Do you ever wonder if the meds are making us worse?

Discussion in 'Fibromyalgia Main Forum' started by peachbunnee, Dec 18, 2005.

  1. peachbunnee

    peachbunnee New Member

    I have been on anti-depressants for many years - different ones at times - and I've tried life without them and it wasn't pretty - but I can't help but wonder if even though the drugs help my depression and pain, are they making me worse in other ways?

    Like is the brain fog and cognitive stuff because of the illness or is it the drugs?

    Am I hyper sensitive because my system is fried from drugs or is it the illness?

    I could go on....

    Please understand, I am in NO WAY questioning the validity of the illness. NOT AT ALL! I believe Fibro and CFS are very real. I just wonder sometimes what is the illness and what is possibly effects from the meds.

    Just thinking out loud....

  2. Jenni-2

    Jenni-2 New Member

    I understand what you are saying, but I just wanted to say that I did not take any anti-depressants until I was officially diagnosed with fm and cfs. I was then put on cymbalta. I guess to, it depends on each individual person. I am only 28 and have hurt since I was a teenager. I have just now stopped pretending that tomorrow might be better and finally told my DR. how bad I feel. I am just now learning about fm and cfs. It is comforting to see I'm not alone. Take care!!
  3. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I'm on borrowed time w/ my a.d. I've been murky headed every since I started it 6 yrs ago, and lately it's added anxiety if I don't take St. John's too, but it was a lifesaver, literally. I couldn't have taken another year of deep depression on top of FM.

    I've tried 3 major drug treatments for this disease, antibiotics, Nystatin, and Questran and all made me much worse and set me way back from recovery I'd accomplished naturally.

    I'm sticking to natural and not chancing any more setbacks.

  4. Roseblossom

    Roseblossom Member

    Yes, Peach, I've been thinking about this alot lately.

    I've had so much trouble with Effexor that I'm going to keep trying to get off it for good; and I'd tell anyone with our illness not to touch it.

    Zoloft worked for many years for depression, but when I got this CFS/Fibro Zoloft just wasn't working well anymore, so my doc put me on Effexor (without mentioning that the symptoms of withdrawl mimic CFS at its worst).

    Paxil increased my fatigue & made me sleep too much, plus annoying vertigo.

    I've just read a book called the Mood Cure, and it talks about the role of Amino Acids in regulating chemical neurotransmitters and hormones.

    Just taking a basic Essential Amino Acid supplement seems to be helping me very much!

    Let's keep talking about this - I think we may be on to something here...

    Best wishes,

  5. renae1979

    renae1979 New Member

    I agree that the meds make me worse!! I have FM/CFS and was diagnosed in 2004 after years of test after test, etc. I started taking anti-depressants in 1997. Once I was diagnosed, the circle of trying this med and then that med started and I felt terrible.

    So, I finally decided to get off all the meds (and pretty much all the supplements too) and just try to achieve a naturally healthy lifestyle for myself. It took like 9 months (of hell) to wean off the meds, but now that I'm not over-medicated I fee so much better!! It is amazing. My day-to-day symptoms are not nearly as bad and my flares aren't as horrible either.

    Now I am only on BC and Topamax for migraines. I take a multi-vitamin and that's it. I eat much healthier and I try to do gentle exercise (yoga and walking) as much as I am able. I also use a lot of stress-reduction techniques in my life and all of these things have made me feel 100% better than any of the meds have!! My only remaining issue is with my sleep and even that is improving.

    So, in my case I think that I was over-medicated and the meds were making me a LOT worse. But I will not try to claim that this is the case for everyone.
  6. bpmwriter

    bpmwriter New Member

    a new doc started me on (ultram) tramodol a couple weeks ago and at first, i was amazed at the pain relief. then came the constipation! oh lordy!! i've had bowel problems on and off throughout my illness so i thought i knew constipation, but i obviosuly had no idea because this is unreal. fiber 3x day, stool softeners; i'm still only going every 72 hours and my poo is like rocks.

    this analogy popped into my head this morning. imagine our body is a house and it's all lit up with pain. a lot of these meds are like going to the circuit breaker and shutting off the power to the whole place. we have less pain, but we're completely in the dark! then the plumbing stops working too!! who turned off the water?! it's like sacrificing the whole for the sake of a few parts.

    i'm sure the reason opiates (tramodol is an opiate-based med) make you constipated is because they totally deaden the peristaltic action of your colon. nothing's moving in there, it all just backs up like a sewer. so i have less pain for awhile only to wake up with colon cancer? no thanks.

    as for anti-depressants, i believe cheney's theory that over time you burn out the circuits upstairs. a lot of people feel they can't go off anti-dpressants because the depression will come storming back, when really, they've completely ruined the brain's ability to work on its own. so yes ... the depression will come back. the drug companies have just made you a lifelong customer just like the cigarette makers.

    oi, i'm scared for the whole planet.
  7. dunnlb

    dunnlb New Member

    I wouldn't have started and continued taking them if I thought they made me worse.

    Antidepressants have been a godsend to me. They have been prescribed since the 50's (I think) without any noticeable harm to people.

    I know that there would be no reason for me to live if I had to go back to the extreme anxious state I was in before AD's.
  8. Mikie

    Mikie Moderator

    If a person is suffering from clinical depression, AD's can be very helpful but they do carry risks. It can take time to find the right one and the side effects can be hard to deal with. I do not think AD's alone are sufficient for clinical depression and therapy is a must. The AD's can help in the beginning and give the patient a leg up until therapy starts to help.

    Too many docs are too eager to prescribe AD's for those of us with these illnesses. They believe these AD's are safely prescribed at lower doses for sleep, pain, and illness-related depression. Some have been helped by the AD's and some have had horrible experiences with them.

    The hypersensitivity is a symptom of our illnesses. Dr. Cheney believes we are in a chronic state of slight seizure. This can cause racing brain, anxiety/panic attacks, insomnia, sensory overload, muscle spasms, and tinnitus. SSRI, and likely SNRI, AD's can increase the seizure activity in the brain and one may have an increase in symptoms. All these med state in the patient info section to let one's doc know if one has seizures. Most of us don't know we live with a slight state of seizure because we don't have full blown seizures. We just have the symptoms related to seizure activity.

    Dr. Cheney has written two excellent articles, one on the benefits of Klonopin in treating our illnesses, and one on the dangers of using certain AD's and stimulants. I'll go to the Library here and post them both.

    I am not a medical professional so this is just my opinion, formed after doing a lot of research into our illnesses and treatments.

    Love, Mikie
  9. 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

  10. Mikie

    Mikie Moderator

    Dr. Paul Cheney Discusses the Benefits of Klonopin
    by Carol Sieverling


    Editor’s Note: The following is based on a recent interview conducted by Carol Sieverling with Dr. Paul R. Cheney, M.D., Ph.D., and the article "CFIDS Treatment: The Cheney Clinic’s Strategic Approach" (CFIDS Chronicle, Spring 1995). Dr. Cheney gave permission to share this information, but has not reviewed or edited it.

    Many CFIDS specialists prescribe the drug Klonopin. In the October 1999 issue of The Fibromyalgia Network, nine CFS/FM specialists summarized their most effective treatments, and six included Klonopin. Interestingly, the three who did not are primarily FM specialists.

    Dr. Cheney prescribes Klonopin to address a condition associated with CFIDS called "excitatory neurotoxicity." To explain this condition to patients, he draws a line with "seizure" on the far left and "coma" on the far right. A big dot in the middle represents where healthy people are when awake. A dot somewhat to the right of the middle indicates where healthy people are when asleep – slightly shifted toward coma. He highlights in red the left portion of the line, from seizure to the middle, and labels it "Neurotoxic State" (damaging to the brain). He highlights in blue the right portion of the line, from coma to the middle, and labels it "Healing State."

    In CFIDS, an ongoing injury to the brain shifts patients toward seizure. A dot to the left of the middle, marked "injury," represents the position of CFIDS patients. This puts us in the red "Neurotoxic" zone. When we shift toward seizure, we often experience "sensory overload." It’s as if our brain’s "radar" is too sensitive. Our neurons (nerve cells) are sensing stimuli and firing when they should not. This causes amplification of sensory input. Light, noise, motion and pain are all magnified. At the beginning of their illness, many patients report feeling exhausted, yet also strangely "wired." The "wired" feeling is the slight shift towards seizure that occurs as a result of the excitatory neurotoxicity.

    Cheney frequently uses the term "threshold potential" when discussing excitatory neurotoxicity. (Think of the threshold - bottom - of a doorway. The lower it is, the more accessible it is. When it is at floor level, everything can enter. When it is raised, access is restricted to taller people. If it is too high, no one can enter.) Threshold potential refers to how much stimulus it takes to make neurons fire. If the threshold potential is too low, even slight stimulation is "allowed to enter" and is detected by the neurons. This causes the neurons to fire, resulting in sensory overload. If the threshold is dropped to nothing, all stimuli get through and the neurons fire continuously, resulting in a seizure. If the threshold is raised, only stronger stimuli can make neurons fire. A healthy person’s threshold potential naturally rises at bedtime, promoting sleep. If the threshold potential is too high, you feel drugged or drowsy. If the threshold potential is raised extremely high, coma results.

    Two receptors in the brain, NMDA and GABA, determine the threshold potential. During the waking hours of a healthy person, NMDA and GABA should be equally active. This balances the person in the middle of the seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA increases, one moves toward seizure. If GABA increases, one moves toward coma.

    In CFIDS, NMDA is more activated than GABA, lowering the threshold potential. This causes neurons to fire with very little stimulation, resulting in sensory overload. This condition of excitatory neurotoxicity is dangerous. Dr. Cheney emphasizes that in an attempt to protect itself, the body will eventually kill neurons that fire excessively. He states that brain cell loss can result if this condition isn’t addressed.

    How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheney’s most effective drug for CFIDS over the years. He believes that Klonopin and the supplement magnesium may be two of the most important treatments for CFIDS patients because of their neuroprotective qualities. He recommends two or more 0.5 mg tablets of Klonopin at night. Paradoxically, very small doses (usually a quarter to a half a tablet) in the morning and mid-afternoon improve cognitive function and energy. If the daytime dose is low enough, you’ll experience greater clarity and think better. If the daytime dose is too high, you’ll become drowsy. Adjust your dose for maximum benefit, taking as much as possible without drowsiness. Adjust the morning dose first, then take the same amount mid-afternoon if needed, then take three to four times the morning dose at bedtime. Dr. Cheney recommends doubling the dose during severe relapses.

    Dr. Cheney most frequently prescribes the combination of Klonopin and Doxepin, along with the supplement "Magnesium Glycinate Forte." Magnesium Glycinate alone is a good choice for the more budget minded( sells it as "Magnesium Plus".) A common dosage of magnesium is 200 mgs at bedtime. Too much magnesium can cause diarrhea, though glycinate is usually the best tolerated form.

    Cheney prescribes Doxepin in the form of a commercial elixir (10mg/ml). At low doses, this tricyclic antidepressant acts as a very potent antihistamine and immune modulator. Doxepin acts synergistically with Klonopin to assist sleep, and may improve pain. Patients tend to be very sensitive to Doxepin, which can cause morning fog and fatigue if the dose is too high (5 to 10 mg or higher). He recommends starting at two drops a night and gradually increasing the dose until "morning fog" becomes a problem. Most patients can’t tolerate more than half a cc.

    On a handout entitled "Neuroprotection via Threshold Potentials," Cheney lists six substances that can protect the brain. Under the category "NMDA Blockers" Cheney lists:

    1. Parenteral magnesium and taurine (intramuscular injections of magnesium and taurine, usually given with procaine) 2. Histamine blockers (Doxepin Elixir) Under the category "GABA Agonists" (increases GABA) Cheney lists: 3. Klonopin 4. Neurontin 5. Kava Kava 6. Valerian Root

    Klonopin is taken "day and night"; Neurontin "night, or day and night"; kava kava “daytime only”; and valerian “nighttime only.” The first four are by prescription, the last two are herbs. In my limited experience, only certain patients are put on magnesium/taurine injections, and then only for a limited period before switching to oral supplements.

    Many myths abound concerning Klonopin. When asked about these myths, Dr. Cheney shared the following information.


    When the generic Clonazepam came on the market, many patients switched to it because it was less expensive than Klonopin. Cheney then began hearing that most patients had to take more Clonazepam to get the same effect. Generics aren’t exactly identical to the original products, and with most drugs the slight variations don’t matter. However, most CFIDS patients can tell the difference between Klonopin and its generic form, Clonazepam. Most find Klonopin to be more effective.


    Dr. Cheney was adamant that Klonopin is not addictive. In treating thousands of patients, he has never seen a patient become addicted to Klonopin. He reviewed the definition of addiction, stating that it involves: (1) psychosocial disruption, (2) accelerated use, (3) inappropriate use, and (4) drug seeking behavior.

    Dr. Cheney said a case might be made that Klonopin is habituating. It’s true that it can’t be stopped suddenly. You must taper off of it gradually. However, he was cautious about even calling it habituating. The process of tapering off a drug is not the same thing as withdrawal, a term that implies addiction.

    Dr. Cheney said to keep in mind that Klonopin is given for a physiological problem – excitatory neurotoxicity. It’s prescribed to adjust the threshold potential: to keep neurons from firing inappropriately and being destroyed. He stressed that Klonopin should never be given unless you intend to raise the threshold potential. He stated, "Problems arise when you begin to use benzodiazapines for reasons other than threshold manipulation." However, CFIDS patients have a "threshold potential aberration" and need Klonopin (or something similar) to avoid brain injury. Dr. Cheney has never seen a recovered patient have difficulty coming off Klonopin. He stated, "When you no longer need the drug, coming off it is very easy."

    On the other hand, trouble arises when someone who still has an injured brain tries to come off Klonopin. It’s like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, "All hell breaks loose". However, it’s not because the drug is addicting, and it’s not withdrawal. The condition still exists, and the body lets you know it has a legitimate physical need for the drug. Cheney stated, "When a CFIDS patient who is still experiencing the underlying mechanisms of brain injury goes off Klonopin, there is a burst of excess neural firing and cell death. That’s the havoc we hear about that is mistakenly called withdrawal."


    Dr. Cheney said that he honestly doesn’t understand this concern. He believes Klonopin might disrupt the sleep of people who take it for conditions other than the threshold potential aberration found in CFIDS. He also acknowledged that if you are looking just for drugs to facilitate sleep, Klonopin is certainly not the first one to come to mind, nor should it be used to induce sleep in "ordinary" patients. It’s not a sleep drug per se. However, a large part of the sleep disorder of CFIDS is excitatory neurotoxicity and the resulting shift toward seizure. If you treat this condition with Klonopin, then you have treated a large part of the sleep disorder in CFIDS. Most importantly, he said he simply does not see stage 4 sleep disruption in his patients on Klonopin.

    Towards the end of this discussion on Klonopin, Cheney smiled, and remarked, "But suppose I’m wrong about the brain injury and the threshold potential aberration and the shift toward seizure? What if I’m wrong about your need for Klonopin? I’m absolutely sure I’m right, but what’s the worst case scenario? Do you know what long-term studies on Klonopin have shown? Reduced incidence of Alzheimer’s Disease. Alzheimer’s Disease is a complicated and convoluted way of knocking out your neurons, and Klonopin protects your neurons. Now it’s believed that Klonopin didn’t actually stop Alzheimer’s. It just delayed its onset so long that everyone died of something else before they ever got it - which is to say you won’t get Alzheimer’s. You’ll die of something else first."

    The last question Cheney addressed concerned the dose: what happens if the dose is too high? He said the only down side was that if you took a little too much (we are not talking overdose here) it would shift you toward coma on the continuum. It would shut your brain down to some degree, and thus impact your ability to function. This is inconvenient, but it’s not harmful. In fact, it shifts you into the "healing state" on the continuum. You may feel like a zombie, but your brain is protected and your neurons are not getting fried. However, not being able to function isn’t an option for most of us, so we need to find the maximum dose that doesn’t make us drowsy.

    Dr. Cheney emphasized that Klonopin, Doxepin, and magnesium are very, very good at protecting the brain from cell death due to excess firing. However, they can’t stop the underlying mechanisms of CFIDS that are injuring the brain in the first place.

    Though it can’t stop the underlying mechanisms causing the injury, Klonopin can protect your brain and keep your neurons from being destroyed. Then, as Cheney put it, "When you come out on the other side of this, you’ll have more of your brain left."

  11. minimonkey

    minimonkey New Member

    Actually, SSRIs do NOT cause more neural firing --- what they do is slow the re-uptake of serotonin (meaning selectively blocking some of the excessive receptors) thereby increasing the amount of free serotonin your brain has available.

    I'd take the above articles with a huge grain of salt, myself.
  12. Mikie

    Mikie Moderator

    The increase in seizure activity is not directly cuased by the drugs. Still, the effect can be the same.

    Dr. Cheney, while being one of the world's foremost experts in CFIDS, is just one doc and not everyone agrees with him. Also, he tends to be a bit dramatic. He does not write these articles; he dictates to the woman who produces them. I think we all tend to be a bit more animated in speaking.

    Still, the patient info does warn about taking these meds if one suffers seizures. One would have to agree that if there is seizure activity of any kind, these drugs would not be a good idea. That so many of us get relief from the symptoms of the slight seizure state by taking antiseizure meds is a pretty good indication that Cheney is onto something.

    I would welcome any professional articles which show that SSRI's, SNRI's, and stimulants do not exacerbate the seizure state. We need all the info we can get to make informed decisions.

    Love, Mikie
  13. bpmwriter

    bpmwriter New Member

    it would seem to me that if an ssri is blocking excessive receptors, then the receptors in action are working twice as hard, yes? this isn't technically excess firing, it's just burning out the receptors that are working overtime.

  14. neeter1

    neeter1 New Member

    Was on Zoloft, amytriptillin,neurotin and several others..weaned myself off and I FEEL SO MUCH BETTER. Not hazy as much, a little more energy..I take pain pills much less now. I don't recommend this to everyone..discuss with doc first. I also did a boyfriendectomy and my stress level dropped almost 100 percent!! HA!
  15. renae1979

    renae1979 New Member

    LOL! I like that!

    Reducing stress levels does make such a HUGE difference!
  16. peachbunnee

    peachbunnee New Member

    I think this is an interesting conversation.

    The "boyfriendectomy" was quite funny! :)

    Let's keep talking! :)

  17. laura81655

    laura81655 New Member

    How to treat CFS/FMS. There is no definitive test out there yet. We are all treated by a collection of symptoms. We have to remember, "what works for one may not work for another." I have read on this board how SSRI's, SSNRI's have helped some and for others it's like taking poison!

    I just wish one day that the doctor's will be able to get on the SAME PAGE when trying to treat us. I think that is why so many of us are confused, depressed about where to turn sometimes.

  18. KelB

    KelB New Member

    I don't take any meds and I still have days where I can't spell my own name right or find my way home from the shops!

    I took a low dose anti-depressant for about a month earlier this year, to help me sleep. However I didn't feel that it gave me sufficient benefit to continue and the GP agreed that I should stop taking it. I didn't notice any difference in my cognitive problems before, during or after. In fact I didn't get any discernible side-effects.

    Could be that others react badly to their meds, but you can rule them out in my case.
  19. Roseblossom

    Roseblossom Member

    This is great - you guys are bolstering my resolve to get myself off of Effexor. I'm going to tough it out after the holidays.

    neeter, you lost 170 pounds of ugly fat, eh? heehee... nice going!

    I wonder if in 10 or 20 years there are going to be huge lawsuits against all the drug companies and doctors foisting these "magic bullet" pills on we who are so desperate for relief, like there was with early birth control pills and vioxx and thalidomide and breast implants.

  20. peachbunnee

    peachbunnee New Member

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