Please HELP: Should I updose to stabilize before tapering Klonopin?

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Dear Benzo Buddies,

 

I am in tolerance withdrawal on Klonopin. It's possible that I've been in tolerance withdrawal for YEARS (mistaking my w/d symptoms for PTSD or FQ toxicity, which I have). Right now I am on 1.125 mg klonopin. I am preparing to taper, but I am terrified, because I have started having cognitive problems on top of anxiety, depression, panic, and phobias. SHOULD I RAISE MY DOSE TO STABILIZE BEFORE BEGINNING TO TAPER? Many thanks for your advice.

[[Pa...]]

This is a tough question to answer, I've actually seen members say once they begin to taper they've felt a little better but of course, this isn't always the case.  The problem with going up in dose is how much is enough and how long will it take to find out?  If you start at a small dose can you wait the days or weeks it will take to fully realize the increase before deciding it's time to add more?  Some members never do find that sweet spot after an updose, others have. 

 

It's an incredibly personal decision and one only you can make, I wish we had answers for you, I know you need reassurance. 

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Thank you for your reply, Pamster. I know I asked a tough question - I noticed my post had been viewed a lot, but no one was answering.  I am feeling really scared about starting to taper when I already have so many horrible w/d symptoms. I wish there were a way to steady myself first. Thank you for the reassurance - much appreciated. 

[[Pa...]]

I see you have MS, that's certainly a complicating factor.  Is your doctor on board with an increase before you begin your taper?  Have you decided on a method?

[[je...]]

I have no experience with tolerance so I don't know what it feels like but I do have experience with tapering from a large dose of benzo's and with updosing. I can give you give that perspective if it helps. Just tapering from 1mg has taken a very long time. I have had setbacks along the way extending my taper and making it difficult to taper. I really needed to updose because I was not functional. I couldn't get out of bed after my huge reductions. However I wish I only updosed by a little and not as much as I did. Every single fraction of a milligram I updosed I needed to taper for months.

 

Sometimes it felt like I was never making progress. The mental toll it takes on you to keep at this process not feeling you're getting ahead is huge. It is only now I finally feel I'm in the last stretch and I still have a couple of months to go.

 

Good luck with your decision. We all get there in the end. It's tough but I'm sure you're tougher!

[[Re...]]

Thank you both for responding. 

Pamster: I haven't talked to my neurologist yet about updating, but i'm not sure I would trust his advice anyway - he wants me to taper .25 mg/month, which feels to fast to me. Unfortunately, my psychiatrist, because he doesn't want to admit that he lied to me when he said Clonazepam is safe to take long-term, insists that I am NOT experiencing tolerance withdrawal, but rather worsening mental illness. He wants me to start Latuda (not a chance). I'm pretty lonely, medically.

 

Jelly baby: Yikes! What a sh*tstorm that must have been to go down from 2 mgs to .5! So sorry that happened to you! I looked at your schedule. I was thinking of updosing from the roughly 1.06 mg I am currently on to 1.125 (sorry for the misinformation - thought I was on 1.125, then realized I was on an 1/8 of a .5 pill, not a quarter, which is what I was thinking of updating to). Now I think I will stay the course, with no updose, and try to avoid kindling.

 

[[je...]]

I just want to clarify kindling for you. To the best of my knowledge you don't get kindling from updosing. You get kindling from completely ceasing and then starting benzo's again and repeating this cycle. It's the stop/start and having benzo's out of your system completely that causes kindling. I don't want to discourage you from updosing if you're really struggling because it saved my life, but it also set me back a lot. I could've been healing from benzo's by now. I do believe we heal while tapering, but there's nothing like the recovery phase when you're free of this stuff!

 

Like Pamster said, I've heard from a couple of people in tolerance who said they felt better when they got lower in dose. Unfortunately that's not guaranteed, but it gives hope. This might help: http://www.benzobuddies.org/forum/index.php?topic=112032.0

[[Re...]]

Hi jelly baby,

 

Thanks for the clarification. Now I'm really freaked out, though. I was on Ativan prn from 2003-2010, then a regular dose from 2010-2014. I tapered off that with no problems whatsoever. Now I'm in terrible tolerance withdrawal on Clonazepam - it makes me wonder how I will do. 

 

 

[[Re...]]

And thanks for the great link, jelly baby! 

[[Pa...]]

I'm sorry you don't have a medical professional you can trust, but you have us so I guess that has to be enough for now.

 

I'd like to explain a little further about kindling, jelly baby has it exactly right but even if you've been kindled, its not anything to freak out over but it could explain your current situation.  You're suffering, we've established that but this doesn't mean you can't recover, it simply explains why you feel so awful and to me that's reassuring.  We all want answers and you may have yours now. 

 

To the best of my knowledge kindling won't cause a delay in your recovery and it doesn't guarantee you'll have protracted symptoms it simply means you could have terrible symptoms which you already have. 

[[Re...]]

Thank you, Pamster. I am grateful for your wisdom, reassurance, and encouragement. I'm glad I joined this forum, and you were the one who welcomed me.  I will try to think positively about this process. I wish that the people who got off of benzos easily would post their stories on forums like this. The fact that I had such an easy time tapering Ativan is probably why I feel so surprised by what I've bee experiencing, but I was stable on Ativan, whereas I got thrown into tolerance withdrawal on clonazepam when I had fluoroquinolone toxicity in 2017 - I had no idea until recently that I was in withdrawal. Looking forward to getting off this poison. Thanks again for your help.

[[je...]]

I wish that the people who got off of benzos easily would post their stories on forums like this.

 

My taper has been fairly good. I have been functional the whole time (after my disastrous start when I didn't know what benzo's were). I don't have a horror story. My biggest setback was long Covid and that's not benzo related. Don't get me wrong, it has been challenging at times, but I'm really not suffering like a lot of people here.

[[Re...]]

That's reassuring to hear! Glad to hear your story is horror-free!!  My anxiety, in combo with my MS and PTSD, has proven difficult, and I've had to stop working (as a private music teacher) as a result. Too much anxiety - especially the first half of the day. Now I haven't driven my car in two months, and that really concerns me. I'm isolated anyway, because I can't afford to get Covid (MS), so driving was my last way to feel a bit of life. So sorry to hear you have long Covid. I hope the medical establishment is making some progress towards treatment and healing.

[[pi...]]

That's reassuring to hear! Glad to hear your story is horror-free!!  My anxiety, in combo with my MS and PTSD, has proven difficult, and I've had to stop working (as a private music teacher) as a result. Too much anxiety - especially the first half of the day. Now I haven't driven my car in two months, and that really concerns me. I'm isolated anyway, because I can't afford to get Covid (MS), so driving was my last way to feel a bit of life. So sorry to hear you have long Covid. I hope the medical establishment is making some progress towards treatment and healing.

 

Hello,

 

I'm late to this thread. I'm also a private music teacher and have been absent from the forum due to preparations for the spring recital.

 

I'm sorry you've had to give up teaching due to MS and PTSD.  I did teach throughout my taper and recovery.  The distraction was good for me overall. But your situation is much different and it's important to protect your health during these challenging times. I taught remotely for 15 months. Never did I imagine I'd be doing lessons via Zoom, Skype or Facetime.  It served it's purpose but I was happy to return to in person lessons last summer. I continue to require masks of all my students. 

 

It so sad to have a doctor defend the use of benzos, saying that all the symptoms are due to something else, a worsening mental illness.  I had a similar experience. I knew the benzo was making me sick and finally found a doctor that agreed with me.  At my last visit with the prescribing doctor I asked him if I need to stay on benzos. Of course he said yes but I obviously proved him wrong.  Coming off benzos was the best decision I've made for my health and wellbing.

 

I wish you the best with your taper.  Mine was rough, but I hadn't found this forum.  There is so much good information here as well as support. This is doable!!!

 

PG 

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Thanks so much, pianogirl, and thank you for you [atience with my reply. I, too, taught my studio lessons online for most of the pandemic. It's only since my benzo withdrawal symptoms have become unbearable that I have had to stop. The MS and PTSD are just outliers at the moment (though they're certainly not helping). Dealing with ignorant doctors has been the worst. The medical establishment needs a total overhaul where psych meds are concerned.

 

Cheers to you! 

[[Co...]]

In response to your question I just wanted to add for me updosing didn't do work too well. I was at .125 a while and couldn't stabilize so my doc had me updose to .25. It worked a couple days but then I started to feel exactly like I had at .125 so kind of wish I would have not done that.

[[Re...]]

Thank you for that feedback - it's very helpful to me. 

[[pi...]]

Thanks so much, pianogirl, and thank you for you [atience with my reply. I, too, taught my studio lessons online for most of the pandemic. It's only since my benzo withdrawal symptoms have become unbearable that I have had to stop. The MS and PTSD are just outliers at the moment (though they're certainly not helping). Dealing with ignorant doctors has been the worst. The medical establishment needs a total overhaul where psych meds are concerned.

 

Cheers to you! 

 

Sadly, many of us received incorrect or just plain wrong information about these types of drugs.  I did.  I carried a lot of anger for a while, along with guilt. The doctor that did help me during my recovery said I had nothing to feel guilty about, I was trusting my doctor to have my best interests at heart.