Loperamide No More – Part 2, or Happy 2nd Re-Birthday to Me!

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Death by Loperamide isn’t funny. Cardiac arrest sucks monkey butt.

Two years ago my heart stopped and I died. I died at home. It was a Tuesday.

There was no white light. No relatives greeting me. Just darkness and silence.

I barely survived my overdose on loperamide in 2012. It was a turning point in my life, and yet, I’d almost forgotten all about the anniversary until my iCal app popped up with a reminder (the date was actually the 22nd of Feb).

This is my second Re-Birthday.

At the time I died, I had been taking loperamide (also known as Imodium or Immodium) to ameliorate opioid withdrawal symptoms. My dose had slowly titrated up over about a year’s time from 20 pills to an incredible 144 pills. Why? Because a convenient time to go through the inevitable withdrawal never seemed to come. And loperamide, an opioid of the piperidine class, had its own tolerance, demanding occasional increases in dosage to maintain ‘normal’ without going into withdrawal.

I should also note, prior to using loperamide, I never had any heart problems aside from the occasional Premature Ventricular Contraction (PVC). My cholesterol was perfect, no plaques in my arteries. From perfect cardiovascular health to arrhythmias and cardiac arrest is not normal — and the only explanation was loperamide, the only drug I was on at the time.

After going into cardiac arrest, my heart miraculously restarted itself. No one is sure why (including the doctors), otherwise, no one would have found me for days. I called 911 and went to the hospital where I was diagnosed to be in ventricular tachycardia storm that was degenerating into torsades de pointes. In short, my heart’s electrical system was shorted out so my heart kept stopping. The QTc interval on the EKG was prolonged, meaning, I was in big trouble. I remained conscious as long as I could during the entire three hour ordeal so I could answer questions and to try to help the doctors understand my condition.

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Yes, except I wasn’t unconscious for this.

I was cardioverted over 28 times while wide awake and lucid for the experience, and I can assure you, it sucked beyond all reason. You NEVER want to be cardioverted while awake unless you absolutely have to. I chose to because the doctors knew so little about the drug that I had, in essence, poisoned myself on.

Once I was too fatigued to stay awake any longer (and the doctors had obtained as much information as I could provide), I was intubated and sedated — basically, placed in a medically-induced coma — for three days during which the loperamide worked its way out of my system.

I awoke on the fourth day, completely awake and lucid from the moment my eyes opened (though I was understandably a bit confused about time and place). I demanded to be extubated. I was in full withdrawal which, also, sucked beyond all reason. I experienced some of the worst physical agony anyone could ever experience — mostly I was angry that I’d almost died during a time in which my life also, sucked beyond all reason. I decided with all my heart, I did not want to die. Not now. It wasn’t my time. I wasn’t going to die like that.

I wanted my life back. I wanted to make a difference. I didn’t want to act like a slug anymore — but that would have to wait.

I had no health insurance, and once I was released after 9 days in ICU, I had no follow-up care at all. I had no medication to help with the long-term withdrawal symptoms I felt.

After 8 weeks of agony from withdrawal, broke with no health insurance and in deep desperation, I decided to take loperamide again; I felt I had no other choice.

Even though I was eventually signed up for Medicaid, I thought I had everything under control with the loperamide, which I felt would be safe if I kept it at lower doses. I was wrong. After a year, I was taking 80 pills a day and ended up in the Emergency Room yet again with runs of v-tach and various types of Heart Block (including Mobitz II). Although I didn’t die, I was scared out of my wits and very angry with myself. I had to stay overnight for observation and once again, I had to explain my usage to the staff who were, mostly, completely clueless about the drug. I was mortified. I had to fight pretty hard to keep my family from knowing what I’d done. It was the loperamide again.

One of the doctors from my previous stay sent me an email appropriately scolding me for using the lope again: “You’re playing Russian Roulette, Margaret. You’ve shot two out of the chamber and you’re still alive. It’s a miracle. How many more do you think you’ve got in you. STOP. Get help now!”

Best advice I ever got. So I did. I got help.

It’s taken a lot of time and hard work — and medication. With Medicaid as my insurance, I didn’t get the best help, but I, at least HAD help. I joined AA, and found a few interesting and decent people to help me (including the Square-Jawed NP).

As of the 21st (ironically, one day prior to my re-birthday anniversary), I have been completely off loperamide for 90 days. Doesn’t sound like a lot of time, does it? Well, it feels like a lot longer. I’m on medication that eases my remaining withdrawal symptoms, controls my depression (whether manic or otherwise), and physically and mentally, I feel pretty much back to my old self. If slightly better — and that’s a very big deal for me.

Life still sucks — being off the lope isn’t exactly a miracle worker, you know — and it’s going to take a lot of effort to get out of the hole that I’ve dug for myself. But right now, I’ll take what I have and be grateful for it. I’m thinking clearly and feeling better. I need more motivation though, and hopefully that will get better as spring begins to reveal itself (can’t happen soon enough).

Loperamide_3D_spacefill

3D model of the loperamide molecule

Today, I’m dedicated to getting the word out, using this blog, that loperamide is not a safe alternative to traditional opiates/opioids when taken in doses higher than the recommended daily dose.

Here in my blog, you will find truth, not bullshit. And no presumptions. To this end, I present:

A few important facts, bullet points backed up by published scientific reports (look ’em up if you want to):

  • Loperamide does cross the blood-brain barrier.
  • Loperamide is an addictive drug, especially when taken in higher-than-recommended doses.
  • Loperamide is effective at ameliorating opioid withdrawal symptoms.
  • Loperamide prolongs the QTc interval, setting up the right conditions for ventricular tachycardia and the deadly Torsades De Pointes.
  • Loperamide overdose has resulted in a few deaths; several others have survived the overdose after being near death. (These numbers are much higher if you count anecdotal evidence.)

I am grateful to be alive today. I’m glad the sun is shining and that I can feel its warmth on my face. My life may still suck, but it doesn’t have to do that forever. I am free of opiates and free of the loperamide monkey on my back. I’m very lucky to have a second (third?) chance at life. I’m trying not to screw it up this time.

Don’t go down that road of using loperamide as opioid replacement therapy. DO NOT USE IT. You won’t be as safe as you think. Prolonged QTc is a silent killer; you won’t know you have it until it’s too late.

Don’t let it be too late for you. Take it from me; I know. You don’t have to visit hell because I’ve already been there for you — and came back to tell the tale.

ADDITIONAL LINKS on THIS SITE:

————————————-

Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night. — Dylan Thomas

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About madmargaret

Nursing student, Mac nerd, medical 'genius', recovering addict, singer, ex-actor, and all-around swell egg. Really!
This entry was posted in + recovery, addiction, bipolar, depression, loperamide abuse, sobrietyland and tagged , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

18 Responses to Loperamide No More – Part 2, or Happy 2nd Re-Birthday to Me!

  1. wardteacher says:

    Hi, again, Margaret—
    I left two comments because i could not find an e-mail directly to your site but here is a third–

    I found your site through a maze of links to the poem The Awful Rowing by Ann Sexton. This was the link–
    http://inwardoutward.org/quote-source/the-awful-rowing-toward-god/
    https://ikereeser.wordpress.com/the-poem/

    he question is whether these links are happenchance or something else… I am reading that book I mention The Spirituality of Imperfection, which is a spiritual history of AA ad more.. more like how AA interweaves with the great spiritual ideas of the world past, present ad maybe future…

    Your blog and your writings fit into that so snugly .

    Keep rowing…

    Phil

    • madmargaret says:

      Thank you for your kind comments! I appreciate the book suggestion too and will look into it. The link to The Awful Rowing was notably insightful — thanks for that too. I hope to write more soon, so please do stay tuned. 🙂 M.

  2. BGM says:

    You sound like the person that I was writing when I was in the hospital (From Denver). I was also in the ICU from February 6-20 due to the same exact issue. Vtak storm, Torsades, and cardiac arrest. I snapped out of 3 episodes before finally making it to the hospital, where I had my 4th episode immediately after hooking me up to the EKG. I got full Defibrillation when unconscious. In and out of vtak runs with torsades for 2 days, and finally controlled by a 10 day drip of isoproteranol. I want to warn everyone out there, I STILL HAVE HEART PROBLEMS as of March 28th. I still have Left Ventricular issues, that are hopefully slowly getting better. The Cardiologist had the talk with me about an IMPLATABLE DEFRIBLIATOR FOR LIFE. The Immodium affects your POTASSIUM, affecting re-polarization. They were AMAZED that my heart was able to repolarize somewhat when I came in.

    DO NOT DO LOPERAMIDE

    • madmargaret says:

      Glad to hear from you my friend, and very glad you are doing better — so sorry about the continuing issues and defibrillator. It was something they considered briefly for me, but I have recovered without needing it. Perhaps you won’t need it after all either. Please stay strong and PLEASE hang in there. Time is your friend. Please write if you wish — I’m always glad to hear from you.

    • madmargaret says:

      A bit more… Yes, my heart, too, was able to repolarize on its own now and again which my docs were also amazed by. That simply doesn’t happen. You degenerate into Torsades and that’s usually the death knoll. You and I are both very lucky to be alive. As I said, don’t be too discouraged by the possibility of implantable defib — you’re young, and it’s amazing how the body can bounce back. Consider this second chance a gift — and please write anytime!

  3. Hey Margaret, I just read your story and it gave me chills I went through the exact same thing 2 weeks ago passed out twice at work and flat lined 9 times most of which I remember gritting my teeth and feeling the electrocution so I know what you want through it was scary as shit. I didn’t see any light or anything just thoughts in my head when I died. I am only 24 and have no family or history of vtach but I was taking alot of lope for about 7 months. Im scared I have no defib and I’m doing a taper I am down to 20mgs twice daily any advice would really help if withdrawal doesn’t suck enough try dying a bunch of times and then to withdrawal no one understands what I’m going through and its really tough bc it’s embarrassing and I feel uncomfortable around overly emotional people like my family crying and taking about what happened constantly when I’m ready to move on you can read more about what happened to me here: http://www.drugs-forum.com/forum/showthread.php?t=246111 I hope your doing well!

    • madmargaret says:

      Hi west — Keep tapering! Have you had any cardiac events since that initial hospitalization? If you want to email me, contact me at the email address at the bottom of this page. Hang in there! — MM

      • Hey Margaret, thanks for the reply I am trying to take one less pill every 12 hours. I haven’t had any cardiac events since the 20th of May (knock on wood) I was able to cook do laundry and shower yesterday but I still get occasionally dizzy is that normal do you think it could just be fear or the withdrawals still? I also wanted to know if you got headaches after what happened to you? Im really glad you posted your story on here it’s really motivating to hear someone overcame the exact thing I’m going through. Oh btw my ekg the other day was 462 milliseconds apart for the qtc which went down from almost 2 seconds apart 2 weeks ago. It does still show torsades “twisting of the points” just wanted to know how long it took your heart heal and you didn’t get and ICD or anything right? Looking forward to hearing from you 🙂

      • madmargaret says:

        Hey there West! As long as you remain on the loperamide, it’s possible you may find some weird things going on such as the dizziness. Are you still in hospital, or are you back home? Be aware that serious fatigue and some depression are normal too (and the epic diarrhea of course). I don’t recall having the headaches you describe, but that’s not to say it isn’t related. Your body’s going through pretty big changes. If you take magnesium it can help. Did they give you a mag infusion in the hospital? It helps normalize the QTc. 462 for a woman is within the borderline range. I’m not so sure about the torsades — that should be gone if you’re upright — it’s a deadly arrhythmia that leads to cardiac arrest. Perhaps you mean another arrhythmia like runs of v-tach or PVCs? Some residual (non-lethal) arrhythmia would be normal — but then again, each person that contacts me teaches me something new. I was lucky to have a very healthy heart and cardiovascular system going in, so my heart recovered well and no, I didn’t need an ICD or pacemaker. Give it time and stay tough with the tapering. You’re doing great — hang in there!! Ask questions as much as you wish — it helps me understand it and, in turn, it helps a lot of other people who look at the site and ask questions

  4. Hey Margaret! How are you doing? I feel a lot better. I’ve still been taking 7 to 10 every 12 hours but I am thinking about just stopping and maybe using 1or 2 pills for the awful diarrhea around day 5 of withdrawal. The reason why I’m thinking about just stopping is because sometimes a few hours after my dose I will feel my heart “flutter” and out scares the living hell out of me. Also just to document this since I’ve been using it, even in miniscule amounts, I sometimes feel like when I’m breathing I can’t take in enough air. This used to happen to me when I was on high dose methadone and I thought it was because I was a smoker. I haven’t had a cigarette since my last vtach, which was May 19th. So I’m wondering if that has something to do with it. I realized the pain of withdrawal is NOTHING comparable to not being able to breath and thinking I’m going to die. I had my last dose of 10 really this morning and just to be safe im going to use as needed for when the diarrhea comes. The day all this happened I fainted after smoking a cigarette, brushed it off as a heat stroke, and went back to my job. An hour later I woke up yet again on the bathroom floor. The same way Elvis died. Still went back to work. Nearly passed out several other times before I told my boss and an ambulance was called. I was told I had polymorphic ventricular tachycardia and episodes of torsades and its a miracle that my heart re started. This wasn’t my first time dying I was in a horrible crash going almost 140 mph , on s motorcycle with no helmet. My boyfriend wasn’t so lucky. So these are the things I think about when I’m scared to withdrawal, because at a time I feared going through them more than death. I shouldn’t be alive your right I was given a gift many people don’t get that many chances and I don’t think I’m going to get anymore. It’s amazing what people take for granted I’m so happy to wake up and see my dog and just be able to do normal things withdrawal is the pits of hell but nothing compared to what we went through and I know I’m playing with fire by taking Loperamide at all anymore. Your story and my traumatic experience.has helped me come to this decision and just knowing that you did it is really encouraging. Btw I left the hospital AMA on the 30th they kept me there that long because during surgerytheyhagave me a really bad blood staph infection so I did my research and found that marijuana particularly strains high in CBD cured MRSA when no antibiotics would work and so far my blood is clean my WBC count is 1600 which is a tiny bit high but it’s gotten so much better that i left the hospital. Anyways I hope your doing well and looking forward to hearing from you!
    West

    • madmargaret says:

      Yep — it begins with the fainting — I remember well. Keep plugging away and you will do it! (And good for you quitting smoking too! That’s awesome!!)

  5. Hey, I was reading more of your articles and saw the one about how you wanted to be prescribed suboxone or subutex. I am so glad you didn’t go down that road and for anyone reading this suboxone is NOT an easy way out and its one of the worst and longest (over a year) withdrawals you comparable to methadone and way worse than IV heroin withdrawal. Believe me I know I was on methadone and dope for 5 years then switched to suboxone for 8 weeks. I was clean for 4 months with nothing at all and was still in full blown hardcore shitty withdrawal. The reason is suboxone and methadone both have the half life of about 36 hours you don’t even feel full withdrawal until about two weeks clean. This is the exact reason I turned to Loperamide. My boyfriend did it with nothing it will be his one year clean anniversary this June 24th and he still had restless throughout his whole body and sneezing anxiety and trouble sleeping. He was on a much lower dose suboxone and for a shorter time than me (about 5 weeks) . It’s so much easier to just come off a short acting opiate like oxycodone. Those clinics will tell you that you won’t feel withdrawal they are lying and have never been through it all they care about is getting your money. Coming off heroin was a cake walk compared to suboxone

    • madmargaret says:

      Yes, I believe not taking subutex was a very good move — it would have simply further complicated the whole thing. Good note, thanks!

  6. Anon Ymous says:

    Jesus thats scary shit.. I just took 96mg of lope yesterday & noticed it was awesome to stop w/d My eyes were pinpoint but didnt get any traditional opiod effects did you? I Was thinking about trying double the dose I know this sounds stupid af but im an addict & honestlu wery could care less if i live or die. I mean im stuck in the position you were.. my neighbor slangs heroin everyone does it its there all the time when i cant afford it I turn to what Ican to not be sick because the desire to dose is stronger than the urge to live. Been using for 10 years im 26 now :/ no medicaid no insurance fuck methadone & sub to shits halflifes to long for me to get burnt out on withdrawal

    • madmargaret says:

      Hello Anon,

      Part of the reason you don’t care about living or dying is the opioid effect on the brain. Once you’re addicted, it tends to develop that VERY brief “high” then a prolonged deeply depressive counterreaction — prompting you to reuse quickly to try to fix it, creating a vicious cycle.

      In other words, that depression and suicidal ideation is not YOU, it’s the drug making you feel that way! TRULY! It’s paradoxical, but true.

      I’m not sure why you’re not on Medicaid, but I urge you to reapply or seek help any way you can. Free clinic? Ask family for help? Something? 12-step? Anything? I really wish I could talk to you in person and help you Anon, but sadly my medical license is a few years away.

      I wish the absolute best for you and hope you find the help you so desperately need before it’s too late. And if that “too late” date ever comes, I hope you get a second chance like I did with caring doctors and nurses who will inspire you through their kindness and caring. Life without drugs is, in fact, possible. And truly, it doesn’t suck nearly as much as you think it might.

      Please hang in there and don’t give up.

  7. I just got my son’s autoposy report yesterday, he passed away 09-16-15. Cause of death: loperamide toxcity, he died from an overdose of imodium. Please don’t turn to this for help. It can kill you, the medical examiner had never seen a case like this before, don’t believe the forums that it won’t hurt you. I’m living a parents worse nightmare. I don’t want anyone to go through this pain. Please don’t use it.

    • madmargaret says:

      Hi Carolyn, I’m so sorry for your loss. It’s particularly tragic when someone so young and so vibrant is taken. My heart breaks for you.

      The information on loperamide toxicity is slowly being disseminated into the medical community as more and more people show up in ERs with the symptoms. One published article recently referred to it as a public health crisis. A recent presentation at a conference considers it one of the top emerging drugs of abuse.

      Thank you for sharing your story. I wish you strength and hope — and my sincerest sympathies. If you wish to write to me, please do.

  8. Carolyn,

    I’m sorry you lost your son to such a horrible drug. Thank you for sharing the autopsy report findings.
    LAL

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