Warning to people who would like to use Benzodiazepines

[alexk201]

I promised myself that I if survived my Klonopin withdrawal, that someday I would tell my story, so that other people can avoid going through the hell that I had gone through. Well, this day has finally come. Exactly four years ago in July of 2008 I took my last dose of Klonopin after taking it daily for two years..

For the past seven years I have been battling a cruel and unforgiving illness named chronic fatigue syndrome. This illness can be a double edge sword. It takes you to the bottom pit of despair and yet shows you how beautiful and precious life really is. However, nothing could have had me prepared for what I went through with benzodiazepine withdrawal.

I had already been sick for a year before I went to see a local neurologist. One of my most unrelenting symptoms was constant ear pressure on both sides along with tinnitus and hyperacusis. The neurologist was quick to give me a prescription for a benzodiazepine drug called Klonopin. I was always wary of taking medication and asked the doctor about any type of side effects. He assured me that I had nothing to be concerned about, that out of all his patients that were prescribed Klonopin no one ever had any problems, especially if it was at such a low dose like mine!! That night I scoured the internet trying to find as much information as I could about Klonopin andCFS. I ran across an article published by a renownedCFSphysician by the name of Dr. Paul Cheney about the benefits of Klonopin in calming down an upregulated nervous system in people withCFS. I was convinced! Next day I went to my localCVSand filled the prescription.

I was finally going to get rid of at least the ear pressure, or so I thought. I started taking 1mg of Klonopin daily at bedtime. Right away, my insomnia improved, now I was able to get a good ten hours of sleep compared to the five I had before the Klonopin. I noticed my anxiety level had decreased as well. Ever since I became ill, I was in a constant 24/7 panic attack. I suppose that as a result of this illness, my HPA axis went completely haywire and cortisol was constantly surging unregulated. However, the ear symptoms stayed the same, no change at all.

After about a year of taking 1mg of Klonopin at bed time religiously, I felt my condition getting worse. Anxiety levels increased back to pre klonopin levels, insomnia came back three fold and all of my other symptoms were getting exacerbated. This was terrifying! I had no clue what was causing this. A thought crossed my mind that it might be the Klonopin but I quickly dismissed it. How could it be the Klonopin? The doc said that this drug does not have side effects, isn’t habit forming or addictive. I kept feeling worse for another three months until I called the neurologist to voice my concern. He did not waste any time to reassure me. He said….”Alex, what you are experiencing is yourCFSillness. This has nothing to do with the Klonopin, if you would like, just cut your dosage in half, wait for 2 weeks and completely stop taking it.”

Well, by that point I was convinced that it was the Klonopin that was responsible for the decline in health that I was experiencing, so I took the neurologist’s advice and cut the dosage in half. Huge Mistake! Two days later I was in very bad shape. I could barely get out of bed, vomiting, diarrhea, inner tremors, hallucinations, fear, dread, OCD thinking and about a dozen other very disturbing symptoms. I started searching the internet on anything I can find about benzo withdrawal.

My search led me to a website called BenzoIsland. It looks like this site does not exist anymore but I am sure that there are many like it. Well, this site to me was a miracle. I pretty sure that if I did not find this site and learn the PROPER was to taper of benzo’s I would be long gone by now.

At this point of I am going to sum everything up. Initially I was thinking about writing a long version of my story but that’s not what you need to hear! You need to hear the meat and potatoes baby

So, I learned about the “Ashton Manual”. Right away I switched to Valium as it has a longer half life and withdrawal is more tolerable on it. I went through sheer hell for about 7 month. That is how long it took me to taper down. There were many times that I did not think that I was going to make it. Thank God I did not own a gun because I probably would of used it on myself. However, as many people have told me during my darkest days of despair, I would like to tell you the same, “Keep going, don’t stop!! There is a light at the end of this dark tunnel!”

Now, below are some final points I would like to leave you with:

1. Keep going, you will come out of this on the other side smiling, happy and health!
2. Follow a SLOOOWW taper plan based on the Ashton Manual. Do not go cold turkey under any circumstance.
3. DO NOT increase your dosage after going down. This will needlessly extend the time of withdrawal and might make you feel worse!
4. Find a competent doctor who is open to learning about the Ashton method and helping you through out the process.
5. Make sure to receive support from administrators and other member of this site! This is very important. You are not alone; people are going through exactly what you are at this very moment. Stand together and support each other.
6. There is such a thing as protracted withdrawal but I HIGHLY doubt that it goes beyond 2 years. You might have an underlying problem that has nothing to do with benzo withdrawal. Do not blame everthing on bezo withdrawal, research all other possibilities. As in my situation, a severe case of Chronic Fatigue Syndrome.

So remember, Do not give up on yourself! You will taper of the benzos and in time your brain chemisty will go back to normal, you will heal. You will feelNORMALonce again and go on with your life

 

[Nielk]

Hi Alexk201,

You are a hero!

Going through the experience of withdrawing from Klonopin is so intolerable that most people can not continue and end up giving up. Furthermore, many people mistake the effects of withdrawal with "I was much better off on Klonopin so therefore it must have worked for me - syndrome".

You were very smart to recognize the fact that when you started to feel so much worse, you understood that this was due to the Klonopin. Most people would not have recognized that. Most people would have increased their dose and probably would have felt better...for a while, until they would have built a tolerance to the increased dose.

You went about it the correct way. The withdrawal of Benzodiazapines should be done under a doctor's care ever so slowly. The Ashton Manual is the bible for Benzodiazepine withdrawal.

You persisted, unrelenting, no matter how hard it was and have come out the other end. Congratulations!

Now that you have "survived" the experience, you are warning others about this possible danger of Benzodiazepine
use. You give great advice as to recognizing the warnings and how to go about tapering off.

I know that some people reading this will think "well this is not me - I have been taking Klonopin and I'm fine".
I will counter with "Klonopin comes with a warning AGAINST long term use". There is a reason why Roche, the maker of Klonopin was "forced" to add this warning!!!! Trust me, no pharmaceutical company wants to put this warning on their labeling.

I would liken this with people smoking cigarettes. They see the warning on the label. They know that people develop lung problems and many other medical problems, yet they feel healthy. They say "cigarettes do not affect me".
Well, it doesn't feel like it's adversely affecting you until it's too late.

I'm not sure Alex201 if you read this http://phoenixrising.me/archives/12200. This is about my story with Klonopin. I hope that you filled out the attached survey. I, unfortunately did not have the option of tapering off properly from Klonopin. I hope that people will read and take heed of your warning and recognize the symptoms of when Klonopin starts turning on them. I hope they take action before they reach the critical stage that I did.

Thank you Alex201 for sharing your story.

 

[Dreambirdie]

I promised myself that I if survived my Klonopin withdrawal, that someday I would tell my story, so that other people can avoid going through the hell that I had gone through. Well, this day has finally come. Exactly four years ago in July of 2008 I took my last dose of Klonopin after taking it daily for two years..

Hi Alex201--

Thank you for sharing your story. What an ordeal you have been through! I am glad to hear you are on the other side of it now.

The doc said that this drug does not have side effects, isn’t habit forming or addictive. I kept feeling worse for another three months until I called the neurologist to voice my concern. He did not waste any time to reassure me. He said….”Alex, what you are experiencing is yourCFSillness. This has nothing to do with the Klonopin, if you would like, just cut your dosage in half, wait for 2 weeks and completely stop taking it.”

WOW! When I read something as ignorant as what these doctors told you about klonopin, it really pisses me off. Benzos are known to be HIGHLY ADDICTIVE! And stopping them cold turkey can be extremely dangerous! If these were my doctors, I would not hesitate to report either one of them to the medical licensing board. Their stupid advice could have cost you your life.

Well, by that point I was convinced that it was the Klonopin that was responsible for the decline in health that I was experiencing, so I took the neurologist’s advice and cut the dosage in half. Huge Mistake! Two days later I was in very bad shape. I could barely get out of bed, vomiting, diarrhea, inner tremors, hallucinations, fear, dread, OCD thinking and about a dozen other very disturbing symptoms. I started searching the internet on anything I can find about benzo withdrawal.

So, I learned about the “Ashton Manual”. Right away I switched to Valium as it has a longer half life and withdrawal is more tolerable on it. I went through sheer hell for about 7 month. That is how long it took me to taper down. There were many times that I did not think that I was going to make it.

I am so glad that you found the help that you needed, that you made it back from benzo-hell, and that you are okay now.

I have had HORRIBLE experiences with the benzos. I felt ill within 3 days of taking both Ativan and Klonopin. They messed with my brain, my mood, my energy, my balance. The good thing is that they made me feel so sick, I could have never gotten addicted to them.

Reading both your story and Nielk's, I feel awful for what you both had to go through. And very relieved that you survived and recovered from your benzo addiction.

Welcome back.

 

[Dreambirdie]

Here's a good article about klonopin addiction.

"No 'benzo' has been more lethal to millions of Americans than a popular prescription drug called Klonopin... And doctors are doling it out like candy, causing a surge of hellish withdrawals, overdoses and deaths."

http://www.cchrint.org/tag/stevie-nicks/

 

[CJB]

Klonopin and other drugs in this class have been around since the 50s and 60s. We have a lot of experience with them, and they are cheap. I know big pharma would love to see them replaced with the newer, prohibitively expensive "substitutes" with which we have much less experience and really don't know what happens to people on them long-term.

DB - do you really think an article about Stevie Nicks, an admitted street-drug addict and 60s rock star has any relevance? You can get yourself pretty sick on just about any drug if you abuse it, even aspirin.

There may be doctors out there like alex's who are incompetent to prescribe it, but the idea put forth in the article that doctors prescribe it just to shut their patients up is ridiculous. That may have been the case in decades past, but nowadays most doctors are too freakin' scared about getting sued to prescribe anything that may be addictive without great care.

I was strictly anti-drug when I got sick and was so sick after a year that I was planning suicide. I finally agreed to take a drug and it saved my life. Klonopin is helping people with severe sleep issues. It helps me with a particularly evil kind of pain - the feeling of my muscles being pulled off my bone (and thank you to everyone suggesting different minerals - hasn't helped). Helped me sleep when I was faced with a personal tragedy and the ensuing trauma and grief.

It is very clear that there are some people who should not be taking this drug. That's true of all pharmaceuticals, alcohol, street drugs, some foods, etc. But for some of us, it's made life tolerable with this DD.

Some people who have been helped by Klonopin tell their abbreviated stories here.

Okay - I'm not going to say any more on the subject. I find it extremely uncomfortable to be defending this or any drug, but there really needs to be some balance to these horror stories. I'm sorry for what you have had to go through, but it is highly unusual as was reported in the recent PR article and can be avoided altogether with appropriate physician management and patient education. There are no drugs without side effects.

To anyone considering using klonopin or any other drug, please have a good talk with your pharmacist first.

 

[xchocoholic]

I'm chiming in because I was on klonopin for 16 years and slowly withdrew from it myself, ama back in 2006. It took me 4 months because I'd get the
shakes / seizure like feelings and would go back up to the prior dose. I was able to get off klonopin because
I changed my diet and lifestyle to eliminate most toxins. Gluten, hfcs, caffeine, etc were clearly causing
me to feel over excited / shakey / seizure like.

I just started using a small amount again for
insomnia from time to time if my sleep supplements don't work. I can recognize when I need this now vs a
supplement. I know lack of sleep makes me feel seizure like
all day the next day and imho there's no need for me to experience that. Or risk triggering a real seizure.

Cheney refers to pwcs as being close to a seizure state and I think this is what he was talking about. Our
bodies get into an over excited state and we need someting, klonopin for me, to calm it.

Just to be clear tho, I have myoclonus and klonopin is the drug commonly prescribed for this.

Fwiw. I also went thru withdrawals from caffeine last year after being on it my whole life. That too caused shaking. At one point, my head hurt so had that I had a tiny bit of caffeine just to stop it.

Withdrawals aren't fun but
many people go thru this experience everyday. Of course, imho, slowly withdrawing from any drug will
ease the symptoms.

Tc .. X

 

[Dreambirdie]

DB - do you really think an article about Stevie Nicks, an admitted street-drug addict and 60s rock star has any relevance? You can get yourself pretty sick on just about any drug if you abuse it, even aspirin.

There may be doctors out there like alex's who are incompetent to prescribe it, but the idea put forth in the article that doctors prescribe it just to shut their patients up is ridiculous. That may have been the case in decades past, but nowadays most doctors are too freakin' scared about getting sued to prescribe anything that may be addictive without great care.

I was strictly anti-drug when I got sick and was so sick after a year that I was planning suicide. I finally agreed to take a drug and it saved my life. Klonopin is helping people with severe sleep issues. It helps me with a particularly evil kind of pain - the feeling of my muscles being pulled off my bone (and thank you to everyone suggesting different minerals - hasn't helped). Helped me sleep when I was faced with a personal tragedy and the ensuing trauma and grief.

Hi CJ--I do think Stevie Nicks's experience is relevant, because as I recall, she has said that her withdrawal from klonopin was "hellish" and worse than withdrawing from cocaine or heroin. I thought this was very telling, coming from someone who has A LOT of experience with several addictive drugs. And no, she didn't mention aspirin as being a problem.

I think alex's story, of a doctor who was clearly incompetent to prescribe klonopin, and clueless of its dangers, is not that rare at all. I was given valium at the age of 14, (and btw it was definitely to shut me up), and I was briefly addicted to it then. After my bad experience with it, I swore off valium for good, and I did not take any benzos again until a few years ago, when I gave in and tried atavan and then klonopin for severe insomnia. In my case both were a HUGE mistake. The insomnia, as bad as it was, was not nearly as bad as the reactions I had to the drugs.

Because I have severe MCS, pharma drugs are a really bad option for me. But I am certainly not the only one who has had bad experiences with benzos. Anyone who has worked with addicts in rehab will tell you the benzos are one of the worst kind of drugs to withdraw from using. Those who don't get addicted are a very lucky crew.

 

[August59]

CJB and xchocoholic - I have taken Klonopin on 3 different occasions, was on it for at least a year (one time it was 3 years) and off it for at least 6 months one time and at least 1 year the 2 other times, and had no problem stopping with a very slow taper over about 3 months or so. I had much harder time coming off 2 months of Xanax than I ever did Klonopin. My highest dose of Klonopin was 1.5 to 2mg a day, so I'm not sure if others are taking higher doses or not.

The one thing I can say is that Klonopin helped me in a lot of ways. It lowered my anxiety, it relieved a severe and constant whole body muscle tension/spasms that none of the muscle relaxers would help (Restoril, Flexiril, Elavil, Zanaflex and Skelaxin), severe tinnitus (I stil do not understand how someone can be deaf in their right ear, but have severe tinnitus in it) and Ambien and Klonpin give me my second best sleep with Ambien and Xyrem giving me the best sleep that I can get, but it still will not put me in to Stage 3 or 4 sleep.

My lack of Stage 3 or 4 sleep has been going on for at least 8 years and is definitely a real hinderance to my recovery. I can say with confidence though that Klonopin saved my life in a couple of situation and made life much more bearable over quite a few years. I'm not taking it now, but if I ever felt like I needed it I would not hesitate to stat taking it again!

 

[Nielk]

Why is it that when people post their "success" sotries about Klonopin, I have no problem believing them and listening to their experience yet, for some reason when someone posts their horror story, others have to chime in with their story.

Do you not believe my story because it doesn't match yours?

All this first poster - Alexk201 came to say is that if you do have a problem with klonopin...this is what I recommend.
Why do people have difficulty accepting this advice?

No one is saying that if you are being helped by Klonopin and you don't show any signs of tolerance, get off it. I do not argue with the fact that patients are being helped. I know because I was one of them. all that is being said is that this drug has the potential of being very dangerous. Look out for the signs.

Why is this well meaning warning not well accepted?

 

[xchocoholic]

Hi neilk,

It's not that a warning about klonopin isn't welcome, it's the way the story is told. Imho,
it suggests that klonopin should be avoided by everyone. It has an ominous tone. The title
even says it's a warning.

I've found klonopin and some other drugs to be helpful at times and I wouldn't want to scare
anyone off from using these. I use supplements when I can but sometimes drugs are better.

I think I see why cheney recommends this now too. There are times when my brain simply can't shut
down from a hightened state of arousal (sp). I've tried diet and supplements but haven't eliminated this
from happening sometime.

Fwiw, It seems to me that the real problem is in how you and this person withdrew from klonopin.
Imho, if withdrawals had been slower, this could've been avoided. I'm sorry you both went thru this.

My withdrawal was a
nightmare too but compared to other cfs symptoms that I had or still have it's not important.
It was scarey when I was going thru it but not now. Fwiw, I started walking normally after 16 1/2 years
right after I went thru this so I don't scare easily now.

There are many brain altering substances that people need to be careful with. I took too much 5htp
the first time and thought I was having an brain aneurism (sp). My current parasite cleanse caused
vertigo for 3 days. I could go on .. Lol ..

Sorry this is so long .. Tc .. X

 

[CJB]

Hi neilk,

It's not that a warning about klonopin isn't welcome, it's the way the story is told. Imho,
it suggests that klonopin should be avoided by everyone. It has an ominous tone. The title
even says it's a warning.<snip>



Fwiw, It seems to me that the real problem is in how you and this person withdrew from klonopin.
Imho, if withdrawals had been slower, this could've been avoided. I'm sorry you both went thru this.

<snip>

What she said.

 

[CJB]

Hi CJ--I do think Stevie Nicks's experience is relevant, because as I recall, she has said that her withdrawal from klonopin was "hellish" and worse than withdrawing from cocaine or heroin. I thought this was very telling, coming from someone who has A LOT of experience with several addictive drugs. And no, she didn't mention aspirin as being a problem.

I think alex's story, of a doctor who was clearly incompetent to prescribe klonopin, and clueless of its dangers, is not that rare at all. I was given valium at the age of 14, (and btw it was definitely to shut me up), and I was briefly addicted to it then. After my bad experience with it, I swore off valium for good, and I did not take any benzos again until a few years ago, when I gave in and tried atavan and then klonopin for severe insomnia. In my case both were a HUGE mistake. The insomnia, as bad as it was, was not nearly as bad as the reactions I had to the drugs.

Because I have severe MCS, pharma drugs are a really bad option for me. But I am certainly not the only one who has had bad experiences with benzos. Anyone who has worked with addicts in rehab will tell you the benzos are one of the worst kind of drugs to withdraw from using. Those who don't get addicted are a very lucky crew.

Alright - agree to disagree about Stevie.

What I meant about shutting their patients up was a reference in the article to doctors giving in to their patients who were begging for prescriptions for benzos and the doctors giving in just to shut them up.

We need better treatment for sleep. That's for sure.

 

[Nielk]

I think that there's a disconnect here. The warning is not about the withdrawal - although that could be torturous. The warning is that one could start feeling very, very ill while on Klonopin. This does not happen to most people but, it happens to enough people that a warning is in order.

Dr. Cheney did a tremendous disservice to our community by stating that Klonopin is NOT addictive. How can he make a blanket statement like that when it is not true?

 

[CJB]

Why is it that when people post their "success" sotries about Klonopin, I have no problem believing them and listening to their experience yet, for some reason when someone posts their horror story, others have to chime in with their story.

If someone comes on and posts their success story with klonopin, do you not feel compelled to tell your story as a warning?

Do you not believe my story because it doesn't match yours?

I absolutely believe you.

All this first poster - Alexk201 came to say is that if you do have a problem with klonopin...this is what I recommend.
Why do people have difficulty accepting this advice?

As xchoc said, it was told in a dark and ominous tone. His story and advice are valid from his experience but don't reflect the experience of others who have been helped tremendously. Why would you be threatened by that?

No one is saying that if you are being helped by Klonopin and you don't show any signs of tolerance, get off it. I do not argue with the fact that patients are being helped. I know because I was one of them. all that is being said is that this drug has the potential of being very dangerous. Look out for the signs.

Unfortunately, regardless of the intended message, what is being conveyed is that klonopin is an extremely dangerous drug. Period.

Why is this well meaning warning not well accepted?

It's accepted as someone's experience. Your story was featured in a Phoenix Rising article, complete with interviews with several respected physicians. The possible problems with klonopin have been addressed many, many times. I don't understand what you mean by not being well accepted?

I think that there's a disconnect here. The warning is not about the withdrawal - although that could be torturous. The warning is that one could start feeling very, very ill while on Klonopin. This does not happen to most people but, it happens to enough people that a warning is in order.

Dr. Cheney did a tremendous disservice to our community by stating that Klonopin is NOT addictive. How can he make a blanket statement like that when it is not true?

I'm not willing to criticize any of the doctors who have tried to help us. Mistakes have been made.

 

[Nielk]

I'm not willing to criticize any of the doctors who have tried to help us. Mistakes have been made.

To trust any doctor blindly is a great mistake. I'm not saying that this doctor does no good but, when he states that Klonopin is not addictive, he is clearly wrong.

 

[CJB]

To trust any doctor blindly is a great mistake. <snip>.

On this we can agree 100%. I felt that was the most important lesson to be learned from your story.

 

[Dreambirdie]

Dr. Cheney did a tremendous disservice to our community by stating that Klonopin is NOT addictive. How can he make a blanket statement like that when it is not true?

Yeah, I find Cheney's devotion to klonopin rather disturbing.

And then, if someone who is prone to become addicted to klonopin under his care actually does get addicted to it, what then...? Would he say the same thing alex's doctor did, and blame the symptoms on the CFS?

I am so fed up with doctors who don't exercise extreme caution with hypersensitive people. I know so many (and I am one too), who have been left holding the bag to do their recovery from the damage caused by bad medical advice on their own.

If someone wants to take a potentially addictive drug, then they should be forewarned about its dangers, and proceed with great caution. Thank you alexk201 for speaking your truth about it.

 

[taniaaust1]

Why is it that when people post their "success" sotries about Klonopin, I have no problem believing them and listening to their experience yet, for some reason when someone posts their horror story, others have to chime in with their story.

Do you not believe my story because it doesn't match yours?

All this first poster - Alexk201 came to say is that if you do have a problem with klonopin...this is what I recommend.
Why do people have difficulty accepting this advice?

No one is saying that if you are being helped by Klonopin and you don't show any signs of tolerance, get off it. I do not argue with the fact that patients are being helped. I know because I was one of them. all that is being said is that this drug has the potential of being very dangerous. Look out for the signs.

Why is this well meaning warning not well accepted?

Someone posts a good Klonopin story and another will then post a bad story on their experience and visa versa. I dont think it is a case of people "not believing the others persons own experience of it" but just that people want to see "a balance" to things, so will always pose their own alternative experience if they had one.

Try not to take it personally...it isnt that you arent being believed but more so peoples needs to have balanced views on forums and to share them our experiences too.

I too agree that Cheney probably went a bit too far in making this drug sound safe for all but he too obviously was expressing what he beleived and what he believed he was seeing in his patients. Quite possible some "doctor blindness" did go on there. He wouldnt be the first doctor to get an idea stuck in his head and possibily missing something which probably would be happening in at least a few of his patients at times. (It is hard to believe that NONE of his patients have EVER become addicted to that drug).

 

[taniaaust1]

The neurologist was quick to give me a prescription for a benzodiazepine drug called Klonopin. I was always wary of taking medication and asked the doctor about any type of side effects. He assured me that I had nothing to be concerned about, that out of all his patients that were prescribed Klonopin no one ever had any problems, especially if it was at such a low dose like mine!!

Maybe that was true.. maybe he hadnt had any issues in any of his other patients with it? or maybe he lied? Due to knowing you were in a constant 24/7 panic attack as you stated.. he may not have wanted to cause further anxeity in his patient by causing them to worry about something which in his view was unlikely to happen (hence making it sound like no one ever gets issues).

Its really hard to judge how many ME patients get bad issues from "low dose" Klonopin .. hopefully Corts survey will enlighten all of us of how likely or not likely, these issues are so allowing people to make more informed choices when it comes to these drugs over possible benefits to the possible risks. All drugs even seemingly non harmful ones, can carry risks.

Im glad you've managed to recover from these issues. I hope you reported back to that neurologist that you did end up with issues and they were from the Klonopin so he knows.

 

[alexk201]

Thank you Nielk for understanding the reasons that I wrote this post. The main reason I wrote this post was because I made a promise to myself 4 years ago that I would do so for the countless people that are going through the hell that I went through and need to hear as many success stories as possible. Reading those types of stories is what kept me going in my darkest moments.

My intention with this post is not to scare anyone or deter them from using benzo's. I am just providing a "warning" of what can happen and my experience with the drug. If it works for you then great! However, sometimes people think that the Benzo's are working and by the time they want to stop they get caught up in severe withdrawal and will need to hear this info about the Ashton Manual and ways to slowly taper off.

I have met hundreds upon hundred of people in online chat rooms who were negatively impacted by Benzo use and that is the population to whom my post is intended for. Not for the people who are helped by and have no problems with benzo's.