How many people here have actually benefited from SSRI/SNRI treatment on this forum?

[Sidereal]

I suspect the pressure on ME/CFS patients to take these meds comes not from evidence (there isn't any) but rather conflation of ME/CFS with depression and fibromyalgia where SNRIs are sometimes helpful.

 

[Chriswolf]

I suspect the pressure on ME/CFS patients to take these meds comes not from evidence (there isn't any) but rather conflation of ME/CFS with depression and fibromyalgia where SNRIs are sometimes helpful.

Oh, I will agree with you and go a step further and state that I believe it has a lot to do with bureaucratically sweeping a "problem disorder" under the rug, legally speaking.

Especially if you live in a place with socialized healthcare as I do. I don't want to get into a political debate over this, however from my experience when you don't directly pay for your healthcare. You have much less agency because whether you like it or not, your health now comes under the purview and consideration of a board that can't address your concerns individually, but weigh them financially against every other person that system is responsible for.

In other words, it comes back to liability, and thereby money, and in the case of CFS, you're simply not worth any risk no matter how speculative, period.

In my opinion there seems to be a whole lot of paranoid speculation about treatments that might incur costs down the road or immediately in the form of a strongly adverse reaction.

For some bizarre reason, SSRIs and SNRIs seem to exist in some sort of legal limbo in which no matter what happens, my healthcare provider is not responsible, it's the only explanation that makes any sense at all. It would also explain why doctors where I live become so angry when a patient makes a salient argument against their use.

It's probably all they can prescribe, and they know it.

 

[Amaya2014]

I have CFS/SEID with co-morbid Fibromyalgia. As far as SSRI's, I couldn't tolerate Paxil or Zoloft more than one dose. I took Celexa for about three weeks but had to quit as I was beginning to feel like a mummy and ther was no noticeable improvement in my symptoms.

SNRI I took was Effexor..again bad reaction and nothing noteable in symptom improvement.

I now take Elavil 25mg at bedtime. It's tolerable and helps a little with sleep. Mood did improve as I was experiencing frequent periods of hopelessness and tearfulness as my illness progressed. I don't consider myself suicidal and my personality is most often positive. Friends and family called me "bubbly". CFS was just unrelenting on my daily mood as I continued to lose my ability to function normally and personal freedoms.

 

[Chriswolf]

I don't consider myself suicidal and my personality is most often positive. Friends and family called me "bubbly". CFS was just unrelenting on my daily mood as I continued to lose my ability to function normally and personal freedoms.

That sounds like myself for the most part, only perhaps not so bubbly as capable of being in decently good spirits most of the time.

 

[Amaya2014]

I was hesitant to use antidepressants because of the significant pressure that "this would solve all my problems". It became a catch-22 because I knew I was slipping emotionally but I didn't want to give the docs the satisfaction of writing me off.

Finally, I gave in because I knew being ill for so long was taking its toll and changing me. I figured if this does solve it then at least Id be better and could move on with my life. if it didn't work at least I could have a better affect and a smile on my face as I continued to explain that all the other symptoms were still there so what now?

I guess it worked because I have a much improved mood and the docs finally had to concede that medication and therapy certainly weren't the quick fix they'd hoped. Also, my therapist became a strong advocate for me.

 

[Chriswolf]

@Amaya2014 I'm glad it managed to become a net positive in terms of advocacy and improving the emotional side of things.

I can say with a degree of certainty in my case, being related to somebody who has similar yet undiagnosed issues and was prescribed an SSRI which did work for a while for them. That the mere acceptance of using the drug became the doctor's argument to dismiss their health concerns as nothing more than psychological.

My current doctor does not even bring up the subject of such drugs, he simply tries to focus on directly treating physiological problems that he has some agency over treating, which is better than what other doctors have done with my case so far.

 

[caledonia]

If you're getting agitation when starting the drug, this is a very bad sign. This is the symptom that causes people to commit suicide shortly after they've started the drug, or if the drug is stopped or the dose is changed. I suggest following your gut instinct and avoiding SSRIs/SNRIs like the plague.

Some people have mutations in the CYP pathways that metabolize these drugs, and so can have trouble with them. In addition these drugs have numerous side effects and can deplete B vitamins (the very vitamins that are essential for good mental health) and so can cause a downward spiral. Prozac, if I remember correctly, is a mito killer.

In addition, even if you are doing fine on them, if you ever want to come back off, it may not be as easy as doctors say. These drugs can be extremely addictive and cause a horrendous withdrawal syndrome if you try to come off too fast. This is due to the brain changes caused by messing with neurotransmitters. I have personal experience with this - I call it my "Lost Year". I have done much research into these drugs after this episode.

I'm currently two years into an extremely slow 4 to 5 year taper off Zoloft. This allows to the brain time to adjust it's neurotransmitters in small steps and minimizes withdrawal symptoms. This might be the only way you can ever come off these drugs.

There are many other effective and less dangerous ways to help the problems that these drugs are prescribed for, but mainstream docs aren't going to know what those are.

 

[Gondwanaland]

After being put on levothyroxine by my endo I had to run to a psychiatrist to beg for citalopram. Later when I switched endo and the new one put me on compounded T3/T4 I noticed that I would feel awful after taking the SSRI, so I quit it (it took me about 3 weeks tapering down - I was already on a lower dose than what normal people take since i couldn't handle the normal dose).

 

[Chriswolf]

There are many other effective and less dangerous ways to help the problems that these drugs are prescribed for, but mainstream docs aren't going to know what those are.

Yeah, I knew within a short period of time that something was terribly amiss and I was already feeling physically awful so I just couldn't manage it, I knew I had to stop. And yeah, I can very readily conceive how somebody who felt they couldn't get off the medication would start to feel suicidal. I didn't, but I had a sense of deep foreboding when the symptoms got bad.

And I would absolutely love to see a doctor that had the power to determine and prescribe drugs that had a significant impact on my health, so far I've been getting little bits here and there addressed, although nothing huge.

I'm pretty sure I have recurrent EBV and my goal is at some point to have that evaluated, hell, I'd love to try just going on Valgancyclovir for a period of time to differentially figure out if it helps preventing viral recurrences, I know it has to be a considerable period of time to be effective, and cost be damned, I would make it work.

Another poster here spoke about how nitrogylcerin helped them which also piques my interest as L-citrulline and arginine has helped me in the past.

@Gondwanaland

My family on my mother's side has thyroid problems, and all of the relatives that are still being treated with levothyroxine are doing badly, I won't ever go on T4 alone, I've seen what it does to my relatives. Yet another reason why taking SSRI/SNRIs would complicate things.

 

[JaimeS]

SSRIs (and most meds) cause me too many problems. My thyroid problems might be part of why.

However, diet and supplements have raised my serotonin and higher serotonin helps somewhat.

How has diet raised your serotonin levels?

-J

 

[JaimeS]

Just a FYI, SSRIs have failed to demonstrate efficacy in CFS for any symptoms (including depression) in double blind RCTs. In a word, they are currently not evidence based treatments for CFS patients.

Please cite! This is a study we would all like to have.

-J

 

[JaimeS]

My own experience wasn't with an SSRI, but with 5-HTP and with an herbal formula in which the main component was serotinergic.

After I had been on it for maybe two weeks I developed the world's worst ice-pick headache.

Mine was with the second dose of 5-HTP and the first of the herbal formula. Very characteristic, unmistakeable - if you didn't have your eyes open, you'd swear someone had a blunt mental instrument and was pushing with increasing and inexorable force.

I felt terrible. Agitated, jangly, sicker. Whatever shifted in my body due to the ME/CFS, my reaction to medications was definitely one of them.

Yep. But again, because I am a special little genetic snowflake, 'agitation' is a mild way of putting it. I got muscle spasms in my large muscles: glutes, legs, upper arms. Then one side of my face began to tingle... and slump. My eyebrows are back to being more or less level, now, thanks. I suppose I had a stroke.

This repeated all evening about every two hours. I dropped into sleep in between, exhausted.

Most awful medical experience of my life, which is at this point really saying something.

All I can imagine is that, because of some common ME issue, we are more likely to be agitated by SSRIs than helped by them. However, I am also homozygous recessive for MAOA, meaning I break it down even more slowly. Still, even that doesn't explain this at all. I have no idea why my body despises serotonin so much!

I have adrenal problems, last year I was actually given an appointment with an endocrinologist because my cortisol was so low. Unfortunately he didn't put me on anything good because I responded well to ACTH, even though a good response (mine was very good considering how low it was) can be indicative of problems with the body's ability to produce ACTH itself.

My ACTH is quite low, though I had a response to the ACTH stim test. The ITT test is the gold standard for determining if you have pituitary issues by measuring cortisol response to stressors. I actually did okay with this one in terms of how I felt. If you really want to know how screwed your HPA axis really is, this is the one to do.

This happened until finally they lost patience with me and attempted what I can only describe as high pressure sales tactics, which concluded with the doctor spitefully telling me: "You will suffer for years if you don't take this".

Yeah... been there. I'm so sorry you had to go through that. It's pretty awful.

Part of me really wonders what that's all about, psychologically. (From their perspective.) Why is it so important you take an SSRI? I honestly don't understand.

-J

 

[Gondwanaland]

I have no idea why my body despises serotonin so much!

Serotonin is Ray Peat's nemesis. I guess he is also + MAO-A like us

 

[CFS_for_19_years]

Several years ago I got a boost in energy and alertness while taking Effexor XR, so I took it for several years without any problem. Now I can't tolerate it at all because it makes me nauseated and causes abdominal pain, and it does nothing for my energy at all.

Cymbalta seems to help somewhat with back pain, but that's all. I have fibromyalgia and this is the only impact it had on my pain.

Paxil (paroxetine) has been helpful in the past for sleep, but I can't take it now because it raises my blood pressure and worsens my dry eyes.

I didn't vote in your poll because of the variety of drugs and variety of effects (some good, some bad).

 

[Misfit Toy]

Prozac at half a dose made me nauseous. Remeron helped me sleep, I became fat on it and it did nothing for depression.

Every single SSRI I have ever taken has made me so nauseous and it has acted up my Gerd so much that I can't take it. I can't even lay down on them because my esophagus burns. Plus, I feel exhausted on them.

And my last psychiatrist explained to me that serotonin is made mostly in the gut and for whatever reason the SSRIs are affecting my gut. The nausea, Gerd, etc.

I just had a genetic test to see what possible antidepressant would help me. The real reason I want to get on one is for sleep since I just can't seem to sleep.

Effexor made me feel like I was spewing out adrenaline. I was so anxious on it.

Wellbutrin caused me to feel drugged. Slurred my speech.

 

[A.B.]

Please cite! This is a study we would all like to have.

-J

Randomised, double-blind, placebo-controlled study of fluoxetine in chronic fatigue syndrome.

 

[SickOfSickness]

How has diet raised your serotonin levels?

Sometimes I do what "Potatoes, Not Prozac" recommends which is just to have a potato (without protein) three hours after protein. Later in the day when you want to feel more relaxed.

It seems that turkey really raises my levels, even though they say turkey does not have more tryptophan than chicken. Somehow it's very different for me, or maybe I'm just confusing some other effect.

(Wikipedia also says that eating foods with tryptophan will not help serotonin due to BBB, but my BBB is leaky. Same with a lot of people's.)

 

[Chriswolf]

My ACTH is quite low, though I had a response to the ACTH stim test. The ITT test is the gold standard for determining if you have pituitary issues by measuring cortisol response to stressors. I actually did okay with this one in terms of how I felt. If you really want to know how screwed your HPA axis really is, this is the one to do.

I'm pretty sure it was synthetic ACTH that I was tested with when I saw the endo, my cortisol levels shot up to a value greater than a factor of 4, my cortisol was 90 nmol/l it went up into the 500's.

The reason why I wasn't given anything, according to the endo was that my cortisol response was so good, even though it leaves a lot of questions about why it was so low before the administration of synthetic ACTH.

Apparently they only treat Addison's disease, which I understand to an extent, as cortisol is no laughing matter. However I know for a fact I do well when I augment with synthetic cortisol. I use pregnenolone when I'm feeling particularly awful, which has it's own pitfalls. Even topicals applied under my arms and behind my legs help when I'm feeling particularly bad.

And no, I hadn't used any of those and suppressed my cortisol levels prior to the tests, I hadn't exogenously used cortisol or precursors for a good long time prior to those tests.

It does make me wonder about my response to cymbalta as far as what it can do to people with adrenal issues.

Yeah... been there. I'm so sorry you had to go through that. It's pretty awful.

Part of me really wonders what that's all about, psychologically. (From their perspective.) Why is it so important you take an SSRI? I honestly don't understand.

It was pretty demoralizing, especially considering I was physically in a bad way when I went to see him.

You mean the nastiness and persistence?

As I said in a previous post, at least as it pertains to my situation, I believe that their bureaucratic overlords have decreed that patients such as myself get nothing but the most pedestrian of treatments, and I think deep down some of them know it's B.S, but they can do nothing else except offer that.

Some of them may be selfish and fear being complained upon, which will result in no actual resolution for the patient and a whole lot of headache for them. I chalk it up to professional self preservation. I believe most doctors see people with CFS as being "radioactive".

 

[Sushi]

An NRI helped me with OI due to low pulse pressure.

Strattera is an NRI, not an SNRI. It's the one I found helpful as well, for OI. I don't have ADHD or anything similar.

Strattera helped me immensely with OI. I have NMH, not POTS. But, by doc wisely told me to start it with 1/3 capsule every 3 days and to slowly increase. It took about 6 weeks to get up to the low dose of 10 mg twice a day that helped so much.

I also don't have ADHD and strattera was prescribed by an autonomic specialist who knew of its benefits for certain types of OI.

 

[JaimeS]

I believe most doctors see people with CFS as being "radioactive".

Fascinating way to put it. It's the aggressiveness of it that floors me, though. Why push it that hard? If that were all I could offer a patient with CFS, I would offer it to them and then think I had discharged my duty if they said they didn't want it. Why the near-hysteria when you refuse? I encountered the exact same thing...

-J