TRIGGER: From Despair to Healing: My Journey Off Benzodiazepines

[WebDevElijah]

I've always promised I would write a success story. I think it's very important for the

people who come after us. I know I depended heavily on this section during the really

bad days when I didn't believe life would ever be worth living again.

 

I'm not going to spend a lot of time on the how and why I found myself on benzos. It's

like everyone's story; the doctor said it was safe and I stupidly believed him. My total

time on benzos, including my 22 month taper was about 12 1/2 years. I was on Xanax,

Klonopin and Valium, with doses up to 120 mg Valium equivalent. Today I am 17

months benzo free.

 

I now know that I entered tolerance very early on. I had small amounts of Valium with

dental procedures three different times over about a month. It was at that time my

muscles started aching and burning and I felt sick and "off". I had the mother of all

panic attacks and my journey with Xanax began.

 

For the next decade, I declined. I was running a moderately successful business at the

time. I went from being independent and traveling widely to being home bound, afraid

and so hopeless. I couldn't even go to the grocery store. Any time I was not in my home

environment I was in a state of panic and had high pain throughout my body. I thought I

had a terrible disease that my doctor wasn't finding. His solution was to try different

ADs, muscle relaxers and frequent increases in my doses of benzos. I would feel better

for a while after a bump up in dose. No one saw the correlation.

 

I went to many specialists, including endocrinologist, rheumatologist, gastroenterologist,

otolaryrngologist, cardiologist, nephrologist, naturopathic MD, holistic

practitioners, several chiropractors, two doctors who had written books and promised a

cure, a Jungian therapist, a Feldenkrias therapist, a bioenergetics practitioner, a Qi

Gong master, and even traveled to Vermont from Oklahoma to spend three days and

5,000 dollars with a spiritual healer. My sweet, supportive husband and I went from

being financially secure to near destitute.

 

During the course of these years, I was diagnosed with fibromyalgia, Celiac disease,

Lupus, cardiac arrhythmia, irritable bowel, GERD, essential high blood pressure,

Dupuytren's contracture, thyroid deficiencies, sleep apnea, metabolic syndrome,

adrenal fatigue, major depression, acute anxiety and PTSD.

 

About 10 years into this process, I simply gave up. I had no desire to live this life. The

single thing that kept me from suicide was having had a friend who hung himself, and I

saw the devastation it caused his family. My husband is significantly older than I and I

reasoned when he died, I would gladly follow. I just settled in to wait.

 

I started self medicating with alcohol, which surprisingly made life more bearable. My

doctor had taken me off Klonopin abruptly, put me on about a third of the equivalent

dose of Valium. When I went back to him telling him how horrible I felt, he told me to

3supplement with alcohol for a while until I evened out. I remember his words, "Valium is

just alcohol in a pill form". I actually felt quite well while drinking. Now I know it was

simply the effect on my weary, down regulated GABA receptors. Of course, I needed

more and more alcohol to have the same effect. At my worst, I spent a few weeks

getting up, feeling hung over, pushing the button on the coffee pot, and going to the

garage to have a beer and smoke a cigarette while coffee was brewing. During this

time, after a day of consuming 22 beers in a 24 hour period, plus whatever amount of

benzos I was on at the time, I experienced an episode of nystagmus and a

hospitalization. The effects of that left me going to the same therapy that stroke victims

go to recover balance and equilibrium. I was a mess. It became a daily struggle to live. I

wasn't living, really, I was just existing.

 

By chance, I was at the library and randomly picked up a newly released book. The title

was "The Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs and the

Astonishing Rise of Mental Illness" by Robert Whitaker. The cover had a picture of the

brain and the different drugs were written on different parts of the brain. My doctor had

just prescribed yet another antidepressant and I wanted to read this book before I tried

it, I got to the chapter on benzodiazepines and might as well have been reading about

myself. Practically every symptom I had was represented in stories there. I remember

one poor soul in particular who could not take a shower; the water burned his skin and

he was terrified of losing control. That was me, too. He had quit taking Klonopin and the

symptoms never went away. He started again and felt better - for a while.

 

I read where care must be taken to taper off and it should be under doctor supervision. I

talked to my doctor. He negated my concerns, and said I couldn't possibly be addicted

because I took only as prescribed. That was true. I did. I kept looking, and eventually

found a free, county operated detox facility. I checked in on December 30, 2010. Before

I went that morning, I took 10 mg of Valium, a 1 mg Klonipin and drank two quick beers,

just to even me out so I wouldn't be so scared. 11 days of hell ensued. Unfortunately, I

remember it all. It took many months for the deep horizontal grooves on my fingernails

to grow out. I later learned they were trauma lines from a profound shock to my body.

My curly hair overnight looked like a wire haired terrier. I aged a decade, at least.

Librium was used to "taper" me. I came out benzo and alcohol free but was dehydrated

and having auditory and visual hallucinations. I literally could not see what I looked at,

no matter the strength of the glasses. Riding home, it felt like I was in a boat and the

rear end was fishtailing. I did little shrieks and hid my eyes because it seemed like traffic

was coming directly at me. Once home, I hid in bed. When my husband had to run out

to get anything, I would cover up my head and be so afraid I would die before he got

home. I saw a constant stream of pictures on the wall, like a slide show being played

and I saw patterns everywhere I looked.

 

After three days of this, I found a psychiatrist who would see me in one day. I just

remember the hope I felt when her receptionist said "she will help you". I had both

4Klonipin and Valium in the house but I was determined not to take it. The day before I

was to see the psychiatrist, I went to my primary doctor, the guy who had prescribed for

12 years and assured me I wasn't addicted. He blanched at my story, wrote me a

prescription for 25 mg Librium with a 5 day taper schedule. He never again wrote a

benzo prescription and never believed me when I told him how difficult it was to fight my

way back. He blamed everything on alcohol. Everything -- even though I wasn't drinking

at all for at least two thirds of the time I had been so sick.

 

Sitting in the psychiatrists waiting area, the walls seemed to be breathing in and out and

were rapidly changing colors. When I closed my eyes, I saw cartoons playing. When I

stood up to follow her into her office, it felt like most of me kept going up a few feet past

my normal height and it took several minutes to settle back into myself. I had great

difficulty trying to find words to describe to her what was happening to me. It turns out,

she knew very well what was wrong. She had me take a couple of Librium while sitting

in the office and told me to go home and take Valium, to reinstate, stabilize and then we

would begin a taper. A "proper taper" she said. I still see this lovely woman from time to

time. Sometimes we reminisce about how bad it was and how scared I was. I'll always

be grateful for her willingness to take me on.

 

Since I still couldn't see, my husband gave me the Valium when I got home. He thought

he gave me 5 mg of Valium. Instead it was 1 mg Klonopin, which is equivalent to 20 mg

Valium. Before I took it, my heart was flopping like a fish, my muscles were so

contracted I literally could not straighten my legs, I was hearing loud pops every time I

tried to doze off and the walls were wild with swirling colors. Within 20 minutes of taking

that 1 mg Klonopin, I felt perfectly normal, completely at ease, could see clearly and all

the effects I've just described were 100% gone.

 

I've told this so anyone who is getting ready to go down this path will know the truth of it.

I think it's important to tell the truth.

 

The rest of the story is well documented here on my blog. It's on the long side, though,

since I've been here almost three years, so I will summarize it.

 

The psychiatrist reinstated me on 35 mg of Valium and tapered me at a rate of rate of 5

mg a week. As you might imagine, I didn't do well. I eventually found another forum,

then this forum and started following the Ashton protocol. The psychiatrist worked with

me and allowed me to taper at my own speed. I never took another Klonopin after that

mistake my husband made. I used Valium all the way down.

 

By the time I found the forums, I was at 7.5 mg of Valium. It took me 22 months and 9

days to taper off. I tried Roxane liquid and experienced intolerable nausea. I honestly

can't remember everything I tried now. I do remember the last four months were a daily

reduction of about .01 mg and I was using a small amount of vodka to dissolve the

Valium.

 

5Symptoms during the taper were truly brutal but they were nothing compared to not

knowing what was wrong with me. I slowly began to want to live. Perhaps the biggest

miracle of all was making deep connections on this and the other forum. I started

laughing again. I would be up in the middle of the night, huddling in my recliner,

sweating, fish heart flopping, feeling like I just might die, and one of my friends would

post something that would make me laugh out loud. They probably saved my life. We

were all going through the same things and we all chose distraction to get through. Of

course there were also many moments of profound sharing and deep insight among us

that got me through. That time is easily in the top ten most valuable things that has ever

happened to me in my life, not just in my benzo years. I won't attempt to name

everyone. If my friends are reading this, you know and you remember how sacred our

bond was and is. I humbly thank you.

 

I'm one of the lucky ones who just slowly began to feel better. It wasn't dramatic.

Sometimes it wasn't even noticeable. I started driving again at 1 mg. I made some real

progress socially at about 8 months off. At 15 months off, I entered a masters program

in psychology. My goal is to become a counselor. This is very ambitious and maybe

even silly, considering I'm 59 and we have no money.

 

Some people have said they feel reborn during this experience. I think that would be a

fair statement. Only the Celiac diagnosis remains. All the rest of the medical diagnoses I

was given no longer apply. Even the sleep apnea has gone away. I still take .1 mg of

Clonidine for blood pressure, and that's down from .4 mg. I'll eventually be able to stop it

entirely. I quit smoking and lost 85 pounds after my taper ended.

 

There are days when I feel absolutely wonderful in my body. I'm usually full of energy

and well being. I've recently begun sleeping 7-8 hours straight through after years of no

sleep, little sleep, intermittent sleep and hover sleep. A sleep study during the benzo

years showed I woke up 29 times an hour and never reached REM sleep. Last month. A

other sleep study showed normal REM sleep and waking a normal once an hour.

I don't think I've mentioned this to my friends but the Dupuytren's in my palms is

subsiding, the tendon cords are going away. I no longer need the surgery or radiation to

keep my hands from further curling and the fingers are beginning to straighten.

I'm cleaning house. I'm almost to the point where it's not embarrassing anymore. When

the doorbell rings, I answer it instead of running to hide in the bedroom. I can talk on the

phone again. I can shop for groceries and cook a meal and enjoy doing both. I'm

volunteering at a prison diversion program as a GED tutor, getting fairly active in a neat

little church, and regularly attend a twelve step meeting called Emotions Anonymous

where I'm making friends and building intimacy.

 

I started seeing a therapist four months before my taper ended. He has been so

valuable to me, teaching me that life could not be lived well in isolation like I was doing.

I honestly don't know if he fully believed me on the benzo story. I'm one of two people

he sees that have gotten off benzos. He commented recently that we were both getting

6our lives back and he wished his other patients would consider coming off. The

therapeutic relationship has proved transformational for me. This is why I am so intent

on becoming a therapist. I would very much like to help someone as I have been

helped. I'm hoping to find a niche in the world of substances, particularly

benzodiazepines. I don't have the heart to fight litigiously. I do have the heart to help

people one at a time. That's my goal.

 

Today I sat down and wrote three papers for school, they weren't long or difficult

papers. They were simply digesting and summarizing some outside assigned readings.

I was focused and disciplined, and I polished off the assignment in about 6 hours. Then

I I walked the dog a mile, returned a phone call, and sat down to begin writing this story.

I planned to say more, but it feels like it's well covered. I hope you can get a feel for how

sick I was, how hopeless I was and now how hopeful I am, and how well I feel.

 

People usually want to know if we are 100% healed. My best answer is that I don't

know. When this started, I was in my 40s. Now I'm almost 60 and post menopausal. My

body is different. My priorities are different. I'm more content with simplicity. I can

honestly say that I'm living life fully, and that I can make plans far down the road with a

high degree of comfort Ill be able to keep the plans and not cancel because I'm too

sick.

 

Relationships have become so important to me. I feel less anxious, less self-monitoring,

more self-accepting and more relaxed with people. It's as if the internal critic has been

almost muted.

 

Life is about to get too busy and I'll undoubtedly begin to spend less and less time here.

That is the natural flow of life and it is a healthy thing. But as I said before, I have many

friends here. This is still my chief social outlet. I still come here first to report successes

and failures and to celebrate and commiserate with others.

 

If you have managed to wade through this and have questions, I'll be happy to try to

answer them. If you are still suffering so much that you think life is just not worth it,

please take heart and do whatever you need to do to endure it and let time pass.

Passing time is key. It simply takes time for the brain to heal. I really believe now that

we all heal. There is no set time frame and we are all truly different. The body and mind

are amazing, though. Given the smallest of chances, both heal.

 

I'm ever so grateful for the support of friends here who give so selflessly of

their time and hearts. Without all of you and my steady husband, I would be a causality.

 

It's just the truth.

 

Thank you for listening.