helped quite abit in getting me to sleep in the first place. No side effects. Its cheap and a natural product in your body anyway.

I still had problems staying asleep and getting worthwhile sleep though.
So, i evenutally went for the sleep study and long story short, it showed some problems but nothing that can be specifed as a known sleep disorder. So, they suggested three drugs that might help. I started the first, Amitriptyline, which they said works especially well with people who have ME/CFS. I was warned to expect two to three terrible weeks when i first started the tablets, but was assured that the side effects would wear off, and then i would get the benefit.

I took them at their word, and indeed, the first two weeks were pretty terrible. It just made me feel ghastly, as other sleeping tablets i had tried in the past had too. BUT, after two weeks the side effects just vanished - i dont have any now - the only thing these tablets do for me is get me to sleep. I still wake up feeling dreadful but its ME/CFS dreadful, without the sleep deprivation on top.

I am normally reticent to take any drugs, i dont even take paracetamol when i get a headache, unless it gets really bad, but I cannot reccomend this drug highly enough if you have ME/CFS and sleep issues.

Best

 

[soxfan]

I tried that a long time ago but wasn't told it could make you feel really bad for a couple weeks. I gave up after a few nights because I had such terrible hangover the next day even on a very low dose. Maybe that is something I could try again and give it more than a few days...Thanks for the information.

 

[heapsreal]

Everyone seems to react differently to many of these meds for sleep. I never got much at all from amitriptyline, no sleep improvement , hangover some mood improvement. When i first had cfs my doc put me on doxepine 50mg and within 2 hours knocked me out for 10hours or so and had a hangover but hangover not unbearable, i think the sleep deprivation for me is worse then the hangover from sleep meds. I found doxepin a good sleep drug, but when used nightly i started to put on alot of weight so i started using it only 2-3 nights a week and used stilnox/zolpidem the other nights, this stopped the weight gain issues. After using it for a few years it just stopped working, but it was a great sleep drug when i was first ill, i wish it still worked on me, once in a while i try it and it might work but its very hit and miss for me. Trial and error is the only way to find something that works which can be frustrating.

cheers!!!

 

[John Mac]

My experience is the same as Snowathlete's.
I take 30mg every night and wouldn't be able to sleep without them. I used to wake up every 30 mins, now with the amitriptline it's only once or twice. However it hasn't cured my ME but maybe it has stopped me from getting worse.

 

[Carola]

Thanks for this post, which comes at just the right time for me. My internist and a neurologist both suggested I try low-dose amitriptyline, but I was hesitant to start. I decided first to see what I could get out of melatonin and gave that a couple of months, without seeing much in terms of results. So I started the amitriptyline two nights ago - at a very low dose of 2.5 mg (attempting to cut a 10 mg. tablet into quarters). I can't say it helped my sleep, but my mood is a little brighter.

My internist recommended a dose of 5 mg. for me, so I'm planning to work up to that over 2 weeks. I'm 65 and also take ketotifen, which is an antihistamine, an H-1 blocker.

I'm wondering if anyone else has had improvement with a 5 mg. dose.

 

[snowathlete]

Starting off on a small dose is essential for getting past the side effects quickly.

Also, i was told this drug is also used as an anti-dep, but at a much higher dose, but for sleep you dont need too much. I started on 10mg, moved straight up to 20, then 40, and found that worked very good for me.

It really has been fantastic, but i never would have persevered if i had not been warned about the intial side effects. It basically knocked me flat for a week, and the second week wasnt much better, but then it just all went. In fact i would say that i have no side effects with this now, whatsoever.

Its done nothing for my ME/CFS by the way - just to clarify that point. But at least i dont have to cope on zero sleep anymore.
Another thing that i noticed was that if i go to bed in the day (which i sometimes do because of the ME/CFS), then i dont need to take any tablets, i just sleep fairly well. This was a big surprise to me, because i was worried that i wouldnt be able to sleep without medication once i started on tablets, but at least to some degree, this has not been the case.

Well, i hope this helps someone.
Best
Joel

 

[Snow Leopard]

I tried this for a while (10-30mg), but the side effects (dangerously low blood pressure), were too much.

 

[barbc56]

I should have posted this ages ago, but better late than never 'ey!

I have always had trouble sleeping, both getting to sleep and staying asleep, and i would wake up feeling terrible. Things got even worse when i got ME/CFS, and i ended up going for a sleep study. I had to wait a long time for it, and in the meantime i started taking Melatonin, after a little while getting used to it it helped quite abit in getting me to sleep in the first place. No side effects. Its cheap and a natural product in your body anyway.

I still had problems staying asleep and getting worthwhile sleep though.
So, i evenutally went for the sleep study and long story short, it showed some problems but nothing that can be specifed as a known sleep disorder. So, they suggested three drugs that might help. I started the first, Amitriptyline, which they said works especially well with people who have ME/CFS. I was warned to expect two to three terrible weeks when i first started the tablets, but was assured that the side effects would wear off, and then i would get the benefit.

I took them at their word, and indeed, the first two weeks were pretty terrible. It just made me feel ghastly, as other sleeping tablets i had tried in the past had too. BUT, after two weeks the side effects just vanished - i dont have any now - the only thing these tablets do for me is get me to sleep. I still wake up feeling dreadful but its ME/CFS dreadful, without the sleep deprivation on top.

I am normally reticent to take any drugs, i dont even take paracetamol when i get a headache, unless it gets really bad, but I cannot reccomend this drug highly enough if you have ME/CFS and sleep issues.

Best

Congratulations. Sleep is so tired into our DD. I have several sleep disorders and improvement with sleep has certainly helped. (See my profile for more info.). I think most of us should all get a sleep study as a standard evaluation. Important that all thisis done by a doctor certified in this. Good news is always good to hear.

 

[snowathlete]

by the way i got my dose wrong, im taking 20mg not 40mg.

 

[baccarat]

I started the first, Amitriptyline, which they said works especially well with people who have ME/CFS. I was warned to expect two to three terrible weeks when i first started the tablets, but was assured that the side effects would wear off, and then i would get the benefit.

Wrong, it'll make CFS worse. It did make my fatigue worse after a few months. I also found that in order to maintain its sleep effects I had to increase dosage over time as my body seemed to get used to it.
On the contrary, you can expect terrible weeks if and when you try to taper it off. I had an awful time for a couple of months when I decided to get rid of it.
Good luck.

 

[heapsreal]

Big pharma are overdue to bring new sleep meds to the market, surely something new on the horizon.

cheers!!!

 

[ukxmrv]

I never recovered from my use of Amitripiline. Even at small doses it left me far worse off and wrecked my stomach. My GP told me that the side effects would wear off after a couple of weeks but for me they just got worse and worse over time. The hangover the next day increased as every week went on and my stomach got more and more painful, bloated and constipated.

My blood pressure dropped again and I was faint / fainting and very weak.

We tried lots of things - decreasing the dose and treatments for my stomach but it just didn't work for me.

With ME and CFS there is an unpredictable reaction to drugs and what works for one may not for another.

Really glad though that some people are helped. Good to know it helps you Snowathlete with your sleep.

 

[Jenny]

Amitriptyline has for me too been the best sleep med. Just 10mg usually helps, but I do go through very bad patches when nothing helps except zopiclone.

Jenny

 

[Valentijn]

After two weeks on Amitriptyline, I'm consistently having more muscle pain not caused by doing anything, and a lower threshold for pain from using muscles. But sleeping pretty good.

 

[Carola]

Serotonin syndrome

My short and initially promising trial of low-dose amitriptyline came to a halt with a trip to the emergency room yesterday. My drug history along with my mental, autonomic and muscle symptoms led straight to a diagnosis of serotonin syndrome. I'd never heard of it - info here:
https://secure.wikimedia.org/wikipedia/en/wiki/Serotonin_syndrome

After some tests and hours of observation they concluded I was in the "mild" stage and sent me home with lorazepam for the tremor and shaking and told me to come back if I developed a fever.

I'm rather surprised that neither my neurologist or internist cautioned me about this possibility.

 

[snowathlete]

My short and initially promising trial of low-dose amitriptyline came to a halt with a trip to the emergency room yesterday. My drug history along with my mental, autonomic and muscle symptoms led straight to a diagnosis of serotonin syndrome. I'd never heard of it - info here:
https://secure.wikimedia.org/wikipedia/en/wiki/Serotonin_syndrome

After some tests and hours of observation they concluded I was in the "mild" stage and sent me home with lorazepam for the tremor and shaking and told me to come back if I developed a fever.

I'm rather surprised that neither my neurologist or internist cautioned me about this possibility.

Grief!
THanks for telling us about this!
How common is it - if rare than that might be why you werent warned (and why i havent been warned).
I take Citalopram as well and ran that past my doctor who said it was fine to take them in combination. Were you taking any other seratonin linked drugs? How many mg of Am. were you taking at the time?

 

[Carola]

Grief!
THanks for telling us about this!
How common is it - if rare than that might be why you werent warned (and why i havent been warned).
I take Citalopram as well and ran that past my doctor who said it was fine to take them in combination. Were you taking any other seratonin linked drugs? How many mg of Am. were you taking at the time?

According to The New England Journal of Medicine, serotonin syndrome is "not rare" but the diagnosis is often missed because it has so many presenting symptoms, some of which may seem inconsequential, and because many clinicians are not aware of the syndrome.

I was not taking any other relevant drug besides amitriptyline and had only a very small dose - I had cut up one 10 mg. tablet and took 2.5 mg. per day over 4 days. Over that time I felt increasingly wound up, then developed tremor, had a panic attack, and on it went from there. I have been off the amitriptyline since Tuesday night and am still having tremor and some tachycardia.

 

[taniaaust1]

I also have been rushed to a city hospital in ambulance due to suspected serotonin syndrome (I had its symptoms and doctor wouldnt believe I hadnt taken anything). In my own case.. it wasnt that as I wasnt on anything which could of caused it and my symptoms were all actually just due to the ME.

I think it's a kind of tricky to know when symptoms like that are being caused via our drugs or by just a shift in ME symptoms.

" Serotonin syndrome encompasses a wide range of clinical findings. Mild symptoms may only consist of increased heart rate, shivering, sweating, dilated pupils, myoclonus (intermittent tremor or twitching), as well as overresponsive reflexes.[1] "

"The symptoms are often described as a clinical triad of abnormalities:[1][5]

Cognitive effects: headache, agitation, hypomania, mental confusion, hallucinations, coma
Autonomic effects: shivering, sweating, hyperthermia, hypertension, tachycardia, nausea, diarrhea.
Somatic effects: myoclonus (muscle twitching), hyperreflexia (manifested by clonus), tremor." http://en.wikipedia.org/wiki/Serotonin_syndrome

(I had hyperreflexia, myoclonus and all those above symptoms just due to ME crash.. had I been on anything at the time which did raise serotonin. I would of then been given a serotinon syndrome diagnoses so instead of that.. they diagnosed my symptoms were due to the ME (which they were).

"There is no laboratory test for serotonin syndrome, therefore diagnosis is by symptom observation and investigation of the patient's history.[1] "

So I think some (thou of cause not all) cases of where serotonin syndrome has been diagnosed may not be that at all.

 

[Valentijn]

I wonder if we might be capable of developing serotonin syndrome even without a significant source of serotonin. The symptoms sound an awful lot like what happens at the beginning of a crash, even before I started on any supplements or meds.

Maybe that stage of crashing is (or is caused by) a transitory neurotransmitter malfunction, with serotonin involvement.

 

[heapsreal]

Im wondering if its noradrenaline causing the problem, not serotonin. Here is a cut and paste of dr Mariano's experience with cfs patients and noradrenaline.

Thank you for bringing up Jay Goldstein, M.D. Unfortunately, he retired before I ever got a chance to talk with him or learn directly from him. But his books are some of my favorites. And notably, Jay Goldstein, M.D. was also a psychiatrist before he left psychiatry to go into primary care, specializing in the assessment and treatment of chronic fatigue syndrome. When I read his books, I thought he was far ahead of his time - too far, actually, for most people to understand him. He is exceedingly bright. However, I believe he also burned out, retiring too early. Which is a loss to all of us. I would have loved to hob-knob and talk shop with him.

There are problems, however, in Jay Goldstein's ideas. First of all, he overly focused on the central nervous system to the exclusion of the endocrine system and immune system, metabolism and nutritional factors, in his search for causes of chronic fatigue syndrome. Perhaps because he was a psychiatrist he did this. But as a result, he missed the huge set of interactions that are possible when one considers the nervous system, endocrine system, and immune system as one system, as I do. He still separated mind from body - which I believe is an arbitrary delineation.

Second, he did not do lab tests. Rather, he gave patients various medications to elicit their reaction to them. Then by knowing the mechanisms of action of the medications and their reactions to the medications, he extrapolated the presumed pathophysiology underlying chronic fatigue syndrome. This style of logic is called the pharmacological bridge. This is the same logic that allowed psychiatrists to come up with the biogenic amine hypothesis for depression. There are flaws in using this type of logic. First of all, how does one know, for example, that the reactions reflect secondary, tertiary, etc. responses to the initial medication? Using the pharmacological bridge can lead one astray if it is one's only tool. If he did lab testing also, he would have had a better chance to determine what is going on.

Thus, I believe he missed a lot and did not see the whole body causes of chronic fatigue syndrome. But he did get in right in that overactivity in certain areas of the brain can lead to chronic fatigue and to fibromyalgia.

In any case, I greatly enjoy his books, the enormous research he did (which gives me large numbers of references, thank you, Jay) and the thought processed he employed.

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The two primary catecholamines in the brain are Dopamine and Norepinephrine. A few neurons employ Epinephrine, but so far, they don't have a large role in brain function.

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Generally, I do not see low brain norepinephrine (noradrenaline) levels in chronic fatigue syndrome. It may be low in patients who want to sleep all the time. But generally, the patients I see have insomnia instead. Insomnia is condition caused by excessive norepinephrine production.

When cortisol is low, norepinephrine generally goes too high since cortisol can no longer control norepinephrine signaling well.

Loss of well being may reflect low dopamine with high norepinephrine levels. Dopamine is the reward signal, the signal that one feels well, whatever the norepinephrine level is - high or low. But the levels of dopamine and norepinephrine may also be a secondary reflection of immune system pro-inflammatory vs. antiinflammatory balance, current endocrine status, current nutritional status, etc.

Loss of motivation my reflect low dopamine and/or low norepinephrine, but also may reflect high pro-inflammatory cytokine signaling, low cortisol signaling, low estrogen signaling, suboptimal nutritional status supporting these signals, etc. etc.

Loss of creativity may reflect the sum of multiple signaling and metabolic problems not just low dopamine or low norepinephrine.