Stepping into life while lying flat on my back

9/4/2018

Same old same old here.....

The fatigue I have felt the last few days is sprinkled with terror. Wired but tired. And not just tired, this is bone crushing tired. This is I can't move tired and not that good feeling you get after a big workout. This tired extends to motivation too. The tiredness makes it hard to get out of the house. Fuck, this tired makes it hard to get up out of bed.

This tired makes it hard to talk or want to connect with anyone. This tired makes me agitated and angry. Despondent. This tired feels like it will last forever. It feels like my heart and lungs will stop working. It feels like my cells are being strangled and there is just no oxygen in any cell.

I'm scared.

I've never felt this in my entire life pre- benzo or neurotoxicity. I have never felt like it's too much of an effort to see my children before this experience. That it feels like too much to make it home in time for their bedtime or make it in time to pick them up from school. That's the kind of tired I am talking about. When my tiredness trumps my ability to love or show up for my children or for anyone else for that matter... that's precisely how tired I feel. Despite this, I push through like a motherfucker and show up anyway. I have no choice.

And yet despite all of this I know it's better than fatigue's evil cousin Akathisia. "Akathisia, also known as the Dance of Death ( one person online just wrote so eloquently about this) is more horrific than words can describe.
And I saw recently a quote on someone's page from the writer David Foster Wallace who said with regards to Akathisia " when the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It's not desiring the fall; its the terror of the flames". That sums it up perfectly.

Anyway, now back to bed. Back to lying on my back while piecing my life together.

1 Comment

Jordan

9/21/2018 08:02:05 am

I felt compelled to comment after stumbling upon your blog and seeing how much it resonated with my current struggle. When I was 18 I was put on Clonazepam for chronic fatigue syndrome. This was after I had been given cipro for a uti that I am now assuming caused all of this. This was a long time ago so they assumed it was psychosomatic and anxiety induced. I took the pills for about two months and stopped, no big deal back then, or so I thought.

A few years later I was given Biaxin for strep and my world fell apart. Suddenly I couldn't stop hearing music in my head, I couldn't sleep, I was in a constant state of burning terror with hellish symptoms that I would not fully understand until ten years later. It took two years for the damage from this antibiotic to subside enough for me to go back to living some semblance of a normal life until...

Last May, I start taking supplements. I was taking high doses of vitamin D and suddenly I just stopped sleeping. I tried everything I could but after days without sleep I was utterly desperate. I went to the ER where they gave me Ativan, and I finally slept. This was 1mg to be taken prn for sleep. Unfortunately I wasn't quite aware yet that my sensitive CNS was reacting to the vitamin D and wanting to be healthy, listening to my doctor I kept taking it, and my sleep kept being illusory. Eventually I was taking Ativan a few times a week... Then for the last week every day. This was a grand total of 3 weeks of Ativan use. I was completely unaware of the hell that awaited me.

My doctor would not prescribe anymore, and so I ran out and didn't think too much of it, trying to figure out ways to coax a better sleep routine. The next night everything changed, I was in CT withdrawal, I didn't know what was happening but I was experiencing pain and agony I had never known before. Night after night this got worse and worse and by 6 days without sleep I ended up in the ER, where for the first time I mentioned Ativan being a possible culprit. They gaslit me, told me it's not possible, I was on "such a low dose at 1mg for such a short time." They committed me to a psych ward and that's the day the akathisia started in earnest. The relentless pacing, the terror, the pain, I thought it was my last day on Earth. Only by some miracle did the psych there believe I was going through Ativan withdrawal and reinstated me on 1.5 daily split throughout the day but to taper down ridiculously fast. Oh and 10mg Ambien on top of all of that because man, they just don't get this stuff.

The akathisia stopped, I made it through each day in the psych ward, came home and immediately made an appointment with my GP because the psych ward doctor wasnt going to prescribe me anymore. My GP didn't get it, he switched me over to Clonazepam citing longer half life, but at a dose that literally cut my current amount in half. I was in hell all over again, and his taper was only to be 3 weeks. "You can't taper longer than you were on it."

Somehow over 3 weeks I'm down to .125 Clonazepam and I am almost catatonic only moaning and writhing in bed in a state of chemical terror. Cannot speak, cannot sleep, cannot eat. My mom flies out from across the country to help me, and takes me to the doctor where suddenly I'm accused of selling my medication. You see my urine tested negative for benzos. This happens on both Clonazepam and lorazepam, especially at the dose I was currently at. My mom yelled at him, I begged him to listen to reason to read the reports, he refused. I was cut off, on a Friday night, with no other doctors and only two doses left.

My mom and I called everybody we could, from any directory we could. It was torture just to do something so simple when I was hypersensitive to everything. Somehow we got an old psych 100 miles away who was willing... If I paid 400 out of pocket. It's all I had.

After that I spent a month taking .125 Klonopin, and by some miracle, I managed to stabilize enough to shed some of my symptoms. Then I knew I had to taper again, because there's a thin line between stabilizing and tolerance withdrawal. I started a daily microtaper and as soon as I hit below .09, the bottom fell out again and that terror of terrors akathisia and intense insomnia came back. I'm currently holding at .09, (1.3mg Valium equivalent) hoping for stability again.

That's my story, there were a few times of drinking and benzo use I skipped over in my early 20's that surely affected things as well. I wanted to reach out to let you know that I too have a completely wrecked CNS and am inspired by your perseverance. I have a long, long ways to go, and seeing people ahead of me, fighting, gives me hope.

Author

Someone who found themselves accidentally dependent and suffered an iatrogenic injury from medications that were prescribed. Sharing experience, strength and hope with others. This is written as a person on this winding path and NOT as a professional. Please contact a licensed professional for any medical/psychological care or advice. This is NOT a substitute for medical or psychological care. What is written here reflects my own personal experience ONLY.

Stepping into life while lying flat on my back

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