One thing that we all discover through this process is the incredible resilience of the human spirit.
The level of suffering that many of us endure through psych med withdrawal is akin to being held in captivity, kidnapped, in a concentration camp, starved, and so on.
On Living with Akathisia, a fb site dedicated to helping those living and surviving akathisia, there was a memorable post that from a sufferer recently.
Forgive me if I am repeating myself.
The poster said that he had survived liver failure, autoimmune illness, an OD, heartbreak and a gun shot wound and NOTHING brought him to his knees like his akathisia did.
Psych med withdrawal, particularly benzo withdrawal (I'm biased however but I believe anti psychotic and antidepressant withdrawal or other med injury as well) is really on another level.
We are hidden away like roaches, shunned from the medical community, shunned from our former "friends" and "colleagues" that once respected and enjoyed our company.
Many close to us believe somehow we are doing this to ourselves.
Something in our personality is causing this to be as bad as it is and we should use positive thinking, faith...insert whatever magical cure in there to cure us. God, how I wish this was true.
Now, I am not saying that faith and positive thinking can't help but how can you ask a broken brain to be positive? Would you blame a person with a spinal cord injury for not walking? Would you blame cancer on the victim?
Yes, we must try and help ourselves in little ways that we can, if we can. Sometimes sitting in a recliner is all that we can do.
Baylissa wisely said when she hit acute "nothing worked". She tried tapping , meditation, visualization...all of her tools were pointless in the midst of a biochemical breakdown.
But we heal.
Most of us, anyway.
One post from a long time protracted sufferer begged the community to not turn their backs on those STILL suffering 5-6 years off. The community turning against it's own is doubly painful.
Well, I'm not there yet and I don't know how I will be once off but I know judging from my journey so far, that it will continue to be the hardest thing I ever do in my entire life.
For now, I have a tiny melted sliver in my mouth each night of .04 Valium and I'm about ready to jump.
Because my state of existence is better than full blown akathisia. I can't endure that for longer than several days, there is just no way.
I'm hoping I have a cushion to buffer the fall.
I wanted to also update y'all that my nerve conduction was normal.
This is good news.
Well, that is the good news. The bad news is that as my nerve study came back normal, the doctor basically waved her hand and said " not much I can do for you".
She urged me to go to a general doctor for more tests. When I asked her not to give up on me, she politely told me she had not intention to do any "digging" for me and that essentially I was on my own. I mean, I already knew that but she refused to follow my care.
Initially she had agreed to see me for a follow up in JUNE but later the receptionist called and told me she was cancelling it.
I am having neurological issues and yet a neurologist won't see me or follow my care.
What made me feel better was that a fellow sufferer who was already healed had a relapse after 3 years off due to benedryl. His akathisia and other symptoms returned. He booked a flight to New York with the head of neurology at Columbia University.
This "brilliant" man told my friend that benzo withdrawal doesn't exist and that if he was doing medical research, he should go to a psychiatrist because he has an anxiety disorder not a movement disorder.
So, we are alone but we are alone. All over the country,in big cities and small towns, all over the globe this is being denied by most doctors. DENIED. Why is this epidemic so overlooked?
How a head specialist in movement disorders can deny benzo withdrawal is just beyond me.
No words people. No words.
So, there it is.
Laugh or cry. Laugh or cry....
It's been a long while since I have checked in.
I know everyone wants a happy ending, but in benzo withdrawal, at least for some, that ending doesn't come for a long time. I'm worried it won't ever come.
I tried a new tactic. Stop focusing on obsessive medical research and tirelessly looking for answers. Do your day, and see what happens.
Well, I can't say the results have been way different.
My CNS is fried. Bottom line. Every day I'm frying, It's scary.
I'm down to .04 valium. Yes, you heard right.... the ridiculousness of it doesn't escape me.
But I'm petrified. I'm petrified that my living hell could actually get... WORSE.
Here's a list of my symptoms from order of importance:
Brain literally burning
Stabbing especially in chest and brain
Chemical terror/Chemical anxiety
Shoulder tics at night
Jerking arms torso and head shifting to the side as I am falling asleep
Legs pointing back arching ---quick seizure like movements
Some of these symptoms are so hard to even put into words because there really is no framework for this kind of physical breakdown.
In my 40 something years on this planet, I have just NEVER experienced anything like it.
I am beginning to really think something is terribly wrong, but I feel like either my heart will just give out or I'll start to heal once I get off.
I hate to say it but I think I fall outside the normal range of benzo withdrawal at this point. So if you are reading this, don't despair because I have yet to hear others with such a badly bruised CNS even on the internet.
That's why, despite my inclination, I am doing more medical digging.
Tomorrow I'm heading into a nerve conduction study and I'll keep you posted.
The neurologist had wanted me evaluated for some rare autoimmune encephilitis issues and I had the blood work done weeks ago. If they come back negative she will be sending tests for even rarer antibodies.
Sadly there have been two cases on BB that I have read about where AE did come about either after withdrawal or the symptoms and problem came on before but weren't diagnosed until they got hideously bad in withdrawal.
Regardless, that is my medical update.
I'm SO SICK of being a professional patient, I cannot even begin to tell you how envious I am of WORKING CENTRAL NERVOUS SYSTEMS.
I barely knew what a central nervous system WAS before this bullshit.
Bottom Line--just SAY FREAKING NOOOOOO.
And doctors are DRUG DEALERS.
That's it folks....
Today was the absolute worst day ever
And don't try to convince me that
There's something good in every day
Because when you take a closer look,
This world is a pretty evil place
Some goodness does shine through once in a while
Satisfaction and happiness don't last
And it's not true that
It's all in the mind and heart
True happiness can be obtained
Only if one's surroundings are good
It's not true that good exists
I'm sure you can agree that
It's all beyond my control
And you'll never in a million years hear me say that
Today was a good day
READ FIRST NORMALLY THEN BOTTOM UP.
How cute is this?
I didn't make this up! I copied it from a post on facebook.
I know this post is negative.
I want to be inspiring.
But how can you inspire when you are knee deep in suffering? I know there are many people who can---Christopher Reeves.. so many, I just can't think of any right now.
You see today I have bee stings all over my body. What I mean is, I feel as though my body is being stung by a swarm of bees. I am being stabbed all over. Burned alive.
I just burn and buzz and burn and vibrate and I am tortured beyond tortured today.
I have moved back into my home after living apart for some time. Moving out has been a good thing. Moving back in has not been.
I am ashamed to say I want to run from my family but I find no comfort here.
My children need me but I am in too much pain and agony which leads to a kind of self absorption and rage that I never knew I had.
Yesterday I was bending over to pick up a box of toilet paper and I hit my head. Rage erupted in me. I slammed doors. I cried. Then I calmed down. I am so frustrated by my body, by my marriage, by the life I feel so so trapped in. I want to make changes. I want to move forward but I am suspended in a hellish inferno. The body should be a place of comfort and of pleasure. And I know nothing of those things right now, and for so so long.
Not an hour later, as I was fretting and cleaning, my children decided to take apart an entire shelf I tirelessly organized in a fit of OCD and terror. It was now all over the floor. Papers, books, pens, crayons. They didn't care. They were merrily playing outside on the trampoline, they had made their mess and moved on.
I lost it. Thankfully not in front of them. But I threw things across the kitchen, vaccumed like a maniac while muttering and crying, " I want out, I want out, I want out".
I have always been afraid of death. And although I am certainly not a stranger to suffering given my decade of chronic pain (which led me to be prescribed a benzo), this suffering is of a proportion I cannot even put into words. It is almost unspeakable. Like a holocaust.
But like a holocaust, we must speak about this.
We must come forward and educate and teach and tell.
The problem is everyone around us thinks we are just exaggerating. I mean after all I "look" normal. Hardly, When you look in my eyes you see the level of pain I am in. Disguised. Hidden. Invisible. But it isn't.
I don't want to talk or laugh or be me on my birthday.
I feel almost as if I have broken through my fear of death. I want comfort again. A moment of it.
When will it come?
How much longer can I hold on for when the damage is just starting. I am not off yet and it's bullshit whoever says we fucking heal while we taper. I haven't fucking healed. I have damaged and downregulated my receptors more and more.
I am so sad today.
I am frantically looking for houses again-- I mean little dumpy bachelor apartments where I can put my head and rest. I cannot rest here. I cannot be here. I do not belong here anymore. Not in this house, not in my family and not in this world.
I am here but I am apart from it.
Only those in the holocaust understand.
The others tell you to smile. Be positive. Just be.
I can't. I just can't. The pain is overwhelming today because of some intense emotion yesterday. My body cannot handle emotion. Not anger, not sadness, not happiness.
I am trapped. Trapped. I feel trapped.
Today was a sad day in the world. October 2 will now be remembered like September 11th because of the needless harm people are causing other people. It's just gross what is happening.
I hope that there is a purpose here. I hope there is a light shining bright at the end of this. Maybe in life, that is all I hope for. Life, once again.
There are no lessons are there. Is spirituality for the healthy and happy? It's hard to be happy in pain, such such physical pain. That noone can point to and say---yes, this is what this is and we have a neat quick solution for it.
We have been injured by the very people we trusted wouldn't and couldn't harm us. No warning. No justice.
Sorry for this dark rant. When this pain lifts I might smile again.
I hope it does for all of us.
I have been a bit uninspired.
Do I continue this blog and my tale of woe? My catalogue of symptoms?
I desperately want a fairy tale happy ending. Considering that I have 3 medication tapers ahead of me...at least two of which are important to healing, I have to be a realist about the time frame of this healing, and what healing means altogether.
I visited with a close friend today. She told me about a friend who developed a horrible illness. The most horrible illness on this planet. When he discovered this, she told me he and his partner decided that each day they would choose JOY. Each moment, each breath, they would choose JOY. They would throw parties. Have visitors. Enjoy each and every inch of life. This idea inspired me, however with so much deficient in my neurochemistry at the moment I just don't know if I have strength to do that in the face of this kind of suffering.
Today I feel my nerves prickling from head to toe. I'm itchy but on the inside. I feel the beginnings of terror---in my throat. Like acid poured down my mouth and everywhere for that matter. My sleep is so bad I am not falling asleep until 4-5am. For that reason, and many others, I had decided to take a temporary sublet so that I could assist in my healing and sleep until 11am if I need to. Sometimes this works better than others. But living in a tiny house with two rowdy boys has always been unsettling to my nervous system, even when I was healthy. I am sound and energy sensitive. I need my own nook. My own hideaway. Of course in benzo withdrawal there is no real hideaway because you can't ever escape your own body, except in death. It is really quite difficult to put into words the suffering. I am saddened that Jennifer Leigh decided to take down her informative blog when she developed a recent setback. I really wonder, 6 years later for her and for so many protracted is this still benzos or has it sparked some virus or bacterial or autoimmune reaction in the nervous system Why do some heal quicker than others? How did my doctor get a 92 year old woman off benzos (and many would ask WHY). Do the kindled heal ( I am so kindled, but Baylissa assures me that YES they do heal).
For the last 3 mos, I have had my own little nook, and soon I won't. I'm panicking. I desperately crave quiet and being alone at the moment. Having my own nook helped. It didn't help my pocketbook, but it helped. But the guilt of leaving my family also loomed the entire time. And the shame of not working and not being able to earn money. Being entirely dependent. All of it are just opposed to who I am and who I have always been. But this as you know, can bring the strongest to their freaking knees. And it has.
Within the next couple of days that sublet will come to an end. I am panicking. I was in the midst of hiring childcare , trying frantically to find someone to fill my office space that I had to give up on finding a new home for now. My health is still looming. I feel so sick on a daily basis, and yet this is true invisible illness. I am not yet off the benzo. I am down to a crumb. Still holding at .15. Terrified and I mean terrified to go down further. I just CANNOT handle the symptoms getting any worse, yet no healing is happening on this amount I don't care what the hell anyone says.
My nerves have gotten sensitized beyond belief being on this crap for so long. I wish I had had the right doctor at that time who recognized what this was, and even better just kept me on gabapentin or remeron instead of reinstating like 3 times. Biggest mistake of my life, aside from taking this crap to begin with.
The past is the past. Here we are. Others have walked before us and have made it.
We are all warriors.
I have talked to several new benzo friends this week. Each time I talk with new folks from all over the country and the world, I am struck at how similar we sound. How can this be? We are from all walks of life, diverse religions and upbringings and yet there is an instant camaraderie. An instant knowing. I see you, I hear you, I believe you.
I see you.
I hear you.
I believe you.
I am your sister, friend, neighbor, mother, I AM YOU and YOU ARE ME.
We need to prop each other up, encourage, cajole, intervene and love each other especially when so many lack understanding and belief that this is REAL and that this torture can last for THIS LONG.
Yes. It can my friends. It can.
A great article on HSP's.
I was told by a benzo wise psychiatrist that I was an HSP, I was born this way, my nervous system was different and that it was a 'garbage pail' nervous system. He told me that I would not do well on any meds. Too late! That didn't give me hope. He also said that if I had akathisia then I should stay ON a benzo forever. What kind of advice is that?!
I am scared. I hate being a broken record. But today is a little better. I got a facial ( my skin has broken out with horrific cysts and I look like a broken out teenager) and have been walking from room to room at home. I can't accomplish anything. I feel like a looping distracted teenager that can't attend to any real life responsibility.
So that's me today.
What about you?
I was able to calm my nervous system down when I got that facial today. That means I can work hard and CAN relax my body on it's own (well I am on a bunch of crap still but some days I can control it). So my goal this week is get into a meditative state for five minutes per day... NO MATTER WHAT. And turn social media off at night... It's been my friend and companion but I am going to keep working on that. Who knows... it may improve sleep!
When will this end for us? This prison life. This caged existence. This torture in our own bodies. The fallout in our lives. The bad decisions. Impulsivity. Rage. Fear. Feeling like death. Torture. Mourning who we were and who we could be.
Why weren't we warned??
Why are we the unlucky 25-35 percent?
What is the meaning and purpose of this all along, if any?
Do we ever REALLY heal?
Do we ever rebuild our lives to what they were? How can we explain the losses to our children, our friends, other onlookers who just think we should pull ourselves up by our bootstraps and get on with life?
What's a day in this life like?
I woke up today at 6am to benzo terror. You know the kind. Where your entire nervous system is set on fire. Where your heart is pounding 150 beats per minute. The crying. The exhaustion of one more day like this. The feeling that you just can't do another day. You just can't.
Not all days have been like this. This was stirred by emotions. Emotions that would lead anyone to a sleepless night but not the kind I had. I mean, up all night frying and frying and frying. I am so scared of what this is doing to my body and my soul. And primarily what it is doing to my children that I can barely connect to. They see me drifting around the house like a ghost, laying down or distracted. God, make this fucking stop. I fucking hate you benzos and I hate the ignorance around this medication even more. I hate that life keeps going. Keeps passing me by. Spring, summer, leaves falling, winter, then repeat. And still we are stuck in hell one more year...until....
I stupidly have been putting myself in harm's way. I won't get into the details now, but one day I will expose my shame, my erratic decisions that I don't even recognize. I feel like I have been body snatched by some impulsive erratic emotional looping needy mess. And that's being kind to myself....
A benzo friend comforted me today and said " Oh, just do what you need to do to get through the day". This hero walked through years of torture, akathisia, hell on earth.
Recently he had felt cocky enough to try a little drinking here and there and at 4 years out felt immune to the hell that he endured for so long. Then, without warning, BAM. He woke up in benzo withdrawal once again. Can you imagine? After putting in your time? Does god care? Does god really care if we are good people, kind, loving, compassionate, givers...does any of that shit matter? Well, no. Maybe to your inner peace but not to the cards we are dealt.
Sorry for the bitch fest.
I was haunted by the news that the wonderful Jennifer Leigh PsyD. has announced her retirement due to a wave she has endured after 6 years off benzos. Is it the initial shock that her body went through that caused continued problems? Has it triggered something else that is underlying her condition? Maybe something we all share in common to explain why this is so hard for some and so painless for others?
I am praying for her and mourn her loss to the community. I am saddened that her website will be taken down as it has been such a strong source of support and comfort for so many.
I still go back and read her early posts sometimes just to normalize what I am going through.
My daily questions are "Is this normal?" "Will I heal?" "Has anyone felt this before?". Her posts provided a source of real comfort. She was smart and wrote well. She has a good strong heart. She is kind and sharp. I am pissed that benzos have taken so much from her.
I hope she continues to work at her goals with her book and other ways in which she has helped so many. She has been a beacon of light to those still in this dark tunnel.
While I would love to have a voice in the future when I am well, I don't even know if I could muster the word "benzo" again without a PTSD reaction.
In the meantime, I am trying to ignore ALL of my symptoms. Literally keep going no matter what, die on your feet as my wise friend says.... though my chest and body are on fire, I am having olfactory hallucinations, I am verging on terror all day etc.
Ignore! Ignore! Ignore!
I tell my body this all day. I never thought I would be advocating disassociation but that's the only way to make it through. I like to pretend I am an enlightened monk and that nothing can touch me or my brain. Because, hey, I am enlightened!
The Universe has my back
Everything that happens, I can chose to fight it or accept it
Everything that happens is a lesson
Be careful who you trust
Be careful who you let into your life
Stay away from triggers, strong emotions and people that stir that up in you
Love no matter what comes at you because it's the only game in town
I will heal
I will be healthy and free again very soon
I am still holding at .20 V and the gabapentin and remeron. Next week I go down once again .05 and then hold and proceed downward again.... Yes, this shit is sure taking forever. Jesus--a two year taper off of 5mg. God help me. Kindled and screwed. It was all for nothing but here I am... putting one foot in front of the other.
Another summer, the third one feeling benzo sick. I can't believe how long it's been and I hope I don't have to count three more summers until protracted is over.
I am almost done with my taper. I know, I know. I keep saying that. But everything has to come to an end right? I am at .20 of V. I am on 600mg gabapentin and 15mg of remeron.
I am not worried about the remeron. I don't care if my nervous system is working right and I am left on it for another year.
But who am I right now?
I don't feel like me.
I keep saying that to everyone who knows me and sees me. I sit down and after a five minute conversation ask them "Do I seem normal to you?" " Do I seem like me?". Most people surprisingly say YES.
This is the strangest thing. Feeling like you are on the edge of insanity but being able to play it off as if you are sane. Feeling terror. Sickness. Headpressure. Burning. Chest pain. On and on.
My emotions matter. A lot. What I put my attention on matters. A lot.
I know I keep repeating myself.
Where will this end? I don't know. Hopefully the finish line comes soon and fast. Hopefully there is peace. Hopefully akathisia doesn't stay too long, and god forbid forever.
I hope and pray and hope and pray and hope and pray for everyone injured by Big Pharma.
Injured by doctor's ignorance and possibly bad genetics.
Sending healing your way.
I have been throwing grenades into my life.
I want out. Not as in suicide out but just out. Out of responsibility. Out of confinement. Out of everything.
I've been impulsive.
I've been told I am not thinking clearly.
I've been told my brain had a problem before this.
I've been told I will never heal. I've been silenced. I've been dismissed. I've been ignored. I've been gaslit. I've been running to the wrong people for comfort. I've been disappointed. I've been unsafe. I've been in lack of acceptance. I've been bitter. Angry. I've been in terror. Scared. Alone. I've given to others too much. I've received too little then too much or the wrong thing. I've been out of gratitude. I've been in the moment. In the future and the past. I've been devoid of boundaries. I've been bad. I've been human. I've been rageful.
My dear friend laughed at the recent events in my life ( I will spare the details for now) and said, "You've gotten off the path".
I've been supported. I've been listened to. I've been loved. I've been held. I've been fucked with. I've been damaged. I've been triggered. I've been hopeful and hopeless about this grueling endless process.
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.