MY STORY OF HEALING

Hi all,

 

Not sure if anyone remembers me, I was a active member for a good 2.5 years back in 2009 to 2011.

It has been a long road and many friends I have made in have requested long ago that I share my story and offer

hope. This is going to be a long read so be prepared.

 

My story starts by "like all of us" how I ended up on benzodiazapines and other pharm drugs.

 

I was a notorious binge drinker and received many DWIs in college and there after. I was always a

bit prone stressors and a bit of a high strung young adult. It was a time of my life that I regret very much but just like

other college kids in my circle I acted with little responsibility and would up not learning my lesson until I lost my driving

license for a 10 year period. I was counseled by my attorney to seek professional treatment in order to possible get limited driving

privlages. This is where it all began..

 

Uneducated and unaware of the possible harm of medications and drugs, I went ahead and made a appointment with a local Psych whom

after one session gave me prescription of klonopin and Lexapro.  I think I had a half hour session of answering questions and when asked if I was depressed

I said "yes I just was suspended for 10 years" When asked if I was anxious I answered "I am anxious and made a mess of things by some poor choices"

I think we are all taught that the prescribing doc knows all and is there to help. I was told There really was no such alcoholism present however I did have Generalized

Anxiety Disorder.

 

Over the years I lived my life on MAOI inhibitors and a starting dose of Klonopin of .5mgs that at one point exceeded 2mgs a day.

Years went by and the symptoms slowly started to reveal thenselfs both physically and mentally. I was playing club soccer when I started

noticing the nerve pain beginning in my knees and arms. My mood started to chance. I became extremely irritable and emotional. I was crying in

the middle of the supermarket and my chest was constantly tightening up at my office where I worked as a confident successful executive.

 

As time went on the issues became worse. I was sometimes unable to urinate and ended up seeking help by a local urologist who called it a fluke

and could not explain what was happening.  I also was starting to loose so much sleep and expressed this to the prescribing Psych who then placed me on

max dose of Ambien and Lunesta rotated every other day. I was also prescribed Propranolol because for some reason my heart became elevated at times and they

were sending me for tests calling it a valve issue.

 

Things became so bad that I was having issues sitting still (akathesia) and the nerve pain was out of control. I made a Dr. appointment and expressed my concern and asked what was

going on and why all this is happening.  My answer was simple " these are your symptoms getting worse" we need to increase your dose. I asked "but why am I having issues walking (balance and nerve pain) my answer was "you are developing fibromyalgia on top of the possible heart valve issue that we somehow cant find" I wanted off these drugs and expressed my disbelief that

the issues being caused were of my doing. ( we all know our own body)

 

I was told I should stay on the benzodiazapines and all for life because it was what was best for me. I disagreed and wanted my life back to the way it was before I took the drugs.

I was giving zero cooperation and ended up going cold turkey on klonopin and nardil, ambien, lunesta and propranolol all in one night.

 

I do not think anyone here was ever prepared what could happen next. (This is where my Journey began)

 

2 weeks after the CT I was not able to sit still at my office. I would pace and pace and pace not knowing what was happening. I ran downstairs to the bathroom

vomited and briefly walked to my car. My hands started shaking and my heart took off as if someone was blowing air into my heart.

I flagged down a car passing by that rushed me to the ER room where I was resting heart rate at 160 BPM and blood pressure at 200 over 110.

I was injected with ATIVAN told to get back on the klonopin and sent home on a temporary supply of 3mgs of Ativan a day.

 

I became so sick over the next few month I ended up coming home because I could no longer take care of myself. On the 3mgs of Ativan a day

I was having a good amount of restlessness and akathesia and my hands shook so bad I could not even hold a glass to drink water.

 

My mother and father gave me back my old room and made a appointment to see another Psych doc to help their son.

We all went in together and I was told that I was doing this all to myself and the narcotics had zero affect on my nervous system and I had to up the dose

to 4 mgs of Ativan a day (40mgs of valium)

 

My mother did not give up looking for help and researching day and night to figure out what was happening to me. At this time I was loosing sight in my right

eye, and my eye muscle was stuck open and my eye would not close properly. My mother taped my right eye shut. The nerve pain was bad, heart skipped beats and

the anxiety level was so intense I felt I was constantly being chased by a tiger that was not there.  The head pressure and energy that came with is was like I used to describe

as being on LSD and Meth at the same time and now this was my norm for months. Nobody would ever think this was go on so long with zero relief.

 

My family found a Therapist who diagnosed me with Acute Benzodiazepine dependence and educated my mother father and myself about the dangers of the drug and advised we

read online and download the Ashton Manual on how to safely free yourself from this class of drug. We made a appointment to fins now another Psych who would titrate me off the medication.

Once again we were denied help. Over the next few weeks my mother moved her office to our home and stayed with me searching for a answer and calling most of the rehabilitation centers

across the country until we were told and sold on a facility in California who knew how to handle this case.

 

I was put on a airplane and with bottle in hand of Ativan and one duffle bag containing some clothing.

When I arrived at the clinic I was assigned a room and told to check in with a nurse practitioner. They took my vitals and the next day started to pull me off

the Ativan by switching me over to valium. The detox would be a 14 day detox and then a week of aftercare. The facility was expensive and I did not have the money

to stay for a month.

 

As days went on I was pulled of valium. I spent most of  my time restless pacing a yard and waling around a tree. My heart was giving me issues and I was now put on clonidine

and propranolol to stop the shaking and muscle twitches that had developed all over my body. Day 3 I lost it. I for a day was gone. I did not remember how I woke or what I did for the last night.

they found me waling down the street and brought me back to the facility and now was given large doses of Seroquel and told it was a sleeping pill.

All I remember at this time was constantly blacking out till the last black out I fell and hit my head on concrete and had to be taken to the hospital for stitches.

I was giving a inhaler and now placed on Tegretol, Seroquel, Propranolol, clonidine and 900 mgs of a neurological drug called Gabapentin.

I was sent home on a plane with a bag of drugs in my hand and was greeted by my mother and father at the airport and taken directly to a aftercare Psychiatrist who

was supposed to be a educated man on the benzodiazapines. He told my Family that benzo WD only lasts for a few weeks and once again this was my own doing.

My hands did not work and I could not use a pen but the man made me write on a piece of paper all my fears and why I was doing this to myself and that my loss of sight in my eye

was psychosomatic and brought on by my own doings. He told me to Quit 5 medications in one day 2 days after my large benzo detox.

 

The next week was hell you cant imagine. I slept 15 min a night sweating and shaking and vomiting blood. The akathisia restlessness became so bad that I paced the backyard withought sleping

for 3 days till as my mother told my father never to take me to a doc again and she sat in the door frame crying saying "what did they do to my son"

At 4 am on a Tuesday my heart became so elevated and the mental torment (Depersonalization, head pressure, akathisia) was so bad I do not remember how I arrived but someone

picked me up as I was walking to the hospital in the middle of the night and was admitted to a psych unit and and giving many drugs till I went into a dystonic reaction then directly into 2 seizures that later took most of my hearing in my left ear.

 

I spent the next few weeks pacing and going into dystonic reactions. I would walk then sit and as soon as I would sit my whole body would go into convulsions.

it damaged my jaw and my neck after some time began stiff and I could not move or turn my head almost at all. They said it was dystonia and trauma from drugs.

My family came to visit and mostly all we did was cry and all I remember saying was "look what they did to me" "why did this happen to me"

 

It became so bad that the doc said that they would have to put me back on benzodiazapines for life.

I was reinstated a 3rd time and by this time I was released and sent home once again with a large bag of drugs.

 

Over the next 16 months I was down to 155lbs and my hair was falling out and my teeth were decaying. I was under care and mostly just left a room

to use the bathroom with help of my father. My body was so damaged I could not use the restroom without colonoscopy meds.

I Could only see white flashing lights in my eyes and the nerve pain was so bad I would cry and rock. The brain injury was so intense I began to write notes to

my family and friends basically saying goodbye. I stayed in this single room for 16 months and never left. I was using a weighted blanket to stop the body convulsions

that woke me 3 times a night. My sleep was 4 to 5 hours if lucky and then only to awake with adrenaline rushes so bad my hands would burn and my heart would

want to give out. I figured I would take all the pills I had and just end the torment and spare my family and myself.

 

I was denied contact with anyone online and the doctors told my parents to not let me read anything online because it would just make me worse.

I snuck a old laptop into my room and discovered benzobuddies.

 

I entered the chat room and read about GABA and all the posts and for the first time I felt some hope. I quickly made some friends and connected with

others who were having the same issues as me. People all over the world were reaching out to me and giving me hope and support.

 

My new hope and friends gave me the strength to try to walk out of my home even in severe pain and get some fresh air.

I picked up the pace a bit and walked down a subdivision near my home till my heart started hurting very bad. I dropped to my knees and some people

came out and called a ambulance and they took me to the hospital.

 

ROAD TO RECOVERY

 

I was assigned to a Psych doc who basically looked and my chart and the last few years and told my mother "You are all under my care now, we are going to get through this together,

its a slow process but we will work together.

 

She tried to titrate me off the drugs over the next 6 months. I kept occupied by chatting online and making friends with so many fantastic people who made me smile and gave me

so much hope and strength.

 

At a certain dosage my body and brain could not handle coming off the drugs so I was checked in to a local hospital for care. This was my worst time I had.

I was awake for days and could not take a shower or run my hands under water without my skin burning to a point of pure torture. My nerves in my whole

body were frying and once again I was given large amounts of sedatives. Nurses were bathing me and cutting my fingernails and walking me around.

I stayed for 4 weeks and was sent home to my family. I spent months getting off the sedatives and anticonvulsants with support online and with other who gave me hope.

 

Once off all drugs I slowly began to heal. My neck and tongue were still stuck to one side and I was still told I might have permanent nerve damage in my face that was dystonia

from trauma and I would have to learn to eat and live with it. I started to see a fantastic neurologist who would keep telling me to give it time and all will start to heal.

I continued to see him and the doc who saved my life for the next year. Every day further and further I got from the drugs I was SLOWLEY able to do more.

 

The best way I can describe this is like a very very slow process that seems to be so protracted in length that we never can see the light at the end of the tunnel.

When you are stuck in this misery for so many years you start to adopt the feelings that this will be the rest of your life and if you are able to be able to walk around outside

you would consider that a success.

 

My clothing was filled with holes, my front teeth were just decay. I was able now to bath once a day where at one pint it would be weeks.

my hair stopped falling out in the bathtub and my hands could now grab a glass of water and I could feed myself and start to be a bit more independent.

My mom made a appointment for me to go tot he dentist to see if they could bond my front teeth and fix my smile.

While at the dentist I recall looking in the mirror and not recognizing myself. My vision was coming back in my right eye and sometimes my eye muscle

would be ok and we would not have to put tape on it. They were able to bond my front teeth so I would not be so embnarased to be seen in public.

At one point before I was checked in the hoppital I was 155lbs. After the time of tranqualizers and as I was recovering I was 240lbs and wearing a 40 inch waist

pant. A few local friend invited me to a concert and reserved a table for me and my family with a sign that said "wish you were here" welcome back we missed you.

 

I was not able to go on my own so my brother and father went with me and they played a song and dedicated it to me and my family.

 

I kept participating in online support, talking with my good new friends and weeks later I bought a gym membership with some money I had left over

after the sale of most of my things. My 401k was depleted almost and I sold most of my belongings to buy some new clothing and gym clothing.

My medical bills and hospital stays exceeded 60 thousand dollars and all I had left was 2 automobiles and clothing.

 

I remember my first day getting back into a gym. I worked to get my grip back and I took it slow for quite some time. I was still

very symptomatic and left with head pressure and I still saw white flashing lights when my heart would beat. Sounds were still loud and

I still had some issues feeling my left arm below my elbow and my left leg. Most of my issues were on the left side of my body.

 

My family suggested I go out of town and see if I can ride on a airplane. They booked me a trip to a spa in floridia.

I had not been able to sit still on a sofa or watch TV for years due to the mental restlessness. I did not think I could

sit on a airplane that long. Most of my recovery I was in a VERY restless state unless my brain was engaged in conversation or

I was mentally active on the computer or in chat rooms. It was a very hard thing to describe to individuals who did not experience it but for years I would

wake and go directly to the computer and engage in convo. As long as my brain was active and talking to others it stopped the pacing and restlessness.

 

Moving on, I was able to go to Floridia. I went to the airport and for the first time in years looked around and noticed that everyone had cell phones.

I took me seat and was looking at the person next to me and watching how their fingers and asked what they were doing.

They said it was called texting. I have never done this before or really seen it. Most of my activity was on a lap top. I did not own a cell phone for years.

When support people called me house it was on my land line. I arrived in Palm Beach and walked the beach. I could still not sit still for to long

but I was in a state of bliss at the moment talking to anyone I could. I spent time with people staying at the hotel and even made

a few friends with the house keepers and some people who had drinks with me on the beach. Well that had drinks and I had bottled water!!

I was so grateful to even be able to have conversations and talk.

 

I spent my time trying to live on my own.  I could not work but I could make my way around ok.

 

Some time after I was getting back into the world and still recovering my mom was diagnosed with stage 4 cancer.

I moved in the house again and even though I was still recovering I tried to do hospice care as she was passing away.

Most of my family were busy, dad had to work and brother was planning a wedding.  I cared for my mom till she passed away.

I felt so much guilt and sadness because she never really saw me recover all the way. She passed away thinking her son might not make it.

 

...

 

AFTER RECOVERY AND GETTING BACK INTO THE WORLD

 

Words cant describe what it feels like to loose trust and security i once had. I lost faith and trust in the medical comunity and most of all in myself.

I sat in hosptials thinking, "how was i a successful executive just 4 months ago and now im possibly permanantly disabled with a dissability that is not understood

and certainly not validated. I went through allot of feelings and anger towards doctors and all.  I sat there and said to myself, I was strong enough to quit drinking

and i was trying to turn my life around. I placed my hands in someones care and i ended up way worse than i began.

 

This was a struggle for a very long time. I sought grief therapy and therapy for Post Tramatic Stress Disorder. I lost myself, my idenity, my confidence to

take care of myslef, most of my security in loved ones and my mother.

 

I worked very hard and took care of my body and mind. I grabbed strength from where i could find it.

 

To be able to walk outside and drive a car and even get on a airplane was a gift. I was SO grateful to be social and even have the opportunity

to work a job at a company my mother had left behind.

 

It took me a LONG time to get here. I never thought I would be able to even function again. When people in the benzo community told me to keep going and that I would

get better than I was I did not belive it. When you suffer so long at such a HIGH intensity you never see the light at the end of the tunnel.

I cant blame any one of you who figure you are permantly damaged. I can say that you WILL HEAL AND YOU HAVE TO TRY TO KEEP THAT IN MIND.

 

I still have a subsebtable nervouse stystem and i have not regainded the hearing in my left ear. However in the big picture I can deal with that very small issue.

My eye sight is better, I no longer see spots flashing lights. I can sit down and watch a movie all the way through withought pacing around and loosing attention.

It was years before I could sit and watch TV. Restlessness was a big issue with me. Akathisia so bad I could pace till I dropped.

Most of my symptoms are gone years later. Protracted benzo Withdrawal is so hard and you never think it will end.

IT DOES. You may have a few lingering symptoms but if you read this and see where was you will understand that whatever may linger you CERTAINLY can handle.

 

I spent a long time supporting people all over the world and here in the USA. I find it fascinating that such great bonds are made when people are vulnerable and seeking support.

Life is a wonderful gift and your greatest strength is in you and in who you are surrounded by. I have learned a huge amount of compassion and care for others.

I did loose my security and a part of me feels lost at times but somehow it comes back together. I have a struggle with who I once was and what is left.

If affects my dating and my relationships. A recent lesson I now know when trying to form intimate relationships again was sometimes what we need personally we tend to offer to others. However maybe its not what they need.

 

Sometimes we forget that we are survivors when we depart from the community and place ourselves back in the world. I have made a huge error when forming relationships to let my own

insecurities and fears take over and damage things. We become so insecure of maybe what we lost and even though we still have a part that is the old you left over

I know for a fact that I may sabotage a relationship based on the fact that I sometimes feel not good enough and get so afraid of being rejected.

I know for a fact that I have ran into issues where someone may say "well there was a reason her or she was on benzos" or some other stuff.

Please do NOT blame others or let this hurt you. It is a VERY hard disease to understand the concept and explain to people. However you just may be lucky enough like I was

to have some great people in your life.

Be aware that we are all still susceptible to stress and any stress may set back or make you feel that you are not healed. Its just that your CNS is

a bit fragile.

 

I am here to give some hope and let you know that even the most severe cases do move on and get back into the world!

I know we all think that our WD is the worst and no one has it as bad as you. This is normal to think because pain is relative.

I am here to say... You are stronger than you think and please keep moving forward

 

Always remember the quote from the movie "cast away"

 

“We both had done the math. Kelly added it all up and... knew she had to let me go. I added it up, and knew that I had... lost her. 'cos I was never gonna get off that island. I was gonna die there, totally alone. I was gonna get sick, or get injured or something. The only choice I had, the only thing I could control was when, and how, and where it was going to happen. So... I made a rope and I went up to the summit, to hang myself. I had to test it, you know? Of course. You know me. And the weight of the log, snapped the limb of the tree, so I-I - , I couldn't even kill myself the way I wanted to. I had power over *nothing*. And that's when this feeling came over me like a warm blanket. I knew, somehow, that I had to stay alive. Somehow. I had to keep breathing. Even though there was no reason to hope. And all my logic said that I would never see this place again. So that's what I did. I stayed alive. I kept breathing. And one day my logic was proven all wrong because the tide came in, and gave me a sail. And now, here I am. I'm back. In Memphis, talking to you. I have ice in my glass... And I've lost her all over again. I'm so sad that I don't have Kelly. But I'm so grateful that she was with me on that island. And I know what I have to do now. I gotta keep breathing. Because tomorrow the sun will rise. Who knows what the tide could bring?”

 

 

Love

 

Indigo

Thank you for sharing your healing journey with us. How long did it take you to recover?

Thank you so much for sharing your gut wrenching story! Congratulations on getting your life back. Reading this made me very emotional actually. So many Drs. are completely unaware of the dangers of these drugs. I still just can't believe that this is happening to people. It's got to stop.

Thank you so much for sharing your story . This was very touching and made me sad but then your recovery, made be happy for you . My condolences for your Mom and God bless you because your are a very very strong person. You survived horrific obstacles and I'm honored to read your story.

Thank you for giving much needed hope to us. 💕

Healing does happen! I was in the community for years

It's such a slow process but you all will be able to regain your life.

Life is good!! Just keep the stress levels down when you recover

All the CNS is fragile .. Live a healthy life and you will be fine.

 

I never believed it for years..

pm me if you have any questions

Indigo,

What a journey!  You endured a lot.  I'm happy that you are free from these drugs.  Congratulations and I wish you much happiness!

Thank you! I remember how important these stories were when I used to read them!

 

My advice is always not to freak out on time !!

Even if you have a few a sympotm or 2 left

In the big picture it always improves

 

Most important thing we all have is each other

 

 

God Bless you Indigo, what a journey you have gone through! I am extremely appreciative of you being such a kind soul and coming back to reassure those who are still in the darkness.

 

Thank you so much, may each passsing day bring you continued health and happiness!

Wow!! You aren't just a survivor, you're a master at life. Taking every drop of life you have and making the most of it...what an inspiration and a blessing for us all!

 

Thank you for sharing your story...unforgettable.

 

Hugs to you indigo

Thank you for giving me some hope.  Best wishes for you. 

Hello indigo!

Congratulations!!!! Thank you so much for sharing your journey!

What a blessing!! May you get better and better and better!!

 

God bless you!

Thank you for coming back and posting.  It helps renew my hope. I feel like I'm stuck like this many times and you had it way worse than me. 

I am so happy to read your story of healing. Thank you so much for taking the time to share your journey with us. I am sending you prayers your way for complete healing. You are a blessing and your mom would be so proud.

Thank you for sharing your story. You have the gift of introspection and clarity.

 

Thanks for being here.

 

Still, it makes my blood boil that years have gone by and doctors are still prescribing and invalidating withdrawal from these awful drugs.  How many more lives must be destroyed.

 

Dear Indigo, thank you for sharing your story of hope. I feel blessed to have been able to read such a tremendous account of your human spirit. I am thrilled that you have your life back and thank you from the bottom of my heart for sharing this with all of us. May peace and joy follow you wherever you go.

 

Love and hugs

Jackie :smitten:

Indigo,

 

What a story of pain and perseverance, of strength and hope for all our members. You went through so much, I'm sad reading about what you had to endure but I am overjoyed that you are well and living and loving life. You deserve it.

 

pianogirl 

Was reading your story offline and thought finally there was a dude worse of than us then I realised it was you.  So very proud of u and it shows ur courage and strength. Man those were shitty days but seriously I've never laughed harder than in the midst of all that darkness.  OMG without each other here on bb I've no doubt many of us wouldn't be around to tell the tale.  Thank u for four solid years of friendship.  Forever grateful don't ever sell yourself short pal ur life is worth more than any chicks view of u.  You might have lost the $ but your friendship is worth millions.  Relax love life and love it u earnt it

 

 

Love Lizzy 🌸😍🌸

Wow, your story is intense and powerful.  To go through what you did must have been horrible in itself, but then not really knowing what's going on and having doctors tell you it's your own doing must have been a nightmare.  It makes my blood boil especially when we all know they're the ones who put you in the position in the first place.  I'm so glad you made it through and are able to enjoy the simple things life are all about.  Sorry to hear about your mother passing.  I always worry about my parents going before I'm truly happy and done with this ordeal.  But I'm sure she knew you were on your way to being healed, and you were able to be there for her while she was passing.  Thank you for sharing your story and enjoy the life you've worked so hard to have. 

Indigo, I remember you when I first joined not knowing what was happening to Me!!! Was so thankful I discovered benzobuddies. I was outta my mind with symptoms and scared. You are a true success.... I was honored to read your come back. May you be blessed for the rest of your years,  Jude

Dear Indigo, I read your story 3 times.....can hardly type now. :'( :'(

I've licked the streets of hell as well and after 38 months its not over yet.

 

Thank you for sharing and giving hope, all the best , lots of happiness.

One word for you HERO, what a time you have had, but you went through so much, your story needs to be a model for those that do not think they

 

can ever get out of the Pit Of Hell. I cried, I had to stop and wipe my tears away so I could read more, and when I think I am feeling sorry for myself

 

I will return to your story and slap myself, I am sorry you lost your sweet Mother, but she is still around and her spirit while alive will transcend. Such

 

loving Parents. I can only say thank you for your time and writing your story and helping many to see things somewhat clearer, I wish you only the

 

best and I know that you will have a good life, when it is all done and said. Bless you. 

Thank you so much for writing that.  So inspiring.  I definitely shed some tears reading it... just wanted to give you a big hug its amazing to hear how far you've come.  God bless you. 

Thank you so much for sharing your incredible story and bravery. I too shed some tears as it brought back memories of some very dark days. I'm breathless when I read stories like yours that are so beyond what any human should have to endure. It's particularly devastating that when we are suffering so intensely, medical professionals (and family members who listen to them) blame us for psychosomatic symptoms. Been there, done that. But isn't it INCREDIBLE what our bodies can survive and heal from?

 

So so sorry to hear that you lost your mom in the midst of all the pain. She sounds like a very special person to have remained so steadfast during your challenging your recovery. BUT I feel fully confident you will find a great person to share your life with.  There is something beautiful about those who come through this nightmare....an appreciation for life, a vulnerability. Don't hide your light! She is out there.

 

In any case, thank you once again. As I continue to tread water 8 months post-taper, I come to this forum just to read stories like yours. You are truly paying it forward my friend. Wishing you many, many blessings in the years to come...

Holy moly you were a severe case and fought your ass off!  Did you have head pressure and headaches the entire time?

Thank you so much for coming back to share your story with us...it means a lot.

Keep healing.