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Posts Tagged ‘valium’

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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Tomorrow is 15 weeks since the end of the evil Ativan.  Each week brings me relief and new things to celebrate.  Relief because healing is happening.  When I first finished the taper, my fear of delayed withdrawal overshadowed my ability to celebrate.  Every week since, I am more confident that we have done this correctly, and although not 100%, so far from ill that I do feel more like rejoicing.  blog

Today’s milestone is one I treasure.  Up until now I have managed to go off on my own and do simple things.  Trips to grocery stores, a Christmas shopping attempt, errands by myself driving like a teenager who just got her license with the CD player on full blast.

I have also been able to do more things with my husband.  With him at my side I feel protected and safe.  I know I won’t have to make a decision alone or encounter something which makes me uncomfortable.  My cognitive abilities are not back to pre-medicine Sue, so when faced with choices, I become flustered.  Thinking is not as easy as I would like it to be.  Yet.

A good friend just had surgery and is home recuperating.  Today for the first time, I went alone and visited with a girlfriend.  Chatted like a normal person.  Laughed, caught up on what has been happening.  I was me.  I haven’t been able to accept the many offers to go out and do things like this until today, and the fact my friend was home sick meant that I wanted to be there for her.  So I pushed myself.  And I did it.

Seems like the most ridiculous thing in the world to announce publicly that I sat at a friend’s kitchen table and talked, but it’s another victory.  I celebrate each with gusto.

Many who read this blog are healing themselves and my wish is that as you read my story, you are filled with hope to know that we all heal.  I participate in a group where we share everything about this journey.  Today I had the opportunity to respond to a sister-fighter who cold-turkeyed her medication per her doctor’s ill-informed guidance.  After I typed my response, I cried.  I am humbled and grateful for the gifts I received on this journey.

I know as a taperer who found this group before I had a chance to do it wrong, my situation is very different. My 18 months was never as bad as any moment spent in cold-turkey. I sometimes hesitate to comment on posts from those who cold-turkeyed because I don’t feel I’ve earned the right after all you guys endure. I just wanted to reiterate what was said above. I would never ever ever have gotten in line and said “can I have benzo wd and lose time and suffer please.” BUT, I can honestly say I love the new me. I never liked myself pre-wd. I was too short. Too fat. Too scared. Not enough.

Now, I look at myself through different eyes. I am a bleeping warrior. I can do anything. Absolutely anything. I focus on the important things. I value every good thing I experience now. Life is different and I hope I get as many years in this new state of mind as old, fearful self-hating Sue had in her mind.

I can’t wait till every person in here nods knowingly and rejoices too.

 

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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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I haven’t posted here in 6 weeks, because nothing has really changed.  Life continues to be all about reducing my prescription medication, Ativan (lorazepam) a benzodiazepine, prescribed by an ignorant primary care physician who has cost me at least 1 year of my life.  Blah blah blah.

I am tired of hearing and thinking of this myself, so I can only imagine any friends left who still paws1 copyread this or think of me, are even more exhausted by this struggle.

My college son returned for the summer.  He has been gone since the Ativan began destroying my brain and central nervous system, and like most college students he heard my story but was so distanced and busy, he never invested himself in what I might actually be living.  Upon his return home, he just couldn’t see how this tiny amount of a legally prescribed drug, taken only as directed, could possibly be doing all I was saying.  I also had the pleasure of being told by a friend that I was not really sick; it is all in my head.  Others have asked about what I am going through, but when I begin explaining (or my husband explains to other friends), a glazed look appears.  At any pause, they are eager to jump in and share their story of a prescription problem.  Ok.  I get it, they think the side effects they experienced with a drug equals what I am living through.  Sure.  This, of course, makes me feel invalidated.  After all, they had short term, easy to fix side effects – why should I still be laying around complaining?

Unfortunately, Ativan after only 2 weeks begins the destructive dependence for our brains.  Continue on longer, and more damage occurs.  I feel blessed that I only took these as prescribed for 4 months yet when I calculate how long it took to drop to where I am (.53mg a day), it will be February 2014 before I come off the meds completely.  1 YEAR TO TAPER A PRESCRIBED MEDICATION TAKEN FOR 4 MONTHS!!!  The insanity is hard to grasp.

Mostly for my analytical son, but for anyone who may actually care what is going on, here are excerpts from material written by others more educated than myself:

http://www.benzo.org.uk/ashloraz.htm

We have much more difficulty getting people off Ativan than we do heroin, mainly because with heroin … within a couple of weeks they’re off and then the problem is staying off. But with Ativan it’s much more prolonged and they take up a lot more time in terms of treatment than do heroin users.” – Jim Corcoran, Torbay Drug Addiction Team.

Lorazepam is extremely potent: its anxiety-relieving activity per milligram is estimated to be up to 10 times that of diazepam [Valium].  A patient taking what appears to he a small to moderate dose of lorazepam may actually be taking the equivalent of 30-40mg diazepam, a very considerable dose. The high potency of lorazepam has not been fully appreciated by medical practitioners. It is thought to result from the especially high affinity of this drug for benzodiazepine receptors in the brain, coupled with a slow rate of disassociation after binding to these receptors.

 

http://abcnews.go.com/Health/DepressionNews/story?id=6354685&page=1

“Three years ago, I was a very, very healthy 49-year-old,” said Cindy, of Rhode Island. “I never had a psychiatric history; I never was on any psychiatric drugs. Never on any drugs, really.”

Cindy’s gynecologist first prescribed her Valium after she hit a bout of insomnia with menopause. It worked, but eight months later, she began to feel depressed and have rashes. Cindy said her doctor told her she could quit taking the drug if she liked, so she did.

Three weeks later, Cindy said she couldn’t stand or walk without holding on to a wall, and she had inexplicable feelings of physical fear. Eventually, her two college-aged children found her unresponsive on the floor. They wrapped her up in a blanket and took her back to the gynecologist.

“I said, ‘I need to go to the hospital,'” said Cindy. “She told me to go home.”

Symptoms come and go.  I read a post from a fellow sufferer which hit the nail on the head:  I’d gladly trade today’s symptoms for yesterday.  I still suffer from inner vibrations and trembling – I would say that is my worst physical symptom; however the mental of this – the loneliness, isolation, lack of affect, depression – are all hard and taking their toll.

Hopefully, my next post will be lighter and happier and carefree.

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