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.

6 Comments

  1. 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

  2. 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.

  3. 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

  4. 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.

  5. 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!

  6. 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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