Withdrawal Symptoms Revisited

I realize that Don and I are beyond the place of intense suffering from withdrawal symptoms. We now blog more about the new lives we have: the gratitude and the hope we feel. That leaves some of you who are still struggling with withdrawal symptoms, without a “voice” for where you currently are in your healing.

I’ll revisit my symptoms.

When I was tapering, I became bedridden. I was too weak to stand up for very long. Taking a shower was next to impossible. I don’t have a tub, so I stank most of the time from lack of hygiene and benzo withdrawal sweating. Brushing my teeth hurt my arms too much so I often had a foul mouth. I practically shaved my head so I wouldn’t have to worry about my hair. I was too weak to prepare food. Some days I went without eating. I bought a walker that had a seat, and I used it when I managed to find the strength to go out into public. Prior to that, I used a cane, but that was not enough help as I deteriorated more and more as my dose got smaller and smaller. The weakness and fatigue were overwhelming and frightening.

During my taper and then after my cold turkey, I suffered with these symptoms (in no particular order): burning skin, formication, muscle spasms, muscle twitching, tinnitus, back of head pain, brain fizzing in skull, brain rolling around in skull, head pressure, behind my eye pain, mouth-teeth-jaw pain, burning tongue, burning spine, full body tingles that felt like bee stings, restless legs, aching, burning muscles, constipation, benzo belly, bladder problems, food sensitivities, sounds made me feel terror, anxiety, depersonalization, derealization, obsessive thoughts, mood swings, memories from life events, depression, panic, racing thoughts, racing heart, hot flashes, insomnia, tight chest, heart pain, skipped beats, trouble breathing, ear pain, neck, back and shoulder pain, bicep pain, buttocks felt like they were being pushed in and rotated with cut glass inside of them, body jerks, paranoia, hallucinations both visual and audible which resolved after a month or so after my cold turkey, trouble walking, feeling as if I was being pulled down, flashing lights in my peripheral vision, ocular migraines, feeling as if I was moving up and down when sitting or lying down, organic fear, organic terror, profuse sweating, cysts on knuckles, painful blisters on my thigh, severe joint pain, feeling unable to connect with reality or people, sobbing, dizzy, memory problems, unable to think straight, confused, exercise intolerance, all of my emotions felt too big, smells and sunlight overwhelming, Alice in wonderland syndrome, metallic taste, song in my head, looping thoughts, fear of going insane,  …. and more.

I was an utter and complete mess. I prayed for death every day. Now of course, I am so grateful I didn’t die. I still have some physical symptoms, but they are manageable. I know in time, they will fade away. Bliss Johns told me that the tinnitus may never leave, but that is ok. I can live with it. That’s a small price to pay to regain my life.

Most of my troubling psychological symptoms are gone too. What is left is barely felt, and it isn’t a bother.  I know it will be gone as well very soon.

If you are still suffering symptoms, please know that the usual outcome for benzo withdrawal syndrome is recovery. Your central nervous system will heal. In time.

I had many, many, days feeling utterly hopeless. I was certain that I was doomed to live in the hell of withdrawal forever. I think the hopelessness was my worst symptom.

I coped by gardening. I created a wonderful flower garden in my front yard that my whole community enjoys. I have veggies planted on the side of the house. I spent full days out in the sun, feeling crazy as a coot, but kept my hands and my mind busy and focused.

I also coped by letting go. I surrendered my life over to God as I understand God. Now mind you, I was pissed off with God a lot, (most of the time!) and let God know it. I’ve called God every curse word in the book. Thankfully, God loves me enough to overlook my anger. God knows the anger was really fear. Deep horrific fear. Fear of living, fear of dying. Fear of everything. When I let go, and let God, I still suffered, but I felt carried. I knew God was doing for me what I could not do for myself. I am deeply grateful. If you can let go of your expectations about your recovery and trust the process and trust God as you believe in God, I assure you, things will be more manageable. You may still suffer, but it will not be as intense.

I’ve come so far in my recovery. Life is wide open with possibilities now. I am so grateful. I wake every morning and ask God what s/he would like me to do for the day. I do my best to follow the guidance I am given.

If you are feeling hopeless, please know that many of us felt the same way and now we have fresh, new lives brimming with hope. We have our health back too. Even with the few remaining symptoms I have, I feel better than I did when I was in severe tolerance withdrawal waves. And I know I am only going to get better.

I know the symptoms can be almost unbearable. Find ways to distract. Find ways to comfort yourself. Accept that you are in benzo withdrawal and you are healing. Don’t look past today. Stay right here, right now. This moment is the only place where you can access God. You can’t access God in the past or in the future because neither exit right now. Be fully present in this moment.

Life is a series of ups and downs. We’ve all been down in withdrawal. Up is the only place to go! And we will all get there. One day at a time.

God Works In Mysterious Ways!

Before I walked off the cliff called benzo withdrawal, I was a leading authority on teen girls. I had written four books and had a wonderful coaching career.

True, I was sick in tolerance withdrawal, but I was unaware there was a singular cause to the myriad of health problems I suffered. (Now I understand that my years of ill-health were the direct result of following my doctor’s orders and swallowing a benzo every day.)

Without going into the gory, gory, gory details of my taper and cold turkey off of clonazepam, I will simply say that benzo withdrawal was hell. I was terribly mentally and physically ill. For a very long time.

(I keep promising that one day I will write my story in intimate detail, but not yet. It’s too soon. It’s still too fresh.)

Believe it or not, I am grateful I have had to walk through this valley of the shadow of death. I needed this immense lesson in how to surrender so that I became willing to turn my will and my life over to God.

I wake up every morning and commit my life, for the next 24 hours, over to God as I understand God. During the day, I pause when troubled and ask for help and guidance. For the past few months, I have been asking God what shall I do with my life, now that I am closer to healed.

I feel very led to work with people in recovery from substance abuse and benzo withdrawal, of course. I want to help them get their lives back on track. The more I focus on this path, the more it opens up for me.

I have started a recovery coaching/consulting company to help people in recovery from substance abuse and help people in benzo withdrawal. My friend and colleague, Dr. David Rusen, a psychopharmacologist, is benzo-wise and has agreed to come out of semi-retirement to help benzo patients. (Thank you David!) I am looking forward to seeing where this all goes with David on board.

If you had asked me a few years ago what I would be doing for work when recovered, I would not have said working with people in recovery. Nor would I have thought that therapeutic gardening would be a part of my toolkit, but it most definitely is!

My life has changed 180 degrees for the better. I am a much better person than I was before I started my journey into recovery from alcohol and benzos. God humbled me and I now humble myself before God. I am grateful and I am deeply fulfilled with my new work and my new life. My happiness is something that is now organic in my heart and not dependant on outside events. I am, as they say in AA, happy, joyous and free.

BTW, I understand that in withdrawal it is often very hard to feel that God is present. For me, the mere thought of God sent total terror down my spine. It took over 2 years before I was able to ponder God without a mental freak out. I was often angry at God and I wondered if s/he had grown tired of me. If you are in that stage of benzo withdrawal where you can’t feel God’s love or the thought of God terrifies you, know that those feelings will fade away.

Please keep holding on. Everyday your receptors heal a tiny bit more. Don’t quit before your miracle. I am here to tell you that life keeps getting better and better and better. God is working in my life in mysterious ways. All I can say is “Thank you God. Thank you.”

Conference Call For The Benzo Summit

I am planning a conference call for Sunday for anyone who wants to discuss the benzo summit I want to hold his summer.  Please email me and I will give you the time/call in number. If you do not have my email, please reply to this post.

I am very excited to be putting this together.

I am still sick with body sx, but the mental continues to lift, return, lift. But every time it returns it is less bothersome.

I am hopeful that one day my body will heal.

I spent the morning writing a new book, then went to the beach with a girl friend. We had a fabulous lunch then poked around in gardening  and cooking stores. I had a blast. I can honestly say that I felt more continuous joy without intrusive thoughts today. First time in over three years I’ve felt this happy.

It is a shame that I (all of us!) had to suffer for so long because of a prescribed medication I took as directed. But I am grateful that every month seems to bring better days.

I intend to help doctors become educated, and help others stuck in this horrific nightmare.

Look forward to sharing my ideas and to hear yours.

Jennifer

 

First Annual Benzo Recovery Summit

I am planning to host the first annual Benzo Recovery Summit some time late this summer, or early fall. It’s a dream I have had for a while. Not sure I can pull it off, but I am going to do my best to make it a reality.

My vision for the summit is this: Benzo survivors can meet each other and share their stories. We will meet to brainstorm how to change the current prescribing laws, and how to get more media attention to the cause. Also, how to help others and their families who are still in wd.  I see a time for educating doctors too. Not as adversaries, but as comrades in arms in the war against the damage these drugs do to people. I also see a time to have an open dialogue with the CEOS of the pharma companies that make benzos to ask them to help this cause.  This is NOT a bitch session, a pity party, or a war on the doctors or drug companies.

The summit will be a time to share and care. I am hoping to get it hosted at Stanford, and will do my best to get media coverage so more people get educated about the dangers of these drugs and the long, hard road back to recovery that some of us have to travel.

I can’t do this alone. If anyone wants to join forces with me to brainstorm, make phone calls, plan, etc. please contact me and let me know. I have invited Bliss Johns to attend. She is unable to do so in person due to her heavy counseling career, but she has agreed to take the time off to appear  live via satellite. I’ve invited Matt and I will invite Jack as well. I’ll do my best to find places for people to stay that are affordable. I realize that many are too sick to travel.

I may ask if Stevie Nicks will join us, or any other celeb who is now benzo free.

At this phase it is just a dream. But it’s a good dream. Anyone up for helping to make it a reality?

I Was Waiting For Myself After All.

I celebrate 32 months of freedom in a few days. I can’t say that I was exactly celebrating my freedom too much before this, however grateful I was to have swallowed my last benzo. The months, well, years really, before were more about sheer survival.  If I celebrated anything, it was that I made it through another fucked up, horrible day in benzo withdrawal. I used to dread turning out the lights and dragging myself into bed, for I knew that it meant I was only hours away from having to wake up and do it all over again.

It’s the oddest thing. It is like I fell asleep for three years and now I am waking up and thinking that it is still 2010. I look in the mirror and the gray hair and etched lines on my face remind me time has moved on. I can’t tell you anything that went on the past few years other than I survived them. It is almost as if someone else lived them for me, for surely that very sick woman wasn’t me.

Now that the black thick fog of withdrawal is lifting, I remember who I was. The memories are rushing back in to fill the gashing wound that is benzo withdrawal. I don’t know how to explain this phase of healing any more than I can explain the unfathomable journey before this.  It is wonderful and scary to have the memories of myself come rushing in with such clarity and strong emotions. It’s a tad overwhelming. But I know in a few days or weeks, that it will feel more “right sized.”

The overachiever in me wants to jump in and make up for lost time now that I am turning more corners.  I’ve learned it best to take it easy in benzo withdrawal though.  I know that tomorrow I could wake up and be engulfed in the mental misery yet again. I am not convinced I have been spit out on the shore, battered and tattered, for the last time. I respect benzo waves.

Even if I do get drug out to sea yet again, I know with my whole heart, that I will be waiting for myself upon the shore when I am released. This phase of recovery from benzo withdrawal is pretty damn cool. A tad unnerving, but damn sweet. It’s like I have been away for a long time, and now I am back. Everything looks so fresh and new. And the world is brimming with possibility again. Indeed. It is brimming with hope.

 

 

 

 

 

 

 

 

 

 

 

 

Your Brain’s Wiring

Before I got benzo sick, I was studying social and interpersonal neuroscience. I have always been fascinated by the brain. I find it sorta ironic that my brain’s GABA receptors (and who knows what else) got terribly damaged by a pill I took as directed by my physician, and I would need to heal my own brain.

The video below doesn’t show GABA receptors per se, but it does show you the complexity of your brain. Maybe after seeing this, you will have more patience with the healing process your brain is going through. Also, you will note that one of the images shows neuronal axons reaching out to make connections to others. I firmly believe what neuroscientists say about “what fires together, wires together.” If you cope well by accepting your symptoms, you are in essence preparing yourself for a much better time after you recover. You are training your brain ( and central nervous system) to be less anxious, and I assume, far more resilient.

Enjoy the video.

The Noise Inside My Head…

It stopped!

I woke up last Wednesday to a quiet mind. The usual obsessive thoughts about death and dying and the futility of life were gone. For two and a half years my daily life was terribly darkened by unwanted thoughts and fears that haunted my every turn. They are gone. I am grateful.

I have renewed hope that one day, both my mind and body will heal. I will be better than new.

I don’t wish this withdrawal journey on anyone, but now I am grateful I experienced it. I am a much better person than who I was before I was put on a benzo. I have grown oh so very much. Now with my mind quiet, I can focus on the areas of my life that I was unable to attend to while I was sick in withdrawal: I can begin my career again. I can earn a living. I can fall in love. I can be a good friend. I can be a good mother and daughter to my family. I can now be of service to others.

My body is still healing, and that is ok. I trust it knows when the tingling, burning, bone, nerve and muscle pain should stop. My mind might get cloudy again too, for a while. But if it does, I will know its “just withdrawal” and go about my business.

Many of you know I joined AA right before I started my taper. I believe that working the steps is what helped me hold on in withdrawal. And now, it is time in my life for what we in the recovery fellowship call the 9th Step Promises:

 If we are painstaking about this phase of our development, we will be amazed before we are half way through.We are going to know a new freedom and a new happiness.We will not regret the past nor wish to shut the door on it.

We will comprehend the word serenity and we will know peace.

No matter how far down the scale we have gone, we will see how our experience can benefit others.

That feeling of uselessness and self pity will disappear.

We will lose interest in selfish things and gain interest in our fellows.

Self-seeking will slip away.

Our whole attitude and outlook upon life will change.

Fear of people and of economic insecurity will leave us.

We will intuitively know how to handle situations which used to baffle us.

We will suddenly realize that God is doing for us what we could not do for ourselves.

    Are these extravagant promises? We think not. They are being fulfilled among us—sometimes quickly, sometimes slowly. They will always materialize if we work for them.

Now that I have a quiet mind, free from the incessant noise of intrusive and obsessional thoughts caused by withdrawal, I can begin to manifest those promises.

The quiet is utterly amazing. Thank you God!

Fox News Covers Benzo Withdrawal

Popping Xanax is more harmful than you think, writes Fox News. It’s an article that first appeared in Self.

I wrote to Fox today, asking them to please consider a follow up story about life post benzos, as the healing can take so long and we often lose so much.

You can write to them and encourage them to cover the story more in depth.

foxnewstips@foxnews.com is the email to use. You may want to mention this blog and the petition.

BTW The flu really set me back in withdrawal. I am struggling, sorry to say. It is hard to believe that 2.5 years out, I can still be burning, tingling, and having severe pain, along with crushing fatigue. 

It’s a long road back to health for some of us. And frankly, I am weary of the journey. I am so ready to put this chapter in my life behind me. I know each and every one of you are as well.

Keep fighting. I will too.  I love you all so very much.

Jenn

 

 

 

I Made Some Posts Private

Hello my dear benzo buddies!

I made a few recent posts private. I will make them public again in a while. They aren’t deleted, just hidden from public view.

Please take good care of yourselves. I know it’s a long, hard, tiring, lonely journey. But there is an end to it. Our receptors do eventually heal from the damage done to them. Our bodies, brains, minds, and souls do recover.

Try to focus on the things you do have, not what you have lost, or don’t have. Focus on the love in your life, not the resentments or anger. Be grateful. You have breath in your lungs, a pulse…. THANK YOU GOD!  Focus on this moment. The past is past, the future hasn’t arrived. You only have this moment.

BTW, I recently applied for an amazing job that I would be honored to have. It’s a position right at the heart of my two passions, youth development and agriculture. It would be a true blessing to finally be able to go from being so ill, to working at a job that totally sings to my heart and soul. I am trying not to get my hopes up too much and to trust that my life is in God’s hands, but I am excited about the possibility of being of service to an amazing organization.  I am now well enough from wd and the flu, to step foot back into the world. You will get there too. One day at a time.

Keep holding onto hope. It is the best cure we have.

Oh, one more thing. Bliss called me two days ago. It was good to talk to her. She always touches my heart. She is an angel among us. She reminded me that we all heal. It all goes away. So keep the faith.

Keep fighting everyone. It’s a battle worth fighting, because you are worth fighting for.

I love you all so much. I am so very grateful to be walking beside you in this long and grueling journey.

Jenn

PS I posted this shortly after Don made a post so keep scrolling down for his AMAZING story. You don’t want to miss it.