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Archive for the ‘Benzo’ Category

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/

 

 

 

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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.

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I have realized over the last few weeks as I experience more good moments, hours and days, that I think my benzo journey is finally over.  Those are scary words to say because we learn on this road that Satan is listening so he can jump on your moments of joy.  But, I am willing to take that risk in order to step out on faith and say that my health is better now.  I am grateful for my family who never wavered in their support, my new friends who partnered with me to get through this awful iatrogenic illness and my old friends who stuck around to see me re-emerge from hell.  God has been good throughout.  blog

So why the title for this post?  Limbo seems like a bad place, especially if you have a background in Catholicism.  But I’m using it as Webster defines: an intermediate or transitional place or state.  After 2 years of living a mostly housebound, isolated period of illness, life can’t revert back to pre-Ativan Sue.  I’m not that person, and the world is different now.  A friend gave a great analogy – returning home after 4 years of college left her feeling like an outsider among lifelong friends.  I’m having that same feeling, except my 2 years away weren’t filled with college adventures and fun memories. 

My husband is eligible to retire in January, and our youngest graduates college in 2017.  We had planned to stick around until his graduation and then relocate to West Virginia.  One lesson we learned from this illness is that life is short and tomorrow is not promised.  We have changed plans and this time next year should be moving into our new home.  My job is to ready our house of 20 years for sale.  I’m going through every closet and room, donating and tossing.  The upside is I see my accomplishments and feel pride that I am able to do this after such a period of inactivity.  It feels great to contribute in a meaningful way to our family again.  The downside?  A lot of tears as I revisit the past.  Every piece of artwork, old photo, notes of encouragement has me emotional.  Improvements to the house are meant for resale, decisions are based on recouping money spent and life still feels tentative.  We begin house hunting in the Fall and I am champing at the bit to begin my next phase.

But, if you have to live in limbo, put on the song and dance your way through it.  Time passes either way, enjoy it while you can.

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I can vividly recall being excited by certain landmark birthdays.  Turning 13 and becoming an official teenager.  The Sweet 16 of blissful youth.  18 and believing that to be the sign of adulthood.  And, of course, 21 because legal drinking and partying at that age seemed like a sweet deal.

After those numbers, though, what woman looks forward to any increase in age?  I was always happy to attend the birthday lunches, buy gifts, celebrate for my friends, but I hated the same being done for me.  There were even birthdays where I insisted that I didn’t want friends to sing Happy Birthday.  So they hummed it.  Which is even longer and more painful than just singing the stupid song.

And then I got sick.  Starting in January 2013 my world changed.  I basically slept, suffered, hid and hurt my entire 48th year of life.  Only about 6 months into being 49 did I start to feel big improvements in my brain and central nervous system and know that I would heal and get my life back.    bday

Today I turn CELEBRATE my 50th birthday.  I rejoice and embrace the fact that I am alive.  Life is better than I deserve.  I’m almost completely healed and I have this sense of awe about how little it takes to be content.  My husband and I have several times wondered if given the chance to turn back the clock, would we rewrite history and delete the part of our lives which involved 2 years of recovering from damage caused by a prescription drug.  Would we avoid all that pain and suffering but also lose all the blessings which came from the experience?  As hard as it is to imagine, we wouldn’t alter our past.

No, this is not the life I envisioned.  I never imagined the level of physical and emotional trauma I endured.  I both needed and hated the isolation as every day brought new suffering.  When my youngest went to college the plan was I would return to work and be the scholarship fund.  Those plans disappeared thanks to Ativan and big pharma.  But on the flip side, I also never understand how strong I could be, and how I could learn to love myself.  I witnessed a husband more amazing than imaginable as he partnered with me.  My boys show compassion bigger than their maturity level should allow as they support a sick mom.  Blessings are everywhere if you stop and look at the world around you.

So…my birthday wish for each of you is to encourage you to find joy where you are in your life right now.  None of us gets the fairy tale we dreamed of as teenagers.  That’s just not reality.  There are disappointments, loss, financial challenges, illness….many things which make fairy tale existence impossible.

But this is our one life.  Embrace what you have, make the most of the gift of time and let your friends sing Happy Birthday as loudly and badly as they can.

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It was only this morning when talking with my husband about what I’m feeling, or not feeling, that I realized I am in a wave.  My first in the 6 months since ending the Ativan taper.  A wave is a period when symptoms return or get stronger.  For me this wave has included increased fatigue, emotional blunting, apathy, inner body vibrations, fear and some physical pain.  Waves come and go and there is nothing to do but ride it out.  Surfer cutting back on a wave

After 6 months of feeling pretty good, my logical side required a list of possible reasons why I’m thrown back into this mess.  I could guess that the stress of holidays, increased activity with kids home from college, doing too much because I did so little for so long, eating out with who knows what going into that food, not following paleo while kids are home……..

All of those could be contributors, but the issue with neuronal healing from this iatrogenic illness is that nothing is linear, the time scale is unknown; we can expect that sick-to-healthy even after a taper takes time and patience.  I think this wave is a good reminder to me that although I am better than I was, I still need to treat myself gently.

I hope for those who watch my journey or are following behind, that my honesty is helpful.  My fellow warriors compare even when we know logically that each of us is different.  A wave doesn’t mean I’m drowned, it means I need to call in the lifeguard, tread water and rest as I build up my strength to keep going.

I attended a holiday party recently and left feeling quite sad.  I felt misunderstood and invalidated.  I know people try to be kind, but I’m not sure they understand how discouraging some comments can be….and how this experience has affected me and my family and continues to affect us.  Instead of advice telling me how to fix this, or praising yourself when explaining how you never take medications, all a benzo victim needs is validation.  Accept that what we say is true.

In God’s perfect timing, a trailblazer in the benzo community, Matt Samet, published an article today which fits what I feel perfectly.  I hope you take the time to read what he wrote to understand what this experience does to those of us damaged by big-pharma.  Matt and many others are given benzos as part of the “treatment” designed by the psychiatric machine but….

if you don’t have a “label”, and haven’t been to a psychiatrist, that doesn’t mean you are safe.  That doesn’t mean you can poo-poo his words and think “well, I don’t have those type of “issues”, so I don’t need to know or worry about benzos.”

I was a happy, healthy 40 something female who was on no medications and living life.  I went to my primary care physician after months of a burning sensation in my tongue.  My tongue.  That was diagnosed as hormonal and common.  Take this pill.  We raise our children from infancy to believe the people in the white coats know what they are doing and will make us better.  I believed my doctor.  Three months of as needed use of Ativan (lorazepam, a benzodiazepine), and I’m suddenly a broken victim who has to spend 17 months tapering and hurting while I try to repair from the damage done only because I trusted my doctor.

 

Here is Matt’s post which meant the world to me today:

http://www.madinamerica.com/2015/01/burden-proof/

 

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Today I celebrate 19 weeks since completing my Ativan taper.  I am not 100% well.  I am not even sure I remember what 100% healthy feels like, but I am content.

After 17 months of a taper for a prescribed medicine taken as directed for 3 months (how insane is that?), one thing which worried me was how to reenter the world.  I am now at almost 2 years since the medicine damaged my brain and central nervous system, and I am still finding out who the new me is.  There is a quote used a lot by those healing from iatrogenic illness:

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is really over. But one thing is certain – when you come out of the storm, you won’t be the same person who walked in. That’s what the storm is all about.” – Haruki Murakami

So who comes out of the storm?  We aren’t the same.  There is no debate among the healed.  We universally express the feeling of serenity, things which previously were bothersome now roll off our backs.  We see things differently.  We are the people in “The Matrix” who took the red pill and now know the truth.  But then how do we relate to others who haven’t lived this experience, who still live a life where small annoyances are big and meaningless things consume so much of their time?  Who haven’t a clue, and often don’t care, of the pain we lived for so long.  blog

It is such a convoluted state in which to exist.  Everyone wants to be “normal” and do things which are easy, socially acceptable and don’t require sacrifice.  What we have to do however, is create a new normal.  This illness lasts for a long time.  That is just a fact.  Even after tapering cautiously and wisely, my body continues to heal and I can simply never go back to the state of “normal” it once enjoyed.  A typical healed benzo should expect that stress revs our symptoms, diet impacts our health, OTC meds can set us back, dental procedures may throw us into withdrawal again.  I will never be able to eat takeout Chinese food or drink a beer with friends.  That is just another fact.  It won’t kill me, but I will need to be aware of how I live and the choices I make in order to not re-injure the central nervous system.

For those still healing, I have advice which may or may not mean anything but here it is:

  • Start small.  You can’t go from coma to marathon overnight.
  • Reach out to the faithful; the friends who dried your tears throughout.
  • Watch your diet. We know gabas exist throughout the body, so anything going in can have an effect.
  • Please protect your brain. Yes, a glass of wine with friends would feel normal, but ultimately may cost you a price you can’t afford.
  • Take as much time as you need.
  • Love yourself.  You are a warrior who survived hell.  There is no stopping you.
  • Make the most of your health.  We have learned the ultimate lesson.  Health can be taken from us in a moment.

I am living this quote.  We all should live deliberately.

“Most people can look back over the years and identify a time and place at which their lives changed significantly. Whether by accident or design, these are the moments when, because of a readiness within us and collaboration with events occurring around us, we are forced to seriously reappraise ourselves and the conditions under which we live and to make certain choices that will affect the rest of our lives.” – Frederick F. Flack

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We are making our own rules these days, and decided since I missed the 2013 holiday season we would double this year’s Christmas festivities.  On November 16th my husband and I secretly put up the tree and decorated the house – it’s like being in the North Pole.    blog1

With just the two of us to relive our time capsule of holiday ornaments and memories, I was able to reflect.  We bought the tree we still use the year we married, 1990.  It was our first Christmas together and the first time our cats, Spike & Cal, had ever seen a tree inside the house.  Spike couldn’t resist her cat-nature and climbed into the branches to hide.  Of course, our brand new tree sustained damage.  One large bottom branch was bent and hung limply.  For some reason my husband found a WHITE shoelace to tie up that green branch to at least look normal. 24 years later that same white shoelace holds up the branch.

Now at almost two years since becoming ill, and not quite 100% healed, this year I saw the damaged branch differently.  It didn’t break, it bent.  It didn’t ruin the joy of the next 24 Christmases.  In fact, looking at that shoelace this year was like a movie rewind of my life and I was that 25 year old bride again alone with my husband with our whole life facing us.  Yes, he and I are both more worn, our own branches are bent, we have grayer hair than before, but it does feel like this new stage of life is an adventure that awaits.

The damage we sustain as we live in this imperfect world doesn’t have to beat us.  We can continue to grow.  We can be firmly rooted and know that despite the storms, the battering, the cats who jump on our weakened branches – we are stronger than we could ever have believed.

Find your white shoelace inside yourself. With a faithful partner. Devoted friends. God.

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