Yesterday I spoke too soon. The akathesia set it, or rather a feeling that my head is lit up and keeps going up and up and up. My husband pet my head as I was asking god to make it stop already. Woke up with restlessness again today. It was time to do something. My doctor cautioned me again that I am doing more damage to my system staying in this state of distress. It is impossible. Being holed up in my room in restless agony. It is by far the most intense experience of my life. I know BB and others promote being med free. Honestly I would be in a hospital if I were med free right now. My first and only goal is to be benzo free. For some reason my nervous system doesn't want to let go of the poison no matter how badly my mind and body want to be free. I am determined. My doctor suggested I start back to the beginning at 5mg but I fucking REFUSE. I need to see this through. Going up down, up down won't help. However, I don't know how people live in akathesia for years. It is the MOTHER of all symptoms. It is a medical goddamn emergency. It causes suicide and homocide because the inner restlessness is too much to bear. But we have to remember, things will settle down. things will get better. When you are in it there is NO WAY to be positive when you have akathesia. Sorry. All this positivity goes out the window. I am frightened. Right now it comes and goes. I can still sit. There has been a time where I could not. I was pacing, siting, standing and could not get comfortable. We have to know that this will pass, I have decided to take adjunct meds Neurontin to help me get off this poison. For better or worse, it's my decision. I went from writhing in pain, barely able to walk, akathesia and blind terror to being able to sit and write this. Just from 300 mg of neurontin. My goal again is to be BENZO FREE. That is my goal. So if adjunct medications get me there temporarily, so be it. I know I will be judged but if you felt what I felt these last 17 days you'd take anything to make the pain go away. I had to do something. I had to.. It was life or death.
Another day. Another wave. I am still in disbelief that this is the current state of my life. Sxs: intense chest pain, burning all over. Terror but less. Not much akathesia today. Thank you god.
I am here. I am worried I will be stuck here in a medicated hell. I was a vibrant, healthy girl that did yoga and hiked and played tennis. Even two months ago. What has happened. Trying to regain stability and Praying that I can. I talked to Baylissa today. She is so lovely and helpful. Can't think straight today so this is all I will write. I am sorry for the state of this blog. It's diminishing in it's helpfulness. I have to pull myself out of this darkness but the physical symptoms are so intense. Forcing myself out of the house today. Sitting in the garden eating an apple. Going to the bank. I have a fantasy that a natural amino IV will help reboot my neurotransmitters and all will be well. I have a fantasy that overnight poof this will be gone. And when I have a window that is what happens! Poof, Like I have been living in a nightmare. Healing is happening. Healing is happening each and every day.
I have been struggling hard these last several weeks. My gung ho attitude, positive thinking is hard to maintain at the moment. It's not even mental, it's been physical hell. Today is quieter. I will enjoy the quiet. But the quiet scares me because there is always a storm the next day and on and on. Going to see a new doctor today to discuss options. I need off. How? How will I manage? The pain I have felt last two weeks was not manageable pain. I know I am on repeat and it is boring but true. Two days ago a glorious window. I am so tired. I need to be here. I need to be alive for myself and my family. I love life, I love all of it. The body and brain are resilient right? I am still and quiet and sad. I am in disbelief. When I said to my sister that there must be a purpose in this, she said the purpose is YOU. The purpose in ME. I am ME. This is NOT ME. All these opinions online, these horror stories,... I believe them ALL. We can't get stuck in our horror though. I need to make the most of the quieter moments. Let the storms pass through me. I am ME and this is NOT ME. I will be ME again.. I will be ME again. Whatever it takes. I have to do this. I have to or my life will never be the same and I will have to take these poisons forever. This has to happen. Why is my pain so intense? Maybe everybody goes through it. Something just doesn't make sense. Please higher power, god, look after me right now. Thank you.
I literally don't know what to do or where to go from here. I started gabapentin but when I felt well yesterday I decided to nix it. Wrong. Was up all night. Took 2 at 4am. I am in deep shit. I am in blind terror today.... just closing my eyes and feeling it. I really don't want this to be a scary or negative blog but I don't know where I am headed. The terror brings me to my knees in pain--chest pain, shock pain. How was it yesterday I felt NORMAL. I know the guys in recovery say stop focusing on your symptoms but these are not symptoms anyone could ignore. I can't even barely talk or think. I can write but god knows what the hell I am writing. Someone who has been through this, please tell me this is normal. There isn't something else going on. I talk with Bliss on Tuesday. I have a new doctors appt tomorrow, I am so appalled that I am here. Yes, how did I get here. I can no longer do much for myself at least not today... Please god give me relief. Calling out to anyone that has any ideas, any miracles, and magicians. Time is the healer. But I don't know how to continue through this from here. Maybe I cannot get off this drug. Maybe this is the new unfortunate me? I pray not. Holding for dear life at 1 mg. I am willing to updose if need be but the cycle will be endless and I keep pushing through to no avail Yesterdays window gave me hope. Holding and gripping for dear life. Sorry to bum anyone out with this blog. It's unfortunate when I feel well I can use my tools but when I feel this way I just literally feel gripped in a terror that is something indescribable. Something so deep and it stays with me all day long..all day. God heal me please and all others that are walking this path...... let's find a way together. People say stay away from other meds but I have got to get off this medication some how some way. I hope this doctor tomorrow has another answer for me. PLEASE
I had a small window today. Boy, it came just in time. I had to take neurontin 3x yesterday to manage my pain. The main symptoms are unbearable prickling, burning, throat burning, terror, akathesia and inner restlessness, GI problems and the rest. Boring, I know but just checking in. I listened to Joe Dispenza again who reminded me to take the focus off my symptoms, do something different, help the brain learn something different---every day. Whether that means taking a shower, getting dressed, sitting in your garden if you have one.... I went on a walk. It was nice. I was tired. I wasn't myself but I did it. Prickling is back. I haven't taken any new meds. I am being a resistant patient. My doctor warned me yesterday that by not taking the neurontin I am at risk for some kind of RSD because the brain learns a pattern it cannot unlearn. I get that. So I know many people are anti meds but he felt more kindling happens when you DON'T treat the pain. Different perspective. Honestly the pain was THAT BAD yesterday and the day before I considered the hospital. I was literally writhing in pain. This is so weird. I have another appointment on Monday and he will check all of my immunological issues. I know I should write about something more interesting. I needed this window SO badly today. It gave me a glimpse of me. Yes, I was burning and prickly and seriously shell shocked. But I walked, A wonderful friend did my hair and now I am going to hit the sack.... always the most challenging part of the evening.
This experience has brought me farther from some friends and colleagues but also much much closer with others. Closer to the point where they feel like family. For that I am grateful. And for my partner. He has been an amazing rock, despite our differences, he has been a ROCK. A true hero in this fight too. Kiss, hug, cherish your partners. I am very self involved when in so much physical pain. I cannot think straight. I cannot think about anything except my own body that I am fighting a war with. I choose to manifest something different today. I was posting on the boards like a freaking lunatic but today I made a commitment to stop. When I feel better it isn't that hard. But we have to train our bodies AWAY from the obsession with them and our symptoms. Reading stores, sharing symptoms helps until it harms. Very hard to put into practice when I felt I was in acute. Let's see how this week goes. If I can gain some ground or need to add a new medication. I commit to trying to stretch and meditate tomorrow. Remind my body of who it is and what it used to be capable of doing. I was always a fit, active girl... now its just been survival. Every day is closer to healing. I am honestly NOT so sure I am healing while on the medication, in fact I don' think I am despite what people say online. But... I am one step closer and I need to get there.....
I want to burn this writing. I never want to see, hear or experience this again. I am reaching a new level of intensity. My symptoms moved from burning to prickling to chemical terror. I wonder if I will sleep. I pray for my body to shut off, where is the switch? where has it gone? Do other people have it this bad? It seems insane? It doesn't seem right. I am afraind about what to do next. I am in an insane amount of suffering suddenly. This no longer feels manageable. I can't think, eat, and we will see about sleep. I need to get well. I need to remember--these are just symptoms they don't mean anything. Yet they are dizzying. They are overpowering. They are mindblowing -- not in a good way. I can hardly speak or put a sentence together .Writing is calming though it just sounds like desperate jibber jabber. I tried to meditate. I tried to make friends with this mother fucker chemical terror. I don't want this friendship. I want to go back to my life. Working, playing, sitting, reading, laughing. It's been SO long since I have felt like me. I know many have endured much longer. What makes some people pull through and others not? Many don't seem to have intense symptoms. This is intense. If I hear one more person tell me they have never ever seen this before I am going to smack them. What am I supposed to do with that information? Or my doctor who said I might not make it. He is the bearer of doom and gloom. Of course I need to make it. These are just symptoms, tricks in the brain. But they are so painful This is by far the most painful and horrific experience of my life. The day actually began "OK". I felt a renewed energy thought I prickled ALL OVER and burned. Then restlessness came in and turned into TERROR. TERROR. Fear on CRACK. I am holding at my dose. I would rather add another medication in then go back up. I HAVE GOT TO DO THIS. One way or another. I have to, I just have to.
Gods, angels, doctors, healers, whoever and wherever you are, please lend me a hand. This too shall pass this too shall pass....will it? I need Baylissa in my ear 24/7 laughing and saying, yes ,yes it will....
Today I woke up with more energy. These days more energy means I am lit on fire. Burning in my throat in my chest and an underlying fatigue. I stand up and need to sit back down. Is this just withdrawal? I was comforted today after talking briefly with Jennifer Leigh PsyD. She also had a positive IGENEX test for lyme. She dismissed it and said, it isn't lyme, it's all withdrawal. I know I had issues BEFORE with my immunity so I am trying to sort things out. One. Step. At. A. Time.
One. Moment. At. A. Time. The burning terror is with me, and there are just no words to describe it.
Today I opened bills, I made breakfast. I am grateful for those moments and abilities. I talked with a BB friend yesterday and her situation made me sad. She had limited mobility after a cold turkey and was put on neurontin. Then reinstated. She is in daily hell now. She is despondant. I am SO mad at these drugs and what they do to people's lives. She was a virbrant, spiritual woman. She couldn't sleep, them WHAM. I don't know what will happen when I am full OFF. I feel determined not to use adjunct medication as I think it slows down the healing process but I have to say the last ten days has been VERY severe. I just kept saying, "Please help me, Please help me".
Today I meditated. Ignoring symptoms as best I can. Eating. Drinking tons of water. Praying SO hard that I am not doing irreversible damage to my nervous system. I never imagined this would happen in a million years. I didn't even know this was possible. I pray for health. I pray for inner peace. I have lost a lot recently. I will just say that. My life has changed dramatically and I don't know what the future brings, When I talked with an addiction guy he said he had NEVER heard of this happening to anyone. He wondered what else is this? It can't be the benzo he said. That scares me. I don't know. I cannot face another doctor and another diagnosis so I am staying put for now. I need to pray for my wellness and my family right now.
My son looked at me and said "Mommy, are you still sick". I nodded. He doesn't think I will be well again. I am going to keep living as best I can right now. I cannot really leave the house at the moment without a lot of effort. I was relatively normal two weeks ago. I will be there again with a lot of healing. Show me the way out of this darkness. guide me to the right healers, teachers, mentors, doctors, whoever can help. Maybe the only help right now is TIME. Time, time time.
I am obsessed. I am not well. I am in the midst of what feels like the major withdrawal. Haven't felt like this since my fast taper last year. And, despite that I took it crazy slow doesn't seem to matter. I burn burn burn, prickle in terror. Today is a respite from that and I just feel completely worn out. Worn to the bone. Worried about my survival. My heart is pounding. I know symptom talk is boring. So boring. Believe me, I wish someone could wave a magic wand and do this for me. I wish someone could turn back time. I wish I was warned, told and cautioned. I wish I had done my own research. I wish I wish.
Doctor wants me on neurontin. I really don't want to add medications and am holding out. The pain feels truly unbearable, I mean agonizing. Agonizing chest pain, All my nerves are on fire. Why Why am I having such a bizarre reaction. Will I ever be me? Neurotic, funny, energetic me. Happy, healthy me. I really wonder. I want to stay positive but I am positively worried. Please god or whoever protect me now through this dark journey. I have two beautiful children I want to play with, I want to sing to, I want to read to. This is crazy. It's a perpetual internal state of shock. Please body bear with me. Please body carry me through this to the other side. I am counting on you. My doctor dumped me. He is finding someone else that can work with me because he doesn't understand why this is happening and what is happening. Neither do I. I am too tired to think. I am too tired to research. I watched a documentary called AWAKE today. About the Yogananda who was in a deep meditative state, writing at all hours of the night. I want my body to be calm again. What is that like? To rest. To feel peace. To feel joyful.
People say this is chemical as well as psychological. My battle is not reacting to my symptoms. Let them come and go, arise and observe. But when you are writhing in pain what is there to do.
I will be be again.
I will be me.
I must hold on to that no matter how long it takes.
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.