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Posts Tagged ‘Benzo 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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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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We are making our own rules these days, and decided since I missed the 2013 holiday season we would double this year’s Christmas festivities.  On November 16th my husband and I secretly put up the tree and decorated the house – it’s like being in the North Pole.    blog1

With just the two of us to relive our time capsule of holiday ornaments and memories, I was able to reflect.  We bought the tree we still use the year we married, 1990.  It was our first Christmas together and the first time our cats, Spike & Cal, had ever seen a tree inside the house.  Spike couldn’t resist her cat-nature and climbed into the branches to hide.  Of course, our brand new tree sustained damage.  One large bottom branch was bent and hung limply.  For some reason my husband found a WHITE shoelace to tie up that green branch to at least look normal. 24 years later that same white shoelace holds up the branch.

Now at almost two years since becoming ill, and not quite 100% healed, this year I saw the damaged branch differently.  It didn’t break, it bent.  It didn’t ruin the joy of the next 24 Christmases.  In fact, looking at that shoelace this year was like a movie rewind of my life and I was that 25 year old bride again alone with my husband with our whole life facing us.  Yes, he and I are both more worn, our own branches are bent, we have grayer hair than before, but it does feel like this new stage of life is an adventure that awaits.

The damage we sustain as we live in this imperfect world doesn’t have to beat us.  We can continue to grow.  We can be firmly rooted and know that despite the storms, the battering, the cats who jump on our weakened branches – we are stronger than we could ever have believed.

Find your white shoelace inside yourself. With a faithful partner. Devoted friends. God.

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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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My ipod couldn’t pick up the rainbow but I wanted to share the moment with you. Yesterday was a yellow gray rainy day here and I happened to look out and see a rainbow peeking through the trees. I honestly do not think I’ve seen once since becoming ill in Jan 2013.  rainbow

I stepped outside in the rain, tried to capture it on the camera and tears began flowing. In my faith the rainbow is a promise from God. Part of the verse from the Bible where its meaning is explained: “Whenever the rainbow appears in the clouds, I will see it and remember….”

I remember this journey but I want you to know the trauma and pain is fading so fast, I can barely remember what it felt like to be desperate for healing.  Once you are done with this madness, please know life will be beautiful. You won’t carry the baggage of your suffering and resentments and anger.  You will step outside when it’s pouring just to stand in the rain and see beautiful colors in the sky.

I know that seems impossible at this moment if you are hurting, lonely, fatigued, helpless…..but I assure you that I had all those same experiences and now life is amazing. I’m happy to grocery shop, run errands, clean (catch up on 20 months of disorganization), pay bills. I do it all with a grateful heart. And you will too.

We talk a lot about what returning to the “normal” world will feel like – the world may still be normal, but we are changed and there is a peace.

 

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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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All is as well as we can hope for in my third week post benzo hell.  I will update on my own progress in a few weeks, but today I wanted to share the incredible words of another warrior.  scar

I am blessed to be in the company of strong human beings who endure more pain than most people could imagine.  I met Lisa about 15 months ago while I was tapering, and she was suffering the effects of a cold turkey done by “professionals” who believe they know how to manage the prescriptions they write.  Because I tapered so cautiously and slowly (probably insanely slowly if judged by the questions I often have from friends without benzo knowledge), I only experienced small parts of some of these.  It breaks my heart to know the many people who endure long term suffering because they followed the advice of their physicians on how to get off these medications.  Please, if you are currently taking a benzodiazepine or an anti-depressant, you must wean yourself in tiny amounts over a long period of time in order to minimize suffering and long-term illness.  Here is some of Lisa’s pain caused by tapering too quickly:

The “benzo demons”said……..

“Let’s take Lisa and put her alone on a boat at high seas and make sure she feels every twist and turn. Let’s pump up her head and body with so much pressure she literally will feel like she could explode. Put high pitched whistles in her ears which NEVER stop and plug them up so her hearing is distorted but yet sounds make her jump. Make her eyes burn and throb so she squints, and give her a dry mouth but excess saliva at the same time.
Plug her into a low voltage electrical outlet which runs 24/7 and make sure she even feels it in her teeth, ( throw in a numb left foot for fun).  Her bones and joints and muscles should ache so much that she hobbles around like an 80 year old.  Put her chest in a vice so she’s desperate for air much of the time and a hamster wheel in her stomach and keep it churning.

Take away all her ability to feel love, happiness and positivity and throw in a dose of rage. Wipe out her ability to feel connected to herself and others and toss around some confusing obsessive fearful thoughts in her mind.  Make sure she can’t nap by shocking her system everyone she tries with crazy thoughts and jolts.

Take away her concentration, impair her problem solving abilities and exaggerate her emotions.  Put a pervasive sense of fear around her which will drive her crazy because she won’t know what she’s afraid of.

Her brain should pulsate and actually sizzle in her skull, while the room spins and she feels like she is floating in mid air while trying to fall asleep.  And speaking of sleep…..at least 2 or more hours of tossing and turning and obsessing before, please.

Don’t forget to throw in the unexpected earache, headache, spinning and a few good projectile vomits for fun.

Make sure the symptoms wax and wane unexpectedly and please please NEVER hint at when it will end.  It’s ok if she looks normal because then no one will have any idea what’s going on and will expect her to act normal.  She will be SO FRUSTRATED and it will keep everyone around her wondering if there’s really anything wrong and how it could be “that bad”.  They will give up after awhile and she will feel more alone than ever.”

Names of Benzos:  http://www.benzobuddies.org/benzodiazepine-information/benzo-list/

Information on Withdrawal: http://cepuk.org/withdrawal-advisers/

General Resource: http://www.madinamerica.com/?s=benzo&submit=Searchhttp://

The biggest thing I regret about taking Ativan for tongue pain prescribed by my friendly primary care physician is that I DIDN’T RESEARCH THE DRUG FIRST.  Like many, I trusted that my doctor knew what was best for me.  Even before I finished explaining the tongue pain I was experiencing, she was already writing on the prescription pad.  Three months later, when tons of symptoms presented themselves and I FINALLY looked up Ativan, it was too late.  The damage to my central nervous system and brain was already done.  Please learn from those of us willing to share our pain.

 

 

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