Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Discussion in 'General Treatment' started by m1she11e, Aug 18, 2012.

  1. m1she11e

    m1she11e Senior Member

    I have heard that some people find antidepressants helpful. Of course I am not saying that CFS/ME is depression. I know that it can be part of a protocol that may give symptomatic relief.

    I have tried to a few antidepressants over the years but the side effects are always too much to deal with. I recently tried them again after some one with CFS/ME I knew said she was using them in conjunction with anti virals and a host of other treatments. She said the antidepressants were what kept her functional. SOOO, I tried Celexa. I took a half of the lowest dose last Sunday and felt like sleeping all day. The next day I took a fourth and still could barely function. I tried an eighth and only took it at night. I did sleep REALLY hard but am a total zombie. Im at a level of functioning that I can work currently but the fatigue of the Celexa at even the smallest dose leaves me unbearably tired. I could sleep all day and night.

    Ive heard healthy people say that fatigue in the beginning of using an antidepressant is normal and goes away. I cant deal with it and cant sleep for 2 weeks straight. Im wondering if anyone understands WHY that antidepressants can make some of us feel SO bad. If the drug itself doesnt start building in the system enough for the positive affects for 4-6 weeks, what is happening that would make me so tired right from dose one?

    I am never touching an antidepressant again. Any one else with any experience or understanding of why they would cause such fatigue??

    Nap time again.....(Thanks Celexa!!)
  2. silicon

    silicon Senior Member

    It seems that I can't touch antidepressants either...but for an opposite reason--they "pump" me up too much as they seem to stimulating...I have tried one dose of 2 different antidepressants (one of these doses was a tiny fraction of a tablet--Celexa in fact) and that was enough for me. I may be an extreme case, as I can't even tolerate coffee, and I avoid things that have even a mildly stimulating effect. I do think that many people with ME/CFS seem to "metabolize" medications very intensely...the so-called phenomenon of "medication-sensitivity".
    justy likes this.
  3. jeffrez

    jeffrez Senior Member

    Sorry to hear you're having a hard time with it. I've heard a lot of people say that SSRIs can take a while to work, and even that you might feel worse at first, but in my experience once I started feeling worse from them I never stopped feeling worse. The longer I took "the bad ones" (for me) the worse I felt, in fact.

    Otoh, just because one doesn't work for you doesn't mean none of them will. If you feel you really need to take something, it might be a good idea to talk to your doctor about trying a few different ones until you hit on one that you feel better on - or at least that doesn't knock you out! lol
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    there was a study a year or so ago that should zoloft and lexapro were the most effective antidepressants on the market, even compared against the dual reuptakes like cymbalta and effexor. They took into account things like price, side effects etc as well as its effectiveness.

    Again if i was going to use these i would be starting at a 1/4 of the dose of the smallest tablet. I have used zoloft in the past and it has helped but another time i used it i got side effects, overstimulated etc. I have a theory on this, since i have slowly improved my dhea levels with small incremental doses until my blood levels are within the mid range of normal, i seem to tolerate things that are stimulating eg sudafed PE which is quite tame as far as stimulants go would hype me up and disturb my sleep even though i would take it in the early morning. Now when i use it for sinuses it helps with that issues but i now dont get the over stimulation i once got. I have had the same effect with pregnenolone. Now i think anything stimulating probably increases cortisol to varying degrees, without dhea cortisol runs wild and we get that over stimulated feeling.

    I think when i first used zoloft my dhea levels were within normal range and the longer i have had cfs, slowly my dhea levels have dropped to below normal range, this is when i would have used zoloft and had over stimulation problems. I have yet to try zoloft again since getting my dhea sorted, but at the moment dont have a need for it, but i think dhea also has improved things that zoloft would anyway.

    Sorry for dribbling michelle, i suppose im suggesting zoloft or lexapro and maybe if overstimulation occurrs from them then maybe look at dhea levels, although these hormone situation obviously vary between the sexes. I also wonder ifthe sedation effects your getting from your current AD could be from whacky hormones obsure the effects one is suppose to get from them.

  5. *GG*

    *GG* senior member

    Concord, NH
    So you didn't have issues getting quality sleep before?

    I only take an anti-depressant for sleep. I have been on it (Remeron aka Mirtazapine) for 3 years now and am awaking more refreshed than ever!

  6. August59

    August59 Daughters High School Graduation

    Upstate SC, USA
    I've tried Prozac and it did absolutely nothing. I even went up to 80mg a day and still nothing pus no side effects. My doctor started laughing and said he knew that I had to be having problems getting a stiffy!!! (this was right about the time that movie the "The Full Monty" came out) and I laughed back and told him there was no change in that area either. He just shook his head and seriously suggested I might have problems with P450 chromosome or something.

    Tried Zoloft after that and it seemed to work pretty well except for gaining 25 pounds. Then I went to Celaxa and even at a low dose I was a zombie. Talking about sexually side effects, the stiffy was there but that was all that was there. My wife at the time said he needs to cut your dosage in half or change meds one. They tried effexor after that and the first 2 days that I was on it I felt better thn I had in years, but after a week that was gone and then it was just a clammy feeling and my blood pressure went way up. I decided to just quit for awhile and that lasted for about 8 years.

    Next thing I tried was Cymbalta and it does a pretty good job cause it helps with pain to. Virtually no side effects and it also helps with my anxiety and anxious feelings.

    Hunter Hopkins likes to start on low doses of Zoloft because over the years it had the least harsh side effects. I read somewhere not long ago that Lexapro and Cymbalta were the most effective towards anxiety. They all seem to effect serontonin and either or norepinepherine and dopamine, except for Celexa which exerts its effects at 99% to serontonin and nothing else. I think Celexa would be a good choice if you could get it in micro doses.

    I read this in doctors office the other day and it was a small article on Savella, which is the new SNRI, for Fibromyalgia. It exerts its effects almost totally on norepinepherine which was suppose to support the theory that there was to much norepinepherine in the synapse and it was over firing (something close to thi anyway). One of it's biggest side effects though was actually causing anxiety and was the biggest reason for people stopping it.

    That's all I know, but I think they are worth trying only if starting at low doses and working up slowly. I think some of them should have more dosing options. It is true that everyone is different and not always the drugs effect on you, but like in my situation with Prozac where my doctor seriously thinks I had the inabilty to break it down and process it. If there is me there are others!

    Everybody have a great day or night!

  7. MishMash


    You should take whatever drug helps you. But there is a huge debate going on at the highest levels of medical science about whether serotonin is really at the heart of many depression cases at all. The consensus now is that it isn't. The benefit from SSRIs compared to placebos is about a 5 or 6 percent difference. Barely beyond statistical randomness. Some of these "anti-depressants" do have slightly sleep-inducing qualities for certain people, so they use them for insomnia. Nobody knows what the mechanism is. You are just playing with your brain chemistry. The companies overstate the benefits, and understate the side effects. The big pharma companies have been given huge fines by the federal government for their misleading advice. Besides intense anxiety and insomnia there is major depression, and the occasional suicide, directly as a result of SSRIs. What amazes me is that they give these to service men and women coming back from Afghanistan or Iraq. That's what you want; a combat veteran with PTSD, taking an SSRI with all those side effects. If you had the symptoms I had, find a new doctor and don't take any more of this worthless snake oil.
    peggy-sue, Merry, jimells and 5 others like this.
  8. adreno

    adreno PR activist

    Sertraline and fluoxetine are more stimulating than [es]citalopram. You might give one of those a shot, starting at a quarter dose, i.e. 12.5mg sertraline or 5mg fluoxetine. Another option would be to try an SNRI, perhaps duloxetine or milnacipran.
  9. Calathea

    Calathea Senior Member

    If you're talking about antidepressants specifically to treat ME symptoms, rather than to treat depression in people who also have ME, then I believe that they're generally talking about tricyclics such as amitriptyline, rather than SSRIs. The tricyclics are generally taken at a much lower dose for pain and sleep than they are for depression, so that they don't actually function as antidepressants at that dose. They work for some people, and others find they're useless and/or too much trouble in the side effect area.
    L'engle and justy like this.
  10. wdb

    wdb Senior Member

    I found patientslikeme very helpful for comparing prescription drugs, there is a lot of info on side effects so it can really help with avoiding drugs that would likely make you worse than better.
    L'engle likes this.
  11. m1she11e

    m1she11e Senior Member

    Thanks for all of the great feed back. I am not depressed, well maybe I get depressed because I am sick but not what I would consider true clinical depression. Its situational and it isnt all of the time. I really was taking it because there are stories of people feeling much better as part of their protocol. I decided any increments I can gain in the "better" department I will shoot for.

    I will say that Celexa does give me the best sleep of my life but even if I take it at a quarter of the smallest dose before bed, it knocks me out through the next day as well. I didnt take it at all yesterday (Saturday) so my last dose way Friday night and here it is Sunday and I can barely drag myself out of bed. LOVE sleeping like that but it doesnt help me much if I cant wake up. My muscles are tired and weak too. I know the half life is about 35 hours so I expected to just be normally fatigued by today. Maybe it has something to do with how it affects all of the hormones??

    I may try some of the other RX's that were suggested. I tried Prozac may years ago and it made my Vertigo go nuts. I cant say Im willing to go through this again for awhile though. Hope I didnt cause some sort of a downward spiral. Just never know what can cause one of those.

    Thanks again!
  12. justy

    justy Donate Advocate Demonstrate

    Hi Michelle , i think unless you have severe pain or insomnia or depression then no antidepressant is going to make the M.E better. I personally wouldnt mess about with my brain in this way unless there was a serious reason for doing so.
    I have had a very severe reaction to just one dose of Citalopram - took one more of the urging of the GP and had horrendous side effects that lasted for about two years.
    Many PWME are made worse by antidepressants and i dont know anyone who was cured by them.
    As mentioned above some people find amitryptyline, at very low doses at night useful for pain and sleep.

    I hope im not being too strident - i just worry for people who dont realise how serious the side effects of some of these drugs can be. When i took the two doses of antidepressants i wasnt depressed so it wasnt any interaction with depression that caused my living hell for the next two years after taking it.

    Take care, Justy x
    JaimeS, Merry, taniaaust1 and 2 others like this.
  13. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    Note that SSRIs have never demonstrated any efficacy in CFS patients in double blinded clinical trials, with no reduction in depressive or anxiety symptoms. I am confused as to why they are commonly prescribed to CFS patients without consideration of the evidence base.

    In addition, when Serotonic pathways were investigated (mostly in those who have never taken SSRIs), the Serotonic activity was actually increased. On the other hand, there were several studies from the UK and Japan that found reduced 5-HT receptor binding affinity, but all of these studies had a large majority if not all patients with previous antidepressant use and this is a known side effect of antidepressant use, so it is most likely associated with that rather than CFS itself.

    Tricyclics and monoamine oxidase inhibitors on the other hand have demonstrated efficacy in reducing depression as well as some minor improvements in other symptoms (eg a monoamine-B inhibitor demonstrated improved 'vitality' scores on the SF-36 in a study by Natelson and colleagues.)
    August59 and L'engle like this.
  14. nanonug

    nanonug Senior Member

    Virginia, USA
    I am somewhat convinced that the fatigue in ME/CFS is mainly due to low dopamine. I am even more convinced of this if the person exhibits the typical "brain fog" symptom. Therefore, taking an SSRI and increasing serotonin is going to further cause a relative reduction in dopamine. The solution is then to go with something such as Wellbutrin XL. This is what people with Mast Cell Activation Syndrome (my hypothesis for ME/CFS) take for depression.
  15. m1she11e

    m1she11e Senior Member

    Oh, that is very interesting!!!
  16. SOC

    SOC Senior Member

    As far as I can tell, PWMEs who get improvements in their ME symptoms with ADs do so because of the secondary effects such as sleep improvement and pain reduction. For those effects the dosage is usually lower than needed for AD effects.

    If you want to try ADs in order to improve ME/CFS symptoms, I imagine you should tailor them to the symptoms you want to improve and not just take any old AD. Messing with your neurochemistry when there's nothing wrong with it seems like a bad idea all around to me.

    Do any SSRIs help any ME/CFS symptoms?

    Cymbalta (an SNRI) can help some types of ME/CFS pain.
    Trazodone (an SARI) can help maintain sleep (stage 4?)
    taniaaust1 and KathySkes like this.
  17. redrachel76

    redrachel76 Senior Member

    I am on Seroxat. I tried a number before- Trazodone, Amytriptiline.
    I was put on them from the very start when I got ill in 1993 ish at age 16 and was naive enough to believe the doctors when they said any tiredness or side effects will just go and the drug will help M.E. I don't blame the doctors as they (and you by the sounds of it) are told that it gives symptomatic relief.

    Eventually the tiredness and side effects some of them gave me at the start did go but the antidepressants did not help me. The hassle and symptoms of getting off them is now too hard for my M.E ridden body.

    I suggest you just listen to what your body says and keep well away from anti depressants unless you have severe primary depression and nothing else can help your depression.

    Re: sleep issues, I think sleep is the only thing antidepressants like Amytriptiline can *sometimes* help. Even then I found it very habit forming and addictive. It got to the point where I had to take it in order to sleep. So if you want to try amytriptiline or something else for sleep make sure it is only occasional.
    Sing, MishMash and justy like this.
  18. m1she11e

    m1she11e Senior Member

    I appreciate the input. I guess I was more than anything wondering if the fact that I get SO tired when Serotonin is raised is a clue to anything. Something along the theory of Nanonug.

    The person I know who was mentioning a lot of relief with anti depressants goes to a top CFS doc. She says that it gives her a lot more energy. She still is dealing with the viral issues and other things. I wanted to see if I might get any kind of an energy lift from it. My doc said Celexa is low in side effects so we started with trying that one. Not sure I even really want to try another one for awhile.

    Finally feeling the affects wearing off....Thank goodness!!!
  19. xks201

    xks201 Senior Member

    My main hypothesis of CFS is excessive norepinephrine signaling, which can be reduced with clonidine and wellbutrin. It is a hyper - sympathetic nervous system state. Alternatively it could be gut bacteria exuding toxins which block efficient norepinephrine signaling.

    I don't know of many people that do well on SSRIs as monotherapy. Serotonin is a chemical of hibernation. It elevates to put us to sleep. Sure some is needed for everything but I am not entirely convinced that people with chronic fatigue need more serotonin.

    I would try wellbutrin and clonidine.

    Then you have to factor in hormones...For example if you are cortisol deficient you could be low in all neurotransmitters.

    When serotonin is raised and you get tired it means that your dopamine and or norepinephrine signaling is low. They both actually use the same transport system.
    Sing and m1she11e like this.
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    I think anything stimulating is potentially going to increase cortisol and if low in dhea then one will get overstimulation feeling. ssri's do have some carry over affect to noradrenaline and dopamine, so maybe its these components that cfsers are over reacting to because of low dhea or something else. its interesting that supplements like 5htp or tryptophan dont cause over stimulation but ssri's do, i think the above i have mentioned is the cause.

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