I talked with two friends today. Both prescribed benzos. Both may/may not understand the gravity of this issue, as they may not be sensitive to this kind of medication. We really can't project that other's will have difficulty with this medication because not everyone does. Talking to so many others leads me to believe that there are certainly MANY MANY of us however, I have also personally witnessed people getting off in a matter of 6 weeks with NO issues. Life is unfair sometimes.

The one friend has struggled with many medical issues. Now she can't sleep. She's been on .25 of klonopin and another med for the better part of a decade. The time recently when she did get off all of her meds, she was bedridden. I told her, maybe, just maybe her med was the problem. She said it wasn't. She and many say I am obsessed with this issue and now see it everywhere. 
I do. And I could be wrong.
However that 'small' dose really isn't so small, especially when she's been taking it for a decade. She's no longer functional. Very depressed, fatigued and can't sleep. I am sure it's the perfect storm of benzo, hormones etc etc. 
My other friend is an alcoholic. She was on benzos and alcohol for about a year several years ago and went to rehab. They pulled her off .5 of xanax. She had a touch of discomfort. 
Now this is several years later. She's been on a benzo again and drinking. This time she lost her prescription and was out of meds for four days. She had horrific brain zaps and seizure like symptoms. She was pacing. She didn't FRY because it was only four days. God, how I wish I wasn't so stubborn and hard headed and let myself FRY for close to 4 weeks. What have I done?? She plans on getting off in a month despite my warnings. She is raging, can barely parent or get to work. She isn't tapering and she doesn't have the extreme physical symptoms that I currently have. But still.
Two more examples of this mishandling and misprescribing and minimization of these meds.
I do believe that the meds ARE their problem. I have tried to warn them and point them in the direction of BB and other resources.
I actually wish I had never found BB. While it helped at first, now the stories are seared in my psyche. Because they ring so true. It was a blessing at first but then it became all consuming and haunting really. Sorry to say this but it's true. It's just been my experience.
​
Positives
I went on a walk
I pushed myself to get up and make kids lunch
I sat around
I am going to push myself to go to the store
Ignoring my symptoms -ignore ignore ignore.


Another day. Let this nightmare end for all of us soon. Let their be somewhere that is created to help those struggling with this pain and disability. Let there be some research done around this issue to help those struggling. Our current methods are outdated and harmful. Let the educators, teachers, therapists, psychiatrists, doctors, anyone and everyone who has witnessed this in others or gone through it themselves help raise awareness.

Let us rise above our pain and transform it when we are physically and mentally able to.
​

Today was an immunology appointment. Unremarkable, but waiting for results. However, he seemed to know a lot about akathisia. I may have hit the jackpot. He said he had a friend, a doctor, who was 'obsessed' with akathisa and felt that most, if not all of the psychiatric illnesses people were being diagnosed with were in fact akathisia. Wow. Who is this man? He said he was an out of the box thinker...an eccentric. He lived and breathed akathisia. I had asked if this doctor had in fact suffered from it himself? What prompted this interest? (if we could give doctors a dose of this for one week they would change ALL OF THEIR PRESCRIBING PRACTICES that second, guaranteed).

 This "out of the box thinker" isn't really out of the box.... let's just say he's a doctor that is THINKING. This akathisia doctor, whom I don't even know by name, is said to believe that doctors keep piling meds on because  patients are complaining of vague symptoms that are in fact toxic side effects, namely akathisia. I was so pleased to hear that someone on this planet earth, and possibly in my city, actually gets it. But of course he's labeled as an 'eccentric out of the box doctor'.  Wake up!!

​Theodore Van Putten MD was it seems from my research the big writer and thinker on this topic.  I will be waiting, hoping I can get this man's number at some point as I am tapering.

It is 2am and no sleep in sight. I had promised myself that I would stay OFF electronics which is the only way to calm the CNS into sleep. That and doing DNRS training. It is soooo boring I tend to fall asleep in the middle of each lesson.

​So, this immunologist did some tests. I tried to stay composed but didn't manage to. I left a seething message on my other doctor's voicemail and immediately regretted it. I have been trying to get into an EEG now for over two weeks but can't seem to get me an appointment. Tired of fighting. I cannot fight in this condition. No more doctors. They are utterly useless. Except this akathisia guy. I hope he can be an advocate at the very least.

​I really should write a blog on what NOT to do when you go to the doctor. And that will include everything I HAVE BEEN DOING. Argh.
I know I need to be composed, contained, stoic, present data.
That's sadly just not where I am at. I intend to show up that way but my emotions and PTSD get the best of me the minute I arrive. I just can't be contained anymore. And the more dismissive or hurried they are the worse I feel of course...

What to do when you go to the doctor:

Prepare a timeline
​Submit medical paperwork and relevant medical reports
​Start with what is happening now
Slow your speech down
Let them talk
Listen
​Don't become belligerent or argumentative
​Kill them with kindness
​Vulnerability works better than tears or anger (?) maybe??
Data
Stoic
​Get to the point--tell them what your concerns are and what you need
Bring in an advocate like your partner, mother, friend, someone who can vouch for you and who you USED TO BE ( I am speaking for myself)
​You direct your care, they do not. You present your data then make an informed decision.
​They likely know little to nothing about benzo withdrawal--you can teach them if they are willing to learn and listen (unlikely)

​Ok... so the above is what I did NOT do. Actually, I did provide a timeline and paperwork. I tried to slow my speech, but I am from the East Coast and that doesn't come so easily for me. I tried to present data and chit chat about his family. I tried. Hmm. I think I failed but.... I tried nonetheless. If your story is complicated with a long history of medical issues as mine is then keep it as simple and current as you possibly can.

​I feel somewhat hopeful that this appointment may lead me to someone who really understands the complexity of my primary issue and dread which is akathisia, terror, burning... all of which usually are rolled up into one.  Wish I could be writing about more pleasant things, But right now, this is what I am spending my days dealing with.
​I did manage to cap the day off with an evening walk. It felt ok. It tired me out and I was able to lay down for a bit, give my kids hugs and kisses and now.. hopefully before 5am I will be asleep.
​Good night.
​

http://sharonwachsler.com/lyme-disease-and-neuroplastic-recovery/

Check out her remarkable story. She includes a section on her taper off klonopin and depakote. She has had a remarkable journey. Look at what powerful symptoms the brain creates due to infections or drug toxicity you name it. 
​We can do this.

It's hard enough to take care of yourself in withdrawal. Near impossible depending on what stage you are at. I think this is why people stay on medications despite the desire to get off of them. They simply don't have the luxury to do so. I don't really mean luxury, because as anyone knows going through this or any drug withdrawal there is NO luxury at all involved in this process.  

It's brutal and life altering in a profound way.

We have to fight to stay positive or at least we have to fight to keep any remnants of our lives going. Sometimes when in your own home, as horrid as it is to be there day in and day out, you are not faced with the fact that life keeps moving. When you walk out into the world and see those busy living, it feels like a smack of cold air in my face. 

My kids miss me. My older one is more verbal, eager to express himself at all times, easier to connect to. My little one needs me so badly but instead of greeting me with hugs and kisses I get endless tantrums, epic epic ones that leave my battered CNS frying. I love him and yet he's hard to love at times. Or in withdrawal, everything, even mustering the energy to take a shower feels hard. I mentioned in a previous post that I have to give myself instructions like "Get out of bed" "Go" "Wash the dishes" "Go on a walk" (which I managed to do again after a hiatus yesterday).

Yesterday I had somewhat of a window. I was completely sleep deprived and hadn't gotten to sleep until 5am but somehow the day felt more pleasant. Today, no. Burning, prickling, terror. Waves and Windows. A doctor I talked to told me these waves and windows are kind of similar to seizure activity. I guess the instability of the day to day. I am not sure.

The other morning I pushed myself to get out of bed and get my son dressed for school. I haven't done that in about a year. I woke up late and saw him playing silently with his little doll friends in his bed. It made me sad. He hadn't woken me or come to my door. He never does anymore as they know mommy "has problems with sleep". They have been trained not to go to their mother in the middle of the night, and my emotional absence has left me feeling kind of like a ghost in the home.

I am here, but I am not here.

He was pretty docile until we got into the car. Up until that point I thought, right, I got this... someone is watching over me this morning. The minute we got into the car he let out a scream because he didn't have the right book. Or the right socks. Screams. More screams. I was dying inside. But I kept moving. We got to school and the teacher went to take him out of the car but instead he held onto my leg. And wouldn't let go. Not that this is news, as I knew his acting out has been a sign of lack. A sign he has been missing something. His mother.

I parked and entered the school. I thought, oh god, please don't let anyone see me. It hurts to go back to a place where I had so much joy and fun dropping my kids off and staying with them as they settled in for the day. Joining in circle time and chatting with mothers and teachers. I get comments like " I haven't seen you in a while?" " Where have you been, working?" If they only knew. I've been MIA.  He signaled for me to pick him up and I just held him. And held him. He let me.  

Today he told my husband he wanted me to come and pick him up again and as hard as it was I did it. Just for today.

This fucking drug robs us of so much. Or at least it has for me.

A doctor I talked to is trying to convince me that I need yet another drug for stabilization. He told me I was medically debilitated and that means I needed medical intervention. I don't disagree, I just refuse to put yet another chemical in my system with no exit plan.  What's the exit plan? Tack on two more years of a drug withdrawal? I am not willing to do it. As long as my symptoms are not endangering my life, I am already backed into a serious corner chemically. I know it. No doctor really understands that, but people in the benzo community do.

I am a kindled case and someone with serious drug hypersensitivities. I have akathisia which is currently somewhat "controlled" on this disgusting cocktail. I feel heavy and like an oompa loompa. A far cry from my quick, active, fit self. My type A personality doesn't serve me now. My stubborness doesn't serve me either, I just don't know how to trust a medical professional when I know they only have more medicine in their toolbox. No medicine will remove withdrawal. It might mask it. It might improve functionality for a bit... but the ones that seem to heal the quickest are the ones that weren't saddled with 5 medications.

This is forcing me to SHOVE reality in my mouth no matter what that reality looks like.

I talked to a fellow person on the path and she asked me to join her to create a vision board. I like her suggestions. Has anyone created a vision board? It's painful because I want that vision NOW.  Hiking, parenting,  active, healthy, stylish, laughing, making dinner plans, working, playing. Playing. Music. Fun. Rollerblading, bike riding. I yearn for those days.

I also came across a blog of this woman that actually did taper klonopin and depakote and elavil and healed from lyme and sensitivities using DNRS. Her story is remarkable. We have the power to do this. One way or another the body heals. It does.

Although benzo or any drug withdrawal is so hard to predict, I think it's important to come up with a plan of action. I have been trying to come up with some such plan for over a year! 
I told my husband I need to brainstorm with him about plan A/B/C.
​
So far some ideas I have are:

-Leave my home and go elsewhere to heal (friends, across the country, out of the country or just in another apartment away from my children).
--Have a list of friends to call upon (if they would be available who knows? Many have drifted away) that could come in rotations during acute to help cook or bring food or help me to the restroom.
--Hire professionals (how? with what money?) or care worker to be here for several hours. I am doubtful that this is provided by insurance of any kind.
--Stay in the house.
--Have a list of medical professionals that I call if/when things get ugly-cardiologist, psychiatrist, neurologist mainly... I need to assemble the team. Wherever they are...
--Do nothing. 

Do nothing is an option. Maybe the best one. But it seems hard to do nothing when you feel like the titanic is sinking. But if it's sinking it's sinking. As they say, rearranging the furniture on the titanic isn't going to do much. It's time for full blown surrender.
​
When I read Stan Grof's book on Spiritual Emergency he wanted to create a facility that assisted people in times like these. He had recommended having people who understand the process come and be there, bear witness, care for, while people were going through spiritual emergency.  The same goes for benzo withdrawal. So many of us have said the same thing. There is a virtual community online but nothing beats the face to face. We need that. There is a void and need that is very great.
Where is that facility? That places that provides a warm bed, simple reassurance, care and compassion from those that have walked this path and a medical team to make sure everyone is safe.

My main worries are the level of my pain and akathisia, my heart and my immune system. My emotions I feel I can handle. Hardly, but I can. It's the physical pain that is getting me.

Today I am feeling spent. Tired, chest pain, burning, prickling. The prickling is all over my chest, covering my heart and up my throat. It feels creepy and horrible. It makes me feel afraid. There is an uh oh feeling like what is next?  What is ahead?

I can't keep holding at this low dose. I have to either get off or stay on for the rest of my life. Someone who is quite knowledgeable on all things benzo withdrawal said that a kindled nervous system changes the landscape of things completely. I don't think there is a doctor out there that understands that. I don't understand it but I feel it. Everyday.

I don't know how one heals from that. I really don't. It seems like it might take an eternity, and be agonizing in the process. I would love to hear from others kindled that have HEALED. It would be fantastically encouraging.

I am sorry, I am not feeling so hopeful today. We have heavy rains at the moment, it feels dreary and dark.

I tried to meet a friend who was doing an art class today. I couldn't get there on time and once I arrived I couldn't leave my car. I just sat there. Spaced out. I finally headed inside but couldn't participate. There was no way. I sat in her living room for the remainder of our time together. Now I am home and life goes on. My kids need bathing, homework needs to be done, and yet, in my state, I really don't feel capable of doing such things. Not at all.

I am hoping tomorrow brings a little more relief. I continue to taper just a couple more days and will wait until February to resume a little more. Is this wise? Does it matter? I have been trying to contact those that have kindled to see what their path was. And yet, all of our paths, our bodies are so vastly different.  I keep getting haunted by what a benzo wise doctor said to me " you have a garbage pail nervous system and you don't do well with medications but if you have akathisia , you must stay on this medication and try again another time." I am following my own path, my own body. 

Meanwhile today when I met my friend, I began to talk to her husband who has been on remeron for the last year. He decided a week ago to taper off and is taking his last pill tonight. Boom. One week taper. So far he is fine. Wow, I never knew I would have nervous system envy. But I do. NSE. A new term. Nervous System Envy. Let's see that in the damn 
DSM-5!!!!

http://kellybroganmd.com/benzos/

​This makes me heartsick and scared. So many people, so many lives and families...

http://abcnews.go.com/Health/video/canary-coal-mine-examines-chronic-fatigue-syndrome-20727717


I have to admit, I never believed in chronic fatigue. I thought you should just buck up and pull yourself up by your bootstraps and get on with it. Until I felt it myself after a virus/strep illness two years ago I realized how very real this illness is and how debilitating it can be. My flu like symptoms were the start of this benzo madness. I got strep and a virus and could barely walk or eat. My heartrate shot up then crashed down over and over again during a normal course of antibiotics. Then came a steroid that was like a knock out punch. I haven't been the same since. Then came the benzo to help me recover from the other things and things went from bad to WORSE. WAY WORSE.

 Two years ago, each day I would get up and do my day only to be stricken with a rash at the end of the night, and would have to take to my bed because I felt full on fatigue, flu, swollen glands. One doctor told me to get on with it. I did. But that feeling came and went for months and that is why I turned to benzos infrequently. Then came the reality that all of this might actually be something else. 

 However, even so, many people recover from CFS every day. I believe that like all diseases, each person has a different version and likely a different root cause and a different solution.
Some can be healed through amygdala retraining, some through antivirals, anti-parasitics, you name it. It's real though and the lack of curiosity about these illnesses, lyme and others that affect so many is disheartening and criminal. Just like they turn a blind eye towards the harm that benzos cause, same with these other issues. I also can't help but wonder how many of those afflicted are on a benzo and that it's the cuplrit all along. 

The other common factor when I saw the you tube clip was the lack of curiosity and lack of openness from the doctors. Jennifer Brea had doctors tell her it was conversion disorder and all made up in her head. For some taking a psychogenic approach helps them heal. I believe that 100 percent. But the full blown lack of acknowledgement and dismissal is what turns patients into feeling like they have to do their own research, and become their own doctors and to share within a community of others that get it.

I still feel torn about staying in an 'illness community' because if as Monica Cassini points out (and I agree) that protracted withdrawal is some form of limbic system kindling then it's best to turn our attention elsewhere towards distraction rather than being symptom focused after we are through with the crux of our withdrawal. I don't know... going in circles again with my stinking thinking.....

I think Jennifer Brea's work is important and I am so glad that there will be a documentary documenting this unrecognized issue in the next several years.

​http://www.unrest.film/blog/2016/11/30/feature-documentary-unrest-formerly-known-as-canary-in-a-coalmine-to-receive-its-world-premiere-at-sundance-film-festival-january-2017