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

Discussion in 'General Treatment' started by Chriswolf, Jun 15, 2015.

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Have SSRI/SNRI drugs helped you in any considerable way?

  1. Yes

    22.2%
  2. No

    20.0%
  3. It made me feel worse

    57.8%
  1. Chriswolf

    Chriswolf Senior Member

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    Since being diagnosed with CFS, I've more or less come to an impasse with the healthcare provider where I live.

    It's not that the doctors here don't believe in CFS, they all seem to roundly believe that the ONLY reasonable or acceptable treatment is serotonergic drugs, and graduated exercise therapy, full stop.

    I already try as best as I can to be as active as my body permits, sometimes I overdo it, which I try to avoid. If one even so much as broaches the subject of not wanting treatment via these drugs, at least in my experience, I've been met with annoyance and as of my last interaction, unprofessional open hostility.

    I was implored by a doctor in 2010 to try cymbalta after a particularly bad episode, which I did. Even though I didn't feel as if the medication merited the symptoms I was experiencing. He made it sound as if it were an iron-clad guarantee that it was going to help me. That was a mistake in my opinion on my behalf.

    Instead after some time, it made me feel absolutely horrible, not just mild discomfort, but perpetually and unbearably agitated. Unable to sleep and quick to anger which compounded my feeling awful for taking it as even I consciously knew my agitation and occasional outburst had no rational basis, yet I felt abnormally compelled, and my suspicion was the medicine.

    Worse yet, I was told by doctors (where I live) that it was impossible and that I was somehow at fault for not "sticking it out", even though I felt the medication pushed my ability to tolerate merely existing to unpleasant limits.

    I was later told by another doctor (who lives elsewhere), that the amount of time I had been taking it was enough to start causing adverse symptoms if I had a predisposition to experience an adverse reaction.

    I don't respond especially well to 5-HTP for that matter either, and a similar, yet less severe variation happened when I tried that as well.

    I would be interested in hearing from anyone who has benefited from it and those who have not.
     
  2. Effi

    Effi Senior Member

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    hi @Chriswolf
    I was offered Cymbalta too at some point. My body overreacts even to simple vitamins, so I didn't think it would be a good idea to begin with. Also, overe here Cymbalta is mostly prescribed for pain in fibromyalgia (which I don't have). Pain is not one of my main symptoms, and this is not some kind of sugar pill. It's pretty hardcore medication. I looked it up on PR back then and it seemed like most people had REALLY bad reactions to it (scary even). you can google site search it here: http://forums.phoenixrising.me/index.php?pages/google-search/

    New review on this topic just came out this month:
    (Btw, I think Cymbalta is an SNRI, not an SSRI, but they are very similar.)
     
  3. Chriswolf

    Chriswolf Senior Member

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    Yes, Cymbalta is an SNRI, and generally speaking the preferred class of the two that doctors in my neck of the woods seem to prescribe most commonly, at least in their words.

    I did some initial poking around with the search feature and have found that some people have benefited. 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.

    I read that another individual on the forums who has adrenal issues had a frightful experience with Cymbalta which seems familiar to my own. I can't rightly be sure if it was due to it messing with my cortsol levels, the composition of the drug itself, or if I'm very sensitive to serotonin in some way.

    I read elsewhere on the forum that some people can have an autoimmune response to serotonin, which I've never even heard of, so who knows.

    All very strange, if nothing else, I'm convinced that Cymbalta is not the way for me based on how I responded to it.
     
    Last edited: Jun 15, 2015
  4. A.B.

    A.B. Senior Member

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    Many antidepressants negatively affect thyroid or thyroid hormone function. It's unsurprising that this will make feel people with an underfunctioning HPA axis feel worse.
     
    JaimeS, Chriswolf and SickOfSickness like this.
  5. Chriswolf

    Chriswolf Senior Member

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    Hah, that's true, and as luck might have it, my thyroid is wonky as well.

    The amusing/annoying part about that is that doctors know about my thyroid issues and that many relatives of mine including one parent has them also. It also screws around with your liver, and my liver doesn't work all that well either, although I don't seem to have serious problems as yet.

    I would rather not take drugs that won't help me with any level of certainty at the risk of making either my liver or thyroid worse.

    I appears to me that at least as far as my affairs are concerned, it's a square-peg-round-hole approach on behalf of doctors. I get the distinct impression that it allows them to say they've "done something" if they prescribe it as it seems they perceive very little liability with those drugs if they do something wrong. It has happened that way for other family members who seem to have the same illness.
     
    Last edited: Jun 15, 2015
    JaimeS and Effi like this.
  6. SickOfSickness

    SickOfSickness Senior Member

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    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.
     
    Amaya2014 likes this.
  7. AndyPandy

    AndyPandy Making the most of it

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    I had a nasty reaction to just one dose of an SSRI years before ME/CFS. Definitely not for me.
     
  8. dancer

    dancer Senior Member

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    Years before the EBV/mono that started my ME/CFS, I had a bout of depression and gladly tried an SSRI short term - which was mildly helpful (or maybe I would have just improved on my own anyway).

    AFTER having ME/CFS, and my doctor saying "You're depressed and don't know it" (which didn't seem very logical, since this was a completely different experience... I was highly motivated but my body kept giving out, now exercise made me worse, my moods were fine, etc....but I digress) I agreed to try the same SSRI that had helped years early with depression. 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.
     
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  9. justy

    justy Donate Advocate Demonstrate

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    I voted it made me feel worse, but this would a massive understatement. I had two years of a living hell after taking just 2 doses of Citalopram (celexa) - I was severely agitated and couldn't even sit still for the first few months - I couldn't sit on the couch and watch TV - just pace up and down crying for months on end - I was terrified of going outside and contemplated suicide.

    While all this as going on I actually had pretty bad M.E so you can imagine that not being able to rest severely adversely affected my M.E
     
    Countrygirl and jimells like this.
  10. Hip

    Hip Senior Member

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    With ME/CFS, there is no one-size-fits-all drug that will help everyone. Very often, drugs that help some patients ME/CFS may induce negative or even hellish symptoms in others.

    A good doctor (which unfortunately are few and far between when it comes to ME/CFS treatment) will be willing to try quite a few drugs of various types in order to identify the treatments that will help you. This is usually done on a trial and error basis, since it is not generally possible to predict in advance which drugs may help (although Dr Goldstein had a system that helped him predict in advance which drugs would likely be effective).

    You may be interested in Maija Haavisto's free abridged ebook "Reviving the Broken Marionette"
    which listed many drugs that are potentially helpful for ME/CFS. You might print this out and show you doctor.

    Also see:
    Dr Jay Goldstein's ME/CFS drug treatments,
    and:
    Chronic Fatigue Syndrome — A Roadmap For Testing And Treatment.
     
  11. Valentijn

    Valentijn Senior Member

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    An NRI helped me with OI due to low pulse pressure. An SSRI made me feel much worse.
     
  12. out2lunch

    out2lunch Senior Member

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    I'd like to cast my vote, but I wish the question was more specific about which symptoms the drug is helping.

    I can't take SSRIs because of CYP450 SNPs. They work better than sleeping pills; can't stay awake while taking them.

    But SNRIs like Strattera were beneficial… for my ADHD. Did nothing for my fibro symptoms. (Had to stop taking Strattera because it made me tachy.)

    So the drug was helpful for lifelong ADHD, but not for ME or FMS.
     
    JaimeS likes this.
  13. out2lunch

    out2lunch Senior Member

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    Did the SSRI drug you out, like a sleeping pill?

    That's what happens to me, because of CYP450 2C19 mutation. I can't handle benzos or tricyclics or SSRIs because of it.

    Thankfully, more and more psychiatrists are finally realizing that many people have these SNPs and get waaaay overdosed on these drugs because their livers just can't clear them.
     
    jimells likes this.
  14. Valentijn

    Valentijn Senior Member

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    More pain, more OI, just felt awful.
     
  15. Snow Leopard

    Snow Leopard Hibernating

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    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.
     
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  16. Valentijn

    Valentijn Senior Member

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    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.
     
    Sidereal likes this.
  17. Chriswolf

    Chriswolf Senior Member

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    I was deluged with this charge by another doctor after the first experience with Cymbalta, my state of mind when visiting the doctor did not matter. 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".

    I've more or less stopped broaching the subject and have now started seeing a new doctor, he's been helpful, but it seems to me that where I live, pushing certain drugs for what I have is a matter of policy, one that they value over the wellbeing of their patients. So I do get drugs to help with physical symptoms, but I don't approach the CFS in a broad sense anymore. My new doc is okay, but I honestly think his hands are probably tied, and I don't want to fight with him on something he has no control over to begin with.

    Yup, that sounds familiar, and an extreme urgence for those effects to stop, what was supposed to ameliorate adverse psychological symptoms actually gave me ones I didn't have before.

    When I started experiencing Cymbalta's effects in-full, the first thing that jumped to my mind was "I can't live like this, I have to get off this, the CFS isn't going to kill me, living like this will". So I understand that feeling.

    @Hip

    Thank you for the insight, and by no means am I trying to demonize SSRI/SNRIs wholesale, I do know some people benefit from it. I just know from very personal experience that it did the opposite of help, and had every indication of not improving my symptoms at all, now or later.

    And yes, I would say that a good doctor would discover treatments on a trial-and-error or differential basis. Unfortunately, as I've mentioned, I think it's pretty much "in the books" where I live that such practices are verboten, considering how many doctors I've seen and how they all behave as if their hands are tied in some way or another.

    I also appreciate that link, someday I hope to see a specialist that can help, it may not be anytime soon.

    I honestly don't believe most doctors who prescribe such drugs for CFS as a cluster of physiological symptoms are generally doing so with a specific set in mind.

    Perhaps things are different and there are better doctors out there who prescribe it when somebody is legitimately depressed, or in pain, as Cymbalta supposedly helps with that sort of thing.

    My case and it seems in the case of some others, it's simply given to patients as a way for the doctor to have fulfilled some perfunctory duty and absolving themselves of any other responsibility to the patient. Nothing about my symptoms has ever merited the application of that drug, and the doctors I saw became very annoyed when even something as simple as skepticism or questions were asked about it.

    Asking for an alternative treatment (none specific) in one case garnered a reaction that I would reserve for somebody asking their doctor for cocaine, it's ridiculous.
     
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  18. jimells

    jimells Senior Member

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    This stuff nearly killed me in 2007. After I had been on it for maybe two weeks I developed the world's worst ice-pick headache. It was the worst pain I have experienced to date. I kept hoping I would pass out to escape the pain. It also caused a hypertensive crisis. I went to the doctors office which was attached to the hospital. He ordered a brain CT scan, which showed nothing of course, gave me a prescription for some combo anti-hypertensive, and sent me home. No pain medication - cause, you know, one pain pill and a person is hooked for life. I asked if the cymbalta could cause this, and the doctor of course denied it without bothering to check the PDR. I didn't believe him, and rapidly titrated off the cymbalta and later the BP pills.

    Now I know that my reaction was "rare", but listed if one bothers to look.


    Wow, two doses, that is really scary. There are so many stories about very bad outcomes from SSRIs and still the doctors just hand them out like candy with no real followup. Whenever I hear another news story about a "crazed lone gunman" I have to wonder if maybe they were one of these medications and it caused a very bad reaction - there seems to be some evidence for this, although I have no citations handy, sorry.

    OK, some people seem to benefit from these drugs, and I'm glad they do. But that doesn't mean SSRIs are like sugar pills.
     
    Chriswolf likes this.
  19. Sidereal

    Sidereal Senior Member

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    An important point. The "s" in SNRI stands for serotonin. NRIs like atomoxetine and reboxetine on the other hand are anecdotally useful for some people with OI while making other types of OI worse.
     
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  20. Chriswolf

    Chriswolf Senior Member

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    Upon reading myself about the rather shaky anecdotal evidence supporting the use of such drugs in the case of CFS, and knowing how easily doctors resort to their use while in my case simultaneously admonishing me that they must practice "evidence based medicine", I can honestly say it left me feeling pretty disheartened.

    Of course had I overtly displayed that to the doctor they would have probably used it as a justification for prescribing the medication.
     
    Amaya2014 likes this.

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