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Posts Tagged ‘Klonopin’

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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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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Finally, an answer to why I have been feeling so lousy.  I spent most of the month of January in a walking coma; sleeping 18 hours a day and napping much of the time.  I was dizzy, had severe headaches and body vibrations.  In the course of about 7 weeks, I visited urgent care twice, ENT twice, my primary twice (plus a third visit where I sat in the waiting room for 3 hours in case they had a no-show) and finally a hematologist.  No one had any reason for my symptoms, although I was handed several prescriptions for antibiotics, had a hearing test to see if that was part of dizziness, and had blood work repeatedly.

After hematologist ruled out hemochromatosis, and in fact said I was still severely anemic, she also pointed out that dizziness might be result of high blood pressure.  Before that visit, I have never had high BP at a doctor’s appointment, so I wrote off that suggestion immediately.

Finally, I began to do research about the one drug which I was taking on a regular basis – lorazepam, the generic of Ativan.  I was prescribed this drug by my doctor in October after being diagnosed with menopausal induced tongue pain (burning mouth syndrome).  This drug would take care of my pain in no time.  She started me at 1mg a day, but told me that dosage was so small it would likely not be effective.  I should double it if I felt it wasn’t working.  Take it for two weeks daily, then as needed.  She was right – I quickly had to double to 2mg in order to feel relief from my symptoms.  The pill worked.   I tried not to take it daily, but then started to have more symptoms of the burning and would just take my little magic friend.  And it worked.

In January I thought I must have a virus, or Epstein Barr or Chronic Fatigue.  Something to explain why I literally could not keep my eyes open.  My heart was beating fast, I was feeling anxious and panicky.  I kept seeking help via medical doctors with no diagnosis or relief from the pain.  And everything takes time – draw blood, wait a week, wait more to get results, get referral to next doctor.  And I kept taking my magic lorazepam because it made the burning mouth lessen.  And it is prescribed by my doctor, so it must be safe.

By mid February I found the Physician Desk Reference which is as named, used by physicians regarding medications and diseases.  I was shocked to discover Ativan is intended for short term use (as in a few weeks), it is causes your body to become dependent, and the list of side effects include:

Sedation, Fatigue, Dizziness, Headaches, Central Nervous system tremors, Depression

Basically EVERYTHING I told each doctor about during the month of January.  You know every doctor requires you to fill out all those forms listing everything about yourself.  I have asthma (apparently this drug should not be used by asthmatics).  Besides my inhaler for asthma, lorazepam was the only drug I was taking so it’s not like it got lost in a list of 100 medications.  Yet no one put together my symptoms and the drug I had been on for 4 months.

I have since learned a lot about Ativan.  It is in a class of drugs called benzodiazepines.  I will not pretend to understand the chemistry, but this highly dangerous drug treats your symptoms, but then causes your brain to want more of the drug.  Taking it “as needed” I triggered my brain to need it more, so I suffered more of my symptoms and fed the drug to myself.  By January what likely happened was I had “normalized” – my brain no longer wanted JUST 2mg a day and I started feeling what would be considered withdrawal like symptoms.  As I felt the symptoms, I took the meds, I lived in a coma.

I have since joined several groups and read story after story of people prescribed this drug who have suffered for years.  I feel blessed that my 5 month “journey” likely will end soon (edited after I healed – it took 17 months to taper and a few more months for all symptoms to stop).  The additional problem with this class of drugs is that you cannot simply stop taking them or you will suffer badly, your brain is harmed and seizures can result.  You must taper slowly to allow your body to adjust and for your brain receptors to begin working again.  So, I am going slowly, feeling a little more alive each day, but still feeling tremors, dizziness and headaches.   Even the high blood pressure is a result of my body fighting the lack of the drug it wants.

I am also angry.  Angry at a medical system which hands out drugs with little regard to the damage they can cause.  I was given a prescription with no counseling.  I needed refills and they called them in immediately.  For people at higher doses and taking them longer, it can literally be years of their life to fully taper from a benzodiazepine.  I will NEVER start another prescription drug without asking questions and doing my own research.  The doctors are not God and do not seem to understand the damage their prescription pads can cause.  There is plenty of research available.  Here is one place to begin:

http://www.psychologytoday.com/blog/side-effects/201011/brain-damage-benzodiazepines-the-troubling-facts-risks-and-history-minor-tr

Special thanks to Scott Douglas MacLachlan for creating this most excellent video – please watch!  

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