pill withdrawal syndrome

Hormoneously Alone: Pill Withdrawal Syndrome from Hell

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It was two months since I had stopped taking The Pill.  Might I add, I hate how culturally grammatical we have to be when we write, “The Pill”.  THE Pill is how I read it; it’s 2019, and it all still seems so covertly retro. Anyway, it is hard to go back in time because the thoughts of what transpired the year I came off The Pill still overwhelm me. I had never really agreed with the notion of loading ourselves with synthetic hormone, and in fact, for 70% of my sexually active life, I used other very successful methods. Regardless, I was in my early 20’s, and like most, decided to hop on the Pill for a couple more years until I knew I had found the guy of my dreams. Well, the time came, I was in a great relationship; I felt safe and comfortable emotionally, as well as financially, and I made the choice to come off.  I popped the last little pink pill on January 19th, 2017. Fast forward to March 10th, 2017 and here is where it all started.

Peripheral Nerve Symptoms

I woke up with severe, I can’t stress the word “severe” enough, pins and needles in my hands and feet. That feeling you get when you lay too long on a limb, numb it out, and then feel the tingling- that feeling.  So, I thought I had slept weird, and continued on with my day, but by night, the severity hadn’t changed.  I woke up the next morning, still feeling this tingling but it was now accompanied by extreme feelings of weakness in my arms and legs. The strange part was that I wasn’t actually weak. I was able to lift heavy items like normal, it was just the feeling of weakness. Did I have a stroke?  This is where the anxiety started to kick in. I have struggled with anxiety my whole life but over the next 3 months, I had never experienced such an extreme form of anxiety and depression like this. I was in the prime of my life, 25 years old, and I had never felt worse. I had this intense tingling in my hands and feet, weakness throughout my arms and legs, and an unremitting dismal and gloomy cloud following me. I started to research, and although mistakenly started to self-diagnose with brain tumors, Multiple Sclerosis, Lupus, Autoimmune, I ultimately thought I was deficient in electrolytes or vitamins, and bought a Gatorade. Well, that didn’t help either.

Brain Fog and Depersonalization

I decided to take a few days off from work, get a massage and do a few yoga classes. It was a week since these feelings started, and the brain fog was coming in strong. If anyone has ever had this brain fog symptom, I would almost say it’s more debilitating than depression itself.  The cloud of depression that hangs over your head is now in your head. Brain fog is like depersonalization, you’re really not sure if you’re even here on this earth, you feel so distant and detached from life, it’s scary. The massage helped me feel a bit better, not so tense, I was able to take a few deep breaths and have a few seconds of peace. When I went into the yoga classes, I would sit in the back. My goal was just to breathe and relax my body and my mind.  Well, the second the teacher started, I had waterfalls of tears flowing out of my eyes.  Until this day, I couldn’t tell you why that was happening in each class but if that’s not a major sign of depression, I don’t know what is.

Buzzing Bees in My Spine and Brain

The tingling and weakness wasn’t going away. It was now the end of April and my period was two weeks late. I then started to wake up in the middle of the night with a feeling of buzzing bees up my spine and in my brain. The feeling was so off-putting and disturbing, I couldn’t fall back asleep.  I would get hot flashes- peri-menopause? At 25? No way. My eyes would randomly hurt. My teeth would randomly hurt. I would have crazy sinus issues. There were times where I was so tired I would take the day off because I couldn’t move. I felt debilitated. I was not myself. I even thought about going on disability.

Could it be the Pill? Absolutely Not, Says Every Doctor.

All my life healthy, I was a kickboxing instructor, an everyday gym goer, something was just not right. It was time to go to the doctor. Getting an urgent appointment with the Gyno is nearly a battle in itself, especially when you call and say, “Something weird is going on in my body, I’m not sure what it is”.  Next appointment, 3 weeks away. So I went to the walk in clinic near my house,  blood pressure: 150/110, I had never seen such high numbers.  Diagnoses – anxiety, solution-anti depressants. No thank you. Something more was going on inside. I have been getting my period almost to the day since I was 12 years old, that’s 13 years of consistency. I’m not pregnant and 2 weeks late? No, something is wrong hormonally.  I went to my primary care physician, they did blood work, checked me up and down – nothing.  Again, my blood pressure read: 145/108, diagnoses-anxiety, solution-relax. I went to the Gyno, and was told “there’s no way these symptoms are from coming off The Pill.”  Shocked, I asked why it couldn’t be, she replied, “The Pill is something that needs to be taken every day because it gets metabolized within 24 hours, so if you haven’t taken a pill since January, it’s no longer in your system. You should get other testing done.”  I know that, I did that, but trying to convince someone with a much higher education in this field, an expert in fact, was going nowhere. I knew it was up to me to do my own research and trust what my body was telling me.

Women Know Better

I hopped back online and googled, “hormonal imbalance symptoms”, “after the pill reactions”, “what birth control really does to you”- the list goes on. It had been four months since these symptoms started.  I finally came across an amazing blog post where there were 10 pages of women expressing the same symptoms as me after coming off the Pill. It was the most comforting moment of my life. I knew I wasn’t making these symptoms up. This wasn’t all anxiety. This was real; for me, for them, for everyone who had come off the Pill and felt a huge difference in their body. In my adult years, I shied away from publicly posting my feelings and connecting with people virtually, but, I felt like if I didn’t participate, if I didn’t help, that would just be immoral and unethical.

What was interesting to me was that we all initially thought MS or brain tumor. All of our symptoms happened about two months after we took the last pill and all of the symptoms lasted on average 8-9 months.  Almost all of us had blood work, CT scans, MRI’s, and all of us came back negative on every test. We exchanged advice about best foods, herbs, and practices that were helping us, and consoled each other in this grueling sea of unknown. Every one of us were told that it wasn’t due to coming off The Pill, and every one of us didn’t believe it. It was from The Pill, it is from The Pill.

Ultimately, this takes time, a healthy lifestyle and patience. Some doctors will say, go back on the Pill to help it, but that seems counter-intuitive to me. When this reaction becomes so real and tormenting, the Pill is the most frightening thing and the furthest from the cure or the answer. I’ve researched endlessly for the past two years, and only recently see the term coined, “Post Birth Control Syndrome”.  It’s catchy, for sure, but the description isn’t quite as accurate.  There are weirder, stranger symptoms that happen than just the irregular periods, acne, and weight change; that to me seems like it skims the surface, that’s easy stuff comparably.

I’m happy to report that I feel back to normal, but this experience will never leave my mind.  Through it all, I feel the injustices for women are brought about because of a terrible patient care system with limited time and awareness in an ever turning patient revolving door. I wrote a documentary in 2018 entitled, “Hormoneously Alone,” that I have started filming to shed light on these issues among others involving The Pill.

We’re all in this together, but with the lack of education, awareness and openness, we all may as well be alone.

If you or someone you know has had similar experiences coming off of the Pill, or if you would like to share your story, message me here, I would love to hear from you.

In Health,

Raquel Latona

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Raquel Latona

Raquel holds a Masters in Law with a focus in Healthcare. She is currently filming a documentary, 'Hormoneously Alone', to shine light on the unspoken issues amongst oral contraceptive users and the patient care that accompanies it.

38 Comments

  1. Raquel, when is your documentary out? I’m keen to watch it. Also, I’m 7 months in and I’m left with only brain fog, good days ans bad days but did it last this long for you? It’s the last symptom that’s bugging me as you can probably tell! Xx

    • Hey Jamie,

      Thanks for writing. It should be done within the next 2 months. I’m super excited (and nervous) to share with everyone! So many women have reached out about it and I hope it helps as many people as possible.

      A lot of people wonder when the symptoms subside or go away completely. For me, I noticed a huge change at 9 months. By a year, I felt pretty much back to normal. It’s a very long process for most, but you will get through it. Sending health and happiness your way. -Raquel

  2. Hi Raquel

    Thank you so much for sharing your experience! This is exactly what has happened to me. I am now 6 months post stopping the pill and feeling so much better but still experiencing some of the symptoms. I also thought I had MS and even spoke to my GP about it. Hearing these stories has encouraged me to continue being patient with my body and allow it to recover. I second a good diet, supplements, gentle exercise and sleep.

  3. Hello everyone,

    I wanted to share my little story of taking pills. In 2018 I started taking my first pill because I was having menstrual delays due to lack of estrogen. I was prescribed Drospifem 30, which I tolerated well for 10 months. Since it was my first pill, I was supposed to go for a checkup at the 10th month.
    The doctor: are you ok? Do you have any complaints?
    Me: everything ok, only, I get stitches in my abdomen 2 hours later after taking it.
    Doctor: Ahaaa, then dose 30 is strong for you. Let me prescribe you dose 20. It is the same active ingredient from another company: Xellia 20.
    Me: yes, sure. It works.

    I was supposed to start the new pill right away, which completely destroyed my mental life. The problem was that I had only been informed of the physical side effects, and since I had tolerated the first one well, I didn’t even think along the lines of it destroying my psyche.

    2 weeks later I had severe depression accompanied by depersonalization, derealization, borderline personality disorder, crying fits, severe panic attacks, suicidal thoughts, I was out of my body, I no longer recognized myself. OMG, I was disconnected from my body and looking at the world through a veil. Thank God, my sister was with me and told me it could be because of the pill. Until I understood that these symptoms were from the pill, I was unknowingly making myself sick by reading false information about my symptoms and definitely didn’t want to believe it was because of the pill. I was on this drug for a whole year and after stopping, the symptoms were partially gone. Currently my body is in the adjustment phase without the pill. I am doing very well. After a month I am almost back to the old Sona with a little strange feeling, but hopefully it will get better and my mind and body will be in harmony again.

    Please be careful because the strong change of dose of estradiol-drospirenone can trigger such symptoms and problems.

    So, my dear ones, it was my story that will always stay with me. Hopefully, when my body completely recovers, I will be berfreit of these memories as well.

    Stay healthy!!!

    • How are you doing now? How long did it take for your head fog / depersonalisation feeling to go away? X

      • There is still 30% brain fog. I am now in the 3rd month of self-healing and feel much better. It is only after 2 or 3 months that the body realizes it is not getting synthetic hormones and starts to recover on its own. I am now suffering from severe peripheral nerve symptoms and sinus problems.

  4. Thanks so much for posting this, I spent all day googling “brain fog after quitting the pill, out of body feeling” and all the variations, and this post is the only one that recognizes the impact on mental ailments when it comes to the pill. I had a bad episode today and its still kinda there, after stopping the pill 2 months ago. I had to take a pill today to quell the symptoms, I guess it kinda did or maybe its just the “placebo” effect… who knows. But I hope this doesn’t go on for much longer. I knew it had to do with the pill because I had tried a couple years ago to get off of it but gave in and went back on because the symptoms were just too much to handle. How long did it take for all of you to level out and see the brain fog and depression and anxiety to subside?

    Thanks

  5. I’m sorry to hear so many of you are suffering. Stay strong and know that it takes a while to feel back to normal. You will get through this! Although I’m not a doctor, I can confidently say that if everything has been checked and nothing is found, and the only factor left is the pill, it’s the pill. I’ve met and have spoken to so many women with issues related to the pill or some other form of hormonal intervention and it is so sad the lack of knowledge and science that is out there. Unfortunately, doctors by nature need to label illnesses based on what they’ve learned, and that’s it. If they didn’t learn it, it’s not “real”. The effects of coming off the pill hasn’t been studied enough which is why we need to continue to advocate for better healthcare and research for women. Treat your bodies well, exercise, try not to eat any foods with added hormones or anything that can alter your hormones; meat, dairy, alcohol. AND SLEEP. Sleep is so important for restoration and rebalancing. I wish you all well, and happy to hear my story helped so many of you. Stay strong. – Raquel

  6. Im so thankful I kept searching for answers. I bant believe only taking birth control for 4 months has affected me so badly. I was taking gianvi. I loved it til I started noticing depression and major anxiety.
    I called just like you and made appointments with doctors where they all look at you like your crazy until one woman listened and agreed it was the birth control. I’m also thankful I found this post . I was feeling tingling in my face, lips, arms ,legs, hands .. weakness, tired, hair falling out, crampy feelings ..
    I’m hoping this goes away soon . You gave me hope

    • Hi currently wondering if you’re symptoms went away, Currently I felt tingling in my face, lips arms, legs it did go away but now it back. Once I decided to get back on estarylla the tingling started I will never take this medication again. Hopping I get back to normalcy!

  7. Hi I’m 28 years old and I had a the birth control that goes in your arm for about 3 year but I started feeling bad after I took out like 2 months after I was getting anxiety attack and panic attack I was getting tingling all over and muscle weakness as well I have 3 kids and the prescribed anti anxiety medicine even though I didn’t want to take it my kids needed me and I was wondering what cause this to me was I going crazy did someone put something on me I was so scared I’m still scared because the health is very different when it come to these things I’m still trying to pick my self up right now and trying to figure how to heal my self because Gyn don’t think it effected me in anyways so she don’t want to do hormones testing which I think is a good way to go now I’m getting off balance feeling while I’m walking like I’m on a elevator and he suddenly stops I don’t know what that about but it start after I had my panic please can some one give some advice please

    • I have experienced the exact same thing. If anyone needs to chat to me please dm me on my Instagram as I’m always on there. Basically I got my nexplanon out in aug 2020 and Iv been going through hell just as u ladies explain. I also have a 4 year old. And I’m now also pregnant with my second child which was the whole reasons I got the nexplanon removed. What your all experiencing is post birth control syndrome. Everyone is different and everyone’s symtoms will vary in how it affects you and for how long. My biggest problems, were sever anxiety; panic attack, fatigue, hart palpitations, and now I’m left with just the fatigue which is bad in inself. I’m finding comfort in the fact that our body’s are so clever and WILL balance out it can take time tho, what I’m readin around 8-10 months. But everyone is different. I know it helps to have someone who is going through the same to talk to so I’m on jamie_josephine – please breath , take care and perhaps take a hormonal balancing herb or something, I did as well as magnesium. But make sure it’s safe for you to do so. Remember most Drs will deny as that seems to be the trend!!! Xxx

  8. Thanks for writing this. Currently struggling with high blood pressure and anxiety three weeks after being on the progesterone pill. I only took it for a week! Interesting to know if anyone else has struggled with their blood pressure and how long it took to regulate. Thanks

    • Hi Mo

      I took the progesterone only pill for 3 weeks and also struggled with anxiety and high blood pressure (as well as lots of other horrible things) after stopping. That pill really messed me up but I am recovering. The anxiety lasted for months unfortunately. 6 months on it has pretty much gone. Hopefully it goes away quicker for you! I suspect your blood pressure will calm down as your body starts to recover.

  9. Thanks so much for this post. It’s been the only thing giving me hope I’m not crazy. I also have been off the pill for two months now and my symptoms mirror yours. While I’ve had anxiety my whole life I was convinced that this was different. Part of this was more than that and every doctor told me that it’s all anxiety and didn’t seem to take my symptoms (which have been scaring the hell out of me) seriously. I really just want to get my life back and hearing all these stories makes me feel I have control again. Thanks so much for the hope you’ve given me you for sure are making a huge difference!

  10. I am currently experiencing the very same symptoms after being on the pill since February. I didn’t have much of a fun time on the Pill itself, and they tried me on 3 different kinds. I’d finally had enough and stopped around the beginning of September. Since then, I’ve suffered from the usual – headaches, sore breasts, heavy periods etc but about a month ago, during my first period after birth control nerve issues. Started with tingling in my inner thighs and then pain radiating down my legs. Now I have weird sensations in my right foot and pinky, ring finger on my left hand. They are usually worse close to menses. I too searched Dr. Google and thought MS. I suffer from anxiety and this certainly did nothing to help. I also noticed a rash under my arms that still lingers. It’s red just before my period and for a few days gets petechia. Then disappears. This started on the Pill. I believe I have a hormonal imbalance but I’m getting nowhere with the doctors. My doctor took the same Pill I was last on and loved it so she dismisses any negatives. My eyes have also not felt right, like a mild pressure behind my right one and sinus pain. I don’t know what they did to the Pill, but it’s not okay. It’s a huge relief to read similar stories although I feel for all of you.

    • Hi Claire,
      How are you feeling now? I just come off the Pill on 11/28/20 since then started tingling in the whole body then my hands and feet. I’m 34 years old never had health issues before. My doctor isn’t helping at all. I don’t know what to do anymore. I really just want to get my life back.

      Thank you,

  11. I’m so relieved to read this post. It’s hard because I feel like there’s nobody that understands what I’m going through. I’m 27 now and I was on the pill and the implant together for a total of 10 years. I recently went off the pill last month and felt fine for a two weeks or so then I started having major sinus pain and it was severe to where I went to the ER twice but doctors said it was allergies after giving me several antibiotics in case it was an infection. The first time I went I had an anxiety attack which I hadn’t had one for years and it hit me hard because I was in pain and having to wear a mask and go to the ER without my husband with me just terrified me because of everything that’s been going on I didn’t want to be alone. It was so bad to where my legs were shaking and I was hyperventilating and I felt dizzy and out of it. Then a few days later I got this dizziness in the shower which felt like I the whole room moved and have been feeling like that for now a month. I can’t tell you how much this has made me feel to where I cry at least once a day because drs have been just writing me off and saying it’s anxiety when I know there’s more to it. I’ve seen two ENT. Two primary care doctors, allergist, eye doctor, and now I’ll be talking to my OBGYN to see if it’s because of my hormones. All my bloodwork has come back normal. I’ve done a CT scan and now I’m getting an MRI. I was a healthy person before all this and now I’m suffering with what they think is vertigo. I hope you guys all feel better and pray that I will get back to normal. It’s not fun because you feel like to everyone else that your crazy but you know your body more than anyone else

    • Hi Ariella,

      We have almost identical stories! I’m 29 and had been on the pill for 12 years with minimal breaks until this June. I lost my job and therefore health insurance and after 2 weeks of being off the pill i got hit with my worst vertigo attack ever. i got back on the pill for three months thinking it would help before deciding i was done for good. the dizziness hasn’t gone away, the fatigue is terrible and tests show barely anything. i’m working with a naturopath now to try and help and i have low iron, vitamin d and a slight hormone imbalance. i’m hoping like everyone else in about 8-9 months it resolves itself but as of now it feels like nothing is getting better and i’m losing hope. Are you feeling any better yet?

      • How are you feeling now hon? For me the cloudy brain/heart beating fast at night is still here – my nervousness and anx has mostly gone but this head and heart is very much not normal for me. And I’m x6 months in.

        • Hi Jamie! Things are very slowly feeling better. I can tolerate a little more exercise and the brain fog seems to be gone- it’s mainly the dizziness I’m left dealing with. Every day I feel more like myself but I maybe only feel about 65% right now. It’s been about 6 months for me and I’m hopeful that at about a year it’ll be over, just trying to be patient! For me the dizziness is the worst, it’s not a spinning feeling (except for maybe the first day of my period) but more of an internal dizziness and rocking feeling. Incredibly uncomfy and seems to be triggered by almost anything; too intense of a workout, gluten, lack of sleep, stress, etc. I’m also oddly dealing with some low blood sugar issues around my period. I think all of these things though are signs of my body trying to get it back together so trying to give myself some grace. The anxiety, crippling fatigue, massive hormonal chin breakouts, and puffy / swollen body and face seem to have passed so I think we’re making progress!

    • How are you feeling now? For me after almost x 6 months of this
      Still left with dizziness/brain fog and sometimes at night heart palps and shortness of breath. Just wondered how everyone is getting on … xx

    • How are you feeling now? For me after almost x 6 months of this
      Still left with dizziness/brain fog and sometimes at my heart at nigh races and shortness of breath. Just wondered how everyone is getting on … xx

      • Hi Jamie.
        I was reading your story and which is similar to mine. I came off the mini pill in August 2020. I was only on it for 3 weeks! But it really messed me up. I believe the progesterone only contraceptives are the cause of these side effects. Like you I am 6 months off it and doing so much better but still mild dizziness, brain fog and anxiety. I’ve been taking vitamin c, an all round vitamin and magnesium. I hope you are feeling better.

        • Lorraine!!!! So so nice to get a reply! Thank you!!! I would love to stay in touch and compare what works for what symtoms and exchange advice etc… it’s nice to have some support. I wouldn’t want to give out my number on here so please if your on social medial send me a dm! I’m not on here everyday and on there more often. My Instagram is @jamie_josephine but encase your not on social I’ll check back on here again soon. I’m doing ok I must say, Iv managed to banish my anxiety and panic attacks but it’s this brain fog that’s driving me insane the most. Almost like there is a glass window between me and the world and I just can’t remember what I’m doing ! Xxx

          • Hi Jamie! I’m glad we can all support each other on here! I am really starting to feel like my old self. Last big thing for me is mild dizziness but it’s fading. I know how you feel with the brain fog. It was horrendous. It will go! I cannot believe how messing with your hormonss can make you feel. My situation was complicated by anaemia so I’ve also been on iron tablets for 6 months. I’m not on ig but happy for you to email me at thierryfan@hotmail.com xx

  12. Hello! I have to say how relieved I felt when I found this post. Though my experience is due to taking hormone replacement therapy (and now going through withdrawal and feeling like I am losing my mind and my self), this post helped me feel much less alone. I have searched and searched for any posts on experience with this – many women are told that their fatigue, low libido, etc is due to low testosterone. I am 39, pre-menopausal, and not taking birth control (copper IUD). I believe that my issue was due to hypercortisolism, undiagnosed, but instead was given a “bandaid” which certainly did boost my energy, mood, strength, cognitive ability and libido. But I was now reliant on testosterone every 3 months. When it would begin to decline, I could tell as the side effects were fairly severe and I really couldn’t function without it. That scared me. My body was telling me not to continue. Just as it had with the BCP. I listened. Now, I am having side effects so severe that it is difficult for me to get out of bed, I have the brain fog you described perfectly, I stood in the grocery store with memory loss for longer than I ever have in my life (scared the crap out of me). Depression and anxiety are real, lack of will, motivation, joy, sex drive, interest in anything is upon me pretty heavy right now. Luckily, I am a current student of Traditional Chinese Medicine and Acupuncture, though going through this while in grad school is no easy feat. I have a wonderful herbalist (who is also one of my teachers) who specializes in OBGYN and has worked with other women who are attempting to wean off of hormone dependency. It will be a long process, but I am willing to take it. So far, I am happy with the support these herbs are giving me. I am surprised that I have been unable to find any information pertaining to this experience online. I just want to say thank you for posting this so we can feel less alone. Hormone therapy of any kind is something that should be used with caution, intuition and proper education. Just slapping the birth control pill or any hormone replacement in someone’s hand is not proper care. I feel for everyone going through this right now. There is “the other side” of this! It just takes time. Do not lose hope.

    • I’m 65 and have been on estrace vaginal cream for years. Recently had a bad infection from cat bite and major antibiotics given which in turn caused a yeast infection that took two months to resolve all with doctors help. I am now allergic to estrace and the withdrawal symptoms as all above have described. I feel like my head is going to explode. My doctor suggested putting the cream on skin which goes directly into your bloodstream and causes high estrogen.
      What herbal help are you taking if you don’t mind me asking, I’m desperate!

  13. I had extremely debilitating symptoms from an IUD and three different gynecologists told me it was not the IUD.

    I thought I was crazy. It’s so challenging when you know something isn’t right but you second guess yourself.

    Once I finally took the IUD out, I felt like myself again in about three weeks.

    Depression, anxiety, there are so many things that hormones are the cause of or at least exasperate. It’s not talked about enough

  14. The side effects can be so bad, I hope this article helps other women get help for themselves, and not get dragged into unnecessary and expensive tests and extra drugs. Very interesting.

  15. Wow. I can so relate to all of this.. Except for i didnt use the pill, i used progesterone cream.. And when i did quit, i had this severe reaction starting about a month after i february this year.

    My skin is burning, all over torso like I rubbed myself in chilli. And pins and needles in hands/feet, arms and legs. My spine/body buzzez like you wrote.. And this severe fatigue. Like i need to sleep asap on and off thru the day.

    DP and brainfog. All of my symptoms getting worse everyday now.. How long did it last for you? Im bed-bound now :/ And can you recommend any websites of forums that talk about this? All i get when i Google are headaches and stomach issues. Not this with nerves and psychological stuff.

    Thanks for sharing your story!

  16. What are they doing to our medicines???? I am 62 years old and I took the Pill, and other drugs in my life. Drugs used to be safer. And they actually did what they were supposed to do. I lost faith in the FDA, AMA, and you name it when I had a violent reaction to Lupron at 40 yrs. old. I have not be well since. I believe after years of research the only explanation is it damaged my mitochondria and I will never, NEVER be the same…….read my article in Hormones Matter April 2016 for full story.

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