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Posts Tagged ‘Ativan WD’

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 am not a shopper.  I don’t enjoy trying on clothing in super bright, tiny dressing rooms with mirrors larger than should be legal.  While suffering from an iatrogenic illness for two years, I lived in pajamas and leggings.  Friends who visited knew to expect a female Hugh Hefner lounging in pjs no matter the time of day.  My best girl friend even understood when I managed family visits to her home while sick – I showed up in pajamas and brought my slippy socks.

So, today was not wonderful in that I had to go to Dress Barn to begin the chore of finding clothing for my oldest son’s upcoming college graduation.  Cue the abysmal rain and poodle-like hair to put icing on the experience.  Part of my remaining brain symptoms include inability to make decisions and sensory overload from things like muzak, colors, clothes racks, other shoppers, etc.   I met the loveliest sales associate, Marina, who clearly has the patience of Job.  I couldn’t have made a choice with a gun pointed at my head.  The colors all looked too much – too similar and too different at the same time.  Does this fit?  How fat does this make me look? Will this be good inside if it rains, outside if it’s hot?  I kept returning to her for validation and input and even I was frustrated with myself.

God is good and I managed to find two outfits for the two days of events, but most importantly, I managed to do this dreaded chore without a revving of any symptoms.  I found Marina in the back of the store when I was ready to leave because I wanted to make sure she understood the value of her role today.  I wasn’t just a customer.  I am a person reentering the world with some remaining damage who faces each new challenge with trepidation because it’s hard.  blogHad the store employee been unhelpful, snarky, unlovely, I would likely have left with nothing and been frustrated because it was too much.  Instead, she smiled throughout, was encouraging, patient, KIND.  I think people forget the real value of human kindness.

I thanked her for her help and she gave the woman-conditioned response of “no problem.”  I then explained I’m recovering from a brain injury and this was my first time out having to do this and that I only got through it because she was so nice.  And, since I’m now hyper aware of the value of every single moment of life, I began to cry.  Niceness.  That’s all it takes to make me grateful to be back among the living.  Marina understood then how grateful I was and immediately reached out and gave me a hug and well wishes for health and to enjoy the graduation.

I was very lucky during healing to have the support of my husband and sons, several close real life friends, fellow victims of benzos and Facebook friends from various stages of my life.  I hope one permanent effect of damage from Ativan is that I remember how important it is to be kind to people.  We really don’t know the impact we can have on a person….a customer looking for clothes, a lonely senior citizen, a stressed student, a stranger reaching out via social media…..

“I expect to pass through this world but once. Any good therefore that I can do, or any kindness or abilities that I can show to any fellow creature, let me do it now. Let me not defer it or neglect it, for I shall not pass this way again.”

William Penn

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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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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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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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