https://www.nytimes.com/2018/03/16/health/elderly-drugs-addiction.html
My doctor mentioned this article that I had posted on my fb feed. He said there was another article in the New England Journal of Medicine that also addressed the growing problem of benzo withdrawal, but he said he found one fatal flaw in the article! The article claimed that there were effective treatments for benzo withdrawal which my doctor clearly admitted THERE ARE NONE. They don't exist. Get on but whoops we can't get you off. Oh, you needed these pills to begin with because it's your old condition reappearing. Oh, you're just exaggerating, you look fine to me. Oh, you look like you've aged ten years but I think you should go to a psych hospital, Oh, your akathisia isn't really akathisia it's just anxiety. Oh, these online groups are the cause of your suffering. Oh, I've never seen this before, I don't know what this is. On and on and on the gas lighting goes. Until you realize: Holy fucking shit. I'm completely alone. Better yet they say, just stay on forever because as one doctor told me, " You're trying to control the process". Fuck yeah I am trying to control the process once I trusted you and you singlehandedly ruined my entire central nervous system and health. Fuck yeah I'm going to do my own research and not listen like sheep to what is in your outdated medical textbook. Fuck yeah I'm going to turn to the support of others in the same "boat" as I am and look for a life raft Hang on folks! Let's all hang on. Sorry I'm in a funk because this terror today is killing me. I can't be positive, or write anything positive when this terror invades every cell of my being 24 hours per day. I just can't.
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TERROR
So much terror. Someone asked me --what do you mean by terror? I'm not sure how to describe it but it feels other worldy. I can't say that I have experienced chemical terror before akathisia and drug withdrawal. Anxiety? Sure. Worry? Of course. But this? Someone commented that my voice sounds good. I don't know how to describe the skill that I have perfected which is probably called disassociation. I have mastered the art of completely leaving my body. I am not my body. I am not my symptoms. I am me, my soul is still in here somewhere. I spent last night watching part of the Gary Shandling HBO special--a documentary about his life, struggle, comedy, self realization, acceptance etc. Although I was not able to watch the whole thing, I highly recommend it. By the way, xanax was in Gary's system during his death. Of course it was. The world, psychiatry and the medical establishment will soon understand this harm sooner than later. Maybe there will even be justice. Empathy. No more gas lighting. Anyway, sorry to digress. Gary struggled with grief and worry and self consciousness and perfectionism his whole life but he had a commitment to self growth and growing consciousness. He would write in these journals and coach himself on letting go of worry. "Just be Gary" "Just be yourself" he'd write in his journal. That's all we can be, Our authentic selves. If we are housebound, stuck on our couch, unable to socialize, eat, function, parent, work, drive walk, exercise, think, laugh, cry, this is it and hopefully with a higher power's help we can hold on until the sun shines again. Hold on until the sun shines again and until then, be you, be exactly where you're at. I am about 25 days post jump.
I haven't come on here lately as I didn't want to even count the days I have been off this poison for fear of manifesting symptoms. Well, here I am. It's been a long long journey. I am far far far from healed but I did it. Now I have two other medications to tackle: gabapentin and remeron. For right now, sadly these are the medications that are keeping me upright and not in a hospital. We lost an amazing man in the benzo community. In fact, he was the one who encouraged and convinced me to finally take the leap ( I was down to .03 valium taking a speck of dust in my mouth every evening for fear of what could happen). He helped so many. He inspired others and helped everyone he could a long the way on his horrific journey. I didn't expect his suicide (let's call it what it is--it is murder by Big Pharma) nor did I expect the impact it would have on me. I think about him often, though I didn't know him that well. He was one of the people I felt comfortable in my benzo circle chatting with, sharing our experience, strength and hope together. He will be very very missed. He died, as far as I know, as a result of extreme akathisia that hadn't gotten any better. There may have been other reasons, I really don't know. I believe he would have healed if he had held on. But he couldn't and I respect his decision either way. Bottom line, we lost a warrior and an angel. Anyway, that's the good, the bad and the ugly here. Some of my post jump symptoms (similar to the ones prior to jump): nerves frying bee stings insomnia (5am I finally konk out) chest pain that is debilitating at times akathisia (my primary symptom masked by gabapentin) basically a massive unwell feeling like I have the flu Difficulty walking Feel like I am walking through molasses mixed with a feeling of being on meth Terror electricity all over head pressure beyond beyond it's scary Fast heart rate low blood pressure stomach issues rectal spasms and bladder pain difficulty breathing oh so much more..... The things that don't bother me: depersonalization and derealization tinnitus What else can I say? Sorry to symptom talk but I thought someone might like to know. I'm sure I am missing something. Hang on folks... I still have a hard time seeing healing bc I am so kindled but I have no choice to put one foot in front of the other, hoping, praying that I can heal and find relief. I hope that for that relief and peace for anyone reading this as well. I am still unable to work, or take care of my family or do much of anything. I force myself on small walks daily as much as I can though they can be overstimulating to my CNS I do it anyway. I eat super clean and healthy, no dairy, or gluten and lots of fresh vegetables and fruits or green juices. I am on limited supplements: whole food vitamin C and elderberry, some magnesium chloride foot soaks and digestive enzymes and that is about all I am able to tolerate and risk at the moment. I am trying to "eat my nutrients" and who knows how the hell that is going.... That's my story for right now. I am wishing everyone a ton of healing energy!! Let's do this and make sure this never happens to anyone again!!! 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. NOTHING. 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. I'm petrified. 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.... Hello Blog....
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: akathisa Brain literally burning Stabbing especially in chest and brain Burning body Head pressure Anger issues Impulsivity issues Confusion Chemical terror/Chemical anxiety Myoclonus 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 Even if 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 Because 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 The reality Creates My attitude 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'm sorry. 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. |
AuthorSomeone 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. Archives
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