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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. CJB

    CJB Senior Member

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    There are so few drugs/therapies I've tried that have helped and Klonopin helped a LOT. Obviously, after reading this thread, I'm tapering off. And I wonder how many forum members/readers were scared into stopping cold turkey which sounds like it can be truly dangerous.

    Benzos have been around a long time and we know a lot about them. My doctor has trialed me on many of the SSRIs and newer classes of drugs that are supposed to help with sleep, pain, etc. They are horrible for me. No benefits and dreadful side effects.

    It's really painful to see this article and Gabby's story giving more doctors an excuse just to not prescribe drugs that are working for some of us. I read a story about one patient here who takes morphine. If I had a prescription for morphine, I'm sure I wouldn't need benzos. But I have yet to find a doctor who will prescribe any pain meds for ME/CFS, let alone morphine. If I was getting relief from ANYWHERE else, I wouldn't be taking benzos.

    Here's how it goes. Over=exertion = bad sleep = pain = more bad sleep = pain + depression = more bad sleep.

    Klonopin breaks the cycle. It relaxes my muscles enough so that they don't feel like they're trying to pull themselves off the bone. The way Klonopin makes me feel, it's not hard to believe there is some protective action during the really severe times.

    I will be interested to hear how the survey results turn out. And shame on any doctors who use one person's response as a blanket excuse not to prescribe this drug.

    jmells, it's not hostility, it's fear. Having found something that works, I'm afraid articles like this will cause doctors to be advised not to prescribe it because of one person's rather dramatic story of a health crisis that included Klonopin.
     
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I agree with Sushi, I no longer have a problem with CFS. There are things that have helped many people. My POTS (Autonomic Neuropathy) is even improving.
     
  3. CJB

    CJB Senior Member

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    That's been my experience as well -- not being personally harrassed, because I don't post on those threads to avoid it. There are a few members who have had bad experiences with Klonopin, who are loud and vocal and assume everyone will react as they did. They shout down anyone who has benefitted. I was shocked to hear Cort say that he thought the negative aspects of the drug were underrepresented on the forum.

    Just a thought for those of you in the US. TALK WITH YOUR PHARMACIST about every new prescription you're taking. They are highly knowledgeable and are most happy to share what they know. They are the true experts when it comes to drugs, how to take them and interactions, side effects and signs of dependency. They are under-utilized for this purpose.

    And I think it's always a bad idea to turn over responsibility for any aspect of your life to someone else. Doctors are human beings with all of the attendant weaknesses, biases and imperfections. Not questioning them and giving them authority over your health is always a bad idea. Unfortunately, many of us don't have the ability to advocate well for ourselves. I usually need someone to go to the doctor with me because the effort of getting there usually leaves me just this side of incoherent (with or without klonopin:))
     
    beaker likes this.
  4. CJB

    CJB Senior Member

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    Sorry, Sallysb, I don't know what Sushi said that you're agreeing with.

    I hope you will start a thread telling us how you healed.
     
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I already have a thread about that.

    Sushi said treatments have helped some.

    There are some of us doing very well.
     
  6. CJB

    CJB Senior Member

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    Would you mind directing us to your thread?
     
  7. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    It is called Sally's supplements. I have it bookmarked, but I am on my IPad right now.
     
  8. taniaaust1

    taniaaust1

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    Thought I'd quote that as I think that advice is so important to all.
     
    satoshikasumi likes this.
  9. taniaaust1

    taniaaust1

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    Sth Australia
  10. satoshikasumi

    satoshikasumi Senior Member

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    Mishmash is not grasping the fact that there are treatments out there that have some efficacy, but the powerful members of society have made a decision that ME/CFS patients are not deserving of these treatments because they are too expensive and the disease is "trivial".

    Fewer than 1000 patients in the world have had the opportunity to try Ampligen, which was invented in the late 1970s. I am one of the lucky few.

    There are at least 800,000 debilitated by ME/CFS in the United States and as many as 17,000,000 patients worldwide. What gives?
     
    heapsreal likes this.
  11. K2 for Hope

    K2 for Hope ALways Hoping

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    Thanks to all who have contributed their stories, good or bad, on the use of benzo's and issues on withdrawals for ME/CFS patients.

    Also, thanks for the How-to's, if someone were to want to detox from benzo's for whatever reason.
     
  12. MishMash

    MishMash

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    hi Cort,
    I think you should consider doing a mini-feature about the future of social security disabililty insurance. I've heard a lot of very dire talk in the news about cutting the rapid rate of increase in awarding SSDI to disabled people. I think it urgently relates to the topic of this post.

    More than 15 years ago, when I used to go to the CFS support group meetings, the most common topic of advice and discussion was the best strategy to get SSDI. The newcomers to the meetings were both married, unmarried, currrently working, unemployed, former highly successful, of routine backgrounds, recently diagnosed, and long time sufferers.

    The advice most often given them was go to a particular lawyer, and expect to get rejected at least twice, sometimes three times. Then you would have a good chance. They would celebrate after getting it, and it was great cause for relief.

    I wish I weren't speaking the truth, but as the next President and congress come into session, SSDI is really going to be on the chopping block. I think alot of deserving PWCs are going to find themselves in panic mode. They wil be living with family or possibly living in a van down by the river. And the rate of increase in patients, I believe, is going up. Probably for the same reasons other rheumatoid illnesses are increasing, such as MS, lupus, diabetes 1, etc.

    I have ranted in probably overly strong terms about the effectiveness of Klonopin for treating the symptoms of ME/CFS in most people. When a PWC shows up at a doctor's office and is paternalistically told he can't have any narcotics or opiates, the doctor should really understand what might be at stake.

    That patient is dangling over a bottomless pit. In coming years there may be NO SSDI to fall back on. This country is in debt between 16 and 50 trillion, depending on the analysis. Instead of moralizing, or cowering because of rare bad reactions, the CFS doctor community really should be looking or ways to keep that patient at least partly active and employed. Uncle Sam may not be there the way he has been in the past. Use of controversial (to say the least) drugs like Klonopin, other benzos, opiates and maybe even medical marijuana, to keep people off the government dole should be considered in coming years.
     
  13. Cort

    Cort Phoenix Rising Founder

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    I think you missed what I said. ..I did not say the negative aspects of Klonopin were under-represented on the Forum - I'm sure they are very well represented on the Forum. I said the most-visited pages that show up in search engines such as the page on Phoenix Rising (I provided the link) and the Cheney article found elsewhere o did not provide both sides of the picture.....
     
  14. Cort

    Cort Phoenix Rising Founder

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    Maybe we can work on that together...I would need some help with that.
     
  15. Ocean

    Ocean Senior Member

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    I agree. I really don't get how someone sharing their reality/their experience is a bad thing. I don't believe in the silencing of people because it supposedly will make such a such treatment or such and such drug look bad. People are sharing what happened to them. Others can choose to take from that what they wish and do with the info as they wish or not. People can use their own minds to decide if others' experiences apply to them or not.

    Neilk, I'm glad to hear you are off the Klonopin. I remember when you were posting a bit about it and the troubles you were having. Very good news to hear this resolution.
     
    Nielk likes this.
  16. grosolo

    grosolo

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    here here.
     
  17. Johannes Starke

    Johannes Starke

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    Thank you for this fantastic blog. I couldn't have wished for more when I was googling about possible side effects of Klonopin in ME/CFS. Thank you, Cort, for the balanced view of the drug and including input from my favorite ME/CFS doctors.
     
  18. K- KID

    K- KID

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    I know this an old thread but is there still a topic going on recently on BENZO withdrawls? Thanks !
     
  19. Braz

    Braz

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    I like that equation. Even though I have never been diagnosed with CFS/ME, I can relate.
    However, my cause in that cycle is the Klonopin/clonazepam ! And the general bad state I´m in makes discontinuing the drug much harder, if not impossible ! But at this point, the drug has become toxic.

    My personal view is that people should be allowed to take the drug. But it´s really an epilepsy drug, even though it is used off label and for other indications in some countries.
    That drug is much more potent than most people are aware of, there is a lot that is not known about what it actually does. I consider this drug one of the most dangerous drugs that exist.
    Unfortunately, most people are not informed of the potential risks. Of course, only a small minority has to deal with the worst of the worst.
     
  20. seth

    seth

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    Don't know if anyone is still monitoring or responding to this old thread. I happen to chance upon Gabby's story today at the end of 2015, when looking for Klonopin for CFS pros/cons on Google.

    The thing that stands out to me about her story is that, after her 8 year Klonopin buildup and hellish coming-off, she claims that she is no longer bed-bound or in constant pain, and feels better with a new chance on life. And yet she was bed-bound and experiencing terrible symptoms BEFORE she started the Klonopin; indeed that's why it was originally prescribed. But if she could experience feeling much better and un-bed-bound without Klonopin, how come she didn't do that before starting? In other words, with the Klonopin gone, what's making her so much more symptom-free now, and whatever that "remedy" is, was it available before she started the Klonopin?
    And although Klonopin can make some people feel hellish in withdrawal & after-effect, but they were feeling absolutely hellish before they started taking it and nothing else but Klonopin worked, why do so many report about the hell Klonopin puts them through when removed, as if they forgot that their pre-Klonopin hell was also total hell?
     

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