Are SSRIs bad for CFS or not?

Discussion in 'Fibromyalgia Main Forum' started by Marta608, May 1, 2006.

  1. Marta608

    Marta608 Member

    I wrote a vague title before so I hope this will get some more attention.

    I had been taking a small dose (2.5 mgs) of Celexa per day for two years, slowly stopped it and now am in a major CFS experience the likes of which I haven't experienced in the 11 years I've had this illness. It can't be a coincidence.

    Thoughts? Ideas? Similar experiences? Please.

  2. Marta608

    Marta608 Member

    ....of course, considering the state of the world, that we're anxious and depressed but we "excel" at those conditions. Let us think of ourselves as connoiseurs of stress.

    No stress gets by us. We are Experts on The Condition.

    Yea us.

  3. Marta608

    Marta608 Member

    What a perfect reply!

    You hit my nail exactly on its head with the symptoms you experienced and, I see, you eventually live to tell the tale in spite of ensuing doubts. And irritation! Today I furiously told a contractor that his employee was a, a, a Poop Head! You laugh.... So did I, in retrospect, but it's so unlike me.

    Thank you for taking the time to share your experience with me. You help me see light at the end of this horrid black tunnel. ....But seven months???

    I can do it. After all, I've stumbled along this far and I Am Woman. roar.

  4. Mikie

    Mikie Moderator

    Paul Cheney, M.D., on SSRIs and Stimulants for Chronic Fatigue Syndrome: Frying the Brain?


    By Carol Sieverling
    Editor’s Note: This information is based on tapes of Carol Sieverling’s October 2000 patient visit with Dr. Cheney. He gave permission to share this information, but has not reviewed or edited it.

    Dr. Cheney recently came across some information regarding the dangers of Selective Serotonin Reuptake Inhibitors (SSRIs), such as Prozac, Zoloft and Paxil, and stimulants like Ritalin and Provigil. During office visits, Dr. Cheney shows patients the book Prozac Backlash: Overcoming the Dangers of Prozac, Zoloft, Paxil and Other Antidepressants by Joseph Glenmullen, M.D., a psychiatrist at Harvard Medical School. It includes endorsements from other Ivy League psychiatrists. Cheney calls the implications of this book "staggering."

    When talking with patients, Cheney usually opens the book to a picture of a monkey's brain before and after it received a very potent SSRI. The "before" photo shows a dark background filled with fine white lines and white blobs, healthy neurons. The "after" photo is very dark, only a few white lines and blobs remain. Most of the brain cells had been "fried."

    SSRIs and stimulants work by increasing the firing of neurons. While this often has great benefits in the short term, doctors are now realizing that long term use "fries" brain cells. The body views any neuron that fires excessively over time as damaged, and destroys it.

    SSRIs and stimulants, taken over a period of 10 years or so, can lead to a loss of brain cells, causing neurodegenerative disorders. Many doctors have recently seen a sudden increase in patients with neurological symptoms, and most have been on Prozac, or a similar drug, for about 10 years. Cheney is seeing this in his own practice.

    During office visits, Cheney also shows patients a copy of the May 22, 2000 issue of Newsweek with Michael J. Fox on the cover. It has an excellent article on Parkinson's Disease, a condition that involves a loss of neurons in the area associated with motor control. Parkinson's drugs stimulate the remaining neurons to "perform heroically," firing excessively. However, the article notes that while benefits are seen initially, neurological symptoms get much worse at the three to five-year point. Patients experience wild involuntary movements, etc. These drugs, though helpful in the short term, actually speed up the degenerative process.

    What mechanisms are at work causing neurons to be "fried?" SSRIs are often prescribed for depression, which involves a lack of serotonin. Serotonin is a neurotransmitter, a chemical messenger. One neuron releases a burst of it into the intersynaptic cleft, (the gap between neurons). The serotonin is then taken up by special receptors in the adjacent neuron. Thus a message is sent from one neuron to another, with serotonin carrying the message across the gap. Excess serotonin is cleared away before a new message is sent. A "reuptake channel" in one neuron vacuums up the left over serotonin.

    SSRIs are designed to address a lack of serotonin by blocking the reuptake channel from vacuuming up excess serotonin. While this allows more serotonin to connect with the receptors, often too much is left floating in the intersynaptic cleft. The only way the body can get rid of this excess serotonin is to oxidize it. Unfortunately, this turns it into a toxic compound that, over time, kills both the sending and receiving neurons.

    Cheney stated, "What starts out as an attempt to increase serotonin and reduce symptoms ends up with the destruction of the serotonergic system itself. It takes about a decade, more in some, less in others.

    Now when the serotonergic nerves are dead, you start getting these motor neuron problems, which is what we're seeing." Cheney commented, "You know what a lot of doctors (who do not understand CFIDS) are doing? They're saying 'Well, let's just give them an antidepressant'. And they are frying their (patients') brains and they don't even know it. In fact, a CFIDS patient on one of these drugs fries their brain even faster than a non-CFIDS person." (See the article on Klonopin for an explanation.)

    Cheney went on to say, "The other way some people with CFIDS are going is stimulating the brain, using drugs like Ritalin or Provigil. They do the same thing - they fry the brain. They cause neurons to fire at lower stimulus by lowering the firing threshold. All stimulants are dangerous, especially over the long haul. I'm not saying that you might not find them useful in the short-term. But over the long term, the physiology demands that neurons that fire excessively be killed."

    Cheney strongly urges anyone taking antidepressants or stimulants to read Glenmullen's book, which lists safe alternatives to SSRIs.

    © 2002 Carol Sieverling. Reprinted with permission.

    Related Cheney Article:
    Dr. Paul Cheney Discusses the Benefits of Klonopin

  5. Marta608

    Marta608 Member

    Yes, thank you, Mikie. It was that article that first made me concerned about taking an AD. Yet even on this site, as I read the posts, many are still taking them.

    And so I wonder, even as I know that we all react differently, according to our own physiological makeup, if the majority of doctors still don't realize the hazards of ADs for CFS, or if Cheney was mistaken.

    Or maybe it's OK until you stop. tiny attempt at humor.....

    I'd still appreciate hearing from people who take ADs for CFS and knowing if their health care provider acknowledges Cheney's findings. I'll be discussing it with my doctor late this afternoon and will report tomorrow anything of interest. IF people are even curious. Perhaps everyone is comfortable with their own situation.

  6. bpmwriter

    bpmwriter New Member

    i've always been a big advocate for ssri's for those that need them. at the same time, i did experience a bit of a backlash the first time i ever went off lexapro. it wasn't the usual discontinuation syndrome. in fact, weaning down was cake. it came about a month later as a stomach-churning emotional storm. fortunately, it didn't last long, but my personal theory is that the ssri's do create an emotional backlog of sorts. those emotions have to get out one way or the other! for me, this brief period of displeasure was worth the benefit i derived, but everyone has to perform their own cost/benefit analysis.

  7. Marta608

    Marta608 Member

    Hmmmm, it didn't feel as if what I experienced and am still experiencing to a great degree after discontinuing the AD was an emotional backlog but rather an alarming change in my brain chemistry. But I wouldn't rule it out. I'll think more about it when I can.

    Thanks, Eddie.

  8. Marta608

    Marta608 Member

    Gigi, I'm still surrounded by them...

    Seriously, I was unable to nap yesterday because of some work being done in my yard. Not napping is a real problem for me because then I sleep very little at night. THUS a poop head kind of day today. (Yes, it was funny although I felt that I'd regressed to approximately kindergarten.)

    Adderal..... Of course my feeling about other people is that, if it works, go for it. It's only my own situations that I question. Yes, Celexa did help me, I'm sure of it now, compared to this blinding fatigue I can't seem to lose, but I'm unsure about taking it again - as I've iterated and REiterated here already. What if I had to stop taking it? Good Lord I don't know that I could go through that again. As you can tell, anxiety is part of my list of symptoms and this is beginning to sound much like a whine.... Well, believe it and bring out the cheese.

    Good luck with the Adderal. I'll keep track of how you do but I'm certain that if B-12 makes me fly, Adderal would not work for me.

  9. Mikie

    Mikie Moderator

    I think too many docs are too quick to write out prescriptions for heavy hitter drugs without knowing much more than what the pharmaceutical reps tell them. I think there is a place for AD's and stimulants and, like with every drug, we have to weight the potential risks versus the potential benefits and make as informed a decision as we can. It's a crap shoot because no one knows what decades and decades of using drugs which alter brain chemistry will end up doing.

    I take Klonopin and it is also a heavy hitter drug. I doubt I would have been able to make any progress without it because it stops the seizure activity and allows me to get good quality sleep. As I improve, I am trying to wean off of it but if I find I still need it, I will take it and hope that it doesn't case me problems down the road.

    Sometimes I feel as though we are damned if we do and damned if we don't. We often have to select the lesser of two evils. I respect Dr. Cheney's opinion a lot because he's devoted his life to treating CFIDS, making tremendous personal sacrifices along the way; however, he is just one doc with one opinion. In the end, all we can do is research on our own and make our own decisions.

    Love, Mikie
  10. Marta608

    Marta608 Member

    Yes, as lamotta said, we need to weigh (what we know to be) the consequences. But I'll tell you right now, if there's any way to get me on my feet again without an AD, I'm doing it.

    Mikie, you've had no hair loss with Klonopin? I did so, vain me, I quit taking it. At least I think that's what was causing the hair loss... Who knows?

    Thanks again for your time.

    And speaking of time, I just found out that today is Tuesday, not Wednesday. My doctor's appointment isn't until tomorrow late afternoon. At least I gained a day.

    I saw an ad for what looked like a wall clock only it told the days of the week. I'm seriously considering one.

  11. Mikie

    Mikie Moderator

    No, if anything, my nails and hair are healthier. Only thing I have is really dry skin. My doc keeps an eye on my thyroid, so I don't know why. Maybe it's from living in CO and being a sun worshiper in my youth.

    Is hair loss a side effect of Klonopin? Yikes!

    Love, Mikie
  12. Marta608

    Marta608 Member

    Mikie, yes, hair loss is a possible side-effect of Klonopin but if it's not happening to you that's wonderful. On the other hand, if Klonopin is part of your reduction of stress symptoms, it would stand to reason that your hair and nails would be more healthy. Stress, as you know, is hard on us. Understatement.

    I had an odd thought - not unusual for me these days - but what if our bodies, being the very individual wonders they are, are even more fantastic than we know. What if "side effects" are our particular body's way of saying "won't work for us"? That would explain why some things work for some people and not for others.

    Or not.

  13. Mikie

    Mikie Moderator

    An ABX which has saved lives for others almost put me in the ER. Since then, evidently, more harmful side effects have been identified. That's what is scary. This stuff doesn't always show up util it's too late.

    Our bodies are made to heal themselves but there are illnesses who will not allow this to happen. If there are too many defective genes or too many systems broken down, it can be impossible to heal without the help of medicines.

    When I was at my worst, I needed meds desperately. I do not believe I could have improved without them. Today, I re-evaluate everything I take and am trying to wean down on the Klonopin.

    I hope your hair will regrow. That's a tough side effect to have to deal with.

    Love, Mikie
  14. Marta608

    Marta608 Member

    For those who might be interested: I went to my doctor today and half-way through my list of current symptoms he began nodding his head: "What??", I said. "Severe depression", sez Him.


    I used to say to my wonderful staff at work: "Don't bring me problems; bring me solutions." Dr. Cheney has brought us problems, not solutions. Not that I blame him, mind you, but still.....

    My decision, based on my doc's advice is for now to go back on the Celexa. It had me living a sort-of life, after all, and until someone brings me real solution, it's what I have. I am reliant on me and need to be able to function. So, I'll begin the Celexa again tomorrow just because I have a life to be lived, AND I don't have a good alternative

    Meanwhile, I think we ALL should promise ourselves to give up the junk food, the sugar, the soda pop, the cigarettes, additives, the ... whatever we use to soothe/comfort ourselves in this DD, telling ourselves that, after all, we deserve it since we have so little else.... and see if we can't make a difference too. We write about "awareness" and wanting a cure; let's BE the cure as best as we know how. Let's, for goodness sake, do what we CAN do.


    Hugs to you all,
  15. Mikie

    Mikie Moderator

    This is only one of Dr. Cheney's articles. In many of them, he provides advice or potential solutions. One of his articles provides info about the seizure activity in our brains and how Klonopin helps to redice it. He has written about undenatured whey and how it helps increase glutathione.

    If you are interested, you can do a search in the Library here on Cheney and it will list the articles. He is a bit dramatic at times because he dictates his articles to a woman who types them up. Our speech is often more dramatic than how we write. I have found his articles very informative and have read most of them.

    Love, Mikie
  16. Marta608

    Marta608 Member

    Thanks, Mikie. Over the past 11 years I have read a lot of Dr. Cheney's articles. I seem only to end up getting confused with all the theories, do's and don'ts and spending money on things that don't work for me. I currently have a cupboard and refrigerator filled with supplements and herbs and have thrown out more than I have now.

    Has anyone that you know of tried Teitelbaum's protocols? I see on his website that a person can again, for a fair amount of money, fill out a questionaire and get back recommendations based on their particular symtoms. Perhaps I should post this question as a separate entity.

  17. Mikie

    Mikie Moderator

    You know I have a great deal of respect for Dr. Cheney and some of the other specialists who are so devoted to their patients, but I have only heard of one patient who felt "cured" by any of these docs.

    I think before we rush out and buy supplements, we need to have some kind of treatment plan. I have always believed that we need to treat our worst symptom first and then the next-worse symptoms, and so on. It worked very well for me and kept me focused and not scattered in all directions. I like what the FCC's are doing because they are so comprehensive and aggressive.

    At the time I started, there were no such places to turn except to docs like Cheney. While I respect him, he is very expensive and without a lot of results to look at, I just didn't see the point. I have, however, taken a lot of his advice and it has served me well. It remains to be seen whether the FCC's will produce results which warrant the high cost.

    I cannot tell you how many hours I spent researching but it paid off in treatments which have helped me progress. My docs and I have done it on the cheap, empirically, but that is a time-honored way to treat illness. Sleep and pain were my first two symptoms I needed to treat. I saw a pain specialist for opiods and then started the Guai Protocol. The Guai controls my pain most of the time now. The Klonopin, which Cheney recommends, has allowed me to get quality sleep.

    The fatigue was the next project and that's when I found out about chronic infections. As you know from my previous posts, this has been the most complex and lengthy part of my treatment. Again, it has paid off.

    Finally, the undenatured whey Cheney recommends has helped me to rebuild my immune system. Yes, it's expensive, as are the transfer factors, but for me, they have worked. The colostrum and probiotics also help me keep my immune system working better.

    There is no "one answer" for all of us, unfortunately. I wish there were. We each have to do our own research, prioritize, and work with our docs on a treatment plan. It takes a lot of time and a lot of effort. We do have an excellent resource in this board. Almost everything I have incorporated into my treatment plan is something I heard about here.

    If one has unlimited funds, I think seeing expensive experts is a good idea but most of us are not that lucky. The good news is that we can do it ourselves if we are willing to do the work. I know this isn't easy, especially with cognitive problems. I can't tell you how many research papers I had to read multiple times.

    Good luck to you with whatever avenue you decide to pursue.

    Love, Mikie
  18. Marta608

    Marta608 Member

    I've followed your progress for several years and you've done a wonderful job of finding what you need. I seem to be all over the place which, for me, is unusual since I'm usually a pretty focused person. (Focus? what is that?)

    My doctor's diagnosis yesterday was a disappointment as I believe that depression is the tail, not the dog but he was adament that he "just did what works". I guess that keeps it simple for him.

    I know without a doubt that I am "serotonin deprived", the one thing he and I agree on. I also suspect that the thyroiditis I had 17 years ago (as I noted on another post) was a big part of preparing me for this illness. Various physical problems like that added to just the "right" amount of mis-handled stress and BOOM. We live; we learn. Oh boy, do we learn.

    Today I did take a weeeeee amount of Celexa and have spent the day with a whopper of a headache. Celexa? With me, who knows?

    Thanks for your thoughts and well-wishes.

    [This Message was Edited on 05/04/2006]
  19. lenasvn

    lenasvn New Member

    my gutt instinct screams "NO" when it comes to taking SSRI's myself. I have been prescribed one (for the same old reason- female, multi symptoms= must be depressed), and I didn't take it yet, it's still on my counter,,,)

    Personally I don't think it's the answer for me, and maybe it's so that it will damage my system. Who knows? I've managed depressions with willpower for most of my life, and I rather be less drowsy and have more pain than the other way around when I care for my children by myself.

    The choice beteween 2 evils,,,yes!

    [This Message was Edited on 05/04/2006]
  20. Mikie

    Mikie Moderator

    We often have to choose the lesser of two evils. No treatment comes without side effects. All we can do is carefully weigh the two options and make the best informed choice we can, an informed choice. Problem is that we don't have perfect information. New drugs are sometimes removed because of severe side effects down the road after the damage has been done.

    I am a big fan of both lifestyle changes and traditional medicine and have used both. Every med carries a risk and I hope and pray that what I am doing today doesn't come back to bite me on the butt. The alternative is to have a life now which isn't worth living. Some choice!

    I do feel that there will be a cure but it will likely not be available within the next five to ten years. I will be happy if it comes in time to benefit my daughters, who both have FMS. It remains to be seen whether my grandson will show signs of our illnesses; I hope not.

    Love, Mikie