Pixie's Story

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Pixie's Story

 

" Four Years After Klonopin and Still Battling "

 

My whole " psychotropic " drug ordeal began in approximately

1992...I was 20 years old. I was having difficulty with social

anxiety/public speaking phobia and sought help from a psychiatrist.

She immediately prescribed Prozac. This miserable drug caused a

complete change in my personality, made me anorexic and caused me to

attempt suicide within months of taking my first dose.

 

I was on and off various SSRIs for years after this initial

prescription. Finally I got fed up with years of side effects and

various withdrawal episodes from SSRIs, so I asked my doctor (not the

original doctor who gave me my Prozac, a new one) to just give me

something I could take " as needed. " One reason I did not like the

SSRIs was because I had to take them everyday. My anxiety problem was

" situational " – not generalized. Specifically, I was in college at the

time and going to class, speaking in class, giving presentations etc.

which caused me anxiety.

 

My doctor did as I requested – " Can you just give me something I

don't HAVE to take every single day? " – and he prescribed the

benzodiazepine tranquilizer/anti-convulsant drug Klonopin. He was well

aware I was taking the Klonopin approximately four days a week – for

class. He did not warn me that it was addictive. He did not warn me I

might develop a tolerance. He certainly did not warn me about the

horrors of benzo withdrawal.

 

To this day I cannot believe I was on an ANTI-CONVULSANT!!! I went

on 0.5 mg of Klonopin in September of 1996, up to 1mg in approximately

February 1997. By March of 1997, I was having difficulty with speech,

could not focus my eyes, felt crazy inside, overly emotional, frequent

urination and completely out of it. I knew it was the drugs and I knew

this could not go any longer. It was time for me to put an end to all

of this. I " tapered " off the Klonopin over a one or two week period

and immediately went into severe withdrawal within days of stopping

the drug.

 

My body became completely numb...I couldn't even feel myself going

to the bathroom. My ears were ringing like there was a loud tea kettle

constantly going off in my head. I could not focus my eyes at all. It

was impossible to read or even watch TV. I was itching like crazy and

it felt like bugs were crawling all over my body. I could not tolerate

light or noise. I could not taste my food. I felt exhausted, but had

terrible insomnia. It was the most frightening, horrific experience of

my life and it lasted one month.

 

Then I thought it was getting better, some symptoms were abating.

I now know I was recovering from the " acute withdrawal " stage.

However, I still had a lot of benzo symptoms, one of which was

INCREASED anxiety...almost paranoia.

 

It felt like the whole world could see my symptoms and I was not

even comfortable walking down the street. I talked to the doctor about

the Klonopin withdrawal and he said since I was on such a " low dose, "

these symptoms could not STILL be from the Klonopin or the Klonopin

cold turkey. He said it was such a low dose that quitting the drug

would not cause such long lasting symptoms.

 

So the doctor gave me Paxil again. This really did not help, so a

month later I stopped taking the Paxil. What I did not know at the

time was that I had protracted withdrawal syndrome from

benzodiazepines. The increased anxiety and paranoia were symptoms of

this, plus ALL the other physical symptoms...were caused by Klonopin

withdrawal.

 

Unfortunately, there is no happy ending to this story. I got

myself off the Klonopin and all other drugs, but never fully recovered

from the physical symptoms the benzodiazepine withdrawal caused. For

over 4 years I have lived with ringing in my ears, muscle pain and

weakness, burning feet, sensitivity to light, noise, and scents,

inability to focus my eyes, clogged feeling in my ears, extreme

fatigue, memory loss, tingling in my hands and arms, weakness in my

left arm and more.

 

The sad thing is I could deal with all of this if my worst symptom

would go away. My worst symptom is a loss of cognitive abilities. I

feel drugged all the time. It's like I am in a dream 24 hours a day. I

do not perceive my environment clearly. I can barely read or drive. I

cannot think logically/organized. People say I " seem " fine, but I feel

the loss in my abilities and it is devastating to me. I long for the

day when I get to have ME back. I can't wait until I can enjoy going

for a drive again or going to a movie and being able to see the screen

clearly and understand what is going on. I can't wait until I can have

a sharp mind again and remember events clearly again.

 

I have missed so much these past four years. I'm only 28 and I

have wished to die so many times rather than go through another day in

this fog.

 

I was unable to get any help from doctors. I've been tested for

everything under the sun...from MS to Lyme Disease. All tests were

negative. The doctor who gave me the Klonopin long since abandoned me

and there are no doctors who seem to know anything about long term

withdrawal from benzodiazepines. The few that do are located in other

countries. My only help, through the years, has come from others who

were affected the same way by this class of drugs.

 

They too have seen many doctors and have also found that their

doctors know nothing about this benzo problem and cannot help. Most

say it's impossible to be affected so long after discontinuing the

drug, but for those of us who have gone through it...we know it IS a

reality. These drugs can have miserable consequences for a percentage

of people who take them.

 

I finally " gave up " last month – 5/01. I have long believed that

NOT tapering...going off " cold turkey " caused my protracted symptoms.

I reinstated on Klonopin one month ago for nine days – and then

switched to Valium. Amazingly, the first dose of Klonopin cleared the

fog by at least 75%. This confirmed that I am suffering protracted

withdrawal.

 

For now, I am back on benzos over a month and I am tapering off

the Valium slowwwly. All I can do is TRY. This was my final option and

only hope for a possible cure. I did not want to go back on, but felt

I had exhausted all other options and I did not feel after four years

that I had seen much improvement in my symptoms. I just couldn't " wait

it out " anymore.

 

All I can do is try this, hope that it works and that my symptoms

aren't permanent. I want my brain and my life BACK.

 

Pixie

New York, USA

June, 2001

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Update

 

It is now October 11, 2001. My plan got all screwed up. I

reinstated the Klonopin in May, 2001. I found that .75mg cleared the

horrible PWS fog, cognitive/perceptual dysfunction, dp/dr by about

75%. I stayed on Klonopin for 9 days, then switched over to Valium. I

found that 15mg of Valium was my " stabilization " dose. The Valium did

not work as well as the Klonopin, but I still felt better than I did

benzo free and with PWS. I was willing to feel less better on the

Valium because it was supposed to be easier to taper from.

 

I made my first cut about a month after reinstating benzos. I cut

2.5mg of Valium. Within 2 days, my miserable symptoms began to return

full force. I realized the cut was too large and went up to 14mg

Valium. I stayed at that dose for 3 weeks, then decided it was " time "

to cut again. So I cut by 1mg. So I was down to 13mg. Within a week of

the cut I began to really go downhill. I was to the point of feeling

like I had Alzheimer's disease. I was very confused and disoriented.

Some days were worse than others. But I was in no way " stable. " The

relief I felt in May was gone.

 

I tried to hang in there, but by the end of July, while away on a

business trip I became delirious. I tried upping the Valium dose, it

did not help. I tried switching back to Klonopin for a week, it did

not help. I went back to Valium, but no matter how much I upped the

dose, I was gone... I was completely non-functional. I had to leave my

job. I ended up losing my job because I was unable to return to work

after several weeks.

 

I decided to throw the Valium out the window and go back on

Klonopin. August 1, 2001 was the last Valium dose. August 2, I

switched back to 1mg of Klonopin, but still felt like hell, so I upped

to 1.5... this did nothing. I decided if I was going to be addicted I

might as well be addicted at a low dose, so I stuck it out on 1mg of

Klonopin for one month. It was a hellish month. I couldn't see

straight, think straight, read even a simple magazine article or drive

a car. After a month of this torture, I slowly increased my Klonopin

dose. Each increase seemed to help a little bit... I STRESS... " a

little bit. " Two weeks ago I increased the Klonopin to 2mg and I am

feeling a somewhat better... better meaning - compared to the worst of

the Valium DELIRIUM.

 

I cannot believe how miserably the " plan " went. I regret switching

to Valium because I was doing well on the Klonopin at .75mg. Had I

stuck with it and then slow tapered off that after a few weeks,

keeping the symptoms at bay... it is quite possible that by now I

would be at least half way done with my taper and closer to being

" cured " of PWS. These last months I have been trying to play " catch

up. " Trying to feel better again before I start a taper. I am very

upset that I am at 2mg of Klonopin but that's just the way it is. I am

going to attempt to stabilize at this dose and then start my taper soon.

 

My Doctor is trying to get me a year off and approved for long

term disability. I hope so or I will be in serious financial trouble.

I am hoping a year will be enough to get me off this miserable drug

and get me feeling better. I think 4 and a half years of complete

misery is quite enough... but there is obviously more suffering to

come. I will keep you posted as the months go on.

 

Pixie~

October 11, 2001

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