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Tapering off the Klonopin...does it get better?


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#1 NotOtherwiseSpecified

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Posted 08 March 2010 - 01:25 AM

Hello all. Ok, a little background info re: my situation. I'm a 32 y.o. newlywed who has pretty severe PTSD/Panic/Anxiety/Depression/Chronic pain (like fibromyalgia, but without the formal dx) issues. I'm on a bunch of meds, and I've tried so many (from all classes of psych drugs plus some blood pressure ones) that didn't work. The goal is for me to get off of my meds while I'm still during healthy child-bearing years. I've been working with a p-doc, t-doc, and gp with all of this. During the last stages of planning my wedding about 7 mos ago (and the beginning of the trauma counseling), I totally went into anxiety/panic hell and, I went thru my gp because even though I've been thru some horrific times, and I've had symptoms of lots of things that could point any number of diagnoses, this was worse because it was constant and excruciating and escalating. I was rx'ed Xanax for the first time in my "mentally interesting" experience. We also upped my Klonopin (been on it for about 7 years at gradually increasing doses) to 4 mg/day. Anyway, with such issues at hand, I found a p-doc to work with instead of my gp. Did I mention that I'm uninsured, have income, but not enough to afford out of pocket doc visits and meds, yet somehow too much to qualify for assistance? Major roadblock!!

So, back to the reason I'm posting this (pardon me if I get off-track, as I also have ADD- or so one psychiatrist said, and the Adderall has worn off for today!)...upon first visit w/ my p-doc, he upped the Klonopin to 6mg/day and allowed me up to roughly 2mg/day Xanax PRN, which was less than I was taking at that time. Also at the time, I was also taking 2400mg/day of gabapentin, 2mg guanfacine (totally didn't work for anything!), 40 mg Adderall (it calms me more than the benzos), up to 300mg trazodone PRN for sleep that I alternated with 30mg temazepam (Restoril- benzo specifically for sleep). So, in short, we are already throwing quite a bit at this crap I'm going thru, yet making no progress. When this increase to 6mg of Klonopin failed miserably to stabilize me, we added nefazodone, which isn't a likely drug to work for most, but since I'd already tried all of the others that I had, we figured it'd be worth a shot. It actually potentiates your benzos by approx 20%, and the doc thinks that this med, should it do more good than harm, is a good candidate to help ease the taper. It has it's side effects, but for me they were tolerable (orthostatic hypotension, dry mouth, cognitive dulling, memory issues-nothing terrible...just losing my keys and such a lot!), and it did help lift my mood a bit and calm me down a bit.

Upon returning from the honeymoon, when I figured the everyday stuff was going to be less anxiety-ridden, I found that it wasn't, yet I still wanted to do the taper. I kinda don't have a choice if we want the kidlets! So, I started my taper at 0.25 mg/week. At first, it was ok, but then the rebound anxiety would come a' knockin'. I really just wanted to get this over with because it's not unlike dealing with heroin withdrawals, except not nearly as intense, acute, or short-lived. I got down to 4 mg/day on Klonopin over 2 months, and it wasn't long before I was just climbing the walls wanting to jump out of my skin, except for the days that I was so depressed that I literally saw no reason to get out of bed. I did speak to the good docta about this, and he told me to go back up to 5 mg/day then decrease by 0.25mg every 2-3 weeks once I was stable enough. I didn't hear that last part about being stable enough, but followed the other instructions. I realized that after a month, I was absolutely no better off for having gone back up and decreased more slowly.

Clearly, this is not going to be an easy thing for someone in my situation. Had I been informed of how one becomes dependent on benzos (physically), and heard the horror stories of having to taper off of the stuff, I'd have gone a different route! Unfortunately, here I am living the horror story. I'm wondering how many out there have had to taper off of large amounts of benzos without totally flipping their wigs. I've attempted Seroquel (and most of the other AAP's), and had a paradoxical reaction to them, so no Seroquel to take the edge for me. I've tried mood-stabilizers with either too many side effects or no effects at all. Antidepressants (SSRI's, SNRI's, tricyclics) were just fuel for the anxiety bonfire. I've been clean and sober for a few years, and I'd like it to stay that way! I'm clearly running out of options, medically speaking. I'm going to be giving Topomax a shot due to frequent migraines and the minute chance it will do me some good rather than being really agitating for me. Of course, I've tried cognitive-behavioral stuff as well as some dialectical behavioral stuff, but in the face of intense irrational fear (or the fear that I'll have intense irrational fear at a really inopportune moment), counting how many green items in the room, etc. doesn't quite cut it.

Any ideas, suggestions, experiences that anyone would like to share would be greatly welcomed. If I've left out info or put in too much, please feel free to ask/virtually smack me upside the head. Thanks!!

-LF


#2 gizmo

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Posted 09 March 2010 - 02:06 AM

Believe dianthus when she says don't get pregnant until you are stable. Pregnancy tends to make crazy people crazier, and you don't want to be in that boat with limited medication, now do you? Go take a look at the pregnancy board to get an idea of what I mean. And I was one of those lucky ones (I was undiagnosed with bipolar at the time) who went into a state very close to post partum psychosis. I didn't sleep for a couple of days at a stretch on multiple occasions and was very OCD and agitated would be a very mild word for what I was.

That many benzos are going to take you a LONG time to get over being dependant on. Just take it slow, and when it's too much for you, back it up to the last dose that worked for you, stay there for a week, and try lowering it again. Lather, rinse, and repeat.
Diagnosis: BP I with Psychotic Features, GAD, ADHD, Chronic Migraines, various physical stuff.
Meds Currently On: Depakote 2000 mg, Risperdal 8 mg, Latuda 80 mg, Prozac 60 mg, Vyvanse 70 mg, Propranolol 40 mg BID, Klonopin 2 mg BID PRN
Meds Sort-Of Mental Related: Lipitor 40 mg, Zofran 4 mg PRN, Fioricet PRN, Stadol PRN, Botox received on 8/16/13

I post on an iPhone, so please forgive grammatical errors or strange word inclusions. It's the auto correct!

#3 neingesicht

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Posted 09 March 2010 - 12:07 PM

Some decent research has been done with using a substitute benzo on your way down, such as valium. Dr. Heather Ashton had a manual for recovery, and there is a website that has decent information. http://www.benzo.org.uk/ It is going to take a long time though, I tried and managed to get down to .125 mg a day but wound up needing it after all. Best of luck to you.

Dx Bipolar


Lithium 1500mg
Lamictal 150mg
Effexor 300mg
Klonopin 1.125mg
Armour 105mg
 


#4 NotOtherwiseSpecified

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Posted 11 March 2010 - 09:14 PM

Thanks for the replies. I was well aware when I started down this path of tapering that I wasn't going to be done anytime soon. At first, my doc made it sound like it was going to be unpleasant, yet manageable. Then he told me the truth...anyway, as for dx: I've been given a number of them over the years, and many overlap with diagnostic criteria, but the general consensus is PTSD with a potential additional anxiety disorder of some sort. Lucky me!! I am currently in talk therapy, and even giving TFT a shot, to deal with the trauma stuff, etc. I definitely don't plan to get pregnant until I'm stable...if that ever occurs. As a migraine tx and last resort, I'm starting Topamax. That could make things much better or much worse. We'll see how it goes!

#5 ninjabunny

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Posted 11 March 2010 - 09:49 PM

Thanks for the replies. I was well aware when I started down this path of tapering that I wasn't going to be done anytime soon. At first, my doc made it sound like it was going to be unpleasant, yet manageable. Then he told me the truth...anyway, as for dx: I've been given a number of them over the years, and many overlap with diagnostic criteria, but the general consensus is PTSD with a potential additional anxiety disorder of some sort. Lucky me!! I am currently in talk therapy, and even giving TFT a shot, to deal with the trauma stuff, etc. I definitely don't plan to get pregnant until I'm stable...if that ever occurs. As a migraine tx and last resort, I'm starting Topamax. That could make things much better or much worse. We'll see how it goes!



You can do it. I was massively doped up on Klonopin and got off it eventually. Then tried Ativan (not as addictive-feeling) but the dream med for me was valium. Saved my life.

I know how hard it is to deal with the competing urges of parenthood and your disease. I agonized over the decision - and decided not to have kids. I'm 35 now, and just been too unstable that I 1) was afraid I would flip out unmedicated + hormonal and 2) feared that I would not be a stable influence on my child. It's an individual choice, and I will always feel like I missed out on an essential life experience.

But to take care of anyone else, you have to take care of yourself first. This I know. I wish you well.
ninjabunny
BPD I rapid cycling dx '98
ADHD - or just poor attention span
generalized anxiety disorder
too many meds over the years to count - poor liver
currently adderal, trazadone, pristiq, geodon, valium
Have had ECT
4 hospitalizations
still fighting and optimistic
resilient and stubborn as hell
where there's hope there's life

#6 NotOtherwiseSpecified

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Posted 27 February 2011 - 09:50 PM

Hadn't read this for a while, so thx again to everyone. It's going slow, that's for sure, but it's going. I'm starting to wonder if I'll ever be able to have children at this rate. I am going to just keep trying to get stability and go from there. Anyone know who manufactures that?
-L

#7 NotOtherwiseSpecified

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Posted 28 February 2011 - 11:39 PM

Mackie- Thanks for the smile! I meant the stability, but you probably figured that. Ninjabunny- I'm 33, just got married about a year and a half ago. Until I met my husband, I truly never believed I'd be a decent enough parent to ever attempt it, but things have changed over the last 8 years! I knew when I was in my 20's that there was no way in the world I'd be ready for parenthood anytime soon because I was just starting to experience my symptoms severely and more regularly as I got older. It sort of overwhelms me to even think about having that discussion with my husband should I realize that I am not likely to be a healthy parent. That's for another place on the forum, of course, and I don't want to go there right now! Neingesicht- Thx for the resources. I've seen the site before, I believe, and I'm familiar with the concept of a cross-taper. I'm not opposed to it, personally, as I'm on a really long-acting benzo and a really short-acting benzo (Klonopin and Xanax). That just can't be good for stability even when they're taken at evenly spaced intervals. Anyway, my pdoc is of the opinion that a benzo is a benzo is a benzo...so, why not a cross taper with Valium? He just sees it as complicating the situation, and clearly it's complicated enough. I have been able to reduce my total benzo daily intake from 8 mg total to 5.5 mg (occasionally more as needed in emergencies), but it's taken me forever, and trying to cope with any of this crap seems to produce plenty of bumps along the road. 5.5mg should totally be doable in a year if I could just get to the point of stability to actually take on any extra stress that the taper is going to produce. There should be a required waiver to sign before you get put on these drugs by docs who don't take into consideration that I'm going to become dependent, need more meds, and then eventually have to fight like hell to stay sober and sane when I decide to stop taking them to try to have a family (I was prime child-bearing age when I was put on all of this, so maybe it could've come up in a conversation sometime?). I didn't research my meds much 10 years ago, so I didn't know until it was too late. Of course, it's shown that all of my research hasn't exactly solved things, but at least I'm able to make decisions based on actual data and personal accounts. I do appreciate those of you who have given me hope that this is possible. I need it right now, even if from strangers (bad choice of words, perhaps ;-) ) online!
-L





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