I have a movie idea.
Forgive me if I have mentioned this before.
I want to challenge a team of world class doctors.
This will be a year long or longer documentary project.
The project is this--- Gather a team of doctors who don't believe that withdrawal exists.
I want to load them up with benzos. Have them enter a hospital, Get taken off, and put back on several cocktails. Or even stay on and get off multiple times. I want to document their experience. Their ability to handle withdrawal, I want to see...... maybe one out of ten will have an issue, who knows. probably loads of them are taking the pills they dole out anyway.
This isn't an anti-psychiatry site.
However, the ignorance and denial must be confronted in a systematic way. How else to do this but like Super Size me did during his documentary? Real life experience....
The world loves reality TV right?
I want them to live a day in the life like that heroic man who wrote his brilliant article in MIA.
Let's see what happens!!
Check out this amazing link to beautiful photos honoring the human spirit.
Photography has always been a love of mine... maybe I will start taking some photos agaIn.
Check these out. You won't be disappointed
Today what did I do for my recovery?
To be honest, the day didn't start out too good. I mean it was uneventful.
I ended the day listening to music.
These last several months I haven't done that. I have done honestly not much to bring myself joy, I am so shell shocked.
So, I am listening to some spiritual music. I need to get my head out of this war zone, out of this battle. I don't feel meditation is a good thing for me now. Even my meditation teacher told me to stop meditating and to get grounded, feel the earth and walk....
I didn't walk today but I listened. I went grocery shopping. I stayed in a dark room until noon. I find it harder and harder to sleep until around 3am and thank god I am not getting out of bed to take care of my kids in the morning and going to work. No way I could survive it.
Who feels shell shocked? Literally my chest feels shocked. It's disconcerting because I just wish I knew what the hell it was and what it meant.
I read a harrowing story on Mad In America by this true hero who was put on benzos at 15 and again was not acknowledged over and over again about the multiple withdrawals and cold turkey and kindling that was happening. I am truly stunned and appalled. All that happens in mental hospitals it seems is damage. I really think these doctors should be ashamed of themselves. I don't know why they don't get it, why they choose ignorance over listening to their patients. It's criminal. No other word for it. This man and so many others were misled by doctors at an early age. A friend I talked with today has been on a hefty medication cocktail for a decade (including benzos) because early in her twenties she went to a doctor for PMS. What the fuck? Now her brain is so adapted she can't get off these medications, nor can she work steadily from various other illnesses.
I just have to break free. I have to. This wasn't meant to happen like this but I hope there is a purpose and reason.
I was reading the book Medical Medium today who said wake up everyday no matter what and tell yourself... I work for God. I work for God. He said whether you are bagging groceries or folding clothes in a retail store, making coffee in a coffee shop, this will make you feel better.
I will try it tomorrow!
I am not getting religious on anyone but I need to connect back to spirit.
I am feeling hopeless. It's a scary feeling because it's unfamiliar. When I suffered from years of chronic pain I had my mind, I had my body. I could do yoga and walk for miles. I had terrible horrific pain that was constant. But I was still me. This feels different. Maybe it's the same disease-process that has migrated who knows. Whatever it is it's frightening beyond words. It's a terror I haven't known and never thought I would encounter. A terror very few encounter in a lifetime. I didn't expect this visitor this year. I blame myself. But I need to forgive myself, that's the first step... and I am powerless. But I must continue to fight. That's what feels hard. My strength is waning.
Tomorrow I am going to make some calls to friends. It's been hard because I can't explain this to anyone. I am going to ask for people to come over and visit. I am going to get out and walk and cuddle my beautiful children.
My son saw me crying today, rushed in and told me to tell the sickness to go away. "Just do what you tell me to do...fight it and tell it to go away".
He made me a beautiful book that said For Mommy on the cover, with amazingly creative drawings and elaborate stories. He's my little monkey. I need to be here. I just do. There are no two ways about it.
I know Jennifer Leigh talked about being consumed with death and dying during her taper and post cold turkey. I feel similarly. I am not praying for death as she did, but I pray for relief. And I pray for it to end. And I wonder how much my poor poor body and brain can handle. It hurts.
This isn't the most uplifting blog at the moment but I need to keep it real. I can't force positivity at the moment. I have to stay true to what is and keep doing small things that my body and mind allow me to do.
I called my recovery sponsor today. He feels something else is going on too. If one more person says that to me I am going to bust open. I am on the hunt for a neuropsychiatrist but what good are they going to be. They will dismiss that benzo withdrawal exists, they dismiss that lyme is a real thing, they dismiss dismiss dismiss....
I read Kris Kristoferson's story today. He went to the best doctors, all the experts, and in the end when he stopped his medications and started treating his lyme...well... he improved. A lot! He got his goddamn personality back!!!
There is always a way if spirit wants there to be a way....
,This whole day was difficult.
I was listening to a you tube about someone in benzo w/d and they said one of the things they needed to avoid was loud noises, and the sounds of children.
Welcome to my life.
Today while I am grateful my husband is getting to work from home I find it nearly impossible to do the basic tasks of cooking for myself or getting out of bed, not to mention taking care of my children and the constant cleaning and wiping that is required every moment of every day.
Yesterday I had a friend come over and we managed to go for a walk. She is convinced I am allergic to this medication. She herself struggled with sleep, took temazpam for a year and just got off. No issues. Not one.
So I am getting concerned.
I think I genuinely have overlapping issues--possible lyme, definite SIBO and other health and immune problems that I had WAY before this mess. Why do I belabor this? I am trying to solve this puzzle that noone (meaning hired professionals) are interested in solving.
I contacted a doctor in San Francisco who deals with brain injuries and helped a friend of mine recover from a very mysterious brain injury or infection.
I wrote him the basics of my case and he wrote back " If you tested positive with igenex you are positive". Fuck. I was reading an online account of a woman, similar to me, with very infrequent usage who ended up in the ICU with seizures. She ended up tapering off and suffering greatly but discovered (with CDC testing positive) she is POSITIVE for lyme.
So, what's the truth?
I don't know.
Why is it important?
I fear if I don't deal with my underlying health issues I may be one of those horror stories that never get well.
I know it's benzo brain talking to me but there is also truth to it.
Will I ever recover? Even if I have these weird infections etc etc etc will I get well? Is now the right time to come off this medication?
I am petrified.
What I dealt with two mos ago wasn't like ohhh some looping thoughts and morning anxiety. No. It was something that I can barely speak of. So why is everyone in my life asking me why I am so hesitant to restart my journey back down to zero? Because that was quite simply the most horrifying two mos of my entire life. And again, post jump I would expect it but still on medication? I was taken aback. Something else feels wrong. Maybe we all think that way.
I am trying not to build this case but I don't want to be an idiot either about what clues are there that I have ignored YEAR after YEAR. The air hunger, the pain in my chest (dating back ten years), the stomach distress, the weight loss despite eating like a pig, consistently low lymphocytes, the infections, catching every cold and virus out there, the headaches, the lack of sleep, shortness of breath, heart palpitations, on and on...
I don't know.
I told my husband if something happens to me, autopsy the shit out of my brain. I want the fucking truth.
I want to stop thinking, talking symptoms. I want to be free.
I want to bounce out of bed, go to my favorite yoga class, put in a nice day at work, pick my kids up, have the energy to pick them up, wrangle them and take them for dinner or ice cream or to a play date. I want to feel like I have energy again, Not chemical energy, Medicine masking what is underneath but true, genuine energy like I have had before. Not so long ago. The ability to yawn and get naturally tired and go into bed cozy and warm.
I want to go rollerblading, ice skating, to the beach, on hikes, on dates, to the movies, in malls, I want to shop with pleasure again and talk about things other than THIS.
I want to be free and put on my makeup and carefully choose my jewelry and enjoy the mixing and matching of my outfits. I want to try on shoes and do my toenails and get my hair done and enjoy a massage or a spa. I want these things. I don't want perfection. I want to be in life.
I WANT TO BE IN LIFE.
Someone on BB interestingly admitted that he/she didn't know who they would be without this BB community. After being a part of it for so long, who were they in fact outside of the benzo community? How would they re-integrate after being a part of it for so long? Would they feel a void? Do they need to keep thinking, talking and reliving symptoms to feel a part of something. As cruel and horrid as this is, he/she admitted it gave him/her a sense of belonging and without it he/she would have no purpose.
This was honest.
I don't know that I fully relate because I liked my life. Though I was burnt out at work and felt trapped in the day to day, part of the burn out was that I was not feeling well for so long and hadn't slept more than four hours per night for years. It was wearing on me. If I had the energy I would take courses, I would go on trips, movies on and on. One year ago, during my first fast taper when my body was still stronger I could do more. I felt I was going to win this game. I mean there was no reason for me to think I wouldn't. I NEVER THOUGHT THIS WOULD HAPPEN TO ME. I fully expected to get off this pill in six weeks. Done. I had NO idea what I was in store for.
So, I wasn't expecting the crash that happened exactly one year ago today. I should have kept going with the crash. I don't feel a longer taper helped me. Not at all. Once I fried for 4 weeks and my previous frying with steroids the game was over. I should have just ridden it out and tried to heal from there. I should have been warned. Someone should have understood I shocked my CNS so many times and too warn me to be careful. We all had no warnings. When I read other stories of people put on obscene amounts I am just aghast. I don't trust the hospital. I don't trust John Hopkins or Mayo or any of these 'reputable' places and doctors from Harvard or Stanford. I called one 'reputable' doctor who simply told me I was 'trying to control the process and there was nothing wrong with my staying on the benzo for the rest of my life'. Yes, he certainly believed this to be true. I should stay on this neurotoxin for the rest of my life. GREAT. How can I trust a medical professional again honestly with this level of stupidity??? We are on our own, plain and simple.
I think this taper actually harmed my body MUCH MORE. I know that is unpopular, but a reinstatement doesn't often work. At least it did not for me. One doctor warned me I'd be fucked at the end of this taper, and he was the ONLY one that was right. I should have just gotten off, even if that meant closing my business right away and getting on adjunct meds. I just couldn't think straight as many of us can't when we are in this place. And I couldn't accept that this was happening. It just didn't make sense. It just didn't and it still doesn't since I used so infrequently and my symptoms were so severe.
Anyway, my life has been on hold. Completely. And yet I "look" normal except two mos ago I looked anything but. I look like shit actually. I was normally quite vain but now live in yoga pants and sweatshirts on days that I leave the house.
I don't know how to explain the severity of my symptoms. The severity of this chest pain, nerve pain and frying feeling and my akathisia. It's BAD. WAY WORSE then last year.
I can't wait to solve this puzzle.
To be that person I talked about. It felt good just writing about her and all the fun things she would do-----Let this nightmare lift already.
Today when the overhwhelm was too much but I was way too tired to walk I just got in my car and DROVE. I drove for nearly two hours. I made a wrong turn somewhere and ended up on the freeway in traffic. So much for a relaxing drive. But I had to get out and for restlessness it is kind of the next best thing to walking. I am sitting here at 1am writing with my coat still on. I'm a mess, what can I say.
Tomorrow is a new day. Tomorrow is a brand new day. Set some structure to your day and ask yourself ---What can I do for my recovery today???
Today I drove. I drove and drove. And ate a hamburger.
A friend of mine and a counselor and I talked today. He is wise. He knows me for a long time.
When he listened to me ramp up as I told my story he commented that he didn't feel it was helpful for me to continue to tell my story. As I told him the story culminating into the point where I am now--jobless, almost homebound and bruised physically and mentally he asked me this, "What percent of your thoughts are positive"
This experience has been SO traumatizing. It's been hard. If anyone has read my previous posts in June, July and August I was all 'positive". I thought I had turned a corner. I was fighting. Watching comedy. Listening to music. Going to the beach. But in October when I got slammed SO hard I haven't been able to regain my ground.
It's hard to be positive when akathisia is a symptom you battle.
This isn't just about feeling sick.
I know what that feels like. I can live with that.
But my friend was right.
I want to call up some wonderful memories... childhood memories, recent memories, really bask in the feel good chemicals of when you felt good good.
Can you join me?
A great blog that is helpful, touching and informative.
It is nice to see a male voice and presence writing about this!
There is a lot of material on here so it will take a while to get through but what I have read so far is very helpful.
I walked through target the other day scrambling around looking for last minute gifts for my children and I hate to say this but I feel jealous of all the people calmly browsing through the aisles, sifting through the cards, trying on makeup. All I feel is prickling. Panic.
I used to LOVE shopping. I could shop until I dropped. Just browsing was fun. I even joked that I loved shopping so much even food shopping counted. When will I be me?
My CNS feels so bruised guys. I know yours might too. Something feels WRONG though.
Severe shock and burning.
I did something stupid. I am not sure I regret it but it was a low moment.
I left a nasty voicemail on the doctor's line who prescribed me these meds.
I know he didn't intend to harm me.
But why the F?$%^ didn't he properly WARN me. I know I am not special. We are all in this. So very few of us knew about the dangers of dependence, the need to taper, the fact that these drugs can harm and burn your CNS in as little as a month or less.
I didn't use daily.
I didn't use high doses.
I didn't even use for anxiety.
I JUST WANTED TO SLEEP.
So.. I know I am no unique butterfly and I need to put my resentment to bed.
It was hard. Close to the holidays, and with the realization that I have lost so much.
This time last year I reinstated. I thought I was doing the right thing. I was pacing like crazy but I was in MUCH better shape mentally, and physically then I am now. I was stronger. I had no nerve pain. I did have the feeling of shock in my chest but now it is far far worse.
Is this just benzos?
I wasn't well before the benzo, I know I keep saying that because when I read success stories I worry... will i be that 6 % that doesn't heal according to Ashton?
I didn't need to know that percentage. It seems quite high actually.
Then I was reading a blog called MERRYJOYOUSANDFREE by a man who went to hell and back getting off psychotropic meds. It is a moving and touching blog. Informative too.
There is a lot on there and I will post the link.
I read a success story.... a woman said that one KEY to her recovery was basically training the body how to relax naturally again. Three years prior this woman didn't know how to take a shower. That's how injured she was. And now she said she is partner dancing! She can pick up new steps and work on her routine. She said she still suffers from w/d symptoms but considers herself HEALED. VERY GOOD ADVICE
We must: Train our brains to relax naturally again
It's hard. I went to a spiritual counselor. She was lovely. She was aghast when she heard my story. When I told her about my kundalini experience several months prior she said it was like a lifeline. She said "spirit is with you".
I hope so. I pray so.
I don't want to be permanently injured. or my immune system battered.
Anticipating the worst primes the nervous system. It's a good idea to stay off the forums but somehow they calm me in a gross kind of way. I am reading success stories tonight.
One interesting one talked about a neurologist in California who used abilify (like the worst drug ever I have heard) in minute doses to rewire the nervous system. Though this man had a hideous withdrawal and reaction to the drug, within two weeks after a year of hell his receptors kind of snapped back to normal and he felt good again.
What works for one person will not work for another.
Learning to train the brain to relax again naturally. Through meditation.
I can no longer sit to meditate. I just don't feel well enough.. so I CAN lie down and do guided meditations for sleep. Commit to 20 minutes twice daily. I was doing this until I got slammed and everything in my routine has gone away. It is SUPER hard with two little kids I tell you...
A smart doctor said---follow the ones that have gotten out of this and healed. Follow them. Read success stories ONLY.
If you are walking on a tightrope and you look down you will fall.
If you look ahead you can make it to the other side.
Today marks the day when I am dropping ALL resentment. No sense in ripping apart that doctor. He knows my pain and he didn't intent to harm me but he did. The harm comes at the lack of acknowledgement that this problem exists. The lack of acknowlegement of iatrogenic dependence and injury. Unless you yourself have gone through this or know someone personally that has, it is too difficult to believe. It's like children or adult children that try to express to their parents what hurt them in their childhood. Instead of saying, "Yes, I understand your pain, I understand your hurt" they defend and the wound just gets bigger and the trust is lost.
Acknowledge the injury.
This doctor wrote me a letter saying that we discussed using low dose benzos and agreed together? Say what? That is not what happened. I didn't know what I was agreeing to. I said I was scared and he said it was no big deal. He never mentioned the word dependence. He never mentioned the word taper. He said it was perfectly reasonable and safe. So, if we as consumers agree with the doctor, we are to blame??? No resentment. No resentment. BREATHE.
Believe you will get well.
The spiritual counselor said to me--- just say to yourself " I don't know HOW I will survive this but I KNOW I WILL SURVIVE"
Look, even if I have a messed up immune system which I know I do, I have to pray that getting off this medication won't do permanent damage. I have that disadvantage going into this.
I also know that despite my messed up immune system I used to hike miles, laugh, play, sit still, yes, I had weird physical issues and reaction to meds and foods and lots of stuff I won't even discuss but my life was FULL. It was OK. It wasn't perfect.
I will take that back and have a renewed joy of life.
So many that have come through this are so BLISSED out just to sit still. In peace in body and mind. The one's I think that do best are the ones that stay out of doctor's offices unless absolutely medically necessary.
For now I just want to be present or fake prescence for my little angels. They so desperately need me. They put on big PJ's the other night and pretended to be SUPER BABIES.
I miss being able to be a mother, and a wife and a person in the world outside of this mess. I miss the simple things in life so badly.
As Prescribed--posting again. Please help support this movie and Holly Hardman's hard necessary work.
An interesting story about a high functioning woman suddenly plunged into mental illness as a result of toxic reactions to antidepressants. Had she been living in the United States I fear that her saga would have continued on far far longer. It is truly amazing to me that doctors do not realize or understand that akathesia is a toxic side effect of many medications and withdrawal and rather than piling more and more drugs on top of one another why not simply remove the offending meds? Not as simple as it seems once the body has become accostomed. In benzo withdrawal sadly this is not so simple.
I just wonder why doctor's wouldn't THINK. Here was a high functioning mother of two, a successful woman with a career who had no prior history of such behavior? What, she suddenly became psychotic or schizophrenic at a late age? Give me a break.
I agree with what she talks about.
My father too had a severe reaction to both prozac and being yanked off of valium. He was a raving lunatic (So I am told, I was not living with him at the time) for one year--suicidal and homocidal. His wife at the time did something SMART. She kept him OUT of the hospital.
Within a year he recovered. When he later developed cancer he said he would by far prefer cancer to that dreaded year.
Sure, my father had his problems, his imbalances but he was NOT psychotic. He later would have episodes that I now recognize might have been 'waves'. He lived life and was happy enjoying life after this episode. He was physically healthy however with no medical issues. That helped I imagine. Also the fact that he took no other meds, and well, he was just LUCKY that it remitted within a year. He never EVER talked about this episode so I don't know much about it as I had only HEARD about it through a family member. I think there are some people that are genetically more sensitive to meds and the solution is less or NO meds rather than piling more and more on.
Judging from what I am encountering now I can only speculate that he had akathesia. It is known as the suicide/homocide symptom because the inner restlessness and terror and agony and burning is so great it drives normal healthy otherwise mental well people to the brink.People throwing themselves suddenly in front of trains and off bridges. Akathesia is a reaction to a medication or a withdrawal and NOT a mental illness within itself.
If doctors could ask these simple questions :
" Do you feel restless?"
" Are you feeling burning or terror?"
" Are you having a hard time sitting still or feeling rest?"
Maybe they could get to the bottom of it if they investigated the pacing and the restlessness and agitation just a bit further. THINK!!!
When this first happened to me in cold turkey I was accused of having an "agitated depression" Then having "psychotic features". Why? Because there was a terrible whooshing up and down in my legs and twitching from head to toe and an inner restlessness that made me think I had a dreaded neurological disease. I kept insisting that I have never EVER felt depressed (except one time when I took accutane) and sure, when I had chronic pain I was depressed about the pain but not depressed about life. I LOVE life. I do and always have. Despite the hardships, despite my neurosis, I LOVE life. Yet, I wasn't being heard. No... I had an agitated depression now. And I fear if I went to a hospital pacing around they would have labeled me manic (and yet I had NO feelings of euphoria whatsoever I was in AGONY). WAKE UPPPPPP!!!!!!!
And even before this, hints of akathesia to come happened after the steroid shot. I tried zoloft just 3 days of it...whoooosh. My CNS almost blew up and restlessness happened. Then again one day of remeron and one day of elavil. I gave up trying until months later when the protracted sx had started and I had NO idea what was wrong with me. I wish I could turn back the clock. And that's why I am writing this. So that if anyone has these familiar symptoms or feelings that can go to their doctor armed with a word that can help--AKATHESIA. And the trick of recovery from this seems to be TIME. Just the miracle of time.
I also agree that while many say depression or suicide is 'genetic' how many of these people were actually on medications at the time of their suicidality? Were they really inherently suicidal? I think it's the toxic interactions of all the meds. That's what I think.
I am certain my friend who killed herself years ago did so because of the side effects of these medications. Certain of it. And so many others. This movie looks like a hard one to watch but I am looking forward to it.
I am not saying medications don't have their place. They do. But not how they are prescribed in this day and age. Not here in the United States at least. I have been horrified by what I have seen many people go through.
I lost it the other day and called my doctor to check on my social security application. The man that, well... DID THIS. Didn't warn, gave me faulty,dangerous advice. And for once I did something I normally do not do. I took the doctor's advice. Why? Because he had good bedside manner. That's why. Dumb. I know.
When his secretary asked what this was regarding instead of answering as I intended to " I am checking on my social security application" I blurted out " This is regarding how he fucked up my life with his horrid medical advice". Stunned, she asked again "Excuse me".. so I blurted it out once more with even MORE VIGOR. Fuck you.
I am so scared. So mad. So distant from my life, my job, my family, everything that matters to me. I have to believe there is a greater purpose. I keep saying that. Maybe there isn't one at all. I worked for 16 years through graduate school, building a business, building networks, networking incessantly, only to be poof gone. Just like that. Sure, I can start over. Many people do. But more importantly can I regain my health? I told my mother I would scrub floors if I could regain my health. I would.
It is interesting to me that TWO movies regarding this issue are coming out shortly--The Pill That Steals Lives AND As Prescribed. Both by women who have been through it.
The author of the book is lucky in a sense because after a year long battle ALL of her symptoms went away after THREE WEEKS. I have a fantasy of cold turkeying everything and being peachy in 3 wks.
Sadly we know benzos DO not work that way. Do NOT cold turkey! That isn't advised. but one can dream. For this nightmare to be over in just 3 wks. Oh... what a dream.
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.