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hello, a friend mentioned your site to me.  I have read your cover page and I am happy to hear that your site values inclusion and making our own decisions.  I hope to find support and encouragement.  I was cold-turkey'd off Klonopin on October 14th, 2008.  I was origianlly put on Klonopin in Jan, 2000 for a mis-diagnosed temporal lobe epilespy. I believe that my withdrawal symptoms are slowly decreasing in intensity and frequency.  One day at a time.   
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Hey hawkeye,

Welcome to BenzoBuddies! I am glad your friend told you about us! Wow, cold turkeys can be rough. There are quite a few who cold turkey'd off of benzos here, but either they didn't know this was not the way to go, or were told it was ok to do so by their doctor, or were forced to because their dr. refused to give anymore refills. What was your case?? Hopefully, they'll be stopping by to "compare notes." Glad to hear that your withdrawal symptoms are decreasing in intensity and freuqency over time. How were you mis-diagnosed for temporal lobe epilepsy?? If you have any questions, just ask and feel free to read around.

 

Lori :smitten:

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Hi Hawkeye, I'm a cold turkey too. I think we were on it for about the same time. I was told it was a muscle relaxer after a pretty severe sports injury. Then I was misdiagnosed with a rare neuromuscular disease, during tolerance. I was kept on Klonapin and Valium for years to treat a disease that essentially was caused by the medicine they had prescribed. As tolerance progressed I was told I might have Parkinson's, ALS, or MS and the next step was to try more meds. I still get chills when I think what could have happened if I had. This forum has really helped me get through some hard times. I've had to relearn basically everything. Still have a ways to go with many skills, but doing o.k. Glad you are here and you survived! :thumbsup:
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hello, a friend mentioned your site to me.  I have read your cover page and I am happy to hear that your site values inclusion and making our own decisions.  I hope to find support and encouragement.  I was cold-turkey'd off Klonopin on October 14th, 2008.  I was origianlly put on Klonopin in Jan, 2000 for a mis-diagnosed temporal lobe epilespy. I believe that my withdrawal symptoms are slowly decreasing in intensity and frequency.  One day at a time.   

 

Hi Hawkeye,

 

welcome to BB, this is the best forum for dealing with benzos and staying benzo free, CTing off benzos is very tough and has been very rough for many folks here, I hope you feel good and keep feeling good. I recommend that you read the ashton manual just so more can be explained to you in regards to benzos and how they interact with our body and mind, have a good one! :thumbsup:

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Hi Hawkeye,

Cold turkeys can be so hard. I'm glad that symptoms are lessening somewhat. There are many people here who have had to cold turkey, You are not alone. Thanks for joining us and being willing to share your story. I'm wishing you all the best and looking forward to your progress. Kel

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:yippee: Hey, so glad to see you joined! You'll find so much support and encouragement here. It's amazing how people you've never met can care so much...but they do  :)

 

You've been through a lot with the misdiagnosis, mediations, and c/t off K. I know how very hard you're working to get your health back, which you will do.

 

When you're able, take a look around and you'll see and hear from others who have gone through similar situations. Take your time, though-whatever you need. You'll get through this, my friend, and we'll be here when you do.

 

I'm so excited to have you here  :smitten:

 

DayDream

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  • 2 months later...

Hello everyone, I'm finally here.  After my experience on another site, I was pretty 'gun shy'.  So it took me a few months since first registering, but here I am.  Thanks everyone for your welcome wishes.  Especially daydream and wonderwoman.  I wrote a post asking about Seroquel.  I have had intense withdrawal symptoms from the Klonopin cold-turkey back in October 2008.  I had gone into Stanford University Hospital to be monitored by EEG and video while being taken off Klonpin and Keppra.  I had no evidence of seizures, so was discharged from the hospital with the instruction to "taper" off Klonopin over the next two weeks, which is what I did.  The Keppra was just stopped- no taper.  I had been diagnosed with temporal lobe epilepsy in 2000 because I was experiencing some strange things like waking up every morning with a phrase of a song stuck in my head, smelling things that weren't there and a sense of being detached from my limbs.  They did an EEG which was "suggestive" of temporal lobe epilepsy so they put me on Klonopin.  I'm thinking now that those strange sensations were due to Zoloft.  About 3 years earlier I had been 'diagnosed' with depression after I lost 20 lbs. from lack of appetite and had insomnia for two weeks or so and put on Zoloft. 

 

Looking back, I think that was the beginning for the end for me.  I probably was depressed, I had good reason to be (abusive bad marriage ended a year or so earlier).  If I had just been allowed to feel my feelings and come out on the other side I would have healed myself and been OK.  Instead, it began a hellish 8 + year journey that is no where near done.  On Zoloft, then Klonopin, then upped the dose of Zoloft, then a suicide attempt , add Effexor to the cocktail, fatigue, memory loss, cognitive loss, word finding problems, depressed mood, then another suicide attempt, add Seroquel to the mix in 2006, developed shortness of breath, worsening fatigue, worsening cognitive functioning, despair, depression.

 

And now I have developed tardive dyskinesia, involuntary movements of my tongue and lips, which I had been reassured over and over, by various prescribers that Seroquel can not cause tardive dyskinesia.  Unfortunately this side effect is usually irreversible, at least that is what the "experts" say.  I plan on proving them wrong.  Two nights ago I began tapering the Seroquel by 1/10th my dose (300 mg) and will be off Seroquel by June.  I had always planned to taper off the Zoloft, Effexor and Seroquel (one at a time) once the Klonpin withdrawal symptoms had abated.  But the timeline has been changed by the development of the TD. 

 

Hopefully I have answered your questions, Wonderwoman.  Maybe more than you needed to know :) Anyway thanks to all and I will need lots of support as I taper off the Seroquel.  I am so afraid I will not be able to handle the possible depression, to trust that I can get through it without the drugs.  But I know I have to do this, and the "professionals" are quite obviously no help.  So any support you all can give, I humbly accept.  Thanks again, and best wishes to you all!  hawkeye

 

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Hey hawkeye,

 

Belated Welcome to BB!  :)

 

I was just reading your posts and was intrigued by the "tardive dyskinesia", so I started doing a little research.  I've worked in the medical profession for quite some time, but this was a new one for me.  The Seroquel site says ...

 

Another serious side effect reported with Seroquel XR, Seroquel, and medicines like them is tardive dyskinesia (TD)—uncontrollable movements of the face, tongue, or other parts of the body. TD may become permanent, and the risk of TD is believed to increase as the length of time on and the amount of these medications increase. While TD can develop in patients taking low doses for short periods, this is much less common. There is no known treatment for TD, but it may go away partially or completely if treatment is stopped.
   

 

I thought it was encouraging to read that it "could" completely go away.  :)

 

I plan on proving them wrong.

 

I truely hope you prove them all wrong and are one of the people that it does go away for!    :hug:

 

 

Phyllis      :smitten:

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Thank you Phyllis!  I appreciate your looking into the TD side effect.  It is very frightening.  I am an RN too, and I have seen patients who have been on the first line anti-psychotics (like Clorzaril) who have developed TD's.  It can be disfiguring, really hideous.  My friend (who is also on Seroquel) used to joke that we had to check each other for development for TD's every time we saw each other, even though all the "professionals" have re-assured us both on numerous occasions that Seroquel isn't "that kind" of anti-psychotic.  BTW neither of us had ever had anything close to psychosis.  Now it's not so funny.  And STILL my prescriber maintains that Seroquel doesn't cause TD's. This irresponsibility is unconscionable to me.  I'm convinced that Seroquel DOES potentially cause TD's and I am getting off. 

 

Thanks again for your support, Phyllis.  I'm out to prove them wrong and reverse this.

 

hawkeye

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Hawkeye  I haven't been on here long. Hearing what others have gone through helped me know I am not dieing. It let me know of what I might expect. There are so many helpful people here. I read one blog and it listed what all the person had gone through. I think I hit them all. Wish I had seen that list at the start of my withdrawal but I was on my own. Keep your teeth it will get better.
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Thanks bec.  Come and visit my blog when you have a chance.  It's a great place to put your feet up, I have a recliner just waiting for you.  Make yourself at home.  Mi casa es su casa.  Stay strong.  Trust your own body.  Educate yourself.  Educate as many doctors as you can.  Be a force to be reckoned with.  This madness has to stop and we can do it!  One buddie at a time.  :thumbsup:
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