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Posts Tagged ‘Taper’

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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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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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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As the end of this journey neared, I have thought a lot about what this celebratory post should say. What profound words of wisdom I could share to precisely impart into anyone still reading this blog the dangers of the medically prescribed drug, Ativan (lorazepam, a benzodiazepine). How best to sum up 18 months of illness, pain and suffering from a drug taken as directed for only 3 months.

Then I understood. If you have been following along, by now you either get it or you don’t. You are either sympathetic and understanding, or sit distantly back sure that in some way those of us suffering the effects of withdrawal from these prescription meds did something wrong, brought it on ourselves or are inconsequential outliers and don’t really matter.

So, instead, this post celebrating the first day of not having to swallow poison is intended for only one person. If anyone deserves a medal for service above and beyond the call of duty, it is my husband. A man I have known and loved for 26 years. But honestly, it has only been in the last 18 months where I understood what it felt like to be loved unconditionally. His actions demonstrated to me that I am truly blessed by God with the one person in the world created to be my soul-mate.

The rest of this is for him. You can read if you want, but please forgive any mushy love which I hope he feels from me.


 

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My Dearest Husband,

At our wedding in 1990 we both said the words “in sickness and in health”. As a 25 year old who had never faced real illness, I said those words without meaning. Clearly, you meant them from the depths of your soul. When I became ill in January 2013, it was the beginning of me being broken down and rebuilt by God. I have never known such pain, sadness, despair and isolation in my life. Because you loved me and were willing to learn all about withdrawal and the suffering this medication brings, and because you showed indescribable compassion, WE made it through together.

Thank you for your kindness and empathy as I cried, hurt, and did little but rest for the past 18 months. Besides working full time, seeing to the needs of our boys, cleaning, chores, handling everything in the household, you did what most spouses do not do for someone tapering – titrating that darn drug which was beyond my ability for most of this ride. Your willingness to partner with me and take on that job still amazes. And besides the actual physical work of titrating, you were my soundboard and my memory. You kept me honest when I had peak fever and wanted to cut when signs said hold. You walked every single step holding my hand and making it as easy as a stroll through hell can be.

I know my world was tiny. My daily pain and loneliness was all I had. Conversation was limited to this depressing topic. But you listened and shared it with me throughout. You even loved me so much that you shared concern for my friends going through withdrawal. Your compassion extended to the hurts of Internet friends you knew only by my stories. How big must your heart be to care for strangers and empathize with what they were enduring?

I have loved you since our early days but the pain of my childhood, and traumas I suffered because of that, made me a woman who felt unworthy of love. Why in the world would anyone choose me? And when does the shoe drop and I end up alone as I deserve? This awful experience, which I would never wish on another human being, allowed me for the first time to feel actual love. You saw me at my weakest and worst and accepted me, cherished me and made me feel worthy. God’s plan was never clearer to me than when I realized I now understood unconditional love. As much as I wish we had never had to endure the past 18 months, I will be forever grateful that instead of growing apart under the stress of chronic illness, we instead bonded in a way I will treasure forever.

I pray that our boys witnessed and learned from the greatest man they will ever know. If they show their wives even half the devotion you have shown me, those women will be blessed.

My deepest love from now through eternity.

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I am risking the wrath of the withdrawal gods who never want us to be too comfortable or too confident.  But, here I go rolling the dice that if I say it out loud, it won’t be taken away from me.  As my Ativan dosage became lower, the cut percentage increased in size and symptoms got worse.  I spent a rough couple of weeks in tears afraid I would never be able to finish this long, grueling taper. Light-at-the-end-of-the-tunnel

God has given me several great supportive friends who are knowledgeable in tapering and patient with me.  After consulting with them, I was convinced to again retry what is called micro-tapering.  Essentially, instead of reducing by a larger number and suffering as the gabas catch up to the cut, this method requires a teeny tiny daily reduction of the benzo.  The hope is you find the sweet spot where the brain goes about its business, adjusting to less drug, without the body punishing you.  My sweet spot is a daily reduction of .00125mg of the drug.  Again, I thank God for my poor husband who has his own Breaking Bad-like set-up to liquid titrate my dosage for me nightly.

I cannot adequately express the feeling of joy and hope I have experienced over the last two weeks.  Firstly, actually feeling a feeling is tremendous.  Most of the last 15 months there has only been a fog of sadness and depression.  Emotions were stripped from me as a side effect of the benzo.  Now, I am starting to remember what being human means.  I am awake and doing more.  Cooking, light cleaning, planning ahead.  I can go most of the day without needing to nap.  Many of my previous symptoms are lessening.

I still have a very long way to go.  If I overdo it, my body vibrations remind me to slow down.  I cannot read and understand for very long.  Leaving my house alone is still not on the agenda.  I’m not sure I’ll ever like sunny days.  But I treasure the fact that I’m wholly convinced that I am seeing the end of the tunnel.

 

 

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