benzodiazepines

[purplelady]

It's always good for your doctor to confirm you are ready to get off your medication and to be informed in case something goes wrong, but as for the tapering schedule itself the problem is that most doctors think you can taper off in a matter of 3 weeks.

As long as it's not life threatening, they're not much concerned with how much suffering you'll go through.

This is true.
It has to be an addiction doctor.

 

[2Cor.12:19]

This is true.
It has to be an addiction doctor.

Not necessarily.

 

[hikinglo]

@hikinglo - Thank you for sharing your story. Now that 9 more months have passed since you posted this, how are you doing now? I hope you're doing better.

I started tapering off .75 xanax very slowly in Oct, and am only 1/3 of the way there. I'm doing no more than 5-10% cuts every two weeks. If all goes well, I hope to be off by July or August. I was on xanax for 21 years but have had ME/CFS for 33. I too am hoping my "veteran" ME/CFS status will help prepare me for this since I'm already home-bound and feeling lousy most of the time anyway.

If you could do it over, would you taper slower? Any suggestions would be helpful.

@2Cor.12:19 Thank you. 30 and 21 years - wow, you have me beat! Here's to hoping you weather your taper well!

Yes, in hindsight I think I could have gone slower and still probably distinguished between w/d & ME, which was one of my goals. I did slow down in the final month, when symptoms were snowballing to unbearable.

Let's see... 9 months since I posted this (and forgot that I did)... well, cognition has improved albeit minimally. I'll take what I can get! Ups and downs, not not much energy after ADLs to keep up with some speech, math and other brain exercises. For the first 2 years (including taper and post-withdrawal, starting Jan 2017), the w/d symptoms dominated. Like having a few hundred volts plugged into my upper spine, (full symptom list far too long to describe....)

This past year, post w/d symptoms began to subside a little, enough to where I notice the ME symptoms more again. But now I know my ME is much worse than before taking clonazepam. I look back to the things I was able to do even with moderate-severe ME and curse this dang benzo! Can't say the crossover / overlap of post w/d & ME symptoms is very pleasant, hah! (Sense of humor is my main survival mechanism.) I have no doubt the wear and tear of the hyperstimulation of the relentless glutamate flood that I still feel in my bones - just to a lesser degree now - is akin to doing continuous exercise with ME.

I did have a 'setback' from this August through early November this year (there is a good article I'm thinking of on Setbacks somewhere in the benzo info community). The setback was different from the 'waves' and 'windows' described in the Ashton Manual. It was like being pretty suddenly thrown back about 1 year in this post benzo healing process. (I describe it as being sprayed with a non-lethal dose of Raid. Nothing short of acute neurotoxicity.) But just like the writer of the article I'm recalling, the severe symptoms lasted about 10 weeks rather than 10 months. I'm back on what feels like a healing track, albeit a little more frazzled for the experience.

So, yeah, being a veteran pwME has helped me weather this. Especially with no support and not much energy left to even look at forums like Phoenix or BenzoBuddies.

It sounds to me like you are doing the right thing. My only suggestions would be what you probably already know - slow your taper if the symptoms become unbearable, expect poor sleep, and if you have an understanding doctor and can afford the co-pays, take advantage of him/her. If you have good support (I don't - been doing this virtually pretty isolated), also take advantage of that. I keep a symptom journal. I did find a pattern of 'waves' and 'windows', with no apparent trigger. I did find things that reliably intensify my symptoms, and work on building a tolerance now.

I sincerely wish you the best, and am sorry you have to go through this too. I'm hoping you're one of the ones that gets through it fairly unscathed. Feel free to update your progress any time. I wrote a later post about this on this forum (1 of about 3 posts I've been able to follow through in 3 years here or on benzobuddies) - too fried after typing and editing this one to find it and link here.

 

[2Cor.12:19]

@2Cor.12:19

My only suggestions would be what you probably already know - slow your taper if the symptoms become unbearable, expect poor sleep, and if you have an understanding doctor and can afford the co-pays, take advantage of him/her. If you have good support (I don't - been doing this virtually pretty isolated), also take advantage of that. I keep a symptom journal. I did find a pattern of 'waves' and 'windows', with no apparent trigger. I did find things that reliably intensify my symptoms, and work on building a tolerance now.

I sincerely wish you the best, and am sorry you have to go through this too. I'm hoping you're one of the ones that gets through it fairly unscathed. Feel free to update your progress any time. I wrote a later post about this on this forum (1 of about 3 posts I've been able to follow through in 3 years here or on benzobuddies) - too fried after typing and editing this one to find it and link here.

@hikinglo - Thank you so much for taking time to respond, especially when you're not feeling well. I'll look for your other posts.

I'm so sorry you went this alone without medical support. Benzo buddies is helpful, but can be really depressing.- they need more positive stories. Then again, their group is similar to pwME in that we tend to come around looking for encouragement and answers when we're completely miserable, but stay away when things are going better. At least that's what I do. LOL.

Yes - that's good advice - I haven't proceeded to the next cut until I'm stable. I've done 5 cuts and so far haven't had any problems sleeping (knock on wood!). That might be because I take a small dose of beta blocker and low-dose naltrexone at bedtime. So far, the only w/d symptoms I've noticed is that I get really cranky, a wee depressed, and more fatigued around the 3-4th day after a cut. By the end of 2 weeks I'm back to baseline. Hope it stays that way.

Thanks again, and I hope you continue to improve.

 

[hikinglo]

@hikinglo - Thank you so much for taking time to respond, especially when you're not feeling well. I'll look for your other posts.

I'm so sorry you went this alone without medical support. Benzo buddies is helpful, but can be really depressing.- they need more positive stories. Then again, their group is similar to pwME in that we tend to come around looking for encouragement and answers when we're completely miserable, but stay away when things are going better. At least that's what I do. LOL.

Yes - that's good advice - I haven't proceeded to the next cut until I'm stable. I've done 5 cuts and so far haven't had any problems sleeping (knock on wood!). That might be because I take a small dose of beta blocker and low-dose naltrexone at bedtime. So far, the only w/d symptoms I've noticed is that I get really cranky, a wee depressed, and more fatigued around the 3-4th day after a cut. By the end of 2 weeks I'm back to baseline. Hope it stays that way.

Thanks again, and I hope you continue to improve.

Yeah, depressing is why I'm very selective about subject lines when I do make rare attempts at browsing message boards. I turned to benzobuddies Success Stories often as a distraction.

I remembered something a while after I clicked off the last reply: The valium crossover described in The Ashton Manual. I've skimmed many folks' stories about having to do the crossover at some point with short acting benzos such as Xanax. I'm guessing you already know this though. Since I was on a long-acting benzo (Klonopin), I just stuck to it through the bitter final slivers. Also, as with me, I saw it was common for the symptoms to worsen around half-dose, and for the rest of the withdrawal. A lot of folks slowed or did the valium crossover at that time. Hope you manage to avoid that though!

But it seems to me you're doing very well so far, which may be a good sign. I can only guess that your slower taper and other meds are helping you through. I hope you are one of the lucky ones! I mean that sincerely.

BTW, just looked up that thread I mentioned:
https://forums.phoenixrising.me/threads/looking-for-benzodiazepine-damaged-pwmes-klonopin-etc.77873/

 

[hikinglo]

@hikinglo - Thank you so much for taking time to respond, especially when you're not feeling well. I'll look for your other posts.

I'm so sorry you went this alone without medical support. Benzo buddies is helpful, but can be really depressing.- they need more positive stories. Then again, their group is similar to pwME in that we tend to come around looking for encouragement and answers when we're completely miserable, but stay away when things are going better. At least that's what I do. LOL.

Yes - that's good advice - I haven't proceeded to the next cut until I'm stable. I've done 5 cuts and so far haven't had any problems sleeping (knock on wood!). That might be because I take a small dose of beta blocker and low-dose naltrexone at bedtime. So far, the only w/d symptoms I've noticed is that I get really cranky, a wee depressed, and more fatigued around the 3-4th day after a cut. By the end of 2 weeks I'm back to baseline. Hope it stays that way.

Thanks again, and I hope you continue to improve.

Yeah, depressing is why I'm very selective about subject lines when I do make rare attempts at browsing message boards. I turned to benzobuddies Success Stories often as a distraction.

I remembered something a while after I clicked off the last reply: The valium crossover described in The Ashton Manual. I've skimmed many folks' stories about having to do the crossover at some point with short acting benzos such as Xanax. I'm guessing you already know this though. Since I was on a long-acting benzo (Klonopin), I just stuck to it through the bitter final slivers. Also, as with me, I saw it was common for the symptoms to worsen around half-dose, and for the rest of the withdrawal. A lot of folks slowed or did the valium crossover at that time. Hope you manage to avoid that though!

But it seems to me you're doing very well so far, which may be a good sign. I can only guess that your slower taper and other meds are helping you through. I hope you are one of the lucky ones! I mean that sincerely.

BTW, just looked up that thread I mentioned:
https://forums.phoenixrising.me/threads/looking-for-benzodiazepine-damaged-pwmes-klonopin-etc.77873/

...and yet again another ME / benzobrains moment... I just went back to refresh my brain about the above link and see you made some posts there, 2Cor. I'm attempting to read a little now... (is there an embarrassed emoji?)

 

[2Cor.12:19]

...and yet again another ME / benzobrains moment... I just went back to refresh my brain about the above link and see you made some posts there, 2Cor. I'm attempting to read a little now... (is there an embarrassed emoji?)

- @hikinglo - I looked it up yesterday and found all my comments on your post too - duh!

I don't want to CO to Valium - too many horror stories, including my own nightmare experience when I went in for outpatient surgery and had a paradoxical reaction to VERSED and was sent home.

I do fine on Xanax so I plan to keep dosing 4 x daily until they're all crumbs - then start dropping one dose at a time.

Now that I'm down to 4 equal doses of .125 (I used to take another .25 at bedtime), I'm holding until I see my doc in January. Since things are going reasonably well, I'm toying with the idea of doing long holds (several months) periodically even when I'm feeling stable. I'm thinking this might give me a chance to completely adjust to the lower dose before upsetting my system again. Seems most of the "horror" stories on BB are from people going too fast or from tapering more than one drug. Those folks often continue having sx's long after jumping.

I don't know if my plan will work but I'm going to try if my doc approves.