Anyone successful after being "kindled"

Please there has to be a success story out there...Taken off klonopin last christmas switched to ativan tapered off ativan over 6 months and within one week had suicidal akathisia so put back on 1 mg. klonopin to save my life.  now so retarded like i'm taking 50 mg.  functional medicine doc said stay on until he can find "underlying causes" from tests in 3 weeks which so far are low iron and low vit. d, but think i have totally kindled myself from what i just read on trap website.  choice of killing myself or being totally retarded.  Anyone ever survive something like this.  keep trhing to talk myself into thinking i will stabilize and it won't be as bad, or something underlying will make it better and i'll taper off.

 

what does stabilize mean?  that's not what i'm dealing with is it?  i'm dealing with the kindling effect right?  been on klonopin 3 weeks--should i start tapering again or will that mess me up more?  is my doc full of crap?  will it be easier cuz it's a longer acting benzo?  I've been shaving off a little bit every night hoping to not really be on

Memom is this what you are referring to from the TRAP site?  Just so people know...?16) Question: I am in protracted withdrawal and I am considering reinstating, should I?

 

Answer: Reinstating or "going back on" after being off benzos for more than a couple of weeks is fairly unpredictable and is generally advised against unless the person is severely suicidal. The results from reinstating for protracted withdrawal are very unpredictable. It seems a lot of people find the pills don't work the way they did before they came off. Some people do get relief of withdrawal effects by reinstating for protracted withdrawal but often people either get no relief or only a few days of relief before feeling like they are back in withdrawal again even on a stable dose. Occasionally people actually feel worse, sometimes developing severe paradoxical reactions when reinstating for protracted withdrawal. When you come off the pills your benzodiazepine brain receptors switch states and there are all sorts of complex chemical and physiological changes involving gene transcription coding when you go into the post withdrawal phase and thus going back on pills has unpredictable effects in a lot of people. Some people from reinstating for protracted withdrawal do get relief but for many others they get little or no relief and for some they even feel worse and go paradoxical. In laymans terms you shouldn't generally interupt the delicate healing process of the central nervous system once it has begun. Another problem is to use the medical terminology, is the kindling effect, the kindling effect is where multiple withdrawals, putting the body into withdrawal and out of withdrawal multiple times can cause a hypersensitisation of the receptor systems and thus causing the nervous system to be hypersensitised which can lead people to not being able to stabalise on their benzos as well as they used to and as well as to feeling toxic on the drugs and as well as finding that each withdrawal is worse than the previous. In simple laymans terms it is often but not always harder the 2nd time around and even harder the 3rd time around at withdrawal, in people who have completely withdrawn and then went back on. This does not seem to be the case for people who have partially tapered down their dosage and then upped dose. It seems only the case for those who have completely withdrawn for more than a couple of weeks and then went back on multiple times.

 

 

yes

yes.. back in January I reinstated Klonopin from 2.25mg to 3mg and after 3 weeks felt fine..

then back to Valium again.. the chart is in my progress log, you can see where I reinstated, page 1.

 

Keryn.

how nmany times have you been on and off over time

so should i try to cross over to valium?  oh dear God I'm so developmentally disabled and dangerous as a result.  From klonopin to ativan to klonopin to valium?  or do i just try to start tapering the klonopin now or am i too fragile now?  feel like i'm reaching tolerance already although the brain fog is 100 times worse.  is this becuase my brain can't take anymore damage or because i haven't "stabilized".  more alzheimer's every day--forgetting to eat even

Please there has to be a success story out there...Taken off klonopin last christmas switched to ativan tapered off ativan over 6 months and within one week had suicidal akathisia so put back on 1 mg. klonopin to save my life.  now so retarded like i'm taking 50 mg.  functional medicine doc said stay on until he can find "underlying causes" from tests in 3 weeks which so far are low iron and low vit. d, but think i have totally kindled myself from what i just read on trap website.  choice of killing myself or being totally retarded.  Anyone ever survive something like this.  keep trhing to talk myself into thinking i will stabilize and it won't be as bad, or something underlying will make it better and i'll taper off.

 

what does stabilize mean?  that's not what i'm dealing with is it?  i'm dealing with the kindling effect right?  been on klonopin 3 weeks--should i start tapering again or will that mess me up more?  is my doc full of crap?  will it be easier cuz it's a longer acting benzo?  I've been shaving off a little bit every night hoping to not really be on

 

 

Ok maybe this may help.  I was off and on benzos for 5 years including Xanax, Restoril, Klonopin, Ativan, Ambien.

Each time I went off, I probably had many symptoms, but none enough to stop me in my tracks.....

 

This year was different.  Each time before, I was completely off for awhile.  This year I started on klonopin in Feb, switched to a huge dose of ativan in May.  Did a c/t, thought I was going to die....THIS was NEw for me.  I reinstated at a subtherapeutic dose and felt horrific, suicidal terribly symptomatic....like you, I hated it and wished to die.    I did a slightly more reasonable c/t (you can see my progress note, Postcards....) I won't bore you with details. 

 

I am almost 4 months off.  I won't lie Memom, the first couple of weeks were horrific off the drugs.  I was scared to death.  Around 4-6 weeks off things got remarkably better, so so much better.  Today, a minimum of symptoms: some early morning anxiety, some insomnia and agoraphobia.  Minimal, really. 

 

So now you are on Klonopin 1mg?  You were completely off for  a week after a 6 month taper?  What dose were you on at end of taper, zero or did you jump off?

 

Did the akasthisia just begin when you completely stopped?  Have you been on other meds?

 

To stabilize means you at at a level that you are comfortable without horrific side effects.  Able to deal.  To stabilize you need to be on enough med to be equal to what you feel you were stable at.  I wouldn't continue cutting while you feel so bad.  If you are cutting nightly aren't you tapering too quickly?

 

I have many questions, I am new to this site.  Feel free to PM me or what ever.  I am sorry you are feeling so bad but please don't hurt yourself.  My experience is that you will feel better.

 

so should i try to cross over to valium?  oh dear God I'm so developmentally disabled and dangerous as a result.  From klonopin to ativan to klonopin to valium?  or do i just try to start tapering the klonopin now or am i too fragile now?  feel like i'm reaching tolerance already although the brain fog is 100 times worse.  is this becuase my brain can't take anymore damage or because i haven't "stabilized".  more alzheimer's every day--forgetting to eat even

 

 

Have you read Ashtons manual?  So many people have had success crossing to valium.  the directions are simple, it does not matter how many benzos you have been on.  I'm sure people will chime in to encourage you and advise.

Your symptoms are reversible, you do not have permanent damage.  Your writing is clear and concise.

originally was given valium for the akathisia but it just made me really out of it and didn't touch the akathisia

 

so tapering the klonopin will put me back into the akathisia thing won't it?  i went through so much hell to get off ativan only to get akathisia at the end that i didn't stand a chance.  all i cared about was one more day with my daughter cuz i was gonna kill myself--my girlfriend came over and tried to hold me down and i really wanted to hurt her too.  what kind of animal did this make me? 

originally was given valium for the akathisia but it just made me really out of it and didn't touch the akathisia

 

so tapering the klonopin will put me back into the akathisia thing won't it?  i went through so much hell to get off ativan only to get akathisia at the end that i didn't stand a chance.  all i cared about was one more day with my daughter cuz i was gonna kill myself--my girlfriend came over and tried to hold me down and i really wanted to hurt her too.  what kind of animal did this make me? 

 

I think the goal for right now, is for you to be stable on a dose for several weeks before you start tapering again.  That will give your Doc a chance to complete the testing. 

that was the plan, but the klonopin is taking more and more of my brain away every day--feels like i have less and less every day--that's not stabilizing is it?

Hi Memom,

I am very familiar with the kindling effect as that is what I have dealt with during my last and final taper off of klonopin as I crossed over to valium.  I was on xanax years ago and did a CT off of it as I did not know it was addictive etc.  I think this was 95/  The CT was awful and took me almost a year to recover from, and I did not know that it was abrupt withdrawl from the xanax that made me so sick.  I did fully recover though.  Years later I was put on klonopin after the sudden death of my youngest daughter.  I have a very high tolerance and my dosage quickly upped to 4 mg. of klonopin, which had zero effect on me.  Then all kinds of various ailments, depression etc. because of tolerance issues with the klonopin.  Then I had my "ah ha " moment and discovered the the benzo's have been my problem.  I read the Ashton manual, tapered starting at 80 mg. of valium.  Midway thru the taper I began to experience horrible withdrawl symptoms that I really did not expect.  I thought it would be alot easier, but it was not.  Each week was horrible and a hell at times and each cut was terrifying.  But, somehow I knew that this had to get better. The first several months after tapering were very hard, but then I started to get some brief windows.  It is now 8 mos. and yesterday I had the most wonderful, peaceful, great window.  If I did not have these then I would surely lose hope.  Some days are really good and some days are still really bad, but I am Positive without a doubt that healing does come. But, I must say that the second time around tapering was without a doubt much much more difficult then the first time with my CT, due to what my doctor and I believe to be the kindling effect.  Just keep hanging in there and cutting.  Once the poison is out of you, the healing will begin.  Don 't let the kindling scare you,  it's difficult for all of us,  but I am proof that is can be done and healing comes in time.        Ginia

80 mg. valium?  i was practically in a coma at 2 mg.

so dumb now i don't know how to taper or if i do it now or what and what happens if the suicidality comes back?  how the hell do you know the right thing to do?  all i know is i was so looking forward to getting my brain back and now it is more compromised than ever.  handled quite a bit of pain and suffering but the uncontrollable akathisia and the subsequent reinstatement on klonopin made me say my goodbyes to everyone

how nmany times have you been on and off over time

 

Klonopin Valium Klonopin Valium

Hello Memom

 

 

Reinstatement of Benzo's appears to have decreased your suffering.

 

Do you need a higher dose to be OK?

 

Would you be better off long term finishing what you started and suffering through withdrawal?

 

No one, not you, your husband or doctor can know for sure.

 

 

I was quite happy at 6mgK with my only concern being a diminished enjoyment of life.

 

Fear of a potential unplanned C/T (loss of Benzo source) or physical damage (including brain damage) from long term benzo use motivated me to suffer my withdrawal.

 

The thought of kindling has kept me moving forward on my effort to be benzo free.

 

 

You decided to reinstate because your suffering was intolerable.

 

Would the suffering have lessened with time? Maybe or maybe not.

 

 

Too much of a guessing game for me and I am sure you.

 

Maybe just lean on the one you trust most, your husband for any decisions you make after you have the test results.

 

 

Teakettle

 

 

no way could I go up because I'm so developmentally disabled now--my husband is the one saying now that we have to start working on the klonopin withdrawal

Memom,

 

What is your dose, and what Benzo now?

 

Keryn.

1 mg. klonopin

1 mg. klonopin

 

It's good your Husband is willing to work with you..

If I were you, I would pick a course and taper off the Klonopin, you've been on higher doses?

 

Keryn.

so scared of akathisia coming back, but i know it will--my brain is stuck in that pattern from something or another being added or taken away

so scared of akathisia coming back, but i know it will--my brain is stuck in that pattern from something or another being added or taken away

 

I've had this sx too, but from AntiPsych's.. I know the "can't sit still feeling."

 

Keryn.

no i've had that for a year, but akathisia is sudden, violent, jump off a cliff feeling unlike regular agitation

no i've had that for a year, but akathisia is sudden, violent, jump off a cliff feeling unlike regular agitation

 

Yes that's the same kind I had..

 

K.

what did you do?

 

Doc wants me to cut 1 mg. to .75 for 5 days, .5 for 5 days and .25 for 5 days after being on for 3 weeks.  what will be left of my brain?  i know no one knows.

Okay. Ordinarily I wouldn't say this stuff, but you sound scared to death.

 

First off, the symptom of "losing your mind" is most likely the effect of going back on such a high dose after you were off for a while. I got it, too, when the doc took me up. It does get better over time.

 

If your akathisia is gone, it is unlikely that you are in some form of tolerance. The kindling effect is merely that it's harder to get off than it was previously, not that you have a weird side effect that you didn't have before.

 

I honestly would recommend staying on the drug for a while. You definitely need to stop shaving your dose. I'd try to stabilize for at least a couple weeks before tapering.

 

Your doctor's taper is way too fast. You should actually go slower than you did last time, maybe the 5% drop every two weeks. When you get towards the end, though, go even slower. Do not rigidly stick to a schedule--if you feel worse after a drop, hold for a while.

 

I don't know exactly why you had problems with your previous taper, but I can guess. 5% per week is not overly fast, but, as you get towards the end, you need to go slower. Also, Ativan is not a good drug for crossing over. And Klonopin, since it binds really tightly to BZD-GABA receptors and has a few other effects, is one of the worst for incomplete crossovers. And, if you are like me, it's withdrawal effects can be delayed for weeks.

 

Finally, I'll point out that, while benzos are often given for akathisia, they aren't the only solution. There are beta blockers, antihistamines, and even anti-Parkinsonian drugs. I don't know about the latter, but most people seem to be able to take either a beta-blocker or antihistamine. And there's also a ton of vitamins that may work--and while some may make you worse, you might find a good one.

 

It just sounds like you are feeling hopeless. YOU ARE NOT HOPELESS. There's still plenty of stuff for you to do. You will get through this.