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Benzos

arx

Senior Member
Messages
532
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.
 

arx

Senior Member
Messages
532
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.
 
Messages
445
Location
Georgia
AFCFS
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.

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.
 
Messages
445
Location
Georgia
For me, I was on klonopin for 25+ years (nighttime dose) for anxiety/sleep and would say like Nielk that there was a parodox reaction to klonopin after time. My doc said this could also happen because I was withdrawing during the day from the tolerance that I had developed. arx - I have heard so much variation in benzo use/response that I would not discount anything. I had a friend who took the orally digestible form (think it was .125 mg) and she would have a bad time if she missed a dose. On the other hand, her husband would pop the 1mg throughout the day like they were m&ms and seem not to have much of an effect.

MishMash - I would not hesitate to take anything that works, the one final thing for me was that they can kind of make you a slave to a doc. I had initially seen a pdoc on regular basis and when I did not want to spend money for the CFS he could not treat, he politely gave me a call and essentially said: if you want your script you need to come in and see me more often. I said that it seemed a little odd that this would be necessary after being on the same dose for 25+ years and having been a regular patient of his for some time, and he was not prescribing any other meds to consider - that essentially he was asking me to pay for a $150+ for a visit to get a $4 generic script at Walmart. He just said that is the way it works. At the time, my Internist said it was not a problem to just call in a script when I needed a refill, so that was no longer a direct issue but it bothered me that it came up in the first place.

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.
 

AFCFS

Senior Member
Messages
312
Location
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):
Magnesium is also used for treating attention deficit-hyperactivity disorder (ADHD), anxiety, chronic fatigue syndrome (CFS), Lyme disease, fibromyalgia, leg cramps during pregnancy, diabetes, kidney stones, migraineheadaches, weak bones (osteoporosis), premenstrual syndrome (PMS), altitude sickness, urinary incontinence, restless leg syndrome, asthma, hayfever, multiple sclerosis, and for preventing hearing loss.

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
 
Messages
445
Location
Georgia
It is true that us who have gone off Klonopin are still ill with our original illness but, that does not mean that all of us should stay on these Benzodiazapines. Some of us have had horrible experiences from taking Klonopin.

With me, at first, it was very helpful. It helped me sleep when I could hardly sleep on my own. What I should warn some people though is that the side effects from taking Klonopin could be very similar to ME/CFS side effects so that when one is taking Klonopin and lets say, they are sleeping well now, their other symptoms of ME/CFS might have worsened with no realization that this could be due to the Klonopin. They might just think that their illness has worsened with time.

After a few years on it, I started having a paradox reaction to the Klonopin. Instead of making me calmer, I was feeling very edgy and nervous which lead to dangerous suicidal thoughts. This is not unique to me. There are others...many others who have had this happen. Sadly, some have gone ahead and acted on these thoughts. Because of this, a few years ago the FDA has gone ahead and sent out a warning to Doctors about the possible dangers of taking these drugs.

This drug changes your brain...not for the better. Your GABA receptors become useless. They forget how to function. This is why when one discontinues taking the drug, they usually have so many adverse effects long after the drug leaves the body.

These symptoms that arx and AFCFS talk about, like rage and anger are very common withdrawal effects. The brain has a lack of the calming effect of the GABA neurotransmitters which in turn renders one very edgy. The more rapid the withdrawal, the more pronounced these effects will be.

One should take the warnings about discontinuing these drugs cold turkey very seriously, even when one has been taking it for a few days.

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

Senior Member
Messages
312
Location
NC
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.
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.
Maybe if I take it for another 15 years, I'll get the anger management issues you discussed.
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.
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.
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.
 
Messages
445
Location
Georgia
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..

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

Senior Member
Messages
312
Location
NC
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.

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.
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? ]
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.
There must be a reader or two who started seeing unicorns and plasticine horses appearing on the shore.
- If they have, hope they post pictures, have not seen one in a long time - thought they might be extinct.:)
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
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.

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.
 
Messages
47
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.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
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.
 

Nielk

Senior Member
Messages
6,970
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).
/quote]

Hi Mishmash,

I don't know which website you went to but I would suggest this one "Benzobuddies". Unfortuanately, it has many personal accounts there of people's experiences trying to safely withdraw for Benzodiazepines.

You state, "I don't know how many of these folks don't have pre-exisiting psychiatric conditions" at the benzowithdrawal websites. You know, I have no idea about that but then again, this is a defense mechanism that many say about us when reading our websites and forums. It is impossible to either prove or disprove but, there is no doubt that if one delves into this topic in order to really factually know what's going on, there is countless information out there. There are legitimate studies, patients' first hand experiences and Doctors' testimonies who specialize in this topic.

Just like we would not want people to judge ME/CFS patients by reading a few comments on one forum, I would not advocate for us doing the same to others.

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.

Just to clear things up, I had 6 years of use where the last three I took 3mg a night per my prescribing Doctor's advice.

I never was and am not an "addict". I never took a "drop" more than was prescribed for me. I never had a craving for this or any other drug. I never felt "high" from a Klonopin dose or any other medications I was taking at any time. I never even felt "good" from taking Klonopin. It simply at first helped me to sleep...until it stopped being effective for my insomnia.

My difficulty was that I started having a paradox reaction to it and could not effectively or "safely' go off it even with medical help.

If you have read my story, you will see that I never advocated that no one should be taking Klonopin if it helps them nor was I trying to say that everyone who takes it will experience the same difficulty as I. What I simply said that patients should be informed and know of the possible dangers so that if and when they experience the symptoms that I was having, they will recognize that it could be from the Klonopin and that there are ways out there to go off it safely.

What you, Mishmash, and many others might not know is that I personally know of cases where patients were in the exact position I was in but, did not find the help that I did and they ended their lives because they could not deal with this any longer. I was one day away from being one of those statistics. Yes, I would have been one of those ME/CFS patients who people would have said that she committed suicide because of this horrible illness. They would not have known that this was due to the Klonopin. I know better because I survived and once I was detoxed, My urge to commit suicide died down. Others did not have that chance.

What you also don't know is the amount of mail I have been personally receiving since coming out with my story. Mail from ME/CFS patients who have been suffering like I did and are so grateful for writing about it and giving them hope that this can be overcome.

I think everybody appreciates your account, but you might be one-in-one-hundred, in terms of addictive response.

Actually, clinical studies show that 1/3 of long term Klonpin users become dependent on the drug.

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 to admit that I am stumped by this comment. Are you saying that if one is on disabilty and their spouse if supporting them, then are are more eager to warn about the potential dangers of benzos? How is that? Now I understand why people are so afraid to come out with their personal difficulties with benzos on this sight. They are afraid to be vilified by other members! Now you know why there are so few out here on this forum and you are working very hard to maintain this balance.

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.

I'm not sure what the connection of your last statement has to do with the first part.

Yes, SSRIs come wit that warning and I think by now most people are familiar with that warning. Klonopin does not come with that warning on the label. Most Doctors out there are not familiar with that danger. When I was so ill, my Doctor contacted a top Pharmacologist in Mt Sinai Hospital, NY and he said that I could not be having suicidal thoughts from Klonopin.

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.

Again, I'm confused about the connection here. I would hope that if you are truly disbled to work that with all your results you would qualify, although this unfortunately is not always a logical outcome. Disability claims when it comes to CFS are outrageously treated - totally unfair. I'm not sure what the connection to Klonopin is?

Of course, as 1 person, I have no power at all...to control anything. I have no doubt about that.

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.

So this is what it's all about? You have a fear that Doctors won't prescribe it anymore because they are afraid of malpractice insurance? Fear no more. Doctors in the US cannot be sued for prescribing Klonopin. Many have looked into this and it cannot be done.

At the time that Cort wrote the article with my story, he posted an extensive survey for ME/CFS patients who have been or are currently taking Klonopin. I believe that Cort has the results and will be posting it shortly.

We will have a better picture then as to the real statitics of ME/CFS patients.
 
Messages
47
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.
 
Messages
445
Location
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.
You state, "I don't know how many of these folks don't have pre-exisiting psychiatric conditions" at the benzowithdrawal websites. You know, I have no idea about that but then again, this is a defense mechanism that many say about us when reading our websites and forums.
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

Senior Member
Messages
312
Location
NC
craven doctors
- for all their “power” I see this more and more.
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?
Don’t look a gift horse in the mouth.
It is well accepted among the medical profession that these are the safe, non-addictive drugs.
- 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.
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
And many times they are on them already, per America's Medicated Army:
So LeJeune visited a military doctor in Iraq, who, after a quick session, diagnosed depression. The doctor sent him back to war armed with the antidepressant Zoloft and the antianxiety drug clonazepam. "It's not easy for soldiers to admit the problems that they're having over there for a variety of reasons," LeJeune says. "If they do admit it, then the only solution given is pills."
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.
 
Messages
445
Location
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).
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
At the time that Cort wrote the article with my story, he posted an extensive survey for ME/CFS patients who have been or are currently taking Klonopin. I believe that Cort has the results and will be posting it shortly.
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.
 

arx

Senior Member
Messages
532
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?