Falling Through the Cracks

Merry Citoli
35
1150

I am an award-winning singer/songwriter with a number one record to my credit. I also owned several small businesses and founded a 501c3 non-profit for women’s health. I ate healthy, swam and cycled every day and had a very active lifestyle. This was before benzos came into my life. Since withdrawing from benzodiazepines five months ago, I still cannot play one of my own compositions all the way through without a mistake.

My benzodiazepine journey began in 1999. I was in the rat race like most Americans, working long hours and recovering from the death of my mother. In July I woke up in the middle of the night with my heart racing out of control. At the time I didn’t realize that it was horrific anxiety, which would soon become a household word in America. I had numerous ER visits followed by a cardiac workup and a huge assortment of other tests that “ruled out” any major health problems.

I was never told that these were classic menopause symptoms. I had been going non-stop in a high stress business and not addressing underlying life issues that most of us face these days. The end result is poor adrenal function, and a life that spirals out of control from too much stress.

After a month with no sleep, I ended up in a psychiatric hospital where the doctor placed me on lorazepam. It worked like a miracle, and after sleeping for three days in the hospital I was sent home with a refill on the prescription. I was never given any instructions about the drug, and I was never told that I shouldn’t use it long term. As I look back now, I know I was most likely physically dependent on the drug within a few days. The doctors just kept refilling it, and I went on with my life thinking that it was working and all was well.

Two months after starting the lorazepam, I contracted a severe vaginal infection (which I had never had in my life,) and was given an antibiotic called Cipro. I had a severe reaction to the Cipro and had to stop it after just a day. Prior to these two medications, I didn’t even take aspirin.

In October of that year, I took a trip to Costa Rica with some of my friends. When I returned, I became violently ill with a double parasite infection that took over a year to diagnose. Not one of my friends got sick, and we were all living in the same place and eating the same food. I was down to about 100 pounds and looked like a starvation victim. This was the beginning of what I call the journey of 1000 doctors. I went to every kind of practitioner you could imagine and spent hundreds of thousands of dollars. Not one of them ever suggested that my heath issues might stem from the lorazepam I was taking.

In November of 2001, I became very dehydrated from the infection. I blacked out and fell face-first onto the floor which resulted in a fractured orbit bone. I was not able to recover fully, became homeless and ended up on disability.

It seemed like everywhere I turned the medical system had just become big business. Mainstream medicine and disability were becoming an endless paper trail of pills and surgical procedures, while alternative medicine depleted every last cent I had. I was only getting $714.00 a month on disability, so I was living with friends and scraping together what money I could. I was only able to do odd jobs that didn’t require a great deal of stress, and I could only work very part-time.

Like many others, I was just getting a glimpse of how broken our medical system had become. Western medicine has some of the best trauma care in the world, but they fail miserably when it comes to treating chronic health and mental health disorders. After what happened to me, I had to ask myself: are all of these people really mentally ill, or just the product of a majorly stressed out society that is on the rat wheel from hell? I believe there are many more people suffering from the result of taking these medications than we are even currently aware of. Like me, they all placed their faith in a medical system that was too busy putting profit before people.

Two years later, I had an auto accident and ended up having to have major neck surgery after watching my father bleed to death in the ICU. I also sustained a torn rotator cuff after the accident. I was in physical therapy for about a year recovering from these injuries and did not understand why I wasn’t bouncing back when the doctors kept telling me my recovery time should have been much shorter. They kept writing more prescriptions for the lorazepam, and my dose was up from 1 mg to about 4 mg a day by this time.

Things finally began to level out for me after buying a small business in 2005 with some of the money my father left me, but that was short-lived after the market crashed in 2007. I ended up having to close my doors, and I slept on a friend’s floor for two years while I built up a business teaching voice and piano. The business provided me some flexibility while I struggled with very heavy bleeding from fibroids I had at menopause. Little did I know then that benzodiazepines could disrupt hormone function. Instead of getting me off the drug, the doctors just kept throwing more hormone replacement at me.

By 2010, it seemed I had leveled out some with having a more flexible part-time income, but I still struggled with horrible fatigue and bleeding. My testosterone dose was increased, and to my dismay I found out the tests they had been running were not accurate. As a result I was overdosed on the testosterone. I went to yet another hormone “specialist” and was taken off the testosterone cold turkey. The result was a Secondary Addison’s episode that I thought was going to kill me.

The following year I was put on hormone pellets. These are inserted under the skin instead of taking them orally. Because they go directly into the bloodstream, they are supposed to bypass the digestive system and be a much more effective form of hormone replacement. Although the bleeding I had been having stopped in 2009, I began spotting again after starting the pellets. At first I felt amazing, but it was a false sense of security due to my adrenal function being so poor. I seemed to hold up well for several months and then completely collapsed in 2012. I couldn’t even walk to the mailbox without my heart racing over 100 beats a minute. All that I could do was lie on the floor and do deep breathing to soothe myself.

Shortly after that, I began reading more and more information online and found a non-profit called The Point of Return. Alesandra Rain founded this organization after a horrific time with her health coming off multiple prescription medications. Her story was eye-opening, and through her non-profit organization I found Roy Katz at Custom Rx Compounding Pharmacy in Minnesota and learned about his medication taper program. Roy told me how bad the hormone pellets were for my adrenal glands, and before starting my lorazepam taper he helped me get off of the hormone pellets. At this point I still had no idea how badly the benzos were destroying my health, but I knew without a doubt that I had to get off of them.

I thought I had already been through enough, but wasn’t prepared for what was ahead of me. The doctor that inserted the pellets put me on an oral estrogen so that I could come off of the pellets, but there is no research on an oral to pellet equivalent ratio of hormone doses. Because the pellets go directly into your bloodstream and are far more potent than any oral dosage, there is no way to be certain that you’re getting the same dose of estrogen orally as you would from the pellet. This resulted in a withdrawal bleed so bad that I had to call the paramedics. I lost so much blood that I was in the hospital for three days. They had to call the crash unit because of my blood pressure dropping so low, and I ended up having a blood transfusion.

I continued bleeding for months, and was scheduled for a hysterectomy when I found an amazing herbalist who put me on an herbal formula. A week before the surgery was scheduled, the bleeding completely stopped. As I look back, I don’t think I would have survived another surgery at that point. Several months later, Roy helped me taper me off the testosterone pellet. My joints and bones hurt so bad that I could hardly stand up, and I was a total wreck. My hair was falling out, I couldn’t sleep and I could barely function to get to the store.

Roy tapered me over to diazepam because of its longer half life, making it easier to come off of the lorazepam. I couldn’t believe that I had climbed to 10 mg of lorazepam. It was amazing that I was still standing.

The taper program uses a liquid titration method that is compounded in almond or olive oil. The pharmacy uses 1 mL syringes to draw out the liquid, and the dose can be compounded to whatever amount you need which allows for very slow tapering. The result of doing tiny tapers is that the brain has time to adjust and begins to restore its own GABA neurotransmitters that may have been damaged from the drug. The medication scales are linked to a computer so they can be measured very accurately. Most people are able to work and have minimal withdrawal symptoms this way. The program itself is free, and medication prices are averaged out over the course of the taper to make them more affordable for most people.

Because my adrenals were so beat up from the hormones and long term use of the lorazepam, the end of my taper was brutal. I was down in bed for the better part of the last six months of the taper. I had two blackouts. One resulted in another head injury, and I sustained a back injury with the other. I had hallucinations, extreme weakness, visual problems, confusion, balance problems, akathisia, insomnia, extreme whistling in my ears, G.I. problems, memory loss, weight loss, weight gain, intense body aches and pain, joint popping and snapping, muscle tension and tightness, inability to handle stress, hypersensitivity, hair loss, rashes, and hyper salivation that resulted in rapid tooth decay. This is just a list of physical symptoms and doesn’t include what it did to my self confidence, career, friendships and my bank account.

Roy hung in there with me when no other medical processional would. His knowledge about hormones and medications far exceeds that of any healthcare practitioner I have come across. I believe that many good doctors have opted out of the insurance system so they can make money, and are therefore out of reach financially for the average person. The doctors who do take insurance are all drowning in government paperwork that prevents them from having the time to care for patients the way they might like to.

I found an inexpensive little guest house in a remote area of Phoenix where I could recover my health, and I began helping Roy expand this taper program. There is no way I could have worked doing anything where I could not micromanage my schedule. On many days I can’t handle driving, and I am still having issues with my central nervous system that do not allow me to participate in normal day-to-day activities like I could before benzos. Working with Roy has allowed me to generate some income where I can soon be free of the disability system. It is helping me regain some of the dignity I lost from these prescription medications.

After reading posts in the benzo forums, I realized how many people needed access to the information we provide in order to know how to come off of these medications with minimal withdrawal symptoms. I wanted to be able to help others with the knowledge I had gained about prescription pharmaceuticals and what to expect with the withdrawal process. I realized how much compassion I had gained for others struggling with the same thing I had gone through, and thought that my story might inspire others to come forward to create more awareness about this issue. Most doctors don’t believe these drugs can cause the problems they do, and the only way that is going to change is for the people who have been affected to come forward with their stories.

I can only hope that someday I will be able to go back to playing music. While I help Roy with creating affordable treatment, diet and stress management plans for others, I am continuing to work on several of my screenplays. I am involved with writers groups, and I am honing my skills in hopes that I will be able to sell them and get back into playing and writing more music. The one thing I do know for sure is that I have more strength than I ever imagined life would require of me. Managing to come through benzo withdrawal and recovery makes you feel as though just about anything is possible.

Previous articleMerry Citoli — Long Bio
Next article“Vast Majority of Americans Want to Criminalize Data Fraud”
Merry Citoli
Merry Citoli is an award-winning singer/songwriter and screenplay writer whose life went into a downward spiral after being put on lorazepam for insomnia and anxiety. She is now working to expand a medication taper program for others who are suffering from the same pain she endured. Her upcoming book "Falling Through the Cracks" is about her journey through benzodiazepine dependency and how it impacted her career, friendships and finances.

Support MIA

Enjoyed what you just read? Consider a donation to help us continue to produce content, provide up-to-date research news, offer continuing education courses, and continue building a community for exploring alternatives to the current paradigm of mental health. All donations are tax deductible.

$
Select Payment Method
Loading...
Personal Info

Credit Card Info
This is a secure SSL encrypted payment.

Donation Total: $20.00

35 COMMENTS

  1. Thank you for this – look forward to your book. My journey to insanity started with a benzo taken for caregiver exhaustion and insomnia. After my mother died I stopped taking the benzo. Benzo withdrawal syndrome was not recognized and I was medicated for ‘agitated depression’ and then for every psychiatric diagnosis known to man. 35 different drugs in 8 months – and for having survived I was forced to have 25 rounds of bilateral ECT. Why did I continue to take drugs? – I would have done anything for relief for the horrendous agitation – now I know it to have been akathisia. I have been cleaning the apartment of a close friend who died a treatment-induced death. I warned her doctors – it did no good. Even the coroner admitted that while he no longer prescribes Celexa/citalopram, he can not scientifically prove it caused her death.

    .

  2. We need a compendium of such testimonies to present during commitment/AOT proceedings.

    are all of these people really mentally ill, or just the product of a majorly stressed out society

    It’s not an either/or — the former is a (deceptive) euphemism for the latter.

    The one thing I do know for sure is that I have more strength than I ever imagined life would require of me. Managing to come through benzo withdrawal and recovery makes you feel as though just about anything is possible.

    Next watch them point to this as an example of how your “treatment” worked to empower you. 🙂

  3. You have been through the wringer. I am sorry to hear about how much you have suffered. However, correlation is not the same as causation. You seem to blame it all on the Ativan, whereas the double parasite infection, car wreck, and other bad things that happened to you likely have had a big part to play in your suffering independent from Ativan. As a psychiatrist I am quite aware that psychotropic medications are over prescribed. Perhaps even more than the side effects they can cause, the biggest problem is the temptation to follow cook book medicine and not take the time to understand what is really going on and what might help. After everything you have gone through, you deserve to spend some time with a good therapist and process the traumas you have endured. Maybe that therapist can also be a psychiatrist; some of us still believe in listening to and understanding our patients.

    • I am sorry to hear about how much you have suffered. However, correlation is not the same as causation. You seem to blame it all on the Ativan, whereas the double parasite infection, car wreck, and other bad things that happened to you likely have had a big part to play in your suffering independent from Ativan. As a psychiatrist […]

      Right, the “real” problem couldn’t possibly be the drugs! The “real” problem couldn’t possibly be that which is the basis of your livelihood.

      OR maybe she knows what happened to her. Who are you to “correct” her account?

    • Reply to ‘julemiller’ comment:

      Well, I’ve heard of ambulance-chasing lawyers, but this is my first time witnessing an ambulance-chasing psychiatrist. Did julemiller even read Merry Citoli’s entire account? It was substantially more complex than “my Ativan caused a bunch of stuff”. julemiller and I did not read the same account. And isn’t telling Ms. Citoli that she needs a shrink for her trauma much like sending a vegan to a hamburger joint for lunch? I don’t have the impression she (or anybody, for that matter) will find healing through psychiatry. Directing Ms. Citoli to a shrink strikes me as a sick joke. After spending time on MIA I would sooner send myself and my loved ones ANYWHERE for healing that was NOT a psychiatrist (!) or anyone in the ‘mental health’ system (!).

      Thank you for your moving personal account, Merry. I wish you healing, health, and safety after everything you were put through. Accounts like yours are wrenching. Good luck with your book.

      Liz Sydney

  4. Thanks Merry. I loved your article. I too think there are serious physical consequences when drugs start messing with the brain (just adjusting your ‘mental health’).

    I do think that you are too kind to doctors generally, however. You suggest that if they only ‘had the time’, they would of course have helped. Unfortunately, as it stands, doctors have the only real access to drugs, and they are not behaving responsibly in their relationships to drug companies. Doctors are paid for their expertise and are responsible, not for what they would do, if they had the time, but for what they are doing.

  5. Hi Merry, words are hard to find right now. Your story is so courageous. You’ve been through a lot more than I have, but I did do the benzo withdrawal about 12-13 years ago after a long period taking them, and it was hell for a while, but I finally cleared my system of it and also regenerated my nervous system with herbs and other natural remedies, such as Qi Gong and grounding meditation, that was vital. I really appreciate what you say here–

    “The one thing I do know for sure is that I have more strength than I ever imagined life would require of me. Managing to come through benzo withdrawal and recovery makes you feel as though just about anything is possible.”

    Indeed, and I do think that we gain untold strength and power from this, as well as creative inspiration. It’s like quantum leaping in evolution. I wish you the very best in your continued healing and outreach to others, as well as your continued artistic endeavors.

    And btw, I’m a musician–musical comedy actor as well as music director and piano accompanist for a local band–and your bio piqued my curiosity so I looked you up on YouTube and found your channel. You are FABULOUS! Your voice is tremendous and you sing gorgeous songs, very moving. I seriously hope you are able to get back to recording, it is obviously a calling for you.

    • Also, I just noticed that one of the songs you sing is called Abbetira, which I see above as a commenter, so I wondered if this is you as commenter? I looked up your comment history wondering about this, and lo and behold, I saw a lovely post you made recounting some of your story, which I recognize from your blog, here, in response to me, specifically, where I shared my story of benzo withdrawal, about 2 1/2 years ago! I never saw it before tonight, for which I totally apologize. Had I seen it then, I would have responded right away. You did leave your contact info, so I will gladly email you tomorrow to follow up, if you’re still up for it.

      Wow, talk about Divine timing, eh? We seem to have quite a bit in common. I also cherish my connection to source 🙂 More soon…

  6. I began feeling “different” January of my 45th year. Fortunately, I have never been on benzodiazepines; I asked my MD for them once, his response was, “I’d like you to learn to handle your anxiety differently than that.” That was spoken to me in ’99. Fast forward to 2013 and I decided to take a health class offered by Kaiser Permanente: “Transition to Menopause” and learned some of the hallmarks of my “experiences,” were characteristic of the transitions I am making to menopause. It was profoundly helpful and I am so grateful for Kaiser’s confidence in preventative health through education and support. What wasn’t so helpful was an MD prescribing an hormone replacement therapy for me in response to heavy bleeding, which brought on hot flashes within 48 hours. It was disturbing and unfamiliar, so I stopped the HRT. I was diagnosed with fibroids, had a mini surgery for removal, and went ahead without heavy bleeding, thankfully. Since then it seems I get no hot flashes–fingers crossed–because I walk 45 minutes, most days and more on some days. Its intrusive to my marriage to have mood swings (my current symptom) but I would not like to take HRT because of my response to it and it’s one more pill to take–I take 5 daily for schizoaffective d/o. But no benzos and I’m very grateful to the good psychiatry I received when I asked for some.

  7. Merry, your history of overtreatment and over prescribing and journey to health is extremely moving. I think its the norm, too, except some people without your determination don’t get their health back. I, too, look forward to reading your book.

  8. What you were experiencing did involve cause for physical pain, along with menopause symptoms. But then psychological distress was also in the mix, and with the idea that the solution to this is medication. So it was a real mess.

    It does appear that people do sometimes need to go through melt downs, nervous breakdowns. And so we do need to provide people with safe places and care.

    Okay, but when we call for this it is very important that we not be advocating “Recovery”, because that is simply an adaptation on the religious doctrine of Original Sin, and that is used to justify child abuse. It puts the blame on the child victim, instead of the abusers.

    And then what exactly is it which causes people to need to go thru these meltdowns? Is it that they were subjected to psychological child abuse and forced to live a kind of false life, and so then they face a mid-life crisis of large proportions?

    Capitalism used to get it’s scapegoats in the form of cheap labor and slave labor, and it got these from immigrants, racial minorities, and by neo-colonialism. But today in the Information Age, labor is in gross surplus. So what Capitalism still needs, in order to enforce the self-reliance ethic, is a steady supply of people to subject to ritual humiliations.

    So it gets this from the middle-class family itself, in its scapegoats. Via psychotherapy, psychiatry, developmental disability therapy, and religion, the middle-class family sends people into a world of medications, plus alcohol and street drugs.

    Until we face this and dismantle the self-reliance ethic, nothing will ever change.

    Nomadic
    http://freedomtoexpress.freeforums.org/refuse-and-reject-recovery-t286.html

  9. I would like to emphasize that there are people who don’t have bad experiences with treatment, and it saves them from unemployment, homelessness, prison, and stress disorders which all result from a society that favors the rich by overworking and underpaying the middle class and poor.

    I also wouldn’t disagree that treatment itself for mental illness can disable you if incompetently administered as in your case, but there are many competent medical care givers who don’t abuse giving out drugs and talk therapy, and really do help others.

    In your case if the medication was more competently prescribed to you, where you were explained the risks and benefits and were able to work closely with a physician it would have helped you deal with the stress of being overworked.

    That doesn’t normally happen anymore for the middle class and never for the poor, it is usually a luxury of the rich who get health care.

    • I’ve known people who think like that, that the drugs keep them socially functional. It is scary, that there are people who live that way.

      Liberalminority, I don’t care what you post here. But if you have authority over anyone else, I want to see that terminated.

      Nomadic

  10. Hi Merry,

    Thanks so much for sharing your story. Truly believe we need to speak up. I am wondering if you could help with my initiative here –
    I am developing a storytelling and mental health platform with the ultimate aim of curating a museum exhibition. Soul relics Museum is a platform for people to read and tell stories of mental health through objects that help them connect or express to a present or past experience they have had with their mental health. The object can be anything personal to something in the system. It’s a unique and creative idea to help people come forward and share with others what mental health problems have been like for them and a safe and constructive way to read of others experiences while being brave enough to share your own. Together, we can create a collective voice in raising awareness and education on mental health!
    All you need to do to help is to take a look (http://soulrelicsmuseum.me ) and write a short personal story (http://soulrelicsmuseum.me/Contribute.html)!
    If you agree with the initiative, I would be super grateful if you could help me promote it (eg. share on social media and contribute to the discussion) as me as an individual can only do so little in unifying people’s voices.
    Let me know if you have any thoughts!

    With Solidarity,
    Van

    • Van, I appreciate what you’re trying to do. But you may have come to the wrong place. A lot of people here get really upset at the mere mention of mental health or mental illness without quotation marks. 🙂

      I call a lot of those places Mental Illness Centers. In order to recover from my madness I had to run away from mine. I am now tapering off the brain drugs they had me on. Hope to be off Effexor next year. (It’s a bear to come off.)

      The weird thing is my parents think I’m better. They think if I don’t take my antipsychotics I get paranoid. Little do they know I haven’t taken Abilify since July 1, 2016. They keep marveling at how my mood swings and depression are going away! Little do they know.

      • Hi @FeelinDiscouraged,

        Thanks for your genuine words and your comments. Sorry I hope I did not offend anyone here – I genuinely hope that people who are passionate about this issue should stand in solidarity.

        I personally believe that everyone can talk about mental health (not in quotation), because the phrase “mental health” is neutral, just as when we talk about “health” in general. The problem is when people start stigmatising it – when one mentions “mental health”, people associate with “madness”, ” craziness” etc. The issue is not the phrase “mental health” per se, but the stigma associated with it. Hence I tried to initiate this project – we are all humans, we are all similar yet different, but don’t pathologise some over the others. We all have our stories to share, and through those, I hope to find similarities between all of us.

        Object is a good media, when we see something, memories related to that object may readily come to mind. For example, when one sees a key, they may think of home; a more embarrassing one, whenever I go to the gym, I think of the time when I went to the wrong changing room. Some of the people who submitted found it really interesting to view their story with mental health using an alternative perspective – hence they told me things like, “oh yeah, I remember when I was very ill and no one seemed to understand me, a smile by a stranger on the street made my day.”, ” I felt things are so out of control, then one day, I picked up a pebble on the street and it felt so soothing, as I was holding something solid” etc. Personally, piano really helped as one of my main motivations back then to recover was to be able to perform on stage. I know some people rely a lot on medications or therapy. I had neither.

        Does these make sense? I am really happy that someone holds opposite opinion as me, as my personal narrative to the world is different to others, what you think will allow me to rethink whether or not this project is worth pursuing, or how I should go about pursuing it.

        Look forward to hearing from you.

        Van