I’ve told my story about my experience with anxiety and insomnia a few times here on the blog (and here’s a post describing my favorite resources for overcoming it)… but I’ve never told it completely, in full. Plus, I keep learning more about what happened to me, so I keep developing a better picture of what’s going on.
Below is more of my story. I am sharing it with you mostly because I want you to know that health is not easy for any of us, health bloggers included. I also want you to know that you are not alone in whatever struggles you face. And also I want to give you hope, because I had no hope. I never thought things would get better. But then they did. They really, I still can hardly believe it, did. They’re not perfect these days, but god, they’re so, so sweetly better.
Here it is, my life on a plate:
After I spent a summer in Italy living off of almost nothing but cheese and being incredibly skinny, I developed a serious case of acne.
For years afterward the acne was nearly impossible to manage. Some days I didn’t even leave my room, because I didn’t want to inflict my appearance on people. I was doing them a service, I was convinced. I did my best to fix the acne (I even ate paleo!), yet nothing appeared to make much of a dent at all.
(If you are struggling with acne, I have an awesome FREE guide on clearer skin in 7 days, all you have to do is sign up for my newsletter!)
Deep down, I knew that I had to gain weight to be healthier and to clear up my skin. But I didn’t want to. “Please don’t make me get fat, please don’t make me get fat” I’d chant over and over again in my head sometimes while going to sleep. I had the “ideal” body. There was no way I was going to give that up, come hell or high water.
In January of 2012, I was desperate enough to stay thin and clear my skin that I tried prescription meds for the acne.
So then came the hell, and the high water.
The drug I took is called “spironolactone.” Spiro was not originally designed to treat hormonal acne. It is, in fact, a blood-pressure medication. It also just so happens to have a dampening effect on male sex hormone production, so it is often prescribed off-label to women with acne.
WebMD lists spiro’s potential side effects as dizziness, drowsiness, lightheadedness, stomach upset, nausea, or headache. Not too bad, right? BUT it also warns that spironolactone can cause potassium levels to build up in the blood. If this happens, muscle weakness and heart failure may occur.
To prevent this disastrous possibility from killing off wide swaths of the female population, doctors usually insist on getting blood potassium levels tested before prescribing spironolactone.
I got my blood tested a few weeks after going on spiro, and my potassium levels checked out “fine.”
In February of 2012, I stopped sleeping well. In fact, I almost stopped sleeping completely. To be fair, I have always been a poor sleeper, having to wait several hours some nights to fall asleep. But this February brought, for the first time in my life, entire nights without sleep. I will never forget my 8:00 am seminars every Wednesday morning on one hour of sleep. Nor will I forget the terrified and confused tears that came later in the afternoons. Nor will I forget the morning I had to take the GRE on 25 minutes of sleep. Nor will I forget the tears of exhausted frustration I wept for days after. (Still aced it, btw!) These are tears that I still, to this day, experience after a poor night’s rest.
I also developed a severe case of anxiety. To be fair, again, I have always been a bit neurotic. But this February, for the first time in my life, I laid awake in bed at 3am and felt the ceiling collapsing down on me, suffocating me, with my heart racing, desperate and afraid. Afraid doesn’t cut it. Panicked. Terrified. I’d call my mother sobbing. “I don’t know what’s wrong, I don’t know what’s wrong, I don’t know what’s wrong,” I’d gasp. She’d talk to me and tell me everything was okay for hours, sometimes until the sun came up. At which point she would leave the house for her full-time job.
My mother is a saint.
I stopped taking thyroid meds. I guess that helped. My potassium levels continued to check out fine. Plus, for all the thousands of reviews of spironolactone available online, .02 % (there are more than 1000 of them, and I found 2) of them mention anxiety as a side effect. None mention insomnia. It seemed it had to be something else.
Yet finally in June I was at my wits end. Even though I was scared shitless to go off of Spiro because my acne would come roaring back, I went back to my mother’s home in Michigan, hid my face in my bedroom, and did the experiment. I went off the spiro.
The anxiety calmed. The sleeplessness abated. Somewhat. I breathed. For the first time in four months, I breathed. Relief was on the horizon.
Then, on the evening of June 20, I did not sleep.
Nor did I on June 21.
Or June 22.
I crawled into my mother’s bed, crying. I got a few hours of fitfull sleep.
I had to come back to Boston. I didn’t want to. But work called. My life called. I wasn’t about to let my insanity destroy my life.
From there things got nothing but worse. I would lay on the sofa with my heart beating like a jackhammer against my rib cage. I felt claustrophobic and trapped. I’d keep the front door wide open, and I’d lay there and just hate how few windows there were in the living room. I felt overexposed. I’d go outside, and I’d hate how open the sky was.
I couldn’t win. Nothing felt good.
I’d try to pick a shirt to wear before work in the mornings, and was it blue or red? 20 minutes and a panic attack later, I’d hyperventilate my way out the door in one color or the other… of course it didn’t matter, in the end.
I don’t know how to explain the intensity of anxiety to people who have never experienced it. I wouldn’t wish it on my worst enemies. Perhaps this’ll put it in perspective: Sometimes I suffer debilitating migraines – the ones that make you throw up and kind of wish you were dead they hurt so bad. Today, I don’t know if I’d rather have the migraines or the anxiety.
What anxiety does to a brain like mine is astounding. I am a human being who weighs every pro and con and implication before making a decision. I see and I know very many things. Already my neurons are a web of highly nuanced, carefully chosen concerns. The horror of anxiety is that it sets them on fire.
Thoughts race in a million directions. Every question makes more questions arise, and the most horrible of them rocket to the surface and drag you cartwheeling down their own sinister nightmares before you can take just one breath. It is relentless. And hopeless. And endless.
You know that feeling where you’re nervous, and your heart starts to beat like a bass drum on speed, and you can feel it in your chest and maybe even sometimes in your ears? My anxiety’s partner in crime is a heart on a murderous rampage. The palpitations never go away. My heart’s its own monster, it’s own hell. It really beats so hard. At least it used to. These days it doesn’t happen too often. And yet again – it is nothing compared to the anxiety that rides wild on its back.
With these kinds of health issues, it’s nearly impossible to make a decision without being paralyzed by fear. It’s nearly impossible to calm the body enough to sleep. It’s nearly impossible to see anything but relentless terror in the future. I think I’ve probably made this point clear.
Which is why, in August of 2012, riding my bike down Massachusetts Avenue to an acupuncture appointment, of all things, I very, 100 percent sincerely, for the only time in my life, genuinely wanted to stop living.
This was the first time prescription drugs almost killed me.
The second was perhaps a week later. I finally re-connected the dots. I looked at the symptoms of high potassium levels — heart palpitations, shortness of breath, muscle weakness — and thought, “holy hell, I’ve still got it.”
I checked myself into the ER. They took me right in. My pulse, they said, was shockingly hard and fast.
Yet in the ER, my blood tests came back fine. My EKG came back fine. Everything came back fine. I snatched my test results out of my attending physician’s hands and knew right away that my electrolyte levels were fishy, despite his insistance that they were fine.
I gave up sodium for a day or two and felt a bit better. Every once in a while I’d do that and feel a bit better. But nothing improved.
10 months of chronic anxiety, panic, heart irregularity, and sleepless nights later, I realized that my symptoms lined up perfectly with those listed for magnesium deficiency, right down to insensitivity to noise. (That morning, I had laid in bed crying because I could hear my roommate’s air conditioner running.) One teaspoon of magnesium later (this is my favorite, by the way), and I felt miraculously better. Really, it felt like a miracle. Thump..thump…..thump… my heart slowed. Through the darkness peeked genuine hope for the first time in months.
“Just kidding!” said life. I had been wrong. I supplemented the hell out of magnesium for months but the anxiety, insomnia, and heart racing never really went away.
It was not until another year later, in February of 2014, when I ate an avocado (a high potassium food) and my heart started pounding, that I connected the dots on what had actually happened:
My kidneys started sparing potassium back in January 2012, and, even though I stopped taking spironolactone six months later, the potassium sparing never stopped.
High potassium causes irregular heartbeat, muscle weakness, insomnia, anxiety. Blood tests and doctors and discussion boards all said I was okay on the spiro. But I wasn’t. They said I would definitely be fine coming off of it, but I wasn’t. Yesterday, I ate an avocado. I won’t dare eat one today. Finally, now in the fall of 2014, I know specifically how much potassium I can consume without making my heart race. It’s not much.
I also now know, after doing extensive research, that the precise effect spironolactone has on the kidneys actually up-regulates excitatory activity in the brain. It increases glutamate and decreases GABA. This causes anxiety. I figured this out and almost solved my health problems for good when I began supplementing with GABA and my migraines and anxiety abated…for the first time in years. (This is on of the GABA supplements I like) The whole story and it’s horrible villain is now crystal clear: spironolactone stole my peace of mind, and maybe even my sanity, at least a little bit, for years.
Spironolactone has been the primary influence on the quality of my life for the last 34 months. Throughout that time, it never won the war. I wrote a few books. I got a degree. I had my willingness to keep pushing forward in life bolstered by my discovery of partner dancing, which truly was, as my mother continues to insist, what really saved my life. Today, I can happily say that I am at peace, and relatively carefree, and excited about the future, and maybe even genuinely happy, most of the time. I figured it out. I really did. It took me so long, and it was so hard, but I made it. I figured it out. My health problem had a cause… I just had to stay committed to recovery and doing everything I could to find the cure I needed.
But I will say that the spiro won way more of the battles than I’d like. My life during those two and half years was at times unbearably difficult. I don’t know how long my heart will be prone to beating like this. I still sleep extraordinarily poorly. I don’t eat like a normal person, nor do I make plans or schedule my life like a normal person. Yet perhaps worst of all is that spiro stole my innocence. Spiro took me to the dark side of what a human mind can feel and do. I am incapable of forgetting just how terribly, insidiously dark that is.
This is the story of the drug that killed me.
(For help with anxiety – well, I’m writing a book on it now, but I also highly recommend this book — it is the go-to anxiety-manager for psychologists who know their stuff. The Mood Cure and The Anti-Anxiety Food Solution are all fantastic reads as well. And if you’re interested: GABA and Magnesium both can help with anxiety. Find GABA supplement here. Find magnesium here. )