SEID and antidepressant failure

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I'm amazed that anyone with SEID ever has success with antidepressants? I know some have decent improvement, even though this is NOT a psychiatric disorder. Don't they either just make you more fatigued or overly stimulated? Especially since they are all either activating or sedating?
 

Wishful

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My doctor had me try two different types. Neither had any effect on my symptoms. When he told me to increase the dosage, it just made me feel dizzy, so I stopped.

My feeling is that antidepressants might help clinically depressed people who have ME, but isn't something I'd expect to help with ME symptoms.
 

Hip

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There is actually one antidepressant that has shown benefit for ME/CFS, which is moclobemide, an MAO-A inhibitor drug (it increases dopamine levels by inhibiting the dopamine breakdown enzyme MAO-A).

I've been taking low doses of moclobemide (75 mg daily) to help with my comorbid depression, and it does work for me. I am going to venture to higher doses, but I am alway cautious with antidepressant drugs. The max daily dose is 600 mg.

Moclobemide has the advantage that it has been shown to have far less risks for the permanent sexual dysfunction side effect that is very common with SSRIs and SNRIs, and common with TCAs and other MAOs too.
 

Shoshana

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@Hip
Have you experienced no difficult side effects, so far?

I don't usually go to mayoclinic's website, but they mention dizziness and lightheaded effects for older people, from it?
I went there, to peruse additional info on it, after finding moclobemide not listed at all on some medical sites.

I then found that it is NOT available, at all, in the USA? Is that correct?
Is available in Canada, from what I saw/.?
 
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Hip

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Have you experienced no difficult side effects, so far?
None at all. Very occasionally I'll find a drug that works so smoothly and without observable side effects, so that it actually feels more like a supplement than a drug. For me moclobemide is one of those drugs. It feels benign and "natural".


I've experimented with several antidepressants including:

The SSRI citalopram (which was horrible, as it made me dramatically more depressed). My theory is that those with chronic brain inflammation may feel worse on SSRIs.

TCAs like amitriptyline and imipramine (which sort of work, but the antidepressant effect feels unnatural and unbalanced).

The SNRI bupropion (which actually worked amazingly well eliminating both my depression and most of my ME/CFS symptoms — but then mysteriously just entirely stopped working).

Low-dose amantadine, which Dr Bell found helpful for ME/CFS (this had some mild antidepressant effects).



If you want an interesting supplement antidepressant, then saffron has been shown in several studies to be as effective as pharmaceutical antidepressants. I frequently use saffron 100 mg on days when my depression is worse, and its effects are noticeable and kick in within an hour or two.
 

Hip

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I am still confused about the unavailablility in the USA.
Moclobemide is not licensed in US, for some reason. Though it does have a European license.

I read that when moclobemide first came onto the market, it was predicted to become a blockbuster success, because of its antidepressant efficacy. However, unfortunately for moclobemide, all these new SSRI drugs like Prozac also first appeared at that time, and the SSRIs took all the limelight (or possibly SSRIs were better promoted by the media and by drug companies by giving doctors financial incentives to prescribe them). Or maybe the US wanted to protect its own market? I don't know. So moclobemide fell by the wayside.

But now that we are more familiar with the downsides of SSRIs, moclobemide looks more favorable.

In the US, you can legally import from overseas pharmacies any (non-controlled) pharmaceutical drug for personal use which is not available in the US.

Technically you are not allowed to import pharmaceuticals in general in the US, although authorities often turn a blind eye; but US law states that if the drug is not available in the US, then it's legal to import.

In the UK it's easier, as here we can legally import any non-controlled pharmaceutical drug we like.
 

Shoshana

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Thanks @Hip but it would also require getting a script for it, I think,
which the US doctors that I know, would not do, for a med not available here.
 

Hip

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Myself I usually buy my drugs from prescription-free overseas pharmacies (such as those listed in this post). But I would not recommend this unless you feel comfortable about you own abilities to research all about a drug and its possible side effects and its drug interactions with other drugs.
 
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As someone who has tried virtually every class of anti-depressant treatment, plus about every supplement and lifestyle hack you can think of, with the lone exception of 1950s-style irreversible MAOis or any neuroleptics, both before and after the distinct dividing line of developing chronic fatigue with PEM features.

I can say that the only medication that made a tangible difference is Tianeptine. The problems with Tianeptine are that it is a lot more expensive to obtain in bulk quantities than in the past (I need 60-80mg a day to make a diffrence), and it isn't really a sustainable solution for me due to ultimately making the symptoms, which it initially improves, worse after 2-3 months. I also get similar benefit and relief of fatigue and dysautonomic issues from narcotic opioids like hydrocodone or very-low dose oxycodone. Of course, good luck getting opioids these days from a legitimate source, with or without such a compelling argument.

All of the other, more typical or off-label AD medications, including things like Lamotrigine, Selegiline, Tramadol, buproprion, or fluoxetine, which are assumed to be "activating," have too much of an undesirable side effect:benefit ratio. The normal go-to TCAs, serotonergics, or atypicals like lithium, DXM/Ketamine or Mirtazapine induce too much apathy and zombiness for me.

I'm pretty convinced that, in general, whether CFS/ME or not, the people who respond favorably to ADs are those people who either have an anxiety disorder, or a non-chronic, relatively short-origin depression - in which case, it's arguable the "benefit" of medication could just be conflated with spontaneous remission of the short-lived depression episode. I am more of a decades-long dysthymia type, and persistent/chronic depression is an entirely different animal than depression secondary to anxiety disorders or short-term-origin depression episodes.
 
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It also seems, if you willing to risk the potential serious side effects and get past the stigma of the drugs, low-dose atypical antipsychotics, like Amisulpride and aripiprazole, could be very helpful for those who otherwise respond favorably to psychostimulants. @Hip has written a lot about Amisulpride in particular. At low doses, these neuroleptics are purported to provide a stimulant-like mood and energy boost in such a way (I'm not getting into the proposed mechanism because it is likely just speculation) that may not lead to inevitable receptor down regulation and diminishing returns like every psychostimulant does.

I would try aripiprazole in particular if I had faith it was worth the out-of-pocket price and I didn't already have stimulants in my tool kit.
 
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Atypical antipsychotics have been awful for me in the past, although I have not tried Abilify. But I can't imagine it would be different than the rest of them in a meaningful way. I thank you for your thoughtful responses though. It was informative and interesting to read.
 
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@Dichotohmy, I was interested in your post, since I recently discovered that lamotrigine relieves my problems with digestion. I also suffer from chronic depression, fatigue and brain fog. And I have been trying different medicines for many years, but they do not help me. As for lamotrigine, already after the second pill, I felt a bitter taste in my mouth and it was difficult to fall asleep in the evening. Phenibut also helps me with digestion, but it also hurts my sleep and has a disgusting withdrawal syndrome.
Therefore, I continue my search. First of all, I am looking for a medicine that could reduce my digestive problems without significant side effects. Can you suggest something in this direction?
 

Pearshaped

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for helping sleep i was forced (had really no choice) to try 15mg mirtazapine.
I was not happy to take an AD

it never helped with sleep BUT it did and still does with sensory overload!!!

Nonetheless,more than 15mg is not helpful at all. makes me feel worse.

I still think ADs are not for ME people but it is said in low doses it can be somewjat helpful
 

outdamnspot

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I had adverse reactions to literally every single psych drug I tried, and the list is huge (I was trying to treat severe OCD, ADHD and depression prior to falling ill with severe CFS, though I suspect I'd already developed mild/moderate CFS at that point). SSRIs and antipsychotics gave me akathisia, benzos agitated me, stimulants made me foggy, mood stabilizers made me depressed; I even tried off-label drugs like Memantine and Rilutek, and high-dose Parnate.

My psychiatrist of two years (who was also my therapist) got (understandably) frustrated and discharged me eventually because I'd exhausted his abilities. Sometimes I get the urge to write to him and tell him I developed CFS, which likely explains all my bizarre sensitivities, since I've always felt this weird guilt that I 'failed' him as a patient.
 
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@outdamnspot, have you tried cannabidiol (CBD oil)? It helps me from depression, relieves internal stress, relieves obsessive states. Side effects are slower digestion and shallow sleep. Because of the side effects, I can take it only occasionally, but it's better than nothing.
You can also try swimming in the pool. For me, this is the only physical activity that does not aggravate my chronic fatigue. Moreover: swimming in the pool improves my overall well-being and is an excellent reason to walk. Starting to visit the pool is better with a coach.
 
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Wishful

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My psychiatrist of two years (who was also my therapist) got (understandably) frustrated and discharged me eventually because I'd exhausted his abilities.
I only went to a psychiatrist a couple of times, and when the antidepressants didn't work as he thought they should, he dumped me as a patient. I thought it was really wrong for a psychiatrist to tell a suicidal patient "Sorry, I've done all I can for you." and let him just walk out the door. Not impressed by psychiatry.
 
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I jumped on this thread because I had a first neuro appointment and he put me on Amantadine (only one mention but I have so much experience with ADs).
I have been on just about every AD known to man ever since I was misdiagnosed with depression 22 years ago, when I went to the doctor complaining of fatigue. My first one was Paxil and I had such a terrible, but atypical reaction to it that I ended up in the psych hospital for 2 months. That pigeonholed me into the psych track, leaving the CFS undiscovered until it manifested as Fibromyalgia 10 years later.
Once I was diagnosed with fibro they put me on Mirtazipine which helped the fibro some. I had PEM all of this time, but didn't know there was a name for it.
Then I was put on Cymbalta. It worked amazingly. Helped the pain and the fatigue (brain fog was not bad at that point) I was able to return to my full time nursing career for 3 years. Then it failed, and when it failed I was 10 times sicker than when I first went on it. I've been disabled ever since. It was then that I was finally diagnosed with CFS (8 years ago).
I was still on various ADs till 3 years ago when my body was growing to be intolerant of all of them. At that point, weaning down on one and going up on another I wound up in the ER with possible serotonin syndrome. At that point I was suddenly taken off of the SSRIs.
At the time of CFS dx, I was put on Doxepin for rashes and that is the only AD I am still on. It really helps with sleep, but I can't move the dose AT ALL or else I get severe brain fog and all of the crap that goes with it, plus very much mood instability.
I do have comorbid GAD and PTSD.