Two years off 8 years of Klonopin this month!

Sorry I don;t post as much as I did in the past but it has been literally hell.

 

The short for new people...I was on Klonopin from 2003 to December 2011/January 2012) taking 5-8 mg a day. Tapered me over 5 days cold turkey and have never been on since.

Month 1-3 horrible

Month 4,5 and 6 got real good

Month 7 twitchy and dizzyiness got so bad I was locked in a psych ward for 5 days.

Months 9-11 bad

Month 12-13 real nice, low symptoms and calm.

 

Second year has been steadily getting worse for my CNS for some reason.0

 

Almost two years out and for me at least it is much worse now. Dizzy 24/7 and twitch all over. Had every test, MRI...you name it under the sun and all show everything normal. I am just so dizzy and I have all these ticks. Stuttering, blinking, convulsing sort of etc. Never had any of this prior to 2003 or when on Klonopin. Had a few short window's of hope where it went away and it felt amazing. Was going to reinstate a few times as I cannot take this anymore. no job, no friends nothing. Just my dog and I deal with this day and night. No idea how I have not gone back.

 

Maybe I messed it up so bad that I need to be on some low dose for life? Too scared to go back on because then it is basically saying I wasted these two years of my life. Any thoughts or suggestions would be appreciated. Thanks.

You are exceptionally strong Max. I'm so sorry this has continued for this long. Your body and brain are doing all they can to heal. Those windows you have are proof that it's still there somewhere, once the right balance is found. You will get back there. Please fight the urge to reinstate as best you can, it really could be any day you wake up and feel much better. We see it in all the success stories people who had nearly given up hope only to find themselves getting better much more rapidly over a month or two. Take care 

Max, I have heard of some long term high dose users getting more sick in the second year.. It seems like the CNS has to tear itself apart in order to rebuild so at may explain the new symptoms, but that's only my theory. The few people I've seen tend to turn around in the 3rd and 4th year so it's inevitable unless there is something underlying. Which it doesn't sound like there is AND you've had windows. Hang in there 

 

Maybe the nuerontin was messing with you, too, who knows.

 

Your wrote this back in late September, it has some good stuff to keep in mind:

Some major good news to report. After the God awful dizziness and twitching all summer it finally settled down. The dizziness was the first thing to drop and then all the twitching and stuttering.

 

I do know it probably will return however I am almost at 21 months and it seems to be a common thread amongst the people off a long time that real healing starts way late. Especially since I was on 5-8mg for 8 years.

Max, I have heard of some long term high dose users getting more sick in the second year.. It seems like the CNS has to tear itself apart in order to rebuild so at may explain the new symptoms, but that's only my theory. The few people I've seen tend to turn around in the 3rd and 4th year so it's inevitable unless there is something underlying. Which it doesn't sound like there is AND you've had windows. Hang in there 

 

Maybe the nuerontin was messing with you, too, who knows.

 

Your wrote this back in late September, it has some good stuff to keep in mind:

Some major good news to report. After the God awful dizziness and twitching all summer it finally settled down. The dizziness was the first thing to drop and then all the twitching and stuttering.

 

I do know it probably will return however I am almost at 21 months and it seems to be a common thread amongst the people off a long time that real healing starts way late. Especially since I was on 5-8mg for 8 years.

 

Hey thanks so much for the replies.

 

Thanks for pointing out my past update. I too have heard some where that the second year appears to be worse.  I took Neurontin for a while and really did not notice anything. This last go around I was given Depakote and Vistril and also I did not notice anything. Heck they even tried Phenobarbital on me and that too I did not notice any affect.

 

I am going for disability right now and frankly my lawyer says I have a good chance of getting it. I am 39 and not looking to be disabled for life but I have been out of work from all this for so long and running out of money as I lost almost everything.

 

I just cannot believe that one year ago I generally was feeling much better. When I got off benzo's I quit alcohol as well (I am an alcoholic) and at my 1 year anniversary I was not dizzy and not twitchy all over. I am just so at a loss to this hermit I have become. Thanks again all.

Yo, Max, at 2 years out you might want to post on the new "Protracted Benzodiazepine Withdrawal Board" -- for those who are 16-18 months or more off of benzos... (I'm not a moderator and this is just a suggestion. Post where it suits you...)

 

I'm at six months off 15+ years Valium use and having enough trouble as it is, much less worrying that I'll still be f**ked up in 18 more months! Yikes...

 

Hang in there. This gets better. I think, although there is someone here who claims to be in withdrawal after NINE (yes, 9!) years...

 

Best wishes for a speedier recovery...

 

 

Thanks. Yes it was moved to the right section of the forum. Been a while so I had no idea they had a new section.

hi max

 

im sorry. i got worse, too.

 

i did not take neurontin, etc. i just keep thinking i should feel better by now:(

Yo, Max, at 2 years out you might want to post on the new "Protracted Benzodiazepine Withdrawal Board" -- for those who are 16-18 months or more off of benzos... (I'm not a moderator and this is just a suggestion. Post where it suits you...)

 

I'm at six months off 15+ years Valium use and having enough trouble as it is, much less worrying that I'll still be f**ked up in 18 more months! Yikes...

 

Hang in there. This gets better. I think, although there is someone here who claims to be in withdrawal after NINE (yes, 9!) years...

 

Best wishes for a speedier recovery...

Tex, protracted buddies are welcome to post on any board they so choose.  They are not restricted to posting on the Protracted Board for support.  Let's not make our protracted buddies feel unwelcome on the Post-withdrawal forum. 

 

Thank you for your cooperation with this.

 

Juliea

BB Team

After 2 years I might look into flumazenil. Heck I might after 6 months! Sorry you are still sick hope it ends soon for you.

After 2 years I might look into flumazenil. Heck I might after 6 months! Sorry you are still sick hope it ends soon for you.

 

I don't know how I never heard of this one. Might ask my doc Monday. Any one try it for WD? Thanks.

My doctor offered it to me as an optin. It's supposed to reset the gaba receptors. I've heard mixed things about it. Doesn't seem to work well at all for someone going ct but seems to do better fir people like us who have been off months or more. Insurance won't cover it and it costs like 10 grand. Out of reach for me

Max,

 

i've read that the flumazenil was best to use right when you're just off the benzo's-- not this far out and even then it's a crap shoot. i've only read one story where it worked okay for the person and he still had some symptoms. i wouldn't mess anymore with the GABA receptor's, they've been messed with enough.

 

you are right where you are supposed to be in this healing. i've heard of many people who get a lot of symptoms that 'seem' worse at the 2 year mark. the 9th month for me was my absolute worst and it's slowly and steadily getting better although i'm noticing some symptoms are now worse at 18 months off and a lot of symptoms are better.

 

it's like the brain is working and working. and then it works on certain things for awhile and  then it works in other areas for awhile so it feels like you are worse off. i like what gettingthere said about the 'CNS tearing itself apart in order to rebuild itself' and in the rebuilding stage you're going to feel all kinds of things. i'm feeling that way too although i can see that there are a lot of symptoms that are much better and even gone. and then some symptoms that seem worse. please don't reinstate.

My doctor offered it to me as an optin. It's supposed to reset the gaba receptors. I've heard mixed things about it. Doesn't seem to work well at all for someone going ct but seems to do better fir people like us who have been off months or more. Insurance won't cover it and it costs like 10 grand. Out of reach for me

 

$10.000???

Yeah 10k! That was an approx amount my doc gave me. If it resets the receptors it might be worth a try. I can't see it being used to take you off benzos though that would be super painful! They are still in your blood for a while. If it resets the gaba receptors then I would think at 3 months or longer off benzos it would be more useful. I might be willing to try it now that I've been off awhile and am still suffering pretty bad. Don't know where I'd get the funds though.

When I asked my doc about it he said it was used for detoxing off benzo''s or like an antidote for them.

 

My doc is finally at a loss and feels this is too long to have all these symptoms. Still throws the word anxiety around but I counselor does not believe that at all. Clearly this is all physiological. Being this dizzy and twitchy 24/7 without wavering is not anxiety. If I was anxious it would flare up and get worse in anxious situations. This does not happen to me. Hell I'll sometimes stutter and lock up when trying to talk with my dog and no one is around.

 

I am outside NYC and he suggested going to Mount Sinai or Columbia to see someone but when you look them up there are a million Neurologists. How do you find one well steeped in Benzo's? Is it really some tick disorder that just so happen to start when I came off Klonopin?? I doubt it. So frustrating. 

w/d kicked off alot of probs for me max that i did not have before

 

good luck

Max 2 years is too long to have these symptoms your doctor is right about that, unfortunately lots of us do, hang in there buddie my second year was awful, it does get better.

Max 2 years is too long to have these symptoms your doctor is right about that, unfortunately lots of us do, hang in there buddie my second year was awful, it does get better.

That is what I am hoping for. Worse before it finally starts getting better.

You are healing.....don't ever forget that. It took Matt Samet 4 years to see himself finally over the hump.....and he took a lot of meds too. You will see the end of this--keep pushing forward...you are closer than when you started.

 

Happy Healing!

 

mtnhigh