Use of antidepressants for/with ME/CFS?

NelliePledge said:
I have gradual onset so not exactly sure when ME started I was told by a specialist at least 10 years ago. I was diagnosed with CFS 3 years so. Before that I had a minor depression diagnosis and had been on Prozac since 14 years ago. Prozac neither prevented me getting ME or improved it. I was taking it during gradual onset worsening. I stopped taking Prozac 2 years ago it has not made any noticeable difference to ME.

I am not a fan of Ami/nortryptiline as the strong sedative effect even on 10mg was not worth it and the benefit for insomnia reduced after 18months. and for someone already overweight the increased weight gain was very unhelpful pushing me to my highest ever weight. ETA given I am overweight and on two hypertension meds and was already taking Prozac I am not sure i should have been prescribed Amitryptiline at all I think there is some info on ME Association saying people on SSRIs shouldn’t be taking tricyclics. Will try to find a link.
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Combining two serotonergic drugs runs the risk of serotonin syndrome and other possibly fatal side-effects. That includes mixing SSRIs and TCAs.

There was the ex-Medical Advisor for the MEA, who was sacked, and who recommended mixing the two, along with pacing and 'pottering' (he betrays a rather old fashioned attitude to his mainly female patients and how they should behave).
 
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Certain anti-depressants (and several anti-convulsants or other neuro drugs) are already licensed for pain or used off label for pain.

This is nothing new - but there's only a couple. The Canadian Consensus Criteria describes these best - based on expert experiences rather than CFS trials. link

There are multiple types of pain in fibro and in ME, these drugs are particularly good for neuropathic pain (neuralgia).

SSRIs have little evidence for pain or insomnia.

TCAs - amitriptyline, nortriptyline, doxepin - all known for neuropathic pain and insomnia (daytime sleepiness of a risk).

SNRIs - duloxetine (cymbalta) and venlafaxine both licensed for neuropathic pain but not for insomnia

Anti-convulsants - gabapentin (neurotonin) and lyrica (pregabelin) extremely well known for pain.

Fibro approvals -
https://www.ncbi.nlm.nih.gov/books/NBK274463/table/introduction.t1/

Duloxetine for CFS link
 
I don't have time to post the studies (I have posted them all in one post previously), but no RCT has found SSRIs effective for ME patients for any symptom, including depression.

So SSRIs are not evidence based treatments.

There is some evidence for tricyclics to be effective for sleep and depression but side effects are not uncommon. There is some evidence for MAOIs for depression and/or as a mild stimulant.
 
@Snow Leopard I believe it's TCAs that are not recommended for depression since the dose needed for that is likely to cause too many side effects.
I seem to remember the International Consensus Primer suggests SSRIs for depression. Flouextine (prozac) was not effective in clinical trials for pain or ME symptoms but I don't recall if they checked depression.

TCAs have evidence for pain (and they work). While they have evidence for sleep sedation is a possible side effect. Amitriptyline especially if used off label for pain for many conditions. They are old drugs with cheap generic forms so often not used in recent trials so often off-label.

I thought MAOIs weren't recommended?
 
daftasabrush said:
@Snow Leopard I believe it's TCAs that are not recommended for depression since the dose needed for that is likely to cause too many side effects.
I seem to remember the International Consensus Primer suggests SSRIs for depression. Flouextine (prozac) was not effective in clinical trials for pain or ME symptoms but I don't recall if they checked depression.
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SSRIs are recommended in spite of the lack of evidence from randomised control trials for any symptom, including depression as I said. It is merely (falsely) assumed that because it works for people without CFS, then it will work for people with CFS.
 
I was prescribed a low dose of TCAs (I tried both amitriptylene, and, to show cooperation, against my better judgment, also nortriptylene). Neither helped even a little, and they gave me more pain, actually, and made me feel "on edge". Kind of the exact opposite of intended.

Not technically an antidepressant, but as far as drugs used to supposedly modify how nerve signals get sent, I did try gabapentin (classed as an anticonvulsant, but no longer used for that). It did take the edge off the pain, but it made me sleepy and gave me so much more brain fog, that I could not continue.

I haven't tried any others.

I don't have the paper in front of me, but it's reported that some pwME do poorly with SSRIs.
 
WillowJ said:
I was prescribed a low dose of TCAs (I tried both amitriptylene, and, to show cooperation, against my better judgment, also nortriptylene).
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Snap! I did get a reduction in pain levels with the TCAs. But I also got tachycardia. And the tachycardia was intolerable, so I had to give the TCAs up. The amitriptyline gave me a heart rate of around 150 bpm, the nortriptyline gave me a heart rate of 135 bpm. Neither was tolerable for very long, and so I had to give them up. Tachycardia is a known side effect of TCAs, mentioned on the Patient Information Leaflet.

SSRIs - I've been on four different ones over the course of about 10 - 15 years. None of them did anything that made the pills worth taking, and the side effects of three of them were unpleasant. I would never take them again.

I've taken 5-HTP for several years for depression, and it works very well for me in that capacity. I have always taken a very low dose. In the early days it helped improve my sleep as well as my mood, but this is no longer true. So the only benefit I get is the one for my mood. I'm not aware of any adverse effects if I stick to my low dose. Higher doses give me the jitters, which I think is probably from the 5-HTP raising my cortisol (a known side-effect of it).
 
I was prescribed amitriptyline for insomnia during my first bout of M.E. - it was 10 years ago so don't remember the dose. It did help with getting to sleep but left me feeling really dopey when I woke up. My main point is that I had a dreadful withdrawal reaction even though I weaned off it really slowly. I wouldn't take it again.
 
When I first fell ill with CFS I was prescribed Sertraline (SSRI), although I wasn't keen to be. However, the Dr made it clear they wouldn't consider any other engagement on my symptoms unless I did. I was on it for a year and whilst I had a gradual improvement during that time I think it was nothing to do with the SSRI, as evidenced by continuing to improve at a similar rate for the 18mths following stopping.
I was only ever on a low dose (50mg I think) and weaned on, and off, of it. For me there were unpleasant enough side effects to prevent me from ever taking it again. An extreme intolerance to certain foods (peas and onions in particular!) which led to a few close calls! When weaning off it gave me terrible 'spinning head' side effects. It was very weird, if I looked left or right but kept my head still then I would get an electric tingly sensation in my head. If I moved my whole head to look around it was fine. It took a few months to go away.

Having recovered to about 70% last October I'm now in relapse, back to square one more or less at ~30%. I'm finding sleeping difficult and the doctor has just prescribed amitriptyline. I've only just started on it (last week) at 10mg but note the comments above. I will see if there are any benefits after a couple of weeks and if not come back off it.
 
ringding said:
When weaning off it gave me terrible 'spinning head' side effects. It was very weird, if I looked left or right but kept my head still then I would get an electric tingly sensation in my head.
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That effect is known as "brain zaps" to people who've suffered from it. Google for "anti-depressants brain zaps" and you'll find loads of info on the subject.
 
Well I'm a fortnight in. My sleep is slightly improved but I'm feeling like I'm stuck in PEM despite not really doing anything. I supervised the boys playing in the garden on Sunday and we had friends round yesterday and both things pushed me a bit. But my baseline level of what I can do is ridiculously low for me ( I can walk ~100m). I tend to use my HR as a guide to how I'm going, as well as how I feel. My resting HR (as calculated by the fitbit) has never been so high. I started on the amitriptyline on the 24th April. Not sure whether to stop or not.
I spoke to my boss today and he pretty much told me not to try and work from home this week. He's right, but I just feel like I'm giving in. <sigh> Rationally I know that's not the case but still...

For reference when I'm 'well' but working, e.g. last year before the relapse, then I'm usually at ~62bpm. When I'm on holiday, even a (relatively)) active one then it's been as low as 59bpm. This is definitely a deviation from the norm for me.

I think I'll give it to the end of the week and then stop if I'm not feeling improved. Afterall there are other approaches to use to improve sleep.

Screenshot_20190507-145703_Fitbit.jpg
 
ringding said:
I tend to use my HR as a guide to how I'm going, as well as how I feel. My resting HR (as calculated by the fitbit) has never been so high. I started on the amitriptyline on the 24th April.
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Anecdotal info : I developed tachycardia when I went on amitriptyline for neuropathic pain. According to the Patient Information Leaflet it is a known side effect. My HR went up to 150 but my BP wasn't affected and was normal. I was put on a low dose of beta blockers (bisoprolol) to slow my HR down, and it did work. But the beta blocker slowed down my HR too successfully, and reduced my normal BP as well. I ended up with my HR in the high 40s and a BP of about 93/47. I was barely able to move and I couldn't really walk without being in danger of fainting. I came off the amitriptyline and the beta blockers. Unfortunately, once the tachycardia had been triggered for the first time it continued to happen occasionally, so I still use beta blockers but only when necessary to slow my heart down.

About 3 or 4 years later, I was put on nortriptyline for what was again diagnosed as neuropathic pain (I was reluctant and I didn't believe the pain was neuropathic). I was assured that far fewer people had side effects from it compared to amitriptyline. My heart rate went up to about 135 on nortriptyline, so it was little better than the amitriptyline and I came off it.

Your faster than normal HR could be a direct effect of the amitriptyline.

Edit : I've just realised that I answered this thread a few months ago. My latest post is more or less a repeat of the earlier one. Doh!
 
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Did your GP say anything about how long it might take for amitryptiline to have any benefits? Personally I found it sedating so it definitely had an impact at first but I was pretty wiped out until 3/4 pm to start with so it was enforced rest. They might suggest increasing the dose I suspect rather than stopping them. Unless you’ve got a particularly open minded one they aren’t generally impressed by any mentions of finding stuff out from the ME community so wouldn’t mention you’ve been discussing it.

What sort of sleep issues do you have? Getting to sleep or staying asleep? I’m guessing un refreshing sleep but I think most people with ME have that and I’m unaware of anything that can tackle it. Melatonin definitely helps getting to sleep. I think I’ve already posted about that on this thread. I was always wanting to get back to work as soon as I could I understand about that. I was “lucky” I only had myself to be responsible for. But try to avoid that if you can.

If your boss is being flexible right now accept that on face value and let yourself concentrate on your health and resting. The private specialist I saw 18 month agosaid that pushing to keep going was counterproductive to my health.
 
Thanks both.
Aside from not being rested after sleeping my issue is waking up multiple times in the night, with my heart thumping away and feeling hot. Then finding it difficult to get back off to sleep. It has been better over the last fortnight. I'm taking the table an hour or so before bed (10mg). The first couple of days I woke up with a dry mouth. I've not been feeling anymore refreshed but at least I'm not laying awake for a few hours each night.

The GP didn't really say anything about how long it would take to have an influence. However, I found a link (somewhere!) on it's use for sleep that said it can take upto a couple of weeks to kick in. It might have been on the 'instructions', now I think about it. I will try being a bit more patient.

The work thing frustrates me as I enjoy my job and have quite a few responsibilities. I feel like I'm letting my team down, and they are having to pick up some of my work load. Obvs I know it's not my fault but I still struggle to stop feeling bad about it. Actually it's been reassuring over the last few weeks to see that they are coping well. I'm not as indispensable as perhaps I thought! :) Maybe it's just that I'm craving normality and am a bit worried about what the future may hold. I suppose I'm finding it difficult to concentrate on 'the now'. I'm 3mths in to this relapse and feeling worse, if anything.

Anyway, I appreciate the comments and advice. My wife is great but she's juggling a lot at the moment and it's good to have other people who understand to 'talk' to. Thank you.
 
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