My last week has been consumed by akathisia and terror.
After two relentless days of terror and acid covering my nerves, running to the bathroom ten times, I am SPENT.
Two days of terror were followed by a day of depression and flu like feelings and nausea.
Isn't it sad when THAT becomes a GOOD day?
I can fight through fatigue but I can't fight through terror.
Today I have a little bit of both, but what I struggle with so intensely is the ability to DO anything.
I can't even get to the bank.
I did go to an appointment today to help clear my cyst ridden skin---another lovely side effect of withdrawal or chronic stress response.
I am really scared.
As much as people report they are healing blah blah I want to know how this level of damage heals. It's painful physically.
So, in my effort to get more support I stupidly went to a local neurologist as one of the specialists here asked me to do.
We sat there in his office going around and around and around.
" If I had a gun to my head, I'd say your problems are psychological"
"Gabapentin is like an aspirin--it's nothing! "
" I have never seen this before"
" I don't believe you"
" Life is not about suffering, I really hope you feel better"
"I'm not closed minded, I'm objective"
"Your problems are psychosomatic"
If only I could transport these doctors inside my body for five minutes.
My head pressure is so bad it feels dangerous.
My insides are sizzling.
But.... it's in my head.
Where do we turn with responses like these?
I am battling so much pain but I smile through it--why? how? I don't know but I try to ACT AS IF.
I feel like giving up right now but I know I have to keep going and get to the other side.
I feel like I'm living in an alternate universe. Maybe some version of hell, though I don't believe in that.
My symptoms go in cycles and today I practically woke up crying. It's the heavy, depression day which I welcome more than the akathisia terror filled day. These symptoms and my physical ones alternate: one day depression, one day terror. On and on with no reprieve YET.
I'm not sure why I feel so doomed, but I do.
I don't feel others are doomed oddly, but I do feel I am.
I feel my insides and I don't know how this is repaired. But I must trust voices like Baylissa's that tell me we do heal. This does come to an end.
I'm about 40 something days off benzos.
I woke up nauseas and crying and a depressed mess.
My kids are going to a party and I didn't even get an invite, my husband did.
I feel shut out, abandoned and in turn I hide away. I know my illness is invisible but I just don't understand how people can forget you, not call or check in or notice that something is wrong. I just would never treat others, especially those that are sick in this way.
He's off with the kids running around like a normal person. Doing banal things I only WISH I had the pleasure of doing: shopping for a birthday gift, running the kids to a haircut, running errands then a party.
I am finding it hard to leave the house.
It fills me with terror.
I don't want to leave, I feel in fact that I CANNOT leave.
I have an appointment to go to in an hour, so I know I must go out today.
But I feel so weepy, terrified. Chemical terror. Just unwell.
Baylissa recently wrote a post that said we are in our child ego state during this process. We are vulnerable, regressed even, to a state of helplessness and fear and dread. Or at least I am. Let me speak for myself.
She was writing brilliantly at the need to be very mindful at what you suggest, what you write or post because people are so very vulnerable in the community. What works for one, may not work for another. For example, I have found doing magnesium chloride soaks (taken from the magnesium advocacy group) very helpful for my myoclonus. Now, I realize that magnesium can be a HUGE trigger for others, and different forms of magnesium are in fact a trigger for me.
I'm sorry if these posts have been off putting or triggering. I am writing for myself however, and I need to tell my truth. I don't feel I can talk to anyone, even my therapist in this stream of consciousness kind of way. I think we all need to tell our truths, we all need to have someone bear witness to it, even if it's out in cyberspace.
I'm not triggered by much these days anymore. I've heard and seen so many horror stories, and uplifting ones too, I just don't know. I know how bad it can be and how draining this process is for caregivers as well as the sufferers.
So, back to how I'm missing my life...
I feel a blackness and a down that I have never felt.
I feel too scared to leave the house, though I must.
I want to see my life back again and it feels so so far away. I can only cling to some reprieve and some positive moments that I encounter along the way.
This is the ultimate experience in being present.
No past, no future. Just right now.
To the outside world it doesn't look like I'm doing much.
But on the inside I can tell you each moment is a fight. I mean a FIGHT.
I feel so helpless to help myself because the last two days I walked for about an hour and felt near seizure at night. Head pressure so so bad, head burning, Please FUCK what the hell is this. My symptoms are pretty terrifying and they don't feel on the normal spectrum of this syndrome.
It's gone on for over a year like this, in this level of intensity and I'm just wondering how much more I can do.
I feel left out of my life, and I am not even able to share with anyone but this page how lonely and disconnected I feel.
I just want it to end, and I want it to end well for all of us.
It's 12:30am and I'm wired but tired as usual. I get my second wind at night- a little reprieve though I really wouldn't even call it that.
I just finished listening to a Podcast called Sincerely X.
It's an anonymous version of a Ted Talk, where people get to share their much needed ideas and stories in a confidential manner.
The one I listened to today was about a Doctor whose clinical burnout likely caused the death of a patient indirectly.
It got me thinking about all the doctors that prescribed this poison and many other poisons so cavalierly. It got me thinking more and more about how many of the doctors treated us after we came back for help. They wanted us to be wrong. They needed us to be the rare patient. They insisted that "they have never seen this before" because it protected them from potentially losing everything, or admitting to themselves and another that they fucked up. They fucked up BAD.
This doctor was brave to speak out about her own clinical burnout and that she stopped seeing patients as humans but rather began to see them as diseases, lab reports and lab values. She stopped caring altogether and that this is when a doctor is the most dangerous-when they stop caring.
She revealed that this is an extremely common problem among not only doctors, but therapists, and all people in the healing arts. No surprise there. I know for myself I was the kind of worker that answered emails late at night, texts weren't off limits, paperwork that needed to be done got done, problems that needed to be solved asap were solved. I worked late nights and after hours even when I had small children. I went back to work after 6 weeks post partum. Believe me, I didn't want to. But I was the one over working and at least from my perspective my husband was under working.
Tonight, I have the case of the shoulda woulda coulda's. Or maybe this is my unlucky fate.
If the doctor who first called in CIPRO over the phone without even examining me had taken the time to not prescribe a black box warning heavy duty antibiotic for a suspected UTI, I would not be here.
If she had taken the time to talk with me, fully comprehend my sensitive history and warn me that you can NEVER in your lifetime take a floraquinalone if you have previously been on a benzo, I would not be here.
If a doctor hadn't decided to give me a steroid shot needlessly after a case of strep, or understood how cipro and a steroid interact in a toxic manner I would not be here.
My life in shambles. My kids without a mother. A needless loss of health and wellness.
I would not be here if an acupuncturist MD I trusted would not have pushed a benzo on me after these other medication injuries.
If he had taken the time to work with me naturally and not insist I needed a pill to sleep, I would not be here.
If I had done more research, which is so like me to do, I would not be here.
If I would have followed my advice to never trust a doctor based on my PTSD experience with a 10 year medical mystery (Interstitial Cystitis) I would not be here.
If I hadn't been lunged at and bitten by a dog while I was pacing in terror and akathisia up and down a mountain and rushed to get a tetanus shot I would not be here.
The assault upon assault of my gaba system scares the fuck out of me.
I have a case of the woulda shoulda coulda's. I want my life and health back.
I want to feel less disabled.
I did one thing today-- I made it to the grocery store and the pharmacy. Because I HAD to.
I listened to a pod cast.
Since when is this a victory?
How will we get more doctors to listen, wake up and start caring again.
No one likes being bashed and I don't blame them. But simply saying, " I'm sorry" or " I don't know what is going on but I'm going to be right here and I'm not going to give up on you" matters. It matters a lot.
I can't believe my life guys. I'm a broken record.
Today my throat feels as if its covered in acid.
My nerves in my chest burn so badly, I actually feel as though I'm being stabbed with large knives. The large knives are being twisted around in circles by some fucking sadist called benzodiazepine withdrawal syndrome.
I nearly jumped out of my chair twice today when the doorbell rang. Just having a guy come and put in a filter in my air purifier felt like a JOB. A JOB?!! Yes. Opening the door and letting someone in felt like a job.
I have been told that by day 40 all of the benzo should be out of my system. Now that doesn't account for the crap that is stored in my liver, my tissue, my bone marrow etc wherever the hell else it is lodged AND that does nothing yet for my gaba receptors that are jacked up.
I'm still on other meds assisting me right now. Don't judge. I had no choice. I chose life over death or stroke from a heart attack or seizure.
My symptoms are intense and my primary symptom is akathisia (covered by the gabapentin).
I have underlying medical issues that may be complicating my picture.
I am highly kindled (meaning I was on/off pills in my twenties as I never used them daily but was given them for interstitial cystitis pain.)
I was FLOXED by an antibiotic called CIPRO ( I believe this is why this injury is so bad now )
I reacted to both a steroid and amoxicillan.
I only write all of this because I don't want anyone scared by my story.
I was never on a high dose, but ironically, we are often the ones that have the most issues.
I initially only used ativan 3 times per week at .5mg for 3 mos.
So only because you've been on for 15 years at a higher dose, please don't be scared. I have all the above factors going against me and a nervous system that as Dr Shipko said to me is a "garbage pail nervous system"
He said I was just one of the unlucky ones that never responded well to meds and its a genetic thing.
Anyway, just thought I'd share my background a bit to reassure anyone who may be freaked out about my symptoms and my lack of functionality.
You can do this---if you choose to.
PMS big time today. This whole week actually. I am not the only woman in withdrawal that notices a significant spike in symptoms right before their period. More accurately, I get thrown into a pile of steaming shit and get burned alive in a pit of hell just as I'm about to bleed.
Sorry guys if this is off putting. Be grateful you don't deal with these hormonal imbalances. Before benzo withdrawal I never had PMS. I couldn't relate to women sobbing and raging before their period. I might be in denial however, so you'd have to ask my partners. In the book called Eating in the Light of the Moon there is a piece about PMS that says it is when the truth emerges. It is when women's 'nice' people pleasing exterior crumbles to reveal some truths they have had difficulty sharing. But in benzo withdrawal, it's PMS on crack.
It's that plus no feel good chemicals in the brain.
Today I feel too scared to leave the house. I will leave, I'm just saying, I dont WANT to leave. I have to see my kids. I am also afraid to see them because I'm afraid of the agitation and chemical terror that I feel. I just can't stand this one more minute.
Make this go away. Someone. Come meet me with your magic wand and wave this suffering away for all of us. Yes, for many, doctor's promised that the magic want would be this deadly drug. I can't think of anything deadlier than a benzodiazepine. I still find the denial around this astounding.
Some creepy stuff has been happening on facebook.
An outspoken anti benzo advocate had their entire page shut down. Another man that posts anti pharma information had his messaging blocked. This has happened to many activists trying to provide psycho education and awareness
A CDC doctor was found dead in a river with suspicions that he was going to reveal how the recent flu shot was responsible for the deadly outbreak that we have just had. My son had the shot and developed something called Viral myositis from it. He woke up one morning and couldn't walk. Thankfully, it just took a lot of fluids to flush this out of his system.
The world has always been a scary place. In benzo withdrawal it feels that much scarier. Everything is heightened. Whatever trauma, impulsivity issues, childhood issues, relational issues I have had before are magnified by 10,000.
Every nerve is awake.
Let's use this pain and suffering towards our transformation not our demise.
I refuse to give up but I'm getting so tired.
I mean, I wish I was TIRED. Let's say, I'm getting weary and ragged.
Wishing everyone well today.
Today I woke up in a jumble.
I felt drugged and confused. Completely incapable of completing any task.
I went to my computer to start to write. I figure it will clear this jumble in my mind and push me to do the next thing I'm supposed to do.
I have a doctor's appointment about an hour away. This commitment feels like too much to handle. I will be there, I'm just reporting on how I feel and marveling at how distant this behavior and thinking is from my "normal" self.
I have to call the bank.
I have to find my wifi password.
I have to take out my garbage.
I have to take a shower.
I have to dust my room.
All of this feels like too much.
I feel weighted down today by an elephant on my chest.
With this I also have prickling needles covering my nerves all over.
I want to go back to sleep.
I want to stay asleep.
I want to wake up when this is over.
Writing helps the looping in my mind. I apologize if it's monotonous. If it's banal. This writing is for me and no one else. It's just an online journal to help me heal. To help vomit out the poison in my mind and to stay connected with others that may be thinking, feeling, experiencing similar things to me.
Things I will be doing to help myself today:
Taking a shower
Going on a walk by the beach
Eating regularly and drinking a lot of water
That's all folks. Take care of your body,mind today in the best way you know how.
By the way, I recently heard a story of a doctor (a psychiatrist no less) who ended up in an assisted living facility due to sickness and supposedly alcohol. He had told a friend he was unable to participate in any kind of group therapy. When my friend told me about this man who he had grown up with I said there has got to be more to this story. There have to be pills involved. Well, it turns out I'm right--benzos, benzos, benzos.
How does a doctor, lawyer,therapist, mother, father, construction worker, cop, coach, writer etc etc end up homeless or on the streets?
PILLS PILLS PILLS
The silent deadly epidemic.
I'm calling all lawyers, activists, doctors, journalists to rise up and take this issue and try to make a difference-one voice at a time.
Post on facebook
Do a podcast
Write a blog
Be a patient advocate
Listen to your patients
Support your fellow sufferers one person at a time
It's time this harm stops and we can each make a difference slowly until we are believed, our stories are told and preventative measures such as informed consent becomes standard care.
If you are a lawyer, please help us find justice and compensation for YEARS of our lives lost.
I was in the height of my career and earning potential. I literally have NOTHING now and no means of making anything.
The doctor, Dr Steven Tan that pushed this medication on me knew nothing of benzodiazepine withdrawal nor did he warn me of any consequences or methods of tapering or withdrawal. He never informed me at all on how to use this medication safely (by never taking it) and told me it was perfectly safe and that I wasn't an addict.
This is my 4th try getting off this toxic poison and I am exactly 30 days off. My life is completely changed.
I have not been able to work for over a year, and I have not been able to parent my children or take care of myself.
I was denied for disability twice.
I have no way of accessing unemployment or disability as I worked for myself.
I would like to see these doctors educated and providing compensation for our losses.
So, all I can do is write and write until someone somewhere listens and time heals.
I have several more years of tapering subsequent medications. I am not sure if I will ever be able to be medication free as my akathisia is my primary debilitating symptom that renders me entirely disabled and tortured.
Calling all lawyers, activists and victims to work together to put an end to this suffering and the needless drugging of our communities.
I had a burst of false energy these last couple of days. Anger and fear triggered this burst as usual.
I need a job.
I need one now.
And yet I feel utterly incabable of doing very much some days, and other days I feel I could conquer the world.
I'm looking for some online source of income that will help me pay for the apartment that I am currently in.
I'm looking for things sane and insane that will make me some money in the comfort of my own home.
What the hell is that.
It's 5:30pm and all this false energy I used up the last couple of days has caught up with me.
My head pressure feels so bad and I feel all the nerves in my body stabbing me. Literally stabbing me.
Could you stay calm if you were stabbed by a million ice picks?
Well, I fucking can't.
But I haven't been able to leave the house. I haven't been able to really even talk. So, no, I'm really not up to working. I know I LOOK semi normal. Fuck you again outsiders for judging me. For disbelieving me. For not trusting that I am in this kind of pain and it is a torture few will encounter in life.
I had a dream last night. In it I was in the depths of withdrawal. My body was asking my soul, WHY ?? Why did you choose this path of suffering? For what purpose? For what gain?
A man posted in my benzo fb group that we have to hide and keep this tragedy secret and quiet because of the stigma of it.
I will not be silenced anymore, and yet I'm way too sick to fight.
Many of us are.
I want to unzip my body and get a new one.
I want a new model.
I want to inhabit a different body. A different mind, I want relief. I want relief so badly.
Generosity goes a long way in benzo withdrawal.
Many people around us ask: What can I do for you?
Instead of really searching, thinking, many scurry away in fear. They feel helpless to our immense suffering, They are possibly even disgusted by it.
I've mastered the art of faking it. But if you really pay attention, if you really look into my eyes, you'll see what I'm covering up. It's there in plain sight, it just depends on if those around you are paying attention or not.
I fake my way through life. Then when I get in my car, close the doors, the breakdown comes. The panic comes. The relentless OCD thoughts appear.
How the hell am I going to make it out of this alive?
For me, this panic comes because of the sheer intensity and relentlessness of my physical symptoms.
So how can you be generous to someone in benzodiazepine withdrawal?
1. Don't wait until someone ASKS for help. Just perform random acts of kindness.
It is very humiliating to be this disabled for so long. I am speaking for myself. I was always independent. I made my own money, paid my way through school, worked several jobs at once, owned a successful business, parented, traveled the world etc. It is horrible asking for help. I hate it. I hate any kind of attention like that. This is the ultimate lesson in receiving....
Words of advice: Just DO for the person, Do what you can: cook a meal, get them flowers, visit them or take them on a drive, sit and rub their feet or try to watch a show together, give them a place to stay, write them a check if you have the money to spare, or just LISTEN with no judgement, no expectation.
2. Don't create more stress in this person's life. I understand their behavior might be erratic, it might be unkind, it might seem selfish, or withdrawn. For once, don't make it about YOU. They have zero reserves. I mean ZERO. This is a brain injury. They are disabled. Just make it about them, and take space when and if you are getting resentful. Cut them some slack.
3. You might need to pick up the slack with parenting, with the finances, with basic tasks of daily living like paying bills, running a household, driving them to appointments, helping them collect their medical records. I know this is a lot. Just pick one thing that you're good at and offer to help your benzo injured friend with this. If you're a great organizer, come organize their kitchen or bedroom. If you're great at dealing with insurance companies offer to help with that. Use your skills any way you can to advocate for your benzo injured friend.
4. Provide calming physical touch. Offer to have a reiki practitioner or massage therapist come to their house if they are bed bound and housebound. Just simply hold their hand. Keep them company and give them much needed hugs,care and understanding.
5. Be curious. Ask questions. Not in an interrogative way but in a curious, open way. At this point I sound like a conspiracy theorist when it comes to Big Pharma and benzodiazapines and believe me, I am not. But it is really hard when you know what you are dealing with is REAL and it is being denied by the people around you or if they are too afraid to do research, watch you tube videos and understand this injury a little better. I get it, People have their own life. But it really doesn't take that much to be generous. No one is looking for grand gestures, just small acts of kindness go A LONG LONG way.
For example, a fellow therapist that I don't even know that well commented on my benzo fb posts. He said he had some ideas he wanted to share with me. I was really touched that he wanted to share some thoughts and referrals with me.
That is really all it takes folks, just a little attention goes such a long long way.
Remember also how important it is to continue to fight for yourself and do small self care tasks daily to keep your mind and body sharp. Don't give up on hygeine, taking out your trash, cleaning your house if and when you can. All of this can help one feel better to be in an organized space. Can you detect any OCD here? LOL. Do as much or as little as you can and pace yourself.
The other day I was in my home and my husband who has been taking on the brunt of the parenting and working at the moment was sick with a cold. I stupidly went on a manic cleaning binge and vacuumed and wiped down the entire house. It's this painful feeling of false energy that takes over and at the end of it my entire body was left vibrating and my head pressure was so bad I'm about ready to go to the ER. I prayed for sleep, and tried to calm my CNS for the rest of the evening. The next day I was too sick to see my children. When will I learn?!!
I was never one to pace myself. I over did EVERYTHING. I over worked, I worked out incessantly, I saw too many patients, slept too little, didn't see my children enough, shopped too much and had a life that was totally out of balance.
Now life is forcing me to slow down whether I like it or not.
And I don't like it one bit.
ed Round and round we go on the merry go round of symptoms.
I woke today with despair as my head felt like it was plugged into an electrical socket and I just wondered--how is my body going to heal from this?
Haunting advice and words from doctors echoed in my mind over and over again like a tape recorder on repeat.
My OCD which was mild before this madness is now pretty extreme.
I have a thought, a fear and I have to catch it before it grows into a large tumor in my mind.
"What if I never heal"
"What if I'm one of the unlucky ones"
"What if there's something else wrong"
"There IS something else wrong"
"What if this kills me"
" What if there was wine in that dish I ate at dinner tonight?"
"What if that piece of chocolate sends me into a wave?"
" What if I catch my kid's cold and I need antibiotics?"
"What if I really run out of money and become homeless?"
"What if I lose everything?"
"How am I ever going to work again?"
"What if the akathisia never goes away?"
And this doesn't include the 100,000 other fears, worries, thoughts that loop and loop like an endless sickening merry go round.
Here I am filling easter eggs for my kids while everyone in the house is sleeping. I feel amped like I'm on speed, it hurts but I keep going, I'm really not sure how.
Tips if you have a partner in benzo withdrawal:
I recommend skin to skin contact---hugging, lying together, holding hands, getting back rubs and foot rubs.
Paint your nails if you can
Color your own hair if you can
Take a shower as much as you can
If they have obsessive thoughts, give them one reassurance and then help them distract.
COMEDY COMEDY COMEDY
I've been watching Bill Burr and Chris Rock and Dave Chapelle--so many fantastic specials on if you can watch some TV, do.
Limit phone usage at night ( I am not good at this) and focus on comedy, dabbing essential oils on your feet and wrists and drinking some mint tea.
Limit symptom talk to a small amount of time per day, then move on.
Words with Friends, puzzles, coloring books, knitting, painting, writing,...keep your hands and mind busy, away from this pain IF you can.
If you're in full blown akathisia or acute forget the above its 911 emergency--get everyone and anyone you feel safe with to be by your side cooking, cleaning, helping and holding you.
You're doing your best and this is temporary, keep going my friends.....
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.