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Posts Tagged ‘Benzo dangers’

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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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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Jumping onto a moving roller coaster is hard, but reentering the world after 18 months of illness is worth a few bumps and bruises.

I realized today that I missed the “anniversary” of the beginning of the Rx nightmare.  October 15, 2012 was the day my friendly gray-haired doctor handed me the presciption, smiled and told me this pill would take care of everything.  Who knew that listening to her words would end up causing so much pain and loss of time.  But, what’s done is done.  I have the choice to dwell only on the negatives of this experience, or make the most of the gifts which have shown themselves everyday throughout the whole process.  I prefer positives.  huzzah

Yesterday my husband and I ventured to the Maryland Renaissance Faire which is situated on a 25 acre wooded lot.  I’m fairly certain I walked every acre of that forest.  It was a sold out day with almost 16,000 people, which after two years of near isolation, got to be a bit overwhelming.   Feeling every emotion, noticing colors, smiling, striking up long conversations with people – these are the most amazing parts of recovering my health.

I was probably the only person at jousting who had to wipe away a tear.  It is just beyond words the magnitude of my gratitude to be able to experience life again.  I sat in the stands watching people having a good time, and I was one of them.  The journey to get here was long, overwhelming and at times I was sure would beat me – but it didn’t.  I won.  I’m humbled and grateful and kinda hope that I never lose the tear which comes with the joy of living.

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Almost 11 weeks since I finished the evil Ativan taper and things continue to noticeably improve.  Just enjoyed THE most deserved vacation in our lives – 9 days at our future retirement “city”, Canaan Valley WV.  Besides loving the return of human feelings after the brain repaired, the best thing about this vacation was the exposure to the outside world, stimuli, foods, noise, etc. resulted in no visible revving of the central nervous system.  The problem with benzodiazepines is that even despite tapering properly, one never really knows how healed healed will be and on what time scale.  It was comforting to be out of my safe world and not pay a price.  God is good. kindness

Today’s post is prompted by an experience I just had while grocery shopping.  I shared the following in my benzo group and am posting it here because just as I was visibly moved by this interaction, all my fellow warriors expressed the same emotion.  Many are lonely, left without friends or family, and feeling as though the world forgets the sick.  I hope that if you are reading this, and have the opportunity to be a light for someone, you will grab that chance.  Even the smallest kindness can make a huge difference.

BE THE DIFFERENCE.

 

Had such a touching experience today, and wanted to share because as we sit here feeling alone and abandoned, we have no idea the blessings which await us.

I went grocery shopping alone today and chose the cashier I always went to prior to my illness in January 2013. His name is Wellington and he’s lovely. His face lit up when he saw me and he said he thought I had moved. I gave him the brief overview of being ill for 18 months and what happened to me. He was appropriately shocked, concerned and glad I was better now.

After I had paid he asked if he could give me a hug. Keep in mind everyone behind me also got the benzo speech and stood there while he came around and hugged me. I was in tears by the time I got to the car to have been treated with such compassion and genuine concern.

I wish for all of us that the people closer to us than grocery store cashiers could understand the power of simple human tenderness.

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Today is my 1 month anniversary since completing my Ativan taper.  It is hard to process that this medicine taken as directed for only 3 months cost me 18 months of my life.  The hardest thing for me has been coming to terms with the price paid for being a docile patient.  When you are in the midst of battle you keep one foot in front of the other working your way forward without room for reflection.  Now that I am finished, I stand here perplexed and amazed at the trial I endured.

People ask how I am doing.  This is a hard question to answer because I do not remember what “normal” feels like, and I’m walking on eggshells fearful anytime I experience a symptom that my world will implode and I’ll be dragged back into hell.  If I ever sought “professional” help, the diagnosis would be Post Traumatic Stress.  How can you go through this life altering experience and not have residual trauma?

Here are the symptoms which remain:

1. Occasional rapid heartbeat, especially after eating or stressors.

2. Fatigue.  Never as bad as during taper, but I’m not signing up for any marathons.

3.  Some dizziness.

4.  Still unable to feel motivated or connected.

5. Fatigue.  I know I said it already, but I struggle with this.  It is overwhelming how defeated you feel when tired tired tired.

6.  Still have trouble cognitively and can lose words as I try to talk.

To understand how far I have come, please check out this older post:  https://newoldgirl.wordpress.com/2014/06/09/is-amnesia-a-good-thing/

Contrasting life during taper and after, I think we can call this a success story.  Those symptoms which remain will lift and  life will improve.  blog3

So, here is my quandary – I feel like I am straddling two worlds.  I am clearly not up to re-entering the “normal” world.  Any stress at all revs me and I find myself observing those without benzo experience from a distance.  It is hard to feel connected because I see the world differently.  When I hear someone complain of a summer cold and the few days of inconvenience, I find myself biting my tongue to not be contemptuous.  You’re impatiently waiting for Pumpkin Lattes at Starbucks to return?  I’d like 18 months of my life back please.  You NEED another vacation?  Could I please have a 100% return of my cognitive abilities?

I don’t like feeling this way and hope that as distance from this suffering increases, I won’t judge those who have no idea how life can turn on you in an instant.

Another tapering friend shared these words from her bible study, and I felt like God wanted me to hear them at this moment.

In-Between

Sometimes, to get from where we are to where we are going, we have to be willing to be in-between.

We have many feelings going on when we are in-between: spurts of grief about what we have to let go of or what we lost, and feelings of anxiety, fear and apprehension about what’s ahead.

These are normal feelings for the in-between place.  Accept them.  Feel them.  Release them.

Being in-between isn’t fun, but it’s necessary.  It will not last forever.  It may feel like we are standing still, but we are not.  We are standing at the in-between place.  It’s how we get from here to there.  It is not our final destination.

The Language of Letting Go by Melody Beattie

 

 

 

 

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Unbelievably, the longest, hardest journey of my life is coming to an end.  In about a month I will swallow my last dose of prescribed poison, Ativan (lorazepam, a benzodiazepine).  When I became ill from this prescription in January 2013, I could never have imagined the hell I would have to live through in order to regain my life stripped from me by this “medication.”  Thankfully, humans are resilient and strong and amazingly designed beings who can endure unimaginable circumstances and still come out whole.  The fact that all of us who are damaged by these prescriptions eventually do heal is incredible to me, especially after having lived through the most grueling days of my life. blog

One promise I have made to myself, and to my friends still fighting the fight, is to not leave them.  We call those who have crossed the finish line “the healed.”  Sadly, one aspect of regaining our health is forgetting that there are others still suffering who need support.  Encouraging words, experiences we lived through, a virtual hug and assurance that at one time we were suffering as they still are, but that the pain does end.

When talking with one of my most treasured friends I made on this journey, she was asking for specifics of things which have gone away.  She knew my symptoms as well as I did because she walked this walk with me from beginning to end.  You see, when you are in a battle, the people around you become your life preservers.  We spend so much time with each other in our Facebook group, we truly become family.

What scared me most during that conversation was how much I have already forgotten.  When sick in the midst of withdrawal, we forget what life was like before the pain began.  I would look at photo collages hanging in my bedroom (my sanctuary where I hid for over a year) and not recognize that life.  All the photos of all the events I hosted in my home could not have actually occurred.  Who was that woman?  Where did she go?  I asked my husband over and over if those things were actually done by me because I needed to be told that I did once exist as a person.  If you haven’t lived this, it probably sounds impossible, but we cease to be and stand in a kind of stasis while our bodies heal from the removal of the medication.

So her question about symptoms, and the fact that those memories are fading, scared me enough to want to write down what I endured.  Why?  I don’t ever want to take life for granted.  Yes, it was painful.  Yes, I would never have chosen to experience the mental and physical anguish.  BUT, I also don’t want to forget what I went through.  I came out stronger, more confident, happier, content in the moment.  Grateful to stare at flowers and trees and see the color and enjoy the moment.  When you live in a fog, nothing matters.  Now that I am returning to the world, I want everything to matter.  No, not if my house is clean or things are perfect – that is not a life priority.  But I want to enjoy sunshine, how green the trees are, smells of good food cooking, holding the hand of my beloved husband, laughing, embracing the friends who waited patiently for my return, watching my sons make their way independently.  Everything.

So, before the amnesia completely takes hold and God wipes away the trauma of the pain, here is a brief list of the symptoms I experienced over the last 16 months:

  • inner body vibrations
  • face/body tightness
  • ear pressure
  • fight or flight adrenalin constantly
  • dehydration from lack of self care
  • suicidal thoughts
  • loss of interest in the world
  • inability to make decisions
  • loss of understanding of what words meant
  • inability to follow conversations, logic, plots on tv
  • lack of concentration (could watch 10 minutes of tv at a time)
  • disinterest in the world around me
  • agoraphobia
  • headaches
  • dislike of light, the sun
  • feeling like my words were slow and nonsensical
  • UNBELIEVABLE FATIGUE
  • insomnia (spent a year unable to sleep until the sun rose)
  • stopped dreaming
  • repetitive/looping thoughts
  • brain zaps
  • eyes feeling like they were being pushed out of my skull
  • loss of memory – have zero recall of my son’s graduation during wd
  • teeth pain
  • swelling of lymph nodes following medication cuts
  • rashes, rashes and more rashes
  • flu like symptoms
  • sweating constantly and with toxic smells
  • olfactory hallucinations
  • taste of metal in mouth
  • benzo bloat and stomach pain
  • rapid heart beat
  • eye twitching
  • finger twitching
  • muscle pain

I’m sure there were more, but those are already forgotten.  What I will not forget is that through every part of this journey, God stayed beside me.  Sometimes He only had to walk next to me, other times He carried me and comforted me and surrounded me with the people I needed in order to get through.  You know who you are – and I am forever grateful.

 

 

Philippians 4:11-13
11 I am not saying this because I am in need, for I have learned to be content whatever the circumstances. 12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13 I can do everything through him who gives me strength.

 

 

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