Benzodiazapines

2Cor.12:19

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I agree. It's not only totally do-able, but I;ve often wondered if it isn't less stressful on your brain, neuro, and CNS, since they don't have to adjust suddenly (and it would feel sudden to them, even with a long slow crossover period) to a new substance that functions slightly differently from the original one.

Compounding pharmacies are great for this, but chose your compounder carefully, I just read recently that they're under even less supervision than large regular pharmacies, tho why that would be knows God. I think when you get down to the very end of your taper, a good compounding pharmacy would pretty much be the only sensible way to go, no? Tiny, teeny, inky-dinky little doses would be tough even with a jeweler's scale.
@YippeeKi YOW !! - Golly, thank you for all the encouragement!

Re: Staying on Xanax - I read a great little book - "Xanax Withdrawal" by Dr. Stuart Shipko, a psychiatrist who did an about face after 30 years of prescribing Xanax for anxiety and panic disorder. He believes directly tapering from Xanax is not only do-able, but preferable for many people. His book got a little flack at Benzo Buddies because his "suggested" taper schedule was a bit fast--but after reading the book for myself, he made it clear the suggestion was only to illustrate how to go about tapering, and that everyone must go slow and at their own pace. I have a friend who did a slow direct taper successfuly and is now benzo free after being on 2 mg Xanax daily for 40 years!

Re: Compounding - I have been using a wonderful local compounding pharmacy for years to do my LDN and T3. When I first started compounding I was worried that someone who didn't know what they were doing could do some serious harm. The pharmacist carefully explained why their methods for measuring all those "Tiny, teeny, inky-dinky little doses" (LOL!) were impossible to mess up.
 
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Seadragon

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A really good and accurate way of tapering once you get to smaller doses is using the water titration method.

You can find out more about this on the Benzobuddies forum and YouTube also has some videos illustrating the method. Someone on the Benzobuddies forum can talk you through how it works and how to do it.

It makes it very easy to drop very tiny doses at a rate you choose.

I did this towards the end of my taper off benzos and once I got the hang of it, it was very easy and the remainder of my taper went smoothly.

@2Cor.12:19 @paul80
 

2Cor.12:19

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A really good and accurate way of tapering once you get to smaller doses is using the water titration method.

You can find out more about this on the Benzobuddies forum and YouTube also has some videos illustrating the method. Someone on the Benzobuddies forum can talk you through how it works and how to do it.

It makes it very easy to drop very tiny doses at a rate you choose.

I did this towards the end of my taper off benzos and once I got the hang of it, it was very easy and the remainder of my taper went smoothly.

@2Cor.12:19 @paul80
@Seadragon - Thank you - that’s something I’m considering too.
May I ask how long you were on benzos?
Which ones? What was your starting daily dose and at what dose did you jump?
How long did the whole process take? And finally, do you feely you’ve fully recovered from the benzos?
I’m sorry for all the questions- please don’t feel obligated to answer - 😊

BB is helpful but I can’t find anyone there who has ME/CFS. I’m trying to find out how benzo withdrawal affects us since tolerance withdrawal mimics many ME symptoms. I’m hoping coming off will improve and maybe illuminate some of the new conditions I’ve developed in recent years.

On the other hand I wonder if it will make them be worse.
 

Seadragon

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@2Cor.12:19 My benzo history was long and complicated and I haven't got the energy to go into the whole thing here.

It took me three years to get off benzos (Clonazepam and Diazepam respectively) completely. I messed up my first attempt at a taper (went too fast not realising it was the wrong thing) so had to go back on and start again. I took the second attempt extremely slowly!

Yes, I am fully recovered from the benzo withdrawal (I was mostly over it by the end of my taper) apart from I perhaps have more difficulty dealing with emotional and physical stress at certain times of the month than I did before (I am female) and I can be a bit oversensitive!

I found those on BB to be kind and very understanding about my illness and happy to try to help anyway. The taper advice and know-how on that forum is very good and the members were very friendly. There were a couple of people with ME on there at that time also.

I had to come off benzos because I had developed anxiety and personality changes on them, initially between doses but then that eventually became most of the time so I had no choice but to withdraw from them. From what I understand this could have been a paradoxical reaction to the drug or/and tolerance withdrawal. I believe that is quite rare.

Can't go into this anymore - I don't usually post much here because I am too exhausted/brain fogged most of the time but hope this helps a little.
 

paul80

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Am not sure what you mean by " .... next Friday ...". Does that mean this Fri, 11-15, or the Fri after that, 11-22?

Once you transfer to the Valium/diazepam ( Valium is unbelievably expensive, so the generic form, diazepam, might be your best bet), you ight find that it helps your muscle issues. I'm not sure what they are since you haven't mentioned any details (nor am I asking for any ..... dont want to intrude), but diazepam is a world-class muscle relaxant, and you may find that helpful.

OK. Soooooooo ...... Dont want to rain on the parade, but if you read some of your Ashton, she advises against most drug clinics, since they usually try to take you off whatever you're on as fast as possible, and often use outdated tranqs, like phenobarbitol, to do it. The faster and harder the taper, the more risk of adverse reactions, including PAWS, which is an indefinitely extended state of misery that you don;t need.

It sounds like this clinic is at least is willing to transfer you to Valium, which should take a few weeks. I'm leery of how willing your GP is to do what is critical for a successful taper: to go at the patient's pace, not the doctors. That's one of the reasons that taper 'experts' have discovered that there's a really remunerative niche here, if they're willing to go thru the training and licensing requirements to hang out their shingle. Not a lot are, judging by a quick search I did for that specialty when you stared posting.

Am also curious as to why the drug clinic isn't providing what you need for the taper, and what their function in this equation is, if your GP is doing the prescribing. DOes he think that their expertise is needed? Its an unusual Dr who'll admit to not knowing every little thing.

What have they, and your GP, told you about the taper they have in mind? I know that you're in a desperate place right now, and that anything that feels like help is immediately accepted as the answer, because any answer seems better than the absolute void you've been facing in terms of effective help.

WHen the drug clinic people come out, here re some possible questions for them that will give you a better idea of their plans for you. Keep in mind that the prescribing Dr generally knows nothing about tapers or their effect, and their primary interest is getting you off any medication as fast as possible.

  1. Who's in control of the taper: you, the drug clinic, or your GP? In other words, who calls the shots on this?
  2. How long to transfer to a Valium/diazepam equivalency before starting the actual taper .....
  3. Are they willing to craft the taper to your reactions? A 10% cut can be more brutal than you can imagine, because it seems so reasonable, so small. It's not. I'd recommend starting with a 5% cut, AT MOST. Less if the drug clinic people are willing, or you react badly. If you handle the 5% well, stay on it til you're very sure you can handle a bigger cut.
  4. Are they willing to halt the taper and hold you where you are if there are uncomfortable reactions, in order to give your brain/CNS time to catch up before cutting again?
  5. Everyone's different and will react differently. Are they willing to be responsive to your reactions, or do they have a set plan that's written in stone and that's it .....

That's a good start. Throw in anything else you're concerned about. And tag me if you have any questions, I'll get back to you as soon as I can .....
They're coming out on the 22nd, my GP said they will probably switch me to diazepam, i just call it vallium but i mean diazepam.

Muscle issues are the usual M.E problem not enough energy so my legs/arms/eyes are aching if i use them a certain amount, my brain is affected also. I'm just getting to the bathroom and back throughout the day, and when i have a bath i get very exauhsted the next day.

I seen a neurologist and she thinks i have epilepsy though i'm still wating on the ERG results. So my GPs are concerned about that and i'm about to start a new drug for it.

And yes my GP said they want to wait on the drug clinic's advice because they are unsure about how i should come off the xanax, i'm pretty sure my gp will let me taper it slower which i plan to do, if the drug clinic make it too fast.

Thanks for all the advice, i'll keep it up on my browser so i don't forget.
 
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I seen a neurologist and she thinks i have epilepsy
Do you have a history of seizures, or have you had indicatins of petite mal seizures which are harder to track since you just blink out for a minute, with no awareness of that once you come back.
And yes my GP said they want to wait on the drug clinic's advice because they are unsure about how i should come off the xanax, i'm pretty sure my gp will let me taper it slower which i plan to do, if the drug clinic make it too fast.
You have a truly, truly, wonderful GP !!! I'm absolutely staggered by the effort and understanding that he/she is putting into this, it's a rare, rare thing. As is a Dr who'll admit that they are unsure of the best way to go here.


I'm greatly relieved. You're in very excellent hands.

I'll be watching for updates, so hit me back whenever you want to or need to, or just feel like it .....
 

paul80

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@YippeeKi YOW !!
I only had seizures once my M.E became more severe, that was several years ago though. I called them absenses, i wasn't even aware of them happening, they didn't last long but my family noticed them. So i think that's the seizures you described, do you know anyone with M.E who has them? because it did feel to me like it was the M.E that caused them, but i haven't talked to anyone else with M.E who experienced this. I had MRI test at home for 48 hours and had absenses then so i'm curious for the results, should get them soon.

Then 1 year ago on one day i had 3 big proper seizures and was in hospital for 2 weeks so that's why i seen the neurologist and the she said thought my absenses were absense seizures. I've not had the big seizures since, just that one day.
 
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I did this towards the end of my taper off benzos and once I got the hang of it, it was very easy and the remainder of my taper went smoothly.
There are a coupl of really good demonstrations by a fello-sufferer on YouTube, where you can see eactly what she's doing, and she does a slow step-by-step.


You're right. It's the absolute best way to end a taper, when you're down to miniscule amounts of the drug. The last part of a taper is the toughest for most people, and I would think that this water method is pretty much the best way to taper down to microscopic amounts, until your brain has totally reset and can handle complete absence of diazepam or whatever.

It should be particularly beneficial when you're tapering down using the prescribed drug to do it.
I had to come off benzos because I had developed anxiety and personality changes on them, initially between doses but then that eventually became most of the time so I had no choice but to withdraw from them. From what I understand this could have been a paradoxical reaction to the drug or/and tolerance withdrawal. I believe that is quite rare.
I don;t think it is. Quite rare, that is. Clonazepam really scrambles your brain and hypothalamus, among other things.


As I've said before somewhere in these threads, so please forgive me if I'm repeating myself here, Klonopin was developed by Roche in order to compete for the relatively smaller-market dollars, comparatively speaking, in the epilepsy/seizure market.

It was when they discoverd that the profits involved weren't as large as they'd anticipated that they strated marketing it off-label to Drs for anxiety and social phobias, thru their army of short-skirted, attractive sales reps. And that's when their profits really took off.

I think Klonopin is perhaps one of the most damaging and dangerous of the incredibly damaging and dangerous benzo family, tho it's truly hard to chose, and I congratulate you on having managed to get off with no permanent damage. Well done :trophy::trophy::trophy: :hug::hug: !!!!

ANd thank you for mentioning the water-titration method, which could be a lifesaver for anyone stuck in the last 1 or 2 mg cut hell !!!
 
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So i think that's the seizures you described, do you know anyone with M.E who has them? because it did feel to me like it was the M.E that caused them, but i haven't talked to anyone else with M.E who experienced this.
I think that in your case, it was more like genetics loaded the gun, and ME pulled the trigger. So there probably is a connection, but not necessarily causation, tho who knows?
 

2Cor.12:19

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I seen a neurologist and she thinks i have epilepsy though i'm still wating on the ERG results. So my GPs are concerned about that and i'm about to start a new drug for it.

And yes my GP said they want to wait on the drug clinic's advice because they are unsure about how i should come off the xanax, i'm pretty sure my gp will let me taper it slower which i plan to do, if the drug clinic make it.
@paul80 Your doctors are exercising wisdom here. Benzo withdrawal can trigger seizures in people who have never even had one. But for those with epilepsy, extra caution is needed as seizures can be deadly. Your doctor is being cautious in waiting to see what the the drug clinic has to say first. Please, never take your tapering into your own hands without consulting your doctor first.
 
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boohealth

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I did water titration and am down to 1.05 mg of temazepam from a 15 mg pill. I have done the most super slow titration of all time. I used to think I'd like to always stay on 1 or 2 mg given the tendency to anxiety and panic disorder in my family but I'm not sure. You can definitely do it you just have to respect the sloooooooooow taper.
 
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Sorry, I posted too soon. As I was saying, it made everything better until it made it worse. I am in tolerance, and am at a place where I don’t know if I will make it.

I am super sensitive and it’s brutal trying to wd, even in very minuscule increments. I am much worse than before K. I was told to dose once at night. I halved what the doctor prescribed, taking .25 at night. I was prescribed it for muscle tightness and spasm in my back. It worked well, and I slept great for 4 years. My mornings I was functional, but by late day I was toast. The pain and fatigue began increasing during the day, so additional drugs were added after the first year of K: first Lyrica, then Baclofen (after unsuccessfully trying many others). I felt much better (still not my pre illness self), but I could do things I had not been able to for years. Then, out of nowhere, I developed chronic daily migraine. I had had occasional migraines before these meds, but nothing like this. I got Botox, which helped, but then leaked causing widespread weakness and neck problems (even though neck area was never injected).

After relief from migraines for a year, I then developed face pain. I found if I took a little extra k during the day, it went away. Again, I had only been dosing at night. I only did this once a week for a month, but when I stopped this extra dose I went into wd for many months. I also started experiencing tolerance wd. I decided it was time to get off K and reduced my dose in a very small amount. By day 8 it was brutal. I went back up in my dose and it took months to stabilize, only to find my brand of K was discontinued. Transitioning to another brand took months.

With other drugs in the mix, it’s hard to know for sure, but I do believe the klonopin is creating problems. I now suffer with crippling spasms in my pecs, thoracic outlet issues, in addition to neck pain and chronic migraines. I had none of these pre Klonopin. If I go up, or take more, these symptoms go away.

I want to be positive, but this cocktail of meds leaves me feeling overwhelmed. I am so angry, and devestated by this all. My teenage son also has ME/CFS and I am useless to help.

You are rolling the dice with this drug. My mom could go on and off xanex like it was baby aspirin. I can’t do this with K, so even genetics make it tough to know how you will respond.
Everyone needs to make the choice that’s best for them. The problem is most patients are not informed.
I believe a poll was done on this site and 1/3 people taking had severe wd sxs.
 
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With other drugs in the mix, it’s hard to know for sure, but I do believe the klonopin is creating problems. I now suffer with crippling spasms in my pecs, thoracic outlet issues, in addition to neck pain and chronic migraines. I had none of these pre Klonopin. If I go up, or take more, these symptoms go away.
That's a strong indication of TW, and while it's hard to say for sure, your guess that it's the Klonopin doing it is probably pretty right on.

Have you talked to your prescribing Dr about getting help to taper off the Klonopin? It's one of the more vicious benzos, at least in my opinion, and you'll need all the help you can get. Tapering off Klonopin using Klonopin as the taper drug can be done, but it would be expensive, difficult and slow. You'd eventually, or maybe immediately, need a compounding pharmacist to create minutely smaller doses of K every 4 to 6 weeks, possible longer depending on how your body/brain reacts to the tiny cuts, and the cost might be enough to require a cost/benefit evaluation on your part.

The other way to go would be to slowly and gradually transfer to diazepam (The Ashton Manual goes into a lot of detail and great info on this, C.H. Ashton was the Dr who first recognized the need for a taper program, and developed her system to answer that need), and then start cutting that dose once you've stabilized. I think the equivalency is 5 mgs diazepam for every 0.5 mg of K. The cuts should be as tiny as possible, and the length of time between cuts should be much longer than most Drs will agree to.


The cocktail of drugs that they've put you on does make things a little fuzzier and probably a little more difficult, but it can be done.

If you have questions, just tag me, or anyone else on this or any other thread that says anything that makes sense to you. Just put an @ in front of a user name, and that member will be alerted to your tag. Sorry if this is old info for you, but I never assume anything.

Hang in, @Capecodder .... it can get better, and it will!!!
 
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That's a strong indication of TW, and while it's hard to say for sure, your guess that it's the Klonopin doing it is probably pretty right on.

Have you talked to your prescribing Dr about getting help to taper off the Klonopin? It's one of the more vicious benzos, at least in my opinion, and you'll need all the help you can get. Tapering off Klonopin using Klonopin as the taper drug can be done, but it would be expensive, difficult and slow. You'd eventually, or maybe immediately, need a compounding pharmacist to create minutely smaller doses of K every 4 to 6 weeks, possible longer depending on how your body/brain reacts to the tiny cuts, and the cost might be enough to require a cost/benefit evaluation on your part.

The other way to go would be to slowly and gradually transfer to diazepam (The Ashton Manual goes into a lot of detail and great info on this, C.H. Ashton was the Dr who first recognized the need for a taper program, and developed her system to answer that need), and then start cutting that dose once you've stabilized. I think the equivalency is 5 mgs diazepam for every 0.5 mg of K. The cuts should be as tiny as possible, and the length of time between cuts should be much longer than most Drs will agree to.

The cocktail of drugs that they've put you on does make things a little fuzzier and probably a little more difficult, but it can be done.

If you have questions, just tag me, or anyone else on this or any other thread that says anything that makes sense to you. Just put an @ in front of a user name, and that member will be alerted to your tag. Sorry if this is old info for you, but I never assume anything.

Hang in, @Capecodder .... it can get better, and it will!!!
@YippeeKi YOW !! Thank you so much for your words of encouragement as well as your guidance on this site - I need both!! 😊

Are you tapering a benzo?

I have been dry cutting to measure my dosage but the scales are not reliable. I recently had to replace a scale and noticed wd symptoms right after. Compounding is a good idea, thx, and something I’ve considered.

I am familiar with Ashton, and wish I could switch to Valium. It seems like
But after I had enzyme testing I learned that Valium is one of the drugs I do not metabolize “normally”. It’s also contraindicated for a metabolic disease that I have, CPT2 deficiency.

Are there any folks on this site who had difficult Klonopin tapers but are successfully off and recovered? Any members who were on multiple meds? Sorry for all of the questions!

I am so grateful for this site, and that I found this thread. Wishing all here smooth tapers and full recoveries. 🙏🏻
 

geraldt52

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...it made everything better until it made it worse...
Classic Klonopin. Pretty much classic benzo. Anyone taking benzos long term are setting themselves up for this. Maybe it'll be tomorrow, maybe it'll be ten years from now, maybe they'll get hit by a bus first...but it's going to be looming out there...and if it comes, they'll regret it, as untold numbers of others have. Benzos short term, probably OK...benzos long term, not OK.
 

Seadragon

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@Capecodder Try the forum Benzobuddies for additional benzo tapering support. They can help you with the liquid or water titration method which makes dropping tiny and precise amounts, at any rate you choose, easy once you get the hang of the method.

Also @Freddd who posts here less often these days has an excellent taper for those finding tapering in tolerance withdrawal situations very difficult - if you are able to contact him. He helped a few of us here in similar "stuck" benzo situations a few years ago and pretty much saved my life!

It can and will get better but one needs to have a lot of patience and not rush a difficult taper. I am fully recovered from benzo withdrawal now if that helps!
 
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@Capecodder
It can and will get better but one needs to have a lot of patience and not rush a difficult taper.
I second that, and then take it to the 10th power. The secret to any successful taper is slow, slow, slow. I know that it's tempting to try to get off this shite super-duper fast and attempt to get back to a normalish life, but that way lies disaster, and as close to a guarantee of a failed taper and a return to a high dosage as you can get without doing a hard-cut.

The TW indicates that your brain and GABAa receptors have already been rewired and down-regulated. A fast taper doesn;t give either of them time to react, adjust, and settle down. They need time, often a lot more than you'd like, to heal between cuts, even the very smallest ones.


Taken very slow and with small cuts, the success rate is pretty encouraging.
 
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Classic Klonopin. Pretty much classic benzo. Anyone taking benzos long term are setting themselves up for this. Maybe it'll be tomorrow, maybe it'll be ten years from now, maybe they'll get hit by a bus first...but it's going to be looming out there...and if it comes, they'll regret it, as untold numbers of others have. Benzos short term, probably OK...benzos long term, not OK.
Yes. It is not a matter of if, but when. None of us are told this, and given the chance to decide with informed consent. I knew I could become dependent but was led to believe
@Capecodder Try the forum Benzobuddies for additional benzo tapering support. They can help you with the liquid or water titration method which makes dropping tiny and precise amounts, at any rate you choose, easy once you get the hang of the method.

Also @Freddd who posts here less often these days has an excellent taper for those finding tapering in tolerance withdrawal situations very difficult - if you are able to contact him. He helped a few of us her similar "stuck" benzo situations a few years ago and pretty much saved my life!

It can and will get better but one needs to have a lot of patience and not rush a difficult taper. I am fully recovered from benzo withdrawal now if that helps!
@Seadragon, thank you! Congrats on a successful taper, and good news to hear you have recovered!!

I’ve been so stuck after having to switch brands when I was already in tolerance. Is the best way to reach Fred via a reply in this thread (ie @Fredd)?