Pixie's Story

[Guest guest]

http://www.benzo.org.uk/

 

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

Email

 

 

 

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

Email

 

 

 

 

 

Top | www.benzo.org.uk

 

 

Gettingwell- / Vitamins, Herbs, Aminos, etc.

 

To , e-mail to: Gettingwell-

Or, go to our group site: Gettingwell

 

 

 

 

Mail Plus - Powerful. Affordable. Sign up now