1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.
  1. arx

    arx Senior Member

    Messages:
    532
    Likes:
    138
    AFCFS

    You are right, there is great variation. Our neurotransmitters and our responses work differently. In my case, I have seen Diazepam and Clonazepam work very well for me when I initially started off with Fred's protocol. The mental agitation,insomnia and what seemed to me like nerve/muscle contractions were really helped by those. But when I started adb12 and carnitine, with ten times more symptoms and intensity of those symptoms because of the startup caused by those supplements, the benzos didn't work. There was no way to feel better. I think I posted the thread at that time only, and if you read the first post you will see what Fred has written about benzos,and I still couldn't understand what he means exactly.

    So during those months with adb12 and carnitine, I did not take benzos. The only thing that wanted me to take them was my previous experience which was good, but it wasn't working. Plus reading stories about how bad they are, and @Nielk's views on this thread only,I think, those things didn't me want to take it again.

    I was prescribed ten days back again for insomnia, and for 8 days I found some relief that I could say, fine I'll take them for a longer duration. But after leaving for two days and experiencing the madness, which I am betting that it is benzo withdrawal and/or anti-histamine reaction, I am stranded again. I just want to taper it off for now. I think a week would be enough. I don't want to be the angry pissed off man that is sitting writing this post right now. At least not for some time.
    MishMash likes this.
  2. arx

    arx Senior Member

    Messages:
    532
    Likes:
    138
    Also, there must be links between the Active B12 Protocol and experiences with benzos. Both affect neurotransmitters,particularly dopamine, as Fred has described. So during the entire course of the protocol which I tried till September, at some points the benzos worked, at some they didn't. Makes me thinking that one should NOT be on benzos while on these protocols. The protocol might want to make those damaged areas reactivated,which produces LOT of agitation, and the benzos might be making those same areas(in the limbic system/receptors/neurotransmitters/whatever...) deactivated. Even though there is some relief by these, they must be hampering the recovery process,I think.
  3. MishMash

    MishMash *****

    Messages:
    445
    Likes:
    479
    Georgia
    Arx,
    We are all so different, it really is hard to generalize. It makes giving advice to patients very very difficult, if you are a well-meaning doctor trying to alleviate suffering.

    My only experience with Temazepam (for sleep), is that it has improved sleep and seems to tamp down my out-of-control adrenal reactions. My fatigue and clarity are much improved when I take it. I am able to sleep, also, when I don't take it. Also, I have never had "withdrawal symptoms" during the day, when it is dissipating from my symptoms. Of course, absolultely never take Temazepam during the day.

    I will say that I have tried Benedryl many times to improve my sleep. It gives me the Robert Deniro complex also. Where you are rageful and hair-trigger angry at the world ("you talking to me!"). I actually didn't know this reaction existed years ago, and all the docs said it were telling me it's great for sleep. It's definitely a mood changer.

    Yes, to emphasize your previous point, experimenting with marijuana might provide some relief from symptoms. I had a friend who lived in Hawaii, and she was able to purchase medical marijuana. She said they were just as good as painkillers and benzos (for her illness, that is). The only downside is that the effect wears off very quickly.

    However, I am predicting, for the record, that when enough people in Colorado and Washington start smoking their reefer, after a few years you are going to hear testimonials that are identical to yours and Nielk's. People will complain that it permanently changed their brain receptors, and they were actually addicted, they were worse off than when the started. And the feds will step in to regulate it, if not ban it.
    AFCFS likes this.
  4. MishMash

    MishMash *****

    Messages:
    445
    Likes:
    479
    Georgia
    I have been taking Temazepam for seven years now. I have not experienced withdrawal symptoms during the day. Maybe if I take it for another 15 years, I'll get the anger management issues you discussed. Temazepam is a slow-release formulation. Maybe Klonopin is to fast-acting, and it bombards the brain too quickly. I don't know..

    I still can sleep without these meds, but it will be the odd-hours type ragged sleep that I had before I started taking this drug. So from my point of view, stopping the Temazepam would be a symbolic victory, because the same CFS symptoms would just take over my life again. And thankfully, I'm still working, so keeping those noxious symptoms at bay is the only thing that keeps me hanging on by my fingernails.

    I have to go back regularly to the see the internist for refills also. But the expense is only $20 per co-pay because I belong to a PPO. So I gladly pay it. If it makes the doc feel secure, then maybe I'll do it. I'm sorry your doc is charging $150/visit. I hope you aren't paying that in cash. That's too high.
  5. AFCFS

    AFCFS Senior Member

    Messages:
    312
    Likes:
    243
    NC
    I also found that Magnesium helped with anxiety in general and most symptoms associated with klonopin withdrawal. I think it can be a slippery slope because too much magnesium can be harmful and I understand that certain individuals with certain conditions should not take it in at all. There is this, from WebMD (best to read the whole thing):
    And then these form livestrong.com - How Much Magnesium Is Harmful? and The Dosage of Magnesium for Anxiety.

    Also this from Psychology Today: Magnesium and the Brain: The Original Chill Pill.

    I don't use much of it, or use it very often, but it has worked for me when I needed some "calm." Of course, people also like to debate what form of magnesium is best. I like Magnesium Orotate, but am sure others have their own preference - 11 Common Types of Magnesium Explained.

    I used to scoff at this type of treatment, but a few years ago I had terrible migraines after trying Pristiq (Desvenlafaxine). I ended up in the ER one night. I had no idea what the doc was doing, but later found out he had given me a Magnesium infusion via the IV. It had taken the pain away in about 20 minutes. I was truly amazed.

    I had presented this to a pdoc and he said it was either hog wash or placebo. I said that I did not care, because it worked. I think beaker has a good quote on his profile that I read:

    When the bird and the book disagree, always believe the bird.

    ~ John James Audobon
    MishMash and Nielk like this.
  6. MishMash

    MishMash *****

    Messages:
    445
    Likes:
    479
    Georgia
    Nielk,
    At the advice of one of the members of this forum, I went to the "benzowithdrawal" website and perused the various threads. Honestly, from all the addiction horror stories I have been reading here on PR, I expected the forums there to be absolutely jam-packed with people giving their nightmare accounts.

    If you look, the number is relatively small . Their membership population is a tiny percentage of the number of people on this site. And our lives have been shattered by a mysterious, neuroimmune illness entirely beyond our control. There are many thousands on PR, and hundreds on "benzowithdrawals".

    I didn't see any addiction stories originating in FM or ME/CFS. Many of posters on the "benzowithdrawal" website received their initial prescriptions for "generalized anxiety". Or to ameliorate the anxiety side-effects from taking SSRI anti-depressants. Additionally, I'm not certain that all such addicts are giving you the straight story; in that at least some got their benzos on the secondary market, or doctor-shopped, just looking to get high. Alas, Nielk, there are folks out there who are healthy, and just want to get high.

    So I think comparing our cohort to that bunch is a little bit like apples and oranges. I'm not sure how many of these folks don't have pre-existing pyschiatric conditions. This will set anybody up for substance abuse, of any kind (drugs, alcohol, painkillers, even marijuana).

    I don't doubt that you had the experience you did. Especially after 16 years of heavy use. But I think you might want to consider that you are an exception. There are many alcoholics, some in my extended family, who swear they became addicts with the first taste of beer in high school. I don't doubt them. But the rest of my family is able to drink one or two beers a day with addiction.

    And I have also noticed that recovered-alcoholics seem to project the dangers of potential alcoholism to every person who puts a glass of wine or beer to his or her lips. It is understandable. They were the exception, fell victim to an insidious addiction, and now expect everyone else will have the same reaction as they did.

    I think everybody appreciates your account, but you might be one-in-one-hundred, in terms of addictive response. There are also CFS victims who commit suicide as well. It is one disease that will deprive you of hope.

    Actually suicidal ideation among SSRI, anti-seizure, anti-psychotic users is also very high. The package inserts for each of those contains a warning about that. Taker of those meds are advised to "taper off" lest they kill themselves. So I think doctors withholding drugs like benzodizopine medications, in serious cases, is callus and insensitive.

    Also, I think it cannot be emphasized enough, not all of us are on disability, or have spouses working to support us financially. The folks most addled about the potential dangers of benzos seem to be those who have a secure future.

    I have saved all my test results and doctors findings in paper form. But I'm not sure I could qualify for disability. I need these meds to actually function at work every day. You, as one person, obviously, have no power to control drug policy, and how most docs treat patients.

    But it is very disconcerting when doctors assume a position of absolute risk aversion, and never give out drugs like benzodiazopines, for fear the one-in-one-hundred patient will complain about malpractice. This poisons the well for the rest of us still trying to make a go it, with a functioning life. You might as well put a skull-and-crossbones on the label in that case.
    AFCFS likes this.
  7. AFCFS

    AFCFS Senior Member

    Messages:
    312
    Likes:
    243
    NC
    This is great - glad to hear you are still able to work and would say that it is a smart move to do whatever to keep that going.
    Always something to look forward to :) - I do remember though at about my 5-7 year mark I was a big proselytizer for klonopin. I think I got quite a few people to seek scrips for it.
    Yours is pretty reasonable. The pdoc I mentioned was out of network and did not take insurance - big fish in a little pool - so it was cash until I found that I really did not care for him and others were available. I live about an hour from anything and an hour and a half from anything worthwhile, so in my initial foray in seeking medical advice, it appears I went in the wrong direction. I did meet my insurance deductible this year, so they will now likely reimburse for some of that, but the charge is ridiculous if you base it on results.
    MishMash likes this.
  8. MishMash

    MishMash *****

    Messages:
    445
    Likes:
    479
    Georgia
    Thanks for the good news!
    I only have four more years till retirement. So seven + four = an 11 year honeymoon period.

    Funny, I have been to a million docs. None has ever suggested Klonopin. In fact, before that I always assumed Klonopin was reserved for psychatric cases. Such as bipolar, personality disorder and those type of conditions.

    When I mentioned sleep issues to my doc (seven years ago) they put me on Ambien (awful side effects, makes you awake while supposedly sleeping) or Lunesta (works for six hours, metallic taste in mouth). It was the doc's suggestion that I try Temazepam. I had to go back every month to get a new prescription. Seemed responsible.

    I'm beginning to think that the genesis of all this benzo-addiction talk is that people have been taking exclusively Klonopin. Are there no Valium or Temazepam addicts among our readers? There must be a reader or two who started seeing unicorns and plasticine horses appearing on the shore.

    Temazepam is designed to be slow-acting, not a sudden rush. Ever since Mick Jagger wrote his little song, the doctors have been afraid to prescribe plain ol' Vallium or Temazepam. But maybe that was a mistake.
    AFCFS likes this.
  9. AFCFS

    AFCFS Senior Member

    Messages:
    312
    Likes:
    243
    NC
    I think that may be one of the issues. I was prescribed it initially for anxiety and it was nice that it helped with sleep. After the many years on it, I learned how to deal with much anxiety, although I think some anxiety is purely chemical and will likely not yield to life experience and some insight.

    And, eventually I did try the wonder drugs (for the the pharmaceutical companies) Ambien and Lunesta and had just about the exact same side effect you mentioned. The Ambien spray has got to be the worst; it tastes like an armpit smells. Klonopin seemed the lesser of evils at the time. I actually never heard of Temazepam before you mentioned it, but suspect cautiousness of most "dependency drugs" does have something to do with public/doctor perception, although not sure if Mick was specifically talking about Vallium or Temazepam in the song "Mother's Little Helper."- good lyrics though.

    Doctors are a bit whacky in any case; when I was looking for a pdoc about five years ago, after a move, I called one up (pdoc A) and explained I had some depression and anxiety issues and was on fluoxetine and klonopin - had been for 20+ years at the time. He was overly concerned about the klonopin (as he was also an "addictions specialist") - even though I had no history indicating abuse of it. I decided not to see him.

    In the other direction from home, I had called a pdoc (pdoc B) and he had no problem with prescribing it. I started to see him on a regular basis for depression and some anxiety (much likely from the klonopin tolerance and withdrawing during the day, and fluoxetine), but when when I presented the idea of going off the klonopin a year or so ago he insisted that a fast taper was fine. It was not, and he was indifferent about it, so I called back pdoc A in hopes that the "addictions specialist" would guide me down a good taper route.

    So, then I go to pdoc A and what does he do, but put me back on the klonopin because he said the taper was too fast and I needed to back up. By that time, I was a frazle and canceled with him after several sessions and went back to pdoc B, who was happy to have his klonopin dependent patient back. He used the side effects of a fast taper to justify that I really needed it - and him. I knew it not to be true, but also needed some time to recover.

    For me, and some others I think, you just do not taper and start back up; it really messes with things in the brain, in whatever population group we fall into, so it was months before I could sleep well, and there was any sense of stability again. So, there is the sleep issue, and then there are other factors at play for some. This time around, with a slow taper it can be a bit rough as mentioned but keeping the sleep cycles in order is extremely helpful. But, as we have seen, many different reactions and if it works for anyone that is a good thing.
    Just so no one feels left out, there is a Temazepam Withdrawal page on the non-benzodiazepines site. It looks eerily similar to the Withdrawal From Clonazepam (klonopin) page. In my opinion, they do get a bit engrossed in it there. I had looked at them last year and read through the entire Ashton Manual on benzo.org.uk. This year, just decided to do it, telling one doc, one family member, and then just getting on with it.

    Here is a BENZODIAZEPINE EQUIVALENTS TABLE with half-life and other info.
    - If they have, hope they post pictures, have not seen one in a long time - thought they might be extinct.:)
    MishMash likes this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,220
    Likes:
    4,524
    australia (brisbane)
    I think there must be something to the klonopin as well. My doc didnt seem interested in klonopin or xanax and said they are bad news but doesnt seem to phased with valium or the z drugs. The indications for klonopin here are for seizure disorders etc.
    MishMash and AFCFS like this.
  11. Mattman1

    Mattman1

    Messages:
    47
    Likes:
    23
    Temazepam is what I'm on now. If I had half a brain (make that a quarter) I would have read up on it sooner after my Doc prescribed it, and been far more limited with its use. Mentioned I had some insomnia with RLS and he prescribed it in a heartbeat. Now I do have some dependency on it, and yes, i imagine it's going to suck coming off of it.

    That and Klonopin are not nearly monitored by GPs enough on even regular vists. You really have to take complete responsibility with them, or else risk paying a big price. My doc reacted same way as AF's doc-- quick taper recommended, but I think I'm going to try and get him to go more along the Ashton route. Temaz's big drawdown is the dosage-- no good easy taper available.
    AFCFS likes this.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,530
    Likes:
    1,876
    Midwest, USA
    I have been taking generic Xanax for over a decade without any problems or increase in dose, despite its much ballyhooed addictiveness. I suspect that it became more dangerous when the patent expired.
    AFCFS likes this.
  13. AFCFS

    AFCFS Senior Member

    Messages:
    312
    Likes:
    243
    NC
  14. Nielk

    Nielk

    Messages:
    5,243
    Likes:
    5,147
    Queens, NY
    heapsreal and Mattman1 like this.
  15. Mattman1

    Mattman1

    Messages:
    47
    Likes:
    23
    It's difficult to comprehend for many just how easily addictive these drugs can be-- but that doesn't change the fact that they are.

    And yes, it's not the tolerance that's so bad, it's all the withdrawl symptoms that can go along with it. I mentioned this to my doctor whose jaw was gaping after he heard that I basically became tolerant after only three weeks of use. To which I looked at him in abject horror, my own jaw gaping, that he wasn't aware this was even possible.
    AFCFS likes this.
  16. MishMash

    MishMash *****

    Messages:
    445
    Likes:
    479
    Georgia
    Nielk,
    I included firmly-based facts, plus my own conclusions. You took issue with fact, and never backed down from anything. So I politely agree to totally disagree with you on most issues.

    1) Most people with ME/CFS, going forward, will not receive disability from the government. That's because the country has a $16 trillion debt, and SSDI will be limited in the future. Many may not have families to care for them. Drugs, like benzodiazopines, help many such folks finish up their careers, or soldier on in spite of a serious, lingering illness. I'm not sure why you expect thanks for issuing a "warning" about such substances, while living in a personally secure environment, never considering others may use them for personal survival. I have said before, doctors will not listen to your four-word prologue "I'm not against them..", followed by personal tale of perdition. They will simply cut off the next poor guy or girl who actually needs them.

    2) Frankly, in this day and age, with the internet providing more medical info than most doctors will ever know, I'm not certain ignorance about sedative-type drugs is an acceptable excuse. As an older woman, who lives in a big city, I really am finding it very difficult to believe you didn't hear about the dangers of pills, tranquilizers, opiates while growing up. My now 80-year old mother is petried by these stories, and like you would put a skull and crossbones on the label. The abuse of these substances is legendary, Marilyn Monroe, Judy Garland, Jimi Hendrix, all died of substance abuse. You can claim whatever you like; but I'm finding the total ignorance defense a little weak.

    3) No, you were incorrect; one-sided tales of addiction and abuse have in fact dissuaded most docs from prescribing benzodiazopine medicines. Yes, there is fear of malpractice, being blamed for sending patients down a road of substance-abuse perdition; it is hugely on the mind of every practicing doctor. I think you need to see new doctors. The well has really been poisoned by one-in-hundred tales of benzo addiction. That is the reality that new patients face. We who are trying to keep it together, to work for one more day, are being blanket labelled now by craven doctors.

    4) According to your response, there is no established association between psychiatric problems and benzo abuse.
    But according to most studies, 1) psychiatric pre-conditions, and 2) previous substance abuses are the two most prominent reasons for propensity to addiction. This is one of the most established facts in all psychiatry. Here you are accusing me of you using 'defense mechanisms', whatever that means; when it appears you are not aware of the facts youself. I have looked at "Benzobuddies" and "Benzowithdrawal" websites and they do have a fair number of people who meet these crtieria.

    5) No, most doctors are not aware of the suicide ideation that goes with SSRI, anti-seizure, anti-psychotic meds. It may be on package insert, but they sure give me samples of this junk in bundles whenever I go and see them. What does it tell you when somebody gives you something for free? Kind of sends a message about the product. I've never gotten free samples of Valium. It is well accepted among the medical profession that these are the safe, non-addictive drugs. These drugs are given freely to returning US troops and in some cases have lead to suicides. I have never seen cautionary tales on these pages about those drugs.

    If the only reason to come on to PR is to exchange well-wishes and good cheer to one another, it does not really do much concrete good. Giving out fair and evenhanded advice about medications is one critical function it serves. I'm not sure headlining a thread "Benzos Destroy Lives; see details" is a good idea.
    AFCFS likes this.
  17. AFCFS

    AFCFS Senior Member

    Messages:
    312
    Likes:
    243
    NC
    - for all their “power” I see this more and more.
    Don’t look a gift horse in the mouth.
    - This is true, but it might be changing - slowly - now that we have had 20+ years of SSRI use and experience under our belts.

    I was very surprised and pleased to see a new pdoc, who previously practiced in infectious disease. He does inpatient and outpatient care at the hospital where his office is, and I believe he manages the hospital’s women’s psychiatric care unit. He went over my long-term use of Prozac and essentially said that the SSRIs have the potential “to explode in your head” and spew out brain chemistry to all forms of detriment (not something you want to hear, but it gets the idea across). They often have been more of hindrance in his practice than a blessing. Not for everyone, but there is severe possible downside that often goes unacknowledged.

    A near opposite reaction, and perhaps more typical, was seen with the previous pdoc, who had said “well you haven’t tried all the SSRIs yet,” and “by the way, I have some Viibryd samples if you would like to try it.” He had also said he had heard “some good things about it” – I said “sure, from the drug reps pushing it,” and thankfully declined.

    I never had problems coming off Prozac because its relatively long half-life provides a pretty good self-taper, but other SSRIs can be devastating to come off of.
    And many times they are on them already, per America's Medicated Army:
    And the video synopsis: Prozac: The Military's Secret Weapon


    Sometimes taking the meds is very much a function of survival, for soldiers and citizens alike. On the other hand, they can run some severe risks. I had once suggested to a friend who was a nurse at NHI to ask her doctor about Klonopin to help her get through the day. And then when she quit NHI, and had problems with it, suggested she might seek help to get off it. If it helped her, and she had no complaints, I would never have breathed a word.

    I had a college adviser who confided in me that she had severe anxiety at the start of each semester. I also suggested she see a doc and maybe inquire about Klonopin, to see if it might be a good choice for her – I thought likely better than downing a six pack at night to get some sleep. She tried it for a while and it worked, but she went off of it in a short time and had good results with an OTC product.

    I don’t think it is a black and white issue, although the way it is embedded in our experience has a lot to do with our perception. Having seen and argued both sides of the coin, I have often felt it more likely to change someone's politics or religion than sway them in either direction of benzo ideals.
    MishMash likes this.
  18. MishMash

    MishMash *****

    Messages:
    445
    Likes:
    479
    Georgia
    AFCFS
    There's seems to be a common problem for people who take this drugs for anxiety. And the problem seems to be mainly with the Klonopin. Until these past few days, I never knew so many were given Klonopin, specifically. It has caused trepidation in some, hysteria in others.

    I would just do away with Klonopin. Ban it. While were at it, ban anxiety too. Or maybe we can just ban people with anxiety. Or maybe ban people altogether. Ban any medication that's not an antidepressant. Doctors everywhere would be thrilled. Doctors can spend their days giving flu shots and physicals to high school kids getting ready for football season (which seems to be 90% of my doctor's activity).
    AFCFS likes this.
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,530
    Likes:
    1,876
    Midwest, USA
    If anyone would like to take the survey, it can be found here below the article and above the comments. The first page is for Klonopin users. The second and, if needed, third pages are for users of all other bezodiazepines.
  20. arx

    arx Senior Member

    Messages:
    532
    Likes:
    138
    Could it be that while benzo withdrawal is taking place in the body, there is induced deficiencies of vitamins and/or minerals making symptoms worse? (Because of stress induced by benzo withdrawal)

    I understand that the withdrawal symptoms occur because of developed tolerance(short term/long term) resulting in desensitization of GABA receptors and increased sensitivity of excitatory neurotransmitters. So after the drug intake is stopped, in layman's language.. neurons go haywire and start firing, after not being able to do so for a long time because of drug use. That would explain the mental,mood symptoms as well as nerve irritation and pain.
    But does the withdrawal process also deplete any vitamins and/or minerals, resulting in more/more intense symptoms?

See more popular forum discussions.

Share This Page