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The Best Drug for ME/CFS? The Other Side of Klonopin: A Patient's Story and A Survey

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 5, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Dreambirdie

    Dreambirdie work in progress

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    So glad to hear that Gabby (Nielk) recovered from her withdrawal ordeal on the Klonopin. May this be a lesson for all who think these drugs are safe options for all CFS patients.

    It baffles me completely how doctors consider prescribing such toxic addictive drugs like the benzos, for their patients to take on a regular basis. Taking them is like playing Russian roulette with your brain. I have taken both Klonopin and Ativan, each for less than a week. They threw me into a mood altering circus of negative side effects, exacerbated all my usual CFS symptoms, and lingered for almost a week after I stopped taking them---and this was just from 3 doses/3 days in a row each time. That was enough to convince me that these drugs should be used only in a crisis and as a last resort.
  3. Nielk

    Nielk

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    Hi Dreambirdie,

    I'm sorry that you had such a bad experience with Klonopin as well. I think as a CFS population we are generally more sensitive to medications than the population at large and therefore need to be even more careful with what we are prescribed.
  4. Cort

    Cort Phoenix Rising Founder

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    I caught a thread on the Forums where patients were taking a half or a quarter of the lowest dose possible of Klonopin :)...Dr. Bateman also referred to the 'central sensitivity' present in this disorder. I think this is a key element and I wish somebody could figure it out. I also wonder if its present in other disorders (?).
  5. beaker

    beaker CFS/ME 1986

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    some clarifications please on the survey ( I'll wait to take til you answer) :
    on the "other benzos" page. do you wish to include the atypicals ( ambien, lunesta, etc... ) ?
    what if one has tried numerous other benzos ? the answers to the follow ups would be very different ( how long, how much, etc... )

    Perhaps it would be also helpful to note drug "holidays" and what happened. Dosages and time frames on your survey might be different for before and after.
  6. Cort

    Cort Phoenix Rising Founder

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    Thanks Beaker - I'd like to stay away from atypicals...I did think about what if someone had tried numerous other benzo's - I think I will add another section for that - so you can at least do two....
  7. Cort

    Cort Phoenix Rising Founder

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    I added another section - you can now review Klonopin plus two more benzodiazepines.
  8. beaker

    beaker CFS/ME 1986

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    Adding space for more then one helps. But which two to chose ?<gets out coin> ;) LOL. I think if someone's been around long enough they've tried just about everything.....

    Thanks for the clarification on the atypicals -- they were on the link you had to the list of benzos, so it was hard to tell if you meant to include them.
  9. satoshikasumi

    satoshikasumi Senior Member

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    While it has been commonly used in CFS, there have been no controlled studies of klonopin in this disease. It is not known what the most effective dose is. It probably works by improving autonomic dysfunction and sensory overload. The symptoms of klonopin withdrawal in normal people are similar to the neurological symptoms of CFS.

    However, it has been studied in panic disorder at up to 4mg/day and in epilepsy at up to 20mg/day. So it is not clear that 3mg is an excessive dose per se.

    The studies on panic disorder indicate that a major risk of klonopin at all doses is depression, with the patients who got the drug having six times the risk of depression compared to the placebo group. Depression alone could explain this person's worsening from klonopin.

    Also, the person in this story could have improved more for reasons other than stopping klonopin, because she did not just taper off, but went to addiction treatment. Addiction treatment always includes elements of CBT as part of the therapy, and there is some evidence that CBT decreases the reporting of CFS symptoms.
  10. Cort

    Cort Phoenix Rising Founder

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    One of the things that stuck for me was how much worse Gabby got over time....Ideas of suicide are apparently not uncommon in Benzodiazepine withdrawal syndrome and there was the high blood pressure and other symptoms. I believe up to 4mgs is recommended in bipolar disorder - so it can go higher but then again there's the hypersensitivity to drugs to deal with in ME/CFS and the 'central sensitivity' that Dr. Bateman referred to. I saw a thread on the Forums where people were taking very, very low doses of the drug.

    I think the point about behavioral therapies is a good one though. I saw a benzodiazepine withdrawl program which used meditation, yoga, CBT - about 10 different kinds of alternative therapies of that ilk to calm the autonomic nervous system down as withdrawal occurs. Dr. Freidberg has said doing these practices can help get patients off drugs.
  11. rlc

    rlc Senior Member

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    Hi all, General information on Klonopin can be found here http://www.drugs.com/klonopin.html

    Information on side effects of Klonopin can be found here http://www.drugs.com/sfx/klonopin-side-effects.html

    Klonopin interacts badly with 777 other different drugs see http://www.drugs.com/drug-interactions/clonazepam,klonopin.html

    If people are taking more than one prescription drug they can enter the names of the drugs on this site http://www.drugs.com/drug_interactions.html and it will tell them if there are any bad interactions between these medications. People can also enter most vitamin and mineral supplements and other supplements and herbs, and it will tell them if they react badly with other drugs they are taking.

    Doctors are notoriously bad at checking for drug interactions leading to massive problems see http://chronicfatigue.about.com/od/treatments/a/druginteract.htm

    Glad your feeling better Nielk, personally I do not understand why a doctor would use these kinds of medications to treat ME, they know that ME is a long term illness, and that the patients will build up a tolerance to the medication and have to take more, running the risk of side effects, and the patient will become addicted and if they every try to come off the drug they will go through hell. My opinion is it isn’t a wise choice for treatment unless it is very short term.

    All the best
  12. Hope123

    Hope123 Senior Member

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    I would be hesitant to think that Klonopin is the most commonly used drug in CFS unless there is data backing this point up. Many of the people I know with CFS are not taking this medication.

    Some of Klonopin's use might depend on when it was prescribed and the age of the clinician. Before the era of SSRIs and other sleep/ anxiety/ epilepsy medications, Klonopin was used a lot more but part of the impetus for developing these other meds were the side effects from Klonopin and other benzos. Klonopin is no longer consider a first-line drug for many conditions. Also, clinicians tend to use drugs they are more familiar with so if they trained in the past, they are more likely to use it than younger clinicians. I think if the Klonopin does not seem to be serving someone well or they are concerned about side effects, they might want to talk to their doc about other options as there might be newer drugs that work better.
  13. Cort

    Cort Phoenix Rising Founder

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    That question kind of begs for a survey...what are the most common drugs used in ME/CFS? That's a good question with the Stakeholders Meeting coming up.....Hmmmmm.......
  14. Nielk

    Nielk

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    It is true that, at the detox/rehab facility, I received many good services besides just medical detox from the drug. There were many group lectures and group meetings where they worked with us to teach us tools of how to manage life in a more effective way. In addition there was an intensive personal track where one is followed by a counselor, psychologist, psychiatrist, spiritual counselor and in my case a pain management counselor.

    I agree that all these services were tremendously beneficial to me but, it is also true that my very deep depression lifted even before all these services really kicked in.

    It is therefore obvious to me that this depression was a direct cause of my long term Klonopin use.

    What is amazing to me is that for the past 8 years I have been followed by three doctors who had the knowledge that I was taking Klonopin all along. They also knew about my depression and not one made the connection with the two. Moreover, towards the end, I brought up the fact that it might be caused by the Klonopin and one of my doctors consulted with a pharmacologist and came back with a negative answer.

    This is the reason that I decided to go public with my story. I am hoping to raise awareness about this risk. I might be in the minority of people who reacts this way but, I am not unique in my situation.
    taniaaust1 likes this.
  15. Cort

    Cort Phoenix Rising Founder

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    Here's a weird thing about benzodiazepine withdrawal syndrome - if you become tolerant, getting off benzo's can actually make the neurons more excitable - not less....which is one reason why, I suppose, practitioners focus on these stress reduction therapies.

    From Wikipedia..
    Benzodiazepines potentiate the action of the neurotransmitter GABA. When this potentiation is sustained by long-term use, neuroadaptations occur which result in decreased GABA activity and increased excitability of the glutamate system. When benzodiazepines are stopped, these neuroadaptations are "unmasked", leading to excitability of the nervous system and the appearance of withdrawal symptoms. Increased glutamate excitatory activity during withdrawal is believed to result in kindling phenomena.[82] Those who have a prior history of withdrawing from benzodiazepines are found to be less likely to succeed the next time around.[83] Repeated benzodiazepines withdrawals, like with alcohol withdrawal, may lead to sensitization or kindling of the CNS, possibly leading to worsening cognition and symptomatology and making each subsequent withdrawal period worse.[84][85][86]
  16. satoshikasumi

    satoshikasumi Senior Member

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    Cort, I think if you look at a list of benzo withdrawal symptoms, they are pretty similar to the neuro symptoms experienced by CFS patients, including brain fog, autonomic disturbances, word-finding problems, paresthesias.

    This could explain why klonopin can help some people, at least for a time. It also suggests that part of the disease process is a natural process that mimics the sensitization seen in withdrawal states, even if the patient has never used drugs. Maybe this is caused by cytokines? There is plenty of evidence that the sympathetic nervous system is always turned on.

    I have known other patients with CFS who were helped by stopping all benzos and sleep aids in a detox setting. The people I know also had a problem with comorbid depression. It is astonishing how often psychiatrists prescribe benzos to depressed patients and fail to recognize them as causing the disorder to get worse or failure to respond to antidepressants.
    Nielk likes this.
  17. Cort

    Cort Phoenix Rising Founder

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    I received an email from someone whose son did not fare well using Klonopin under Dr. Cheney's care: she agreed to share the email so long as her son's name was removed. (I called him "John'"



    (one document is linked on Phoenix Rising's Klonopin page as a guide to withdrawal)
  18. Cort

    Cort Phoenix Rising Founder

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    I was surprised by how familiar the benzodiazepine withdrawl symptoms were :).. The sensitivity to odors, lights, noises, etc really leapt out at me. I feel Dr. Cheney's description of what is happening in ME/CFS - the overstimulation present - fits very well for me...Obviously Klonopin helps some people with that - Gabby's own doctor - used it well and doesn't work for others - Gabby and 'John', for instance. I've always wanted to try Klonopin...I think I still would but at low doses and probably intermittently....
  19. Nielk

    Nielk

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    Cort,

    How is "John" doing now? Is he still on these meds? I hope not. I hope he is recieving help with this.
    If they need any advice, please give them my e-mail address.
  20. MishMash

    MishMash *****

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    Any physician who says he/she can successfully treat ME/CFS with "low dose naltrexone", supplements, yoga, etc, is either fool or a liar. Sorry to be so harsh, but this is the line you get after paying for Dr. Klimas's rather large, cash-only fee. Kudos to her for her incredible lab skills; but I don't see anything extraordinary in diagnostics going on there. I don't know how much Lapp charges, but from what I understand he hasn't healed anybody of their ME/CFS either. Maybe I'm wrong. If either doctor is against the use of benzodiazopines, then pray tell, give us an alternate drug that really works. There aren't many alternatives.

    Yes, the ant-anxiety drugs and the opiates were not designed for "long term use." But then again our bodies and our minds weren't designed to tolerate long-term ME/CFS symptology, right? The recent suicide of one of our better-known patient-readers might illustrate my point. So pick your poison. And by the way, I know plenty of people of who have gone psychotic on Lyrica, neurontin, and other anti-seizures, anti-psychotic medications. These are the "safe" ones, I presume. I'm sure Lapp would give you all that crap in bucketloads. Want to talk about needing a trip to the funny farm? Read some of these case histories.

    If you say anti-depressants help you, I can tell you that GlaxoSmithKline just got a $4 billion fine for, among many things, overstating the positive effects of the Paxil and Wellbutrin, as well as *understating* the noxious side effects of these drugs. So, again, where are all the safe, effective drugs for ME/CFS (since we now exclude klonopin)?

    I'm sorry about your experience with Klonopin, but I think you are very much the exception when it comes to benzodiazopines. I have been taking one form or the other of these drugs for seven years. I know that if I were ever forced to come off these drugs I would necessarily have to *taper off* and not quit cold turkey. That's just common sense. By publicizing your experiences in this way I think you just muddy the waters for the rest of us patients who are trying to get ordinary doctors to take us seriously.

    The bottom line for me is: If you truly believe ME/CFS is a chronic organic condition, and not some kind of depressive or imaginary state, then you (or your physician) would have to admit that real pallatives drugs are in order. And if you accept that it is a condition with *no known treatments* at this time, then only currently available pain-killer or sleep-inducing are in order to allow acceptable quality of life. Ms. Nielk is just one person who had a bad experience.

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