I called a hotline yesterday. I was alone in the house pacing with inner restlessness. I was in agony. I could lie down but then would have to move. The thought that it is this bad now and I am not even off the drug, that is not comforting. Each successive withdrawal keeps getting stronger. My heart is beating faster, skippng beats. I am unwell. This just started with 3 times a week use for four months? WHAT?!!!! How am I here? Why am I here?
The woman who answered was named Loretta. She was somewhere in Maryland, I am not even sure. I felt a calm when she talked. She said, "what can you do right now. Put that inner restlessness to work. What is one thing you can do while you are on the phone?". I paced and sobbed. I just want to be me. She said, "There are two things we know... this is temporary and there are others that have walked this path before you". Then she asked me if I was spiritual. I said, yes, She asked me to talk to god, or higher power or whatever. I started to clean my kids room. It was painful. My legs are shaking, they feel like jello and I have no strength. Just one week into this acute type of feeling has aged me 10 years. God, I yearn to feel as good as I did two weeks ago. What the hell happened? With valium it is sneaky. It sneaks up on you at the 3 week mark. I am getting to know this process and my body. I should have held my taper and not continued while I was sick. I was doing so well. I am afraid. At what point do I go to a hospital. I am safer at home. When I put my head down at night I pray I will wake up. Then when I wake up I sigh the dreaded sigh of oh no not one more day of this torture. One foot in front of the other. One foot in front of the other.
I don't have the energy to call anyone. Doctors will only push medications. I tried gabapentin twice but have read that has it's own withdrawal. It is just covering up what is underneath....the benzo withdrawal storm.
So back to Loretta. She was fantastic. She kept reminding me she was not a licensed therapist. I told her, you are better than many of the licensed therapists I have talked to.... She was a soulful smart, tough African American woman and through her advice I could feel she had walked in these shoes. or similar shoes. When I asked her if she had known anyone or if she herself had experience with this... she just laughed. Then I knew. She understood me. She understood this beast. She got it.
I started the conversation by saying I am tapering off a medication. She was quick to say, good for you, but then I said, well actually I am down to the last 1mg and don't know how to get off without losing my life and my sanity. I truly don't. I need someone to hold my hand. Someone that has walked this path before.
Loretta said , "pray to god and know he is with you at every moment. Where is he right now?" I said, "He isn't with me", She said "you are giving in to the fear every time you stop believing and talking to Him." I am starting to get religious folks. Just get me out of this pain. I listened,"ok". The fear, yes, When the restlessness comes it is so agonizing that there is fear and pain around the painful sensations Relax into it. Go with it. Don't fight it. Don't fight it. Divine, Source whoever is with you. Each and every step of the way. Instead of turning to the fear, turn to source energy, turn to the divine and know you will be ok my friends, we will be ok one day.
Step into the restlessness. USE it. Easier said than done my friends. My poor body is tired. My mind is frayed. So much has happened in the last week. I have lost many things. I am in disbelief. But I have had no choice but to walk this path alongside many walking it right now and those that have walked through it in the past. They have gotten through and I pray that I will too, Please let me get through this.
My body is burning today. I burn ALL OVER. I feel sick to my stomach. The restlessness has lessened. Today, I have the gift of burning. Someone on BB said it was his doctor saying that the nerves are coming alive again and it's a GOOD thing to burn. Ok, whatever idiot. But, I prefer that to someone scaring me. My own doctor said I had some autoimmune process going on--last thing I need is more fear. Burning is withdrawal. That's it. Let's keep it simple because I cannot do anything about the damage this is causing. Yesterday I made it through, yes, I made it through. With the help of Loretta and so many others.
Loretta said, "Call me anytime". I will call Loretta, I will call. You were my gift yesterday.
My posts have been getting desperate.
This week has been agony.
It's just an alteration of agony
Today terror. I can't leave the house.
I cannot believe this. I am in disbelief and I know I need to be in surrender.
But everything is falling
I just want inner peace the restlessness is agony. I will take the chest pain over this terror.
It hurts. It just hurts. How am I going to get off this drug?
I have hit a low. I don't think this is "normal"
It feels bad, really bad.
I cannot care for my children or do anything.
I am so mad.
I am mad as hell at myself and this doctor that did this.
Where do I turn?
I talked to an old therapist yesterday who told me I need to sit on the couch and watch TV and eat Bon Bons. Do nothing. Think nothing. Write nothing. Say nothing. Just be. Noone understands benzo withdrawal if they haven't been through it. I can't even sit or lie down,. The burning terror I feel is too much. Too much. I am scared I am hitting acute even before I have jumped. Slammed at 1mg of valium. Doctors applaud me for getting to 1mg valium, but what is the applause for? I feel like I have been having a string of bad luck. Like things going from bad to worse. And they all involve doctors and medication and tests. Trying to stay out of the doctors office as they have ZERO to offer except medications. However I am on an adjunct medication remeron to help and tried gabapentin two days ago because I have been writhing in chest pain. My chest wall, my chest feels like it is in a permanent state of shock. This is not good for me or my body. Others descibe this to a T.
My sponsor says the more I focus on the physical symptoms the more they will persist. That is true. But I don't feel like I can function. One week ago I laughed and walked along the beach. I mean I wasn't "good" but it was ok. Since then the prickling, pain, night sweats, pounding heart has taken over. I am really scared. I am really not ok.
What did I do to deserve this?
I listened to an idiot doctor. " You aren't an addict, you need to sleep". I said " No, no I am scared to try anything new".
He said " It's ok we will deal with you getting off after"
It is the past. It is the past. Nothing we can do to change it.
This is meant to be. Right? There is a purpose? Right? Why am I suffering so? Did I bring this on myself?
I am wondering if I have brought this on myself.
When I mention valium to others, they dismiss it--ohh it cannot be that.
Ohhh yes, it can my friend. Oh yes, it can.
Are all the people on BB lying?
Making this up?
I understand there is a part that has to do with our thoughts, feelings and actions. That is all very well and good when I was feeling well enough. Yesterday even sitting still for meditation brought up immense burning and pain. Suffering.
This stress response is too much to bear. I am afraid that my already altered immune system won't be able to take anymore.
My children sit and laugh, they watch TV and I give them a cuddle. I want to be close to them so badly. But I am so far away.
I am not me. I can't reach me. I was outside with neighbors pretending to look normal when I am fighting this burning. Fighting the terror. I can't reach her. I can't reach me anymore.
I am so scared. I am so tired of this struggle and it is only beginning.
Maybe there is no sense in writing. It's so dark and sad.
I was told by a healer in India there is black magic upon me--he said he is clearing it Yahooo. Please do. I feel I have really gone from bad to worse these last 3 years. Something is amiss. Something needs to change. Give me a chance. I am too sick to do anything at the moment except survive once minute at a time.
There are so many people stronger than me.
My soul is strong even though my body is not. After this is over, I probably will never want to look at this again.
This is your body healing.
This is your body healing.
One more day is closer to healing completely and fully.
I believe Baylissa. I believe Jennifer Leigh. I have to. I have to invest in the stories of success. The stories of triumph. Even from the depths of hell that I am in right now.
Telling myself, This is just withdrawal.This is just withdrawal.This is just withdrawal.This is just withdrawal.This is just withdrawal.This is just withdrawal.This is just withdrawal.This is just withdrawal.This is just withdrawal.This is just withdrawal.
I think we tend to question this because of the true horrible nature of iatrogenic injury from these class of medications. I cannot sleep. But it's beyond just that. I won't moan about the symptoms. I am eating waffles at 4 in the morning. I have to. I am trying to stay full of nutrients and nourishment no matter what. If I feel a little hunger, I force myself. Force feed myself. I need to keep my weight up. Oh, the irony. I spent my latter teens and early twenties wanting to stay thin. Overexercising and keeping fit. Now all I want is peace. All I want is stillness in my body and mind. And ten pounds. Perspective.
I look at photos of when I just gave birth and I yearn to go back to those days. Any day but today.
But here I am. That is the root of all suffering wishing I was somewhere that I am not. So, here I am. In this moment up since 2am. eating waffles and writing on a blog that noone will ever see. Being in the here and now.
I am grateful. I have a lot of love in my life. My beautiful children, my husband, Friends, old ones and new ones. My neighbor and close friend saw me yesterday and started to cry. She is an amazing person. Amazing. She cried with me, rubbed my back. She is holding together so much herself and I value her friendship. I have a new benzo friend too, he is local and we just connect. Same wavelength. Another old friend came by and just sat with me. Hugged me. Told me it was hard to see my suffer. That is what all of my friends say. And I am done with it too. I am really done but it's what my brain knows. Do I continue to push past my body's limit and keep going? No, I feel worse doing that. Staying home now feels safe. This week is hard and I hope that it will get better with holding. What worked for you dear reader, fellow benzo warrior?
A friend of my husband's came over and we talked about death. He said, it's like a candle that is lit up and it has to go out sometime. It's a beautiful thing and doesn't have to be a scary one. But I am not ready to leave this fucking planet. I know I have to walk through some more suffering to get to the other side of this but I want to get to the other side. I want to find peace and quiet in my mind. Soon. Very soon. I want to read stories to my children, pick them up from school and feel their hugs when they come running up to me. I want to take them to the park, throw a ball and hear them laugh. I want to hear their excitement, their joy, I want to kiss them when they are sick. I want to be well enough to do these things and right now I am not. I am not well enough to do these things. I have been limited all year long while on this taper. I fake it. Oh yes, I can do that. But now I surrender. I am not surrendering to death though. I am here fighting no matter what. I cannot fake it any longer. The days will be what they will be and I will bless the good moments until they lessen one by one by one.
I wish I had Baylissa by my side 24/7. I don't know how she does it. The woman is a freaking magician. We laughed on the phone. We talked and talked and her stories of her experience reassured me. She is better now. She assured me that we would be laughing and that soon I would be better too. I treasure this woman. She is really and truly a gift.
Ok this is getting real. Yesterday was brutally hard. I went on a walk in the morning. But the terror, and I mean terror was with me for no reason. I broke down at 3pm and took a neurontin. My chest was in literally agony, I couldn't breathe.
Yesterday I was ok. Window, wave, window, wave and on and on. This isn't made up folks. I am scared. I tried to meditate and will go back to it after this. It's 4am. That is not a good hour. Sleep is everything. I wonder and ruminate about what this is doing to my body, will I survive this and be here for my children, YES YES YES. Someone once said to me, what you don't understand is that everything is possible in connection to the divine. Everything. Please let it be so.
I am praying out loud here to help get me through this. I hope I never have to see this post again, never have to relive what this is like. I am healing. I am healing. Despite the fact that my life is crumbling, I am getting an upgrade, somehow some way.
I don't know the how and when but I believe it. I am healing each and every day.
I need to be a mental warrior right now. Anyone that has gone through this, and is sensitive to these medications knows what I am talking about. I don't believe my taper helped me. I really don't. Maybe I am hitting a stumbling block. I was functional until recently. I am resistant to take other medications but I don't think it helps to suffer needlessly either. It is harder on the body too. The body is resilient. It heals, new cells grow, change and heal. Believe that. Your body is healing as it's trying to rid itself of these poisons. Believe it. Whatever underlying thing has happened I cannot figure it out now. Just lay your head down and tell yourself it will be ok. It has to.
My skin is on fire. I can barely sit still. My heart is beating out of my chest. I am scared. No two ways about it. I desperately want my mind and body back. As imperfect as they were/are, it was nothing like this. I could sit still. All my nerves weren't on fire. I was happy. I could read books to my children. I could sleep somewhat. I was doing ok. Drugs have made me into someone else. I want ME back so terribly badly.
I was on facebook and saw a post of a woman who committed suicide because 11 mos post taper she was still battling akathesia. The dreaded symptom that made me reinstate. I feel the storm underneath me.
I feel too confused to do anything except write. I don't even know if I am making sense or who I am writing to. I am just writing. It's calming. And for whatever reason, being on BB feels calming too but I know it actually is NOT calming. Goal: stay off the boards for a week. Let your body settle.
I think it is time to surrender. I will see how this week goes. If it continues to be this brutal I need to stop working. The thought of accumulating debt for an unknown period of time fills me with fear. I know money can't solve problems but having money right now would help. I could hire a nurse. I could go to a center to calm my system down. Really, what is the point.
A treatment center won't fix a broken nervous system, only time will.
I have to get my positivity back..
The one thing I need to look at is my supplements. I added zinc and something called juice plus because it is supposed to help the immune system. I know when I tried NAC I felt like this. And when I tried magnesium I felt like this too.
I was so up the other day I thought I would never sleep. But I did. Barely.
Scared scared scared.
I am preparing and going to hold right now. I am stopping all supplements and hoping that a good nights sleep will help me.
Today is a very rough day.
Very very rough.
I need a plan of action, a team and I feel like a lone wolf figuring this out with a sick brain.
I don't know how I have survived it this long.
I do not want to updose but I do not want to feel this. Did I go to fast? ignore ignore ignore
Pray pray pray.
So, in two days the BIG number is here. I am at 1mg, But, sadly, I am struggling. This week was hard. Extra responsibilities with children and work. Last night I could not sleep until 3am. So far along this process I have not had problems falling asleep, just staying asleep. I would say I have been sleep deprived but this week reminded me of the beginning of my acute cold turkey.
Everyone asks, did you taper too fast? Updose. Hold. How the F>:@#$ do you ever get off?
My PVC heart palps are getting stronger. The feeling of being AMPED is intense. Even previously when my stress response was on, somehow I could fall asleep. Maybe I am rewriting history. Goddamn you benzo withdrawal. I do not want to allow this little tiny pill to take everything away from me.....my children, my career, my marriage. Because of a tiny pill that was PUSHED on me. Fuck that guy. Sorry, I am resentful. I just AM. Today I talked with a doctor who had his own experience with benzos. I was comforted that he revealed to me his own struggle and surrender to just stay on sleeping pills. He has been on them for 40 years, since he entered medical school. He was on much higher doses but was able to come down a significant amount, and then just decided, this is too hard. It is. What Baylissa did required 3 years of complete surrender. Jennifer Leigh as well. And so many others that have graciously posted their successes on BB. They are beacons of hope, light at the end of this dark dark tunnel. I talked to another BB'er and when I said my biggest pressure was having to get up for work, she remarked that it is rare for someone to be able to hang onto their job while enduring this.
I called my doctor this morning to discuss this amped feeling. It is hard to describe but it just feels as though all of my nerves are awake. I don't yet feel manic or psychotic or anything but I am on that spectrum, Wednesday I was almost feeling good, But I have to be careful with both 'good' sensations and 'bad' ones. The excitatory states just go higher, and higher and higher and higher.... No. I am not bipolar. Never have experienced this lack of come down in my life. NEVER.
Several days ago I stopped being able to wear my contacts because my eyes started burning and watering.
My bladder was filled with discomfort. I sweat in my sleep. My ears are ringing. I burn. But, the main problem is SLEEP. If I could be guarenteed sleep and no akathesia, I could do this.
The doctor I saw today told me I seemed agitated. Yes, I am agitated. I just meditated for 45 minutes. I am trying to do my part. I know everyone says, stop focusing on this , stop talking about it... but it's just fucking hard. It's hard when you are trying to keep your life going. It's hard when you look 'normal' but feel that you are crumbling inside. It's hard when you fear that a psychiatric hospital might be in your future. Something I would never have thought I would utter in a million years.
Doctors have been over prescribing these medications since-- I don't know the 50's or 60's. A tragedy that this doctor, a fine fellow was left on these drugs for this long and tried multiple times to get off. He said it became unsafe with blood pressure and other issues. What the fuck people? Wake up doctors. Please please please. What is it going to take? So many doctors and nurses and people that are dealing with this in hiding. Ashamed to come out and talk about their experience for fear of being looked at with judgement and misunderstanding which most likely they would. Honestly, you cannot possibly understand the depth of this unless you have experienced it first hand or have witnessed the suffering of someone else first hand. This doctor told me that benzos stay in your bone marrow for over a year. It takes a long long time for them to leave your system.
So, yeah. I guess tonight I am agitated. Yes, that is accurate.
What about you? I hope today is a better day. Don't let this post discourage you. Tomorrow is a new day. And this next moment I take a new breath.
I recently was on one of the sites and someone said, let's play an unproductive game. List all of your symptoms. I know it isn't helpful or productive. In fact, its counterproductive. But new ones spring up every day.
How do you know what is benzo and what is an underlying issue?
These last couple of days it has been my eyes. They hurt. They water, They burn. I can't see well. I know when I have had the stress response turned on several times during this journey I felt my eyes burning and I couldn't see. It's a lesser version of that happening. It's scary. I guess that is why you call it a brain injury. I am going to the eye doctor today only to check things out. It happened suddenly after this last virus. I thought it was my contacts and have changed them multiple times. I can't believe how OLD I feel. Young inside, but OLD in body. Older than most OLD people I imagine
I am kvetching about something everyday. I hope this gets better because this is no way to live. Eyes burning, straining, watering, bladder 'down there' burning, heart palpitations, mild akathesia, twitching, shaking episodes, full body burning, lack of sleep, feeling like you are going crazy on the edge of insanity, GI upset, weight loss, sympathetic overdrive and everything that comes with that..... feeling like time stands still and this is torturing you day after day.
Or, let's look on the bright side? The only bright side is the belief somewhere that there is a greater purpose in this. That this is happening for a reason but I do not yet know what that reason is...
Today I needed to vent. I needed to get this out. I was reading Jennifer Leigh's site about what she wished she could or would have done differently in withdrawal. One of statements is she wished she hadn't talked or focused so much on withdrawal. It is really hard when you are in it. But, as before, I think it's important to train your mind and your brain off of the symptoms. At the same time, it is very aggravating when people shut you down without listening to your symptoms at all. I have several friends whose only comment has been "this has been going on for sooooo long"... well, that will make you never call them again.
Feeling blue. Feeling down. Feeling edgy. Sorry-- I have to get back to the positive me, but this time of year is normally dark for me. I hate the winter. I hate the fall. I like the sunshine. Healing is happening, Healing is happening. Healing is happening. Each and every day. Each symptom is a layer of the onion peeling away and off, and healing. One by one. Leaving you, one by one until you are whole again.
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.