A Kindled Brain: Long Term Lexapro Use Reactions

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lexapro kindling
One year ago, I was living the American dream, a father of two young sons, active, social, traveling sales person. All of that was taken away from me because of a pill. I never had any history of mental illness or even anxiety for that matter. I “sold myself to the devil” as they say by taking a medication that I was told would help me with some fears with public speaking. I am now paying the price for that decision.

Fearless and Careless on Lexapro

I was always the social person. Class clown, outgoing and had a lot of friends. I wasn’t the best student but because of my outgoing personality, sales was a no brainer for a career. In late 1990’s in early 2000’s most of my friends (including me) were getting married. I was often asked to be the best ma. I noticed I was uncomfortably nervous during those speeches. I also noticed I would often experience this feeling during my work presentations. Plus, I had a fear of flying on airplanes which was a job requirement. I decided to talk to my doctor about it and he suggested a psych. I went to see the psych for only three weeks but he changed the course of my life with just a couple of strokes of a a pen on a piece of paper. This doctor prescribed a pill. A pill that many say “re-wires” the brain. The medication he suggested was Lexapro. I had never heard of Lexapro, but back in 2001, anti-depressants were taking off.  You may recall the TV series, The Sopranos.  It was a hit cable series that featured characters that as soon as anyone had any issue pop up, the doctor prescribed an antidepressant. It seemed to me that they were making a joke of the concept that everyone on the show needed a medication to function.

In 2003, during the peak of that wave, I started Lexapro. Within weeks, I was transformed into someone who feared nothing. Everything became much easier for me. I could present to large audiences. My fear of flying disappeared. My career took off. I became even more social, feeling confident in any setting. I enjoyed being the center of attention. I then started making changes in my life. I got divorced. At the time, I felt that I did not need to put up with anything if I didn’t want to. It was hard, as I had two young sons, but I felt it was the right move for me at the time. Looking back it was a cold move (and I handled it poorly) but I was laser focused on what I wanted to do. I became much more comfortable and flirtatious with women (not in an obnoxious way). At the time, I wanted to be free. In so many ways, in my mind, I was an improved person. It wasn’t until the last year that I realized how wrong I was. I took Lexapro for 15 years. I never looked back. Until now.

The Slow Build up of Symptoms: Lexapro Rejection

Fourteen years later, after living quite a normal, active life, I began to struggle with my health. I had a girlfriend (an angel-she’s been by my side throughout), two wonderful sons (now 13 year old twins). However, in the beginning of 2015 I started having a lot of dizziness, stomach issues and low sodium counts in my labs. I was diagnosed with IBS. In addition, doctors thought I had a stroke in one trip to the ER. The possibility of a stroke was  was supported by a CT scan but then later overruled by an MRI. They diagnosed me with a TIA (mini stroke), but I didn’t buy it and carried on with my life. It wasn’t until later that I realized my body was rejecting Lexapro.  In June 2015,  after several months of continued low sodium counts in my blood and dizziness,  my doctor suggested I come off Lexapro. In late November 2015, being off Lexapro for 5 months,  I was improving slightly. However, I was growing impatient with my improvement and was also was planning on starting a new job in January 2016. I wanted a quick fix and wanted to be “grounded” for the job I was so excited for. I went to my doctor and he suggested going back on Lexapro.

A Kindled Brain

The first pill I took something seemed off. There was a burning feeling in my head along with a headache. I started to feel some increased anxiety as a result. My brain felt impaired. I don’t recall this feeling at all during my first go-around with Lexparo. I called my doctor and he said all of this was normal. Increase the dose. I did as I was told.

The burning increased. The head pressure feeling I had was horrific. I was scared. I called my doctor and this time the nurse said he was very frustrated with me. He said not to go off the Lexapro. That these were normal symptoms. I disregarded his suggestion and I went off the medication. The reinstatement was eight days in total. For the next three weeks, I dealt with horrible dizziness, head pressure, and confusion. For example, I backed my car out of my garage before it was finished opening, taking off my antenna and knocking the garage door off the track. My life was falling apart. I was excited to start the new job, but was now nervous I would not be able to do it due to my health.

The Lexapro Firestorm

Then Christmas Day came. The day my life completely crashed. I woke up with cognitive impairment, anxiety, and fear. I later found out the fear, anxiety, stress emotions are controlled in a part of the brain that the medication touches. I knew it was serious and from that point forward, I would never be the same. It was an electric, chemical feeling that was relentless. I was so wired with stress, that severe insomnia set in. After a few days, I went to my doctor, and at this point, he was tired of me. He called me a “complex case” and suggested I go back on Lexapro and suggested I see a psychiatrist. The last time I saw a psychiatrist was 15 years prior for the 3 weeks when I was put on Lexparo for “meeting nervousness.” I reluctantly went. She felt I was making up the symptoms in my head. She would not be the first person to tell me that. She also suggested I go back on Lexparo as well.

I went on disability with my current employer. I continued to decline. I went to dozens of doctors. No one understood. Some felt bad for me. Some said that meds could cause adverse reactions but no one would commit. Some thought just because it was an anti-anxiety med I had a problem with my mental health or I may be making up my symptoms. With no history of mental illness at 49 years old someone who is living the American dream comes up with a mental disorder overnight, the same week of reinstating a medication that is proven to rewire the brain, is it coincidence? I don’t think so. The chemical anxiety and head pressure did leave my system within weeks of stopping Lexparo, which was proof to me that this wasn’t in my head as suggested by some doctors and that it was caused by the medication. However, fatigue did set in, I imagine, due to the stress of all of this. I was eventually diagnosed with Chronic Fatigue and then Fibromyalgia.

One Year Post-Reaction

I wish this story had a happy ending. It is now December  2016 and the fatigue has worsened to a point where I am mostly bedridden. Watching TV is difficult. Luckily, for all you readers, I can still type. After months of frustration of getting limited knowledge of medication reactions, I started researching. I also discovered mitochondrial damage and neurotoxicity. From what I understand, it can happen from infections, chemicals and medications. I have found many like me who have had reactions from anti-anxiety and antibiotic medications, as well as vaccines. I am optimistic as I am currently having a dialogue with a neuropsychologist that actually believes in and helps victims of neurotoxicty. She seems to be in my corner which I’m grateful for. Its a lonely feeling being in this position. I also bumped into Dr. Marrs’ article on Orexin destruction from adverse reactions . I think this is may have been what has happened to me. The physical fatigue is one thing but the mental fatigue/sleeping pill feeling is what is the most disabling.

Based on the research, it is my theory, that I have had an adverse reaction or “kindling”. A kindling is a reaction or stimulus that causes agitation or anxiety, stimulating the brain for a period. Once the chemical (in my case, Lexapro) source is removed, the stimulation will eventually reduce, and the person, more than likely, will be left with severe mitochondrial damage. I wake up daily feeling as if I never slept; more tired than when I went to bed. I struggle to read or follow TV because of the impairment.

My lifelong dreams may be over or at least on hold for a while. When I explain to people what has happened to me they can’t believe someone’s life can be turned upside down by a pill. I am shocked that of the thousands of people I know in my situation, doctors do not know how to either diagnose of treat them. Instead, we are diagnosed with CFS or depression. What I am most shocked about is how doctors can prescribe these pills without understanding what they  do to the brain. Part of me feels this is “karma” as they say — like I sold my soul to the devil to take a pill that would improve my life in many ways, but ultimately, it destroyed me. I pray for a happy ending.

Articles suggest that people with TBI’s often end up with low orexin/hypocretin and excessive sleepiness. Articles suggest that people with suicidal depression often have low orexin. They also say that stress causes orexin deficiency. These same articles, as well as Dr. Marrs’ work, suggests that these levels can improve, by removing stressors and properly repairing mitochondrial functioning. I want to thank Dr. Marrs for allowing me to write this and share my story with you. I hope I didn’t frighten anyone with my story. I doubt “Dateline” or “20/20” will be coming to my house to interview me in the near term, but I do think there will be a day that there will be more public awareness of the damage medications can cause to the body.

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  1. I have been suspecting that Lexapro may be linked to, or the cause of, my recent diagnosis of Fibromyalgia. I have been on this med for about 3.5 years although I have taken other SSRIs in the past. The reason I suspect this link is because in Dec 2017, my dosage was increased from 20mg to 30mg due to some severe depressive episodes I’d been experimenting. That was about 5 weeks ago. In the last 3-4 weeks, my pain levels have been horrible. Prior to the dosage change, I would have 2-3 really good days a week (at least). Since the change, I have 1-2 ok-ish days.

    I have battled depression for 3/4 of my life. I have had stretches of years where I didn’t need medications and some stretches when I did. However, the pain is new (within the last couple of years) and I’m worried about how to proceed. How do I even approach either my GP or my psychiatrist about this? Please take into consideration that I also have Hashimotos Thyroiditis which causes hypothyroidism in me.
    Any feedback is helpful.

  2. Thank you for sharing your story. I was kindled in the late spring of this year with a combination of benzodiazepines and an SSRI. I didn’t realize it had happened until now as my brain is recovering enough to remember and put the pieces together. My brain is healing, but I have damage that persists, including problems with slowed cognitive processing, speech, short term memory, memory retrieval, decision making, multitasking, and math. On a basic day these things function okay but by doing them my brain fatigues and slows and then becomes increasingly difficult. I often will end up with a hangover like feeling after attending a social event and it can take days or hours to heal. I did start a ketogenic diet because I’ve read a number of articles about it being a brain healer. I do feel much better on the diet with much energy and limited brain fog. It hasn’t healed the other issues, as I suspect that damage is longer term, but I have heard about others on keto that healed. My situation is unique because I also suffered an adverse reaction and withdrawal syndrome to these drugs, so I need keto more than most.

  3. Hi I’m so scared after probably 17 years of medication from Paroxatine and I think 5 on escitalopram.. It all roles into one mind numbing blur (or us that just being an adult?) I’ve considered suicide (hanging a rope in my garage but too much of a coward to do anything) threatened to leave my wife and children, aged 16 and 10 and blamed it all on aspergers which I pushed for a diagnosis on (and got what I call an ‘outline’ diagnosis).So I consider daily coming off this stuff, they’re like headache pills or sweets to me now, as so shit scared of long term health issues-will they cause parkinsons or dementia etc?? Then I go on line and read this stuff-thing is every time I go to the docs, my wife and him find all the reasons to stay on them, work being main one and my pride in needing to be the man and bread winner. I’m so very very scared, for me my wife and children. I’ve seen more psychiatrists than you can shake a stick at and have even considered changing my sex such is my daily shame and confusion. HELP Please…

    1. David, it seems as though there are some root issues with the misery you’re experiencing that no medication would help. Though I suspect they blunt those feelings. Please find someone to talk to, not just medicate you. And if you decide to get off the medications, read up on the process, find a practitioner experienced with tempered withdrawal and go very, very slowly. Simultaneously, attack any weaknesses in your diet, nutrient deficiency and the like, so that your body and your mind have the strength for the withdrawal process. Do not do this alone. Do not do this quickly. Take the time to heal yourself. You will heal, but it won’t be easy or quick.

    2. I suffer from withdrawal syndrome from Paroxetine (SSRI). If you decide to come off please do it very slowly. If you notice withdrawal symptoms- you’ll know if you do, a 10% taper rate is recommended.

  4. Im so sorry for the problems you have encountered. I have experienced a lot of the same. I was started on anti-anxiety meds (xanax and ativan) first. Then they started me on the anti-depressants. I have trialed all of the over 23 years. I have recently completed come off 19 routine medications over a period of 3 years. I have lost everything. I had lost the ability to work before starting this process. Since coming off them I have lost my home, my belongings and have been homeless. IT is tragic and so ethically wrong. I hope our stories eventually gain more recognition of being more common than the medical profession wants to admit. Best wishes on your healing. Peace.

  5. Great article and well said. I have a similar story, yet my issues started with lyrica and celebrex, then cymbalta topped off the ‘insult to injury’ that almost killed me. I was starting to feel like all doctors were in denial when I found my pain dr. I had thought it was mostly women that were treated like they were exhibiting ‘its all in your head’ symptoms, that are so easily dismissed. It was getting involved in FB groups and learning from others that I got my best supports. Doctors are constantly telling people to get off the internet; are they feeling threatened? Honestly, I think I could be dead now, if not for FB supports!! My GPs idea of support; I was fired as a patient (no alternatives with a doctor shortage!). No doubt, I am better off without that kind of support, considering the ‘pill to take a pill’ mentality and the lack of informed consent or monitoring. Another issue that frustrates me is the downplaying of results; I don’t think brain lesions or spots on my liver are ‘normal for my age’!! The average GP doesn’t interpret on their own and diagnostic are very limited and compounded by denial. My pain dr once said that he didn’t feel anyone intended on harming me, yet there is a conspiracy in the denial.

  6. Hey everyone,

    What a nightmare we’re living in… been reading more and more about what anti-depressants do to all of us (long-term) and it’s actually crazy how these things are still legal.

    I am currently 30 yrs old, took Lexapro (Cipralex in Canada) for ~9 years for social anxiety, depressive moods, agoraphobia, etc. Looking back, I wish the “now-me” could tell the “past-me” to never touch anti-depressants, and let your own brain figure it out on its own.

    I tried quitting once around ~5 years ago but relapsed after 3 months due to major panic attacks and being unable to get sleep due to it.
    Fast forward till now, I’ve quit for 5 months and I feel like such a vulnerable human being… it’s insane.
    Literally feel like I am severely damaged mentally and it doesn’t feel like it’s getting any better.
    I’m ~95% depressed and ~5% ok which randomly triggers for no reason, then back to being depressed.

    It feels like Lexapro has damaged my body and stress threshold and other areas as well, that something small can trigger severe negative reactions which I can’t seem to shake off.

    I’ve lost 2 serious relationships in the past 9 years, both loving girlfriends; which I neglected and took them for granted because of the meds.
    Now I isolate myself from all my past friends and new people because partly, I’m ashamed of myself.

    I really wonder if the only solution is to start taking the drug again so these negative effects subside..

    Why has no one started a major lawsuit against these drug companies?
    They are literally taking the lives of so many individuals, while making millions+ from people who want help.
    These drugs literally take the soul of a person and act as if discontinuing them was a surmountable road bump.

    I don’t know what to say anymore.. but been feeling extremely hopeless.

    I hope one day, these drug companies pay for what they’ve done..
    But who am I kidding? Doubt they’ll have a new brain for all of us.

    Sorry for the negativity guys..
    It’s just frustrating to see us all here and countless victims being affected.
    But hey, at least we’re not alone.

    Just wish there was just a solution..

  7. Christian’s story is almost identical to mine-severe kindling adverse reaction to lexapro turned a very fit young man into a bed ridden shell who has to be looked after by his elderly father. Rapidly degenerating into dementia. Life utterly destroyed.

  8. I have a similar story to many of you. Came off lexapro too fast then tried to go back on half a dose for 2 days and had extreme severe adverse reaction with akastasia and burning brain and weird body jolts and so much more. Please if someone can contact me or tell me where to go or if anything has helped.

  9. Hi,

    Just wanted to close the loop on those who posted their comments. I was finally diagnosed with “Lexapro induced Toxic Encephalopathy” which is basically neurotoxicity. I honestly think the Dr who diagnosed me is one of the few brave enough men to diagnosis. I also was contacted by a production company who heard about my situation and was filming a documentary. I have my doubts that it will ever air due to reasons we all know so well. I wish you all well.

  10. Hello,

    I need help. I believe this may have been what happened to me. I was on Lexapro from 2013-2015 then stopped abruptly. I would take it again in 2016 and at the first pill, experience what I now believe is akathisia. It’s such an internal agitation, one wants to rip off one’s skin…I have been disabled now for a year. Before this, I was a professional as well as graduate student. I so need help learning if this is what happened to me and if there is any treatment. I’m so desperate; living in daily pain and torment.

    1. Kim
      Feel free to join our Facebook group called Neurotoxicity (Toxic Encephalopathy) Suppprt Group. Be sure to pick the right one. We have members who had toxic reactions. It’s a scary experience and you are not alone. Please post so I know who you are.

  11. Hello CF
    Thank you for your story. I wish I was one who could say that I am off Lexapro. Behold I am not. Your experiences promoted a myriad of questions in me. As I related somewhat in a similar fashion to what you have experienced before and after quitting Lexapro. I am at a stage where after 12 years of anti-anxiety medication including at least 8-10 on Lexapro more recently, that for me the stopping part is hardest to attain. My most recent doctor was surprised that I would be on a 20mg dose for so long. In his words ‘why don’t you just stop taking it’ ahah I said it is not as easy as that. The doctor felt that Lexapro and its varying doses are not designed for long term use but rather to provide symptomatic relief and used at times over short periods. It was suggested that other drugs can be used for long term but why would I want to go there? Not long ago I felt that Lexapro was not really doing anything for me and that somehow my body had become immune to its effects. However Lexapro has a way of winning out in the end much like Nicotine wins out over the smoker trying to quit. So I can give your dear readers something to relate to here are some of my most recent feelings while on my daily 20mg dose of Lexapro.
    If I lie on my bed after work to relax before dinner time my body feels like it is cocooned in a bubble or an invisible coffin which I want to break out of but cannot for lack of energy or tired trying to wake up lost emotions that never can be found.
    Time has become frozen to me. I live in the world and am a part of it but somehow feel like everyone has aged and got older but I have not. Where have all the years gone I ask?
    Lately I have had mini blackouts for micro seconds or feelings of falling backwards while sitting.
    I fidget when I do eventually go to bed at night rubbing my legs together trying to assure each one that the other is ok. Twitching my feet or rolling my toes forever it seems.
    I grind my teeth at night if I don’t wear my mouth guard or wake up with my mouth in strange contortions with front teeth one over the other.
    I have strange tension headaches that last for weeks on end making me feel like half my brain has turned off and gone to sleep.
    I spend extra time contemplating if the green light really has turned green at the stop lights.
    I too have enjoyed the wonders of my brain fizzing or crackling with sharp jolts of electricity as to celebrate some cyclical event.
    Or the lovely feeling of half my skull splitting in two over and over again.
    I feel I can sympathise with Stephen Hawking or people who are quadriplegic being trapped in their bodies unable to move.
    For your body wants to behave in the way it was designed but has been sullied by mans inventions.
    For now Lexapro is like my little friend I love and hate at times. Without him I am worse off.
    For now I have to live with him but not forever.

  12. My blog❕
    My Story:
    I was on lexapro for 7 years at 10mg decided it was a good time to stop at the start of last year. I went down to 5mg for 3 months, no withdrawals, the the doctor said I could stop, I decided to go day on day off, then a few days between, I started to feel small amounts of anxiety return aswell as some tiredness. My doctor said to go back on 10mg, I did, then with in a few weeks I started getting worse, my heart would race I couldn’t get out of bed, after 3 weeks the doctor raised it to 20mg i felt so posioned I didn’t eat for 2 months straight, I was in bed couldn’t even roll over, I kept going to the hospital they kept sending me home, my heart rate was 120-140 I had yellow diarrhea, I had to have people come and help me with my children, i hadn’t cuddles them for months. Then I said 3 months later, January this year, its poisining me. It has to be. Even though by then I was out of bed, I was still in such confusion and pain in the head.. couldn’t last out of bed for long and the anxiety was horrible.. I went to 15 for 2 weeks, 10 for a week, then tried Zoloft for a week had allergic reaction although the brain burning feeling had subsided.but couldn’t continue with the rash from Zoloft, then back on lexapro 5mg for 2 weeks, and every night I took that pill my brain felt like it was burning, 2 weeks later the doctor gave me Prozac. 5mg for a week, I started getting tingling in my feet and feeling spaced out. One doctor said to up the dose. I did once and felt worse. So I seen another doctor who said maybe your to sensitive now and need to stop medication all together, so here I am, 1 months out from lexapro, and almost 3 weeks out from Prozac. My eating came back. I eat now, my diarrhea has gone. The brain burning gone. But as the days go by, I’m feeling more and more brain zaps, dizziness, confusion. Migraines. Like this is 24/7 some moments better then others.. I mean is one month long enough to judge, will it only get worse? Does it take more then a month to feel better, I don’t know what to expect. I do meditation, I walk every day now. Don’t get much sleep as I wake up every few hours but I try lavender to help sleep. When will the physical (head) symptoms disappear so I can focus on being the best mummy ever 🙁

    1. I am now 2 months out. And believe I have had a kindled adverse reaction and I’m praying the neuroplasticity is real!
      I’m weak, my head hurts, my neck and jaw, my legs are jelly, I shake for no reason.. I’m off balance, the brain burning has reduced a massive amount since stopping. It’s just horrible. And I feel like there’s no hope.

    1. I have been on lexapro for around 9 years and recently came off about 6 months ago. Have been experiencing some ups downs but I’m still medication free. Really don’t want to go back on anything at all. I thought my discontinuation was pretty successful, but am concerned of the long term effects. Looking to connect with someone on here if possible an emaa

    2. Hello…I am desperately seeking help with my situation too; feel I was kindled from the Lexapro and it created akathisia-an extreme internal agitation….please connect with me. I’m desperate for answers and for relief if there is any…

  13. I hope you frightened a whole lot of people with your story because after 26 years of specializing in antidepressant adverse reactions I am really sick of hearing this same story over and over and over again with only the name being changed. Welcome to typical cold turkey antidepressant withdrawal. This is why at the top of our websites for two decades we have posted: “WARNING! Discontinuing or changing an antidepressant abruptly can be more dangerous than continuing on the medication.”

    You will be interested in learning several things about SSRIs. First is that they drastically increase Cortisol. A study done by Lilly on Prozac found that one single 30mg dose clearly DOUBLED the level of Cortisol! I have been shouting that warning via my book, “Prozac: Panacea or Pandora? Our Serotonin Nightmare,” radio and television interviews, blog after blog, etc. for two decades. Why? Because as most know such a drastic and prolonged increase in Cortisol can produce a myriad of health issues including depression – the very indication for which these drugs are given! They are literally causing what they are being promoted to cure!

    You are correct about kindling which I also discuss in my book on this family of antidepressants. You will find many answers on our website at http://www.drugawareness.org where my dear friend Dr. Candace Pert served on our Board of Directors from 1997 when she publicly referred to these drugs as “monsters” she wished she had never had anything to do with their development until her death three years ago. You will want to read more about her there.

    We also have several Facebook groups you will be interested in: “Lexapro Should Be Illegal,” “Antidepressant-Induced Fibromyalgia,” “Antidepressant-Induced Adrenal Fatigue/Failure”

    We also have many alternatives we have found over the past 2 1/2 decades which have proven to be quite helpful in rebuilding and even in reversing the brain damage that can come from antidepressants.

    1. I would love to talk more about this with you. I’m 25 and having all symptoms of of adrenal fatigue. I have been on Lexapro for almost 5 years and am still taking it for fear of adverse effects with discontinuation. I’m lost, and I’m scared. My doctors and therapists have no idea what to do with me. I realize its been a while since this post and your comment, but I pray this gets to you regardless.

      1. Kat, you can find me in my neurotoxicity (Toxic Encephelopathy) support group on Facebook. I am Christian. I’m an admin. pM me there.

  14. Hi CF, Thank you for your honest story. I left my marriage to a loving man in the same way you describe, while numbed out from benzodiazepine. I didn’t realize my massive mistake until I discontinued the drug. I am very active in the pharma injury community. Find me on FB. I shared your story today and it has sparked a big discussion you may be interested in. It takes time to heal from a CT (cold turkey) and further kindling from a reinstatement. Give it time and support your body comprehensively to assist the brain’s healing. You are surely not alone in this agony.

  15. Thank you for writing your story. I especially could relate to these lines: “At the time, I wanted to be free. In so many ways, in my mind, I was an improved person. It wasn’t until the last year that I realized how wrong I was. I took Lexapro for 15 years. I never looked back. Until now.”

    For me it was 17 years. It is criminal to take someone’s life like that and destroy it. Looking back and realizing the destruction left in the wake of psychotropic medications. This is providing me with a cruel enlightenment of lost decades and the recognition of the emotional devastation to those we love but wasn’t able to.

  16. I found your article very interesting considering I just had neurotransmitter testing and a brain scan called a NeuroRead processed by evoke neuroscience. I got this done totally on my own by a doctor I had never met or heard of because I was getting no place with my own doctors! Now she’s treating me with supplements to heal my brain because I do have brain damage. So you might look into it? Evidently I’m producing too many antibodies in my brain.

    1. Hi, you could help us by telling us what kind of blood test did you do exactly for show antibodies in your brain? And what kind of supplements do you take for heal your brain? Do they help in any symptom?

      I also suffer from brain damage caused by only 11 pills of escitalopram poison which I took almost two years ago.

      Thanks for your help!

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