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World Benzo Day

Today, July 11th, is World Benzo Day and I couldn’t let this pass without sharing my experience with a prescription benzodiazepine.  At almost 2 years since I finished a 17 month taper, I have mostly tried to put this period of my history on a back burner. It was an ugly time. My family and I paid a huge price for this iatrogenic illness, including the loss of friendships we’d had for decades. To those unfamiliar, here is a very brief summary of my journey:  twitter

1) Summer & Fall of 2012 I began experiencing tongue pain – a burning as though a lit cigarette was in my mouth, and a feeling of swollenness as though I couldn’t close my mouth completely.

I saw my dentist twice and twice had back teeth shaved (turned out this was a needless, costly, meaningless procedure).

I finally saw my primary care physician. I did this reluctantly because I was never a fan of doctors, but after months of pain, I relented. I was 47 at the time and while explaining my complaint, she pulled out the prescription pad and was writing a script for Ativan before I finished speaking. She was very non-plussed. Diagnosed me with Burning Mouth Syndrome caused by hormones since I was going through perimenopause. The only medication I was taking was a rescue inhaler for asthma and I told her I wanted to be on the lowest dose of Ativan possible.

She told me to take 1mg a day everyday for 2 weeks. After that take only as needed for pain, but likely I would have to double my dose to 2mg because this was a very small dosage. She also said I would probably be on Ativan through menopause which could be 5 or more years.

If you know anything at all about benzos, she basically demonstrated the normal lack of understanding of most physicians when it comes to this medication.  This drug should only be taken for 2-3 weeks (see Physician Desk Reference for prescribing info) and shouldn’t be given to someone with a compromised lung function.  Hello? I have asthma.

Likely, her orders to take “as needed” saved me from even more years of suffering because

2)  After 3 months use, I developed interdose withdrawal – basically my body stopped producing gamma-aminobutyric acid (GABA) because the benzo was providing that.  I suffered a list of symptoms including rapid heart beat, high blood pressure, coma like fatigue (sleeping 18 hours a day), dizziness, brain zaps, cog fog, migraines, gastro pain, etc.  In one month I saw 7 doctors, including 2 visits to urgent care.  No doctor could find anything wrong except for high blood pressure which I’d never experienced before, and which went away during taper.  They wanted to add blood pressure meds (I said no), and gave me several rounds of steroids and antibiotics “just in case”.  Finally we discovered the one prescription medication I was taking caused every side effect I was experiencing.

The problem with benzos is that once your brain stops producing GABA, it takes a long time for the neurons to repair.  If you cold turkey the benzo, or taper too rapidly, the body suffers terribly, perhaps for many years, while the brain repairs.  A successful taper means slowly reducing the amount of drug in your body in small enough amounts that you “fool it” and it isn’t shocked by the withdrawal of drug.  For me, the dose reduction that worked was .00125mg per day via a liquid micro taper.  Staying at 7% reduction per month made my symptoms bearable.  Hard, but bearable.  If you are thinking of tapering your drug, please seek advice from benzo experts in the UK who take this iatrogenic illness seriously.

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In just a few weeks I will celebrate 2 years since ending my taper.  I wasn’t 100% healed immediately, and it took months for my body to start responding more normally to food, rest, stress, etc.  Since then my husband has retired, my children are done or nearly done with college and we left our home of 20 years and moved to a beautiful mountain town in West Virginia.

I’m part of a support group on Facebook for victims of benzos.  There are MANY groups to join and organizations which are now working hard to get the word out to consumers about benzos since we cannot rely on the medical industry to protect us from dangers caused by Big Pharma.  We just can’t.  Doctors get their prescribing info from pharmaceutical companies who have a vested interest in making money, not healthy patients.  Drug studies do not have to be released if they do not support the positive results Big Pharma wants known.  Lobbyists have power to sway legislators.  Where does that leave the average housewife who simply went into her doctor’s office and said, “Help me”?

When World Benzo Day first began being talked about among my compatriots, I didn’t actually believe anything would come of it.  The irony of this medication-induced illness is that it makes us very very sick for a long time and although intentions are good, projects often dissipate because the workload cannot be met by an army of ailing people against a machine of high powered pharmaceutical/congressional executives.

Then, I started to see the seriousness of this particular group of fighters and the strides it was making.  The question then became, for me, how much of my baggage did I want to unpack in my new town, with friends I’m just beginning to know in this new phase of my life?  I mentioned earlier that we lost friends because of my illness.  That is one lingering aspect of benzos I will never quite get over.  I was very active in my church.  I taught children, worked with teens, held bible studies in my home, hosted tons of events, ran a mothers group……for 17 years at the same church before becoming ill.  Then, my illness.  It felt like I was a leper who was unworthy of care.  I had people tell me (or my husband) this was all in my head….she’d be better off dead…and we had a lot of silence.  My husband went to church without me starting in January of 2013.  We could count on one hand the number of people who supported him or asked about me.  A couple meals were delivered, a few cards, but mostly crickets, including from the church leadership – people whom I thought were friends.  If you read my blog from the time I became ill till now, you will realize this is the first time I’ve ever explained my feelings of abandonment by my church “family”.  I was always very careful to never be specific or bring in the fact that a Christian organization made me feel unloved. I didn’t want ammunition to be used against God, because I NEVER doubted Him. Often the behavior of humans is lumped into the meaning of God, but we were able to differentiate the two. God never fails.

Once I was feeling better, and able to venture out to local places, I began to experience PTSD. I would run into church members and quickly realize that in my absence, stories must have abounded.  It was clear people thought I had a nervous breakdown, was a drug addict, abused them and did this to myself or had a variety of mental conditions. I cannot imagine the gossip which surrounded my health, but it surely has to have been the reason I become persona non grata to many.  My husband retired a full year earlier than planned because I could not cope in that environment where every encounter ripped off the bandage of the hardest time of my life.  I decided to be completely open and honest in this post because I want people to understand the tremendous damage benzos cause which have everlasting impact.  I was lucky to not lose my marriage; many do.  I was lucky that my children were old enough to manage and stay supportive; many other parents have young children or lose their children through their illness.  I was lucky that I learned how to taper and didn’t succumb to suicide; sadly, many many people do not get that lucky.

I’m sharing on World Benzo Day because even though I don’t want to relive this, I don’t want you to ever go through this either.  Please learn from those of us willing to open up all our suffering to the public.

I am you.

I am your mother, sister, daughter, friend.

A simple medical complaint …. listening exactly to my doctor’s directions ….. a life changed forever.

Research any drug before you take it.  Know the dangers.  Ask questions.  And then ask more questions.

http://cepuk.org/

http://www.benzo-case-japan.com/index-english.php

http://www.madinamerica.com/2015/11/language-surrounding-benzodiazepines/

http://www.madinamerica.com/2014/04/dont-know-letter-doctor/

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

 

 

 

Day One

Today our family celebrates a milestone; one almost 30 years in the making, and significant for many reasons.

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Day 1 of the rest of his life

Doran is now retired.  We waited for this for a long time, yet after all the planning, it feels surreal.  He worked hard throughout high school, then college and years of grad school to attain his PhD.  He spent his professional life working for the government as a scientist, making contributions which will continue after his departure.  He is known in his field, has been published numerous times, awarded patents and recognized for his contributions.  We couldn’t be prouder of all that he has achieved as a dedicated Federal servant.

As his family, though, we also want to celebrate how he managed a successful career while being an incredible father and husband.  Doran grew up in a working class family with little money.  Because of that, he learned how to fix things, build things, and be self sufficient.  When we needed work done in our home, Doran did it.  He remodeled kitchens and baths, designed and built our deck, fixed leaks and appliances….and always tried to include the boys in these endeavors to teach them skills.

When we decided to homeschool starting in grades 4 & 6, Doran became their teacher in math and science.  This meant working his full time job (which included going to the gym daily for his health and commuting 40 minutes each way) and then coming home at night and teaching.  If you are unfamiliar with homeschooling, and think this is common, it isn’t.  While many Dads will be in favor of homeschooling, not many will take on the responsibility of participating as a teacher.  He was always patient and loving, despite what surely must have been tiring labor.  One of our fondest memories of early homeschooling was our youngest complaining during math class.  He said he liked homeschooling, but it was harder than public school.  Doran replied, “yes, son. It’s because we love you and won’t let you just slide by.”

Our oldest planned to study science in college, so Doran spent a lot of time teaching him math and science at the college level while in high school.  When he went on to college, he proclaimed his freshman year as being very easy since it was all review work.  Doran gave so much of himself to our boys spending time with them, engaged with them, every day.  I pray that they understand when they are older how truly blessed they were to have a Dad so willing to put his own needs to the side in order to equip them with the skills they would need to be good men.

Finally, I must praise Doran for the patient and loving husband he has been to me for almost 26 years.  Both of us came from dysfunctional families carrying baggage which would overwhelm most people.  The fact we found each other and broke the cycle of damage can only be because God had this planned.  When I was ill, and mostly bed-bound, for 17 months, Doran exemplified everything a loving husband should be to a wife.  He patiently cared for me, took on all my roles, managed the house, tended to the needs of our sons, and always treated me with kindness.  You would imagine that any spouse would do the same and this is not something worthy of acknowledgment.  Sadly, it is not.  I was blessed beyond measure with a man who has the compassion of a hundred men, and the patience of Job.

Today is truly the first day of the rest of Doran’s life.  We lived frugally for decades and he thoughtfully managed finances to allow us to retire to our beloved Canaan Valley.  We are surrounded by nature and beauty and now live in a place where outdoor-Doran can thrive.  The number one concern all the retirement seminars Doran attended stressed: boredom is a killer.  Have a plan.  Doran will not be bored here.  There is hiking, biking, cross-country skiing, canoeing, new friends to make and groups to join.  He plans to read for pleasure, something put aside during his working years.  As a hobby, he also plans to continue to do the science he was working on to help those continuing the research.  We also hope to have a home filled with friends and visitors to share our new world.

I’m excited to see what God has in store for us.

You have arrived

It would be difficult to describe how busy and stressful the last year of our lives have been in a blog post short enough people would read. So, briefly, a recap would look like this:

  • Continued healing and nurturing from my iatrogenic illness
  • House hunting and purchase of the West Virginia home
  • Moved 1/2 our belongings to WV in December
  • Oversaw renovation of that home from Maryland
  • Renovated Maryland house A LOT
  • Tossed, donated and packed up 20 years of belongings
  • Found an apartment and moved oldest son
  • Listed and sold family home in 5 days
  • UN-BE-LIEVABLE stress from buyers and settlement company
  • More of that last bullet point, grrrrrr
  • Moved rest of belongings and me to WV
  • Doran returned to live with son and work for another month

Part of my mantra after dealing with my debilitating illness during 2013-14 was to appreciate everything and enjoy the journey.  For the most part that has been true, but the last few months, I will admit, were hard to enjoy.  The stress was beyond my coping ability and my compromised central nervous system just said ‘no more.’  By the time I pulled away from our Maryland home, following Doran in the rental car, I felt little.  I certainly felt no joy.  Perhaps that would be normal for anyone, but I was disappointed that the most important lesson of health – to be IN the now, had failed me.

I was also melancholy. Because of buyer demand, we settled earlier than we wanted to which meant driving separately so that Doran could return because retirement date did not align with house selling date.  And by this time games were being played on the real estate end, and the process was not going well.  Rather than he and I driving off into the sunset together free of that home and life, each of us was alone and had concerns about how the house sale would pan out.   I was decidedly un-Christian in my thoughts about real estate, buyers, and even the house made me angry.

And then a funny thing happened on the way to my new life…..God sat next to me on that drive which I thought I was making alone.  He filled my head with decades worth of memories of a van packed with kids and dog and cargo as we headed together to vacation in Canaan Valley.  I smiled and remembered.  And with each mile away from the Maryland location where I felt so much trauma over all I endured when sick…..all the loss I felt from that community….the life which truly ended when I had to hibernate with the brain/cns injury….I felt peace.  twitter

The expression ‘I felt 10 pounds lighter’ was true for me.  I found my smile as I climbed the mountain.  And, God, who we know has a sense of humor, sent me a verbal gift to go with that sense of peace I discovered in the car.  As I made my way up our dirt and gravel road away from civilization the GPS simply said: You have arrived.

Indeed.  I have.

 

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the next steps

My heart is heavy. This is the last night my oldest son sleeps in his childhood bedroom. Tomorrow he moves to his own apartment; Monday I move to another state 4+ hours away. I have defined the last 23 years of my life as ‘mom’. I did it joyfully and with no regrets.

My whole goal has been to raise happier, emotionally healthier children than my mom raised. I wanted my boys to understand with no doubt whatsoever that they are treasured, and valued, and cared for unconditionally, while also instilling in them the strength and confidence needed to go out into the world. All of this because I believe the Lord allowed me to have these boys in order to grow men who are destined for things I can’t imagine.  twitter

When we took our first born son to college, leaving him was something I dreaded. As his stay at home mom, and home school teacher, I wasn’t ready for the next part of the journey. How do you plop your baby in another state and drive away?

The speaker at the welcome ceremony at Grove City College was exactly who I needed to hear that morning. When he finished his talk, I was filled with the faith of the Holy Spirit that God had this and I could let go.

His words then apply now so I share them here to remind me:

You are prepared.
You have been called.
And God has a plan.

Those words 5 years ago were meant for apprehensive freshman at the start of a journey which might be frightening. Today, I repeat them for me as I begin my own new journey as long distance Mom to grown, capable, and most important, Godly, men.

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After years of dreaming of retirement to our beloved Canaan Valley, WV the time is fast drawing near. Our home of 20+ years goes on the market this week. It is one of the moments in time that you thought would never arrive, and in the blink of an eye, here it is.

If you know me, you know I talk to God daily and try very hard to turn to Him in all things, and let Him lead my steps. So, it is inevitable that this sale is a point of conversation He and I are having. One of the main goals in selling a home is getting top dollar, but I won’t be praying to God to “show us the money.”

Instead I’m praying for the following:

1) Let this home be a blessing to the next family. We couldn’t have asked for a better place to raise our kids. This home was full of good times and memories which will last forever. I hope those who follow enjoy it just as much as we did.

2) Let the next people be kind. Our neighborhood is full of amazing people who have enriched our lives. I hope whoever takes our place brings smiles and joy to those who live on this street.

3) Let there be peace throughout this process. It is stressful for everyone and I pray that things go smoothly and each of us is satisfied. We bought from owners who were deceptive and left us with expensive repairs which we made. I pray that we have been good caretakers and leave the property in better shape than when we received it.

4) Finally, I pray that when my children look back at their childhood, they recall happy memories of a loving family. I hope they know we chose people over things for a reason and that tattered furniture was a sign of time well spent with the right priorities.

I found some pictures and each made me happy. Thank you to those who crossed our threshold during our time in Rockville.

We are blessed.

 

 

PicMonkey Collage

One Year Out

For those who follow my experience with the benzodiazepine Ativan (lorazepam), here’s an update.

My doctor prescribed 1 mg Ativan to be taken as needed for tongue pain caused by menopause.  After 3 months use, I developed interdose withdrawal – basically my body stopped producing gamma-aminobutyric acid (GABA) because the benzo was providing that.  I suffered a list of symptoms including rapid heart beat, high blood pressure, coma like fatigue (sleeping 18 hours a day), migraines, gastro pain, etc.  In one month I saw 7 doctors, including 2 visits to urgent care.  No doctor could find anything wrong except for the blood pressure which I’d never experienced before, and which went away during taper.  They wanted to add blood pressure meds (I said no), and gave me several rounds of steroids and antibiotics “just in case”.  Finally we discovered the one prescription medication I was taking is only supposed to be used short term (2-3 weeks), and every side effect I was experiencing was because I followed my doctor’s orders.

The problem with benzos is that once your brain stops producing GABA, it takes a long time for the neurons to upregulate.  If you cold turkey the benzo, or taper too rapidly, the body suffers terribly, perhaps for many years, while the brain repairs.  A successful taper means slowly reducing the amount of drug in your body in small enough amounts that you “fool it” and it isn’t shocked by the withdrawal of drug.  For me, the dose reduction that worked was .00125mg per day via a liquid micro taper.  Staying at 7% reduction per month made my symptoms bearable.  Hard, but bearable.  If you are thinking of tapering your drug, please seek advice from benzo experts in the UK who take this iatrogenic illness seriously.

It took me 17 months to taper a drug which I took for only 3 months before my brain and central nervous system were damaged.  My last dose was July 23, 2014.  I stepped off feeling close to 100% healed, and saw improvements in my health through most of the taper.  I went from blogbeing unable to sleep to unable to stay awake for 2am doses during the last few months.

When I completed the taper I still struggled with fatigue. I would get hit with sudden waves of exhaustion and inability to fight it off. I also felt lethargic and unmotivated. I wonder now if the lack of interest which continued for a while was more post traumatic stress and trying to figure out what was left of my life outside my walls. It has all gotten better.

Just like during taper, right after I stepped off, I continued to be a slave to the calendar. I watched days go by and any tiny blip gave me jolts of fear that this might be delayed withdrawal.  For some who taper too quickly, but feel okay during the taper, months later they can be slammed with symptoms.  At month 4 I knew that I should no longer fear delayed; I’d escaped that.

At month 7, despite some small remaining brain things (concentration was hard, following book plots was hard, staying interested in movies was hard), I celebrated being at 100% healed. By then I’d read enough on perimenopause, and was actively tracking my symptoms of that, I believe the remaining symptoms I was dealing with were peri not the benzo.

More recently it suddenly occurred to me that I’d listened from start to finish to 5 audio books in a row and remembered the plot. I read before bed and enjoy it. That came out of nowhere and was just normal. I’ve stopped thinking about symptoms and just live life.

The thing I think that would have helped me to know during healing is: how do you live after this experience and not be fearful or have anger?

I believe the brain engages a sort of amnesia which allows us to forget much of what we suffered. I don’t think about Ativan or what I went through on a regular basis. When I talk about it, I no longer cry. Even though I remain as an admin in my benzo support group and participate daily, my brain is forgetting what the experience was truly like. This week someone asked about physical pain and who doesn’t have it. I spent a long time trying to remember. I didn’t journal everything but I know that there were times I took 3 baths a day because the Epsom salt and essential oils were the only thing that helped with the aches. So, I can say I must have had pain, but I truly don’t remember the specifics. I know there was stuff with benzo belly and laying on my stomach in a semi fetal position when it hurt – but I can’t remember the details, how often, how bad…..

I talk less about those 2 years now because it feels more like the plot of a barely remembered book than something I struggled with 24/7. I am in an interesting position where for the first time I can see the perspective from friends and family on this – how could this possibly be true? How can one tiny drug (taken such a short time for me) have led to such damage? Especially now that it no longer feels like something I lived; it doesn’t feel like my story, my pain, my losses, because everything feels right and better.

After-benzo-Sue is happier. I don’t sweat the small stuff anymore. I’ve taken the techniques of healing, have learned how to talk myself through stuff, find alternatives like nutrition, exercise, oils, to fight what in the past would have meant an ibruprofen or doctor visit. I don’t get into a panic if I feel a twinge. I am more relaxed about everything. Went to Dunkin Donuts for a freebie coffee and just plain forgot to ask for decaf. After drinking about half, and realizing I goofed on my order, I handed the cup to my husband and never thought about it again. No panic. Had no revving of symptoms, which was nice, but still plan to avoid it.

I know many of you still exist in a place of fear given how our brains get hijacked during this season of suffering. I just want to reassure you with all my heart – it won’t be this way forever and you won’t be anchored by the baggage of this experience. One day it will all be over. You’ll come out wiser, more content, better equipped to deal with life than the average person.

You just need to hang on until your brain resets.

What’s the job where if you do it well enough after about two decades you are guaranteed to be fired??  Oh yeah, motherhood. blog

The summers of 2013 and 2014 I was suffering from the damage caused by Ativan and it’s impact on my brain and central nervous system.  One huge side effect of that iatrogenic illness was emotional blunting.  I felt nothing.  I spent 20+ hours a day in bed just trying to survive.  Had there been a fire in my house it’s not an exaggeration to say I am unsure I could have worked up the energy to bother getting up.

During those lost years of illness my children grew up.  The youngest graduated high school and joined his brother at college.  The transition from homeschooler to successful college student was seamless.  They managed their course loads, performed well academically, chose good friends, made wise decisions.  Both have become amazing citizens and will be successful in anything they attempt.

But now I am feeling well and FEELING in general and they are living at home.  But instead of the kids I sent off to college, I’m living with two adult males who no longer need a mommy.  That’s been my identity and the only job I was designed for since June 1993.  My brain knows I’ve done my job well and it’s time, but my heart says “just a little longer please.”  I’m grateful that I can again feel all the emotions God gifted us with, but some days I wish that elusive time machine would finally be built so I could hold my boy’s hands and relive some of the best years of my life.

I love this scene from Galaxy Quest.  Gwen sums up what I was and what I shall always be.  Please watch:

http://www.imdb.com/video/screenplay/vi2625634841

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