Is Klonazepan a necessary evil?

[Folk]

I've been taking Klonazepna for the last 4 years or so. Started with 1mg and went up to arround 2-2.5mg (when I got there I noticed was increasing to much so I stopped and started going back and forth)

Klonazepan did something nothing else did. Made me have way less nightmares (like a normal person I would say). and it always made me sleep well (I only used for sleeping, never for anxiety)

But everyone twisted their noses when they heard I take it every day... Everyone (Drs. or non Drs.) So it's been a while since I want to stop it and my doctor (who doesn't know much about fibro or me/cfs) wants me to stop to and maybe change to ambien since "it's way less prejudicial"

Ok. I decided to give it a try. 4days in I started having a looot of pain in my neck and back, which I wasn't experiencing even now I'm working out kinda hard (specially for someone like us). I'm actually in my best shape every since I got sick and no signal of damages.... So at first I didn't even related to Klonazepan but now, I finally did. I went from 20-25 drops (.1mg each) to 15 drops and 4 days after It started to hurt

Wow I took 20 drops again just to check and my pain diminished A LOT! So unless I'm projecting... something's on here...

Wonder if clonazepan was making my pain milder (since I've never been so well I would guess) or if the withdrawl is cruel enough to make me feel more pain and I'll have to power trhough.

I just read that a lot of doctors like to use it to "proctect'' the brain in CFS/ME, but some are reluctant to do it.

So throw anything you know at me please. @Cort if you can, give me some light, I think you might know a lot about it.

 

[Likaloha]

I have taken clonazepan for many years for my really severe restless leg problem and it is the o my thing that helps it.. Otherwise I jerk and kick and am so uncomfortable and cannot sleep.. I know some docs are against it, but I need to sleep!

 

[Remy]

Withdrawal is known to be nasty from these kind of drugs. I would slow the taper down even further and hold each drop longer. But it is almost inevitable that there will be some negative symptoms along the way. I don’t personally think Ambien is any healthier though and am not sure I would go through all that for that reason.

 

[dejurgen]

Klonazepan

Now that indeed is a nasty drug. I only ever took a worse drug once. Wont even mention its name.

But everyone twisted their noses when they heard I take it every day... Everyone (Drs. or non Drs.)

Many of those people wouldn't survive a single year with your disease, so they are in no position to judge you.

I was lucky it didn't do me that much good. Seizures improved a lot by doing gentle circulation exercises. Sleep got less bad (including those extreme over the top super intense and vivid 50 in a row nightmares) with getting up every time I woke up, walking a bit around, sitting on a chair and doing circulation and breathing exercises. I only slowly introduced this new regimen but it still was very harsh. Now I sleep better, wake up less and am in better general health.
Consult a good Physical Therapist when doing so!

At first that was horribly harsh as I end doing so for about five hours a night spread over about ten "sessions". Should have utterly broken me but it slowly improved my health. Harsh as it was, it was better then the alternative (trying to have a "good" night of sleep). I'll write on it in the "ME current improvement series".

Writing it has had a severe delay, hope to get back on it soon but wont set a date on it yet.

 

[Zapped]

@Folk I took KL for over 30 years. It was one of the early ‘must have drugs’ as proselytized by Dr. Paul Cheney. I casually tried to get off of it several times over the years, each time ultimately w/o success. It wasn’t a compelling need to quit so I’d just pick it back up. I had to reinstate it by dr. each time or the worst flu like PEM hit hard.

Then I did it for real, determined in 2018, following the protocol of the Ashton Manual(see Benzo.org.uk.). I titrated down to ~.5mg kL after 8 months and made the switch over to Valium and continued titrating down over 4 months, then stopped ~ Dec 1, ‘18... . I became uncomfortable right away and couldn’t sleep w/o more Ambien.

On Christmas Day I began a case of tremors - hands shaking and gut quivering. After a week or 2 of this hell I went back on Valium and began re-titrating down again from a high dose. About mid January the slight peripheral neuropathy flared in my nerves of my feet - nerve pain at an 8-9 level. It was so bad I was at the doctors’ office the next morning. I had to have pain killers... .

That was 3 months ago. Now, I’m still on Valium and have gone on a hospital pain management protocol as well, taking Percocet and Methadone for pain (no drug abuse, no alcohol; just dr’s protocol). It’s unequivocal in my mind that this was the result of long term use of klonopin. The doctors believe it as well and they only pay lip service to CFS.

I don’t know when all this additional pain and discomfort will end but I do wish I had followed the advice from the above website and manual and gone with the klonopin withdrawal a lot earlier. Right now it’s looking like two years for one contiguous run at withdrawal from KL, closer to 3 if I include the total withdrawal time. If you haven’t done so I recommend spending some time there and weighing the contents of the bento users, especially klonopin. Good luck.

 

[Folk]

@Folk I took KL for over 30 years. It was one of the early ‘must have drugs’ as proselytized by Dr. Paul Cheney. I casually tried to get off of it several times over the years, each time ultimately w/o success. It wasn’t a compelling need to quit so I’d just pick it back up. I had to reinstate it by dr. each time or the worst flu like PEM hit hard.

Then I did it for real, determined in 2018, following the protocol of the Ashton Manual(see Benzo.org.uk.). I titrated down to ~.5mg kL after 8 months and made the switch over to Valium and continued titrating down over 4 months, then stopped ~ Dec 1, ‘18... . I became uncomfortable right away and couldn’t sleep w/o more Ambien.

On Christmas Day I began a case of tremors - hands shaking and gut quivering. After a week or 2 of this hell I went back on Valium and began re-titrating down again from a high dose. About mid January the slight peripheral neuropathy flared in my nerves of my feet - nerve pain at an 8-9 level. It was so bad I was at the doctors’ office the next morning. I had to have pain killers... .

That was 3 months ago. Now, I’m still on Valium and have gone on a hospital pain management protocol as well, taking Percocet and Methadone for pain (no drug abuse, no alcohol; just dr’s protocol). It’s unequivocal in my mind that this was the result of long term use of klonopin. The doctors believe it as well and they only pay lip service to CFS.

I don’t know when all this additional pain and discomfort will end but I do wish I had followed the advice from the above website and manual and gone with the klonopin withdrawal a lot earlier. Right now it’s looking like two years for one contiguous run at withdrawal from KL, closer to 3 if I include the total withdrawal time. If you haven’t done so I recommend spending some time there and weighing the contents of the bento users, especially klonopin. Good luck.

Yeah reading the "its worse to tapper off than heroin" just makes me want to stay on it....

I've taking for 4 years and i only take for sleeping but I've never increased past 20-25 drops (I only take 30 drops when in I'm somewhere hard to sleep or with someone else in my bed)

So thats arround 2.5 mg which should be considered REALLY safe according to what you can actually take on a daily basis...
Don't know if that makes it easier to withdrawl though... I expected insomnia and even anxiety but Never expected pain from it...


Funny thing is, I went on a hollyday some months ago and forgot to bring the KL... I didn't worry much I just took some Xanex that my friend had for sleeping and I didn't notice any issues (nothing major at least since the pain fluctuates so much you can never tell what causes what)


Also @Zapped, could you please keep me updated how you're withdrawl is going? Thanks (btw how much did you take and how much were you taking when you stopped it completely?)

 

[pbyr]

They would never prescribe those for me so I had to look for alternatives. Thankfully I found GABA which if taken under the tongue (not taken orally but open the cap under the tongue), GABA is the molecule that benzos work for. Benzos work by inhibiting reuptake vs. GABA supplement actually donates that molecule. Fixed the sleep issue, fixed the anxiety issue (which was quite severe).

Vitamin B6 and magnesium also support GABA production.

 

[Jay Born]

I've been taking Klonazepna for the last 4 years or so. Started with 1mg and went up to arround 2-2.5mg (when I got there I noticed was increasing to much so I stopped and started going back and forth)

Klonazepan did something nothing else did. Made me have way less nightmares (like a normal person I would say). and it always made me sleep well (I only used for sleeping, never for anxiety)

But everyone twisted their noses when they heard I take it every day... Everyone (Drs. or non Drs.) So it's been a while since I want to stop it and my doctor (who doesn't know much about fibro or me/cfs) wants me to stop to and maybe change to ambien since "it's way less prejudicial"

Ok. I decided to give it a try. 4days in I started having a looot of pain in my neck and back, which I wasn't experiencing even now I'm working out kinda hard (specially for someone like us). I'm actually in my best shape every since I got sick and no signal of damages.... So at first I didn't even related to Klonazepan but now, I finally did. I went from 20-25 drops (.1mg each) to 15 drops and 4 days after It started to hurt

Wow I took 20 drops again just to check and my pain diminished A LOT! So unless I'm projecting... something's on here...

Wonder if clonazepan was making my pain milder (since I've never been so well I would guess) or if the withdrawl is cruel enough to make me feel more pain and I'll have to power trhough.

I just read that a lot of doctors like to use it to "proctect'' the brain in CFS/ME, but some are reluctant to do it.

So throw anything you know at me please. @Cort if you can, give me some light, I think you might know a lot about it.

 

[Likaloha]

I started taking it several years ago for my restless leg syndrome that was keeping me awake all night and my husband too... I hear so much about how bad it is but I need to sleep and nothing else helped keep my legs still....sleep is so necessary for everyone and I will continue my rx... My dose has stayed constant for a long,long time, have not had to up it, so I will continue taking it.. My brain damage is very severe from my near fatal West Nile meningoencephalitis, and had so much trouble sleeping for so long that I am willing to take what my doctors prescribe as long as it is reasonable and truly helps me!

 

[Not dead yet!]

I've been taking Klonazepna for the last 4 years or so. Started with 1mg and went up to arround 2-2.5mg (when I got there I noticed was increasing to much so I stopped and started going back and forth)

Klonazepan did something nothing else did. Made me have way less nightmares (like a normal person I would say). and it always made me sleep well (I only used for sleeping, never for anxiety)

But everyone twisted their noses when they heard I take it every day... Everyone (Drs. or non Drs.) So it's been a while since I want to stop it and my doctor (who doesn't know much about fibro or me/cfs) wants me to stop to and maybe change to ambien since "it's way less prejudicial"

Ok. I decided to give it a try. 4days in I started having a looot of pain in my neck and back, which I wasn't experiencing even now I'm working out kinda hard (specially for someone like us). I'm actually in my best shape every since I got sick and no signal of damages.... So at first I didn't even related to Klonazepan but now, I finally did. I went from 20-25 drops (.1mg each) to 15 drops and 4 days after It started to hurt

Wow I took 20 drops again just to check and my pain diminished A LOT! So unless I'm projecting... something's on here...

Wonder if clonazepan was making my pain milder (since I've never been so well I would guess) or if the withdrawl is cruel enough to make me feel more pain and I'll have to power trhough.

I just read that a lot of doctors like to use it to "proctect'' the brain in CFS/ME, but some are reluctant to do it.

So throw anything you know at me please. @Cort if you can, give me some light, I think you might know a lot about it.

I have migraines which are hemiplagic now as they got worse over the years. Klonazepam has the same effect on me that it has on epileptics, that is, disinhibition of muscle cramping and involuntary twitching. It then triggers a migraine. So in my case, no it doesn't help me at all. Diazepam is the closest I can get to any benzo. Diazepam reduced my pain when I was still having Celiac-induced pain. It's probable that all benzos do that.

Ambien is definitely not without stigma. About once every two years I take it for 10 days to catch up with my chronic inability to sleep. I used to take it for years and it stopped working, but I was so addicted to it, I had to use tiny doses of diazepam to get off of it. Ambien is a benzo too. But it doesn't stop its own withdrawal symptoms for some reason. I couldn't just reduce it to get off of it. Now I use it extremely rarely only because there isn't a better alternative. I refuse to take it daily ever again in my life.

Every single neurologist I've talked to says that if a drug works for you, you should NOT change it. Your body adapts to the drug and switching to something else because somebody is uncomfortable with it emotionally, that makes no sense. Your doctor is acting from emotion and shame. That's not your problem. You have a drug that works for you. I think you could change it only if you find a natural way to sleep and you no longer need it. If you do find (someday) that you can sleep without it and find a way to reduce your pain, then you can reduce and eliminate Klonazepam much more easily than Ambien.

I think it's better to stay with the drug that works for you than it is to reactively change it whenever someone has an opinion.

You can search google for "ambien withdrawal headache" to find some forum posts of actual people who suffered it. But this is a more "official" resource that you should show your doctor. Ask him/her why you should risk these new side effects when you already have a drug that works. https://www.addictioncenter.com/sleeping-pills/ambien/withdrawal-detox/

 

[Julianna Grace]

because I was misdiagnosed in the 70s onwards, I was on benzos etc, and when the truth came i was on 20 mg valium a night and ativan and .... was helped by a UK group called "involuntary tranquillser addiction" as the valium was causing suicidal thoughts etc and I needed to see what I was left with after 20 years..

It took me a full year in isolation as the drs were not what was... needed to get free, and the withdrawals were so appalling I would never ever touch benzos again. Also left me with attacks of facial neuralgia that too me 15 years to get free of.

Here in Ireland they still hand benzos out like sweets.

The only meds I ask for are pain relief for the raynauds leg and foot pain at night. Tylex works when other meds do not.
Now we have here the knock on effect of the US codeine fear but with far less justification.
If you find a med that works and know the dangers? without proper pain relief I get no sleep and as I told one dr, am not worried re addiction just pain relief




If you find a medication that woir

 

[Raden Adams]

I have been taking up to 2 mgs per day for everything from myoclonus, sleep, anxiety, etc., and I have stopped taking it off and on several times over the years without any problems. I just took a drug holliday two weeks ago from most of my meds and without a problem. But, if so, I would probably be on it for life because of the benefits that I receive from taking it.

 

[curlycat]

I could not walk without help when I first got sick and was put on Xanax for it. After 31 yrs. I had raised the dose 3 times and went into tolerance withdrawal, but did not want to ask for another rise in dose. This was just when the news came out that benzos cause dementia. Docs where I live started ripping people off benzos without taper. My good doctor got sick and died. I decided to preempt a too fast withdrawal, and used the Benzo Bible and a helpful ARNP to withdraw slowly over 22 months, switching to valium near the end to take advantage of the lower doses. It was absolute hell, and still not slow enough to keep from taking at least ten years off my life by doing it. All sorts of other health problems got much worse and most of that is permanent.

I have been totally off of benzos for 10 months now and still cannot sleep more than 4 hrs. a night. There were long periods of 0-2 hrs. per night before this. My mood is so unstable from lack of sleep, that I avoid people for their protection. I take handfuls of OTC drugs and supplements to try to get some sleep. Ionically, one of them is Benadryl, which also destroys memory. My memory has taken major hits and I literally cannot walk and talk at the same time now, nor can I cook more than one dish meals. I found out who my real friends were when I could no longer go anywhere or do anything, which saves me a lot of time now, since there were so few real ones. I am not sorry I got off it, only that I ever took it in the first place. I wonder if doctors will ever stop believing what drug salespeople tell them? How many times does this have to happen with new wonder drugs turning out to be poisons designed just to make money? Patients always bear the brunt.

With hindsight, I would have utilized alternative medicine and exhausted all possibilities it had to offer before considering benzos, but I knew nothing about it back then. I would have kept my pain meds, since they worked better than benzos and were much, much easier and quicker to taper. I thought I could get pain meds back again if I ever needed them...famous last words! I am in agony sometimes and pain keeps me awake. A doctor tole me he believes benzos will soon be relegated to psychiatry only, and you will have to see one once a month to get them. I could not afford that even with insurance.

Things that helped me the most with benzo withdrawal: Mg Threonate, L-Tryptophan, Ashwaghanda, Benadryl, and Clonidine, w/o which I could not have gotten off benzos ever.

 

[jaminhealth]

I happen to believe all/most drugs are evil. And not really necessary, as there are alternatives for EVERY drug out there. I've been working with alternatives for 25+ yrs and avoid drugs every chance I can.

For sleep, I have my Sleep Remedy here, I believe, in the sleep area of this forum. I sleep 9-10 hrs and since I found the HGH homeopathic gel, I even sleep deeper and long and better.