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.
(facepalm)
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.
Heart failure.
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.
Or 23rd.
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.
What’s more:
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.
Almost.
🙂
(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. )
wow, thank you. This is amazing, and may be exactly what I need. I am slender (5’8″ 120lb) and I’ve had acne since puberty. I’m 42 now. From my teens to my 30s, I tried accutane (3 courses w/ no success), diane35 (mild improvement), spironolactone (great improvement), antibiotics (helped initially) and many topicals (worthless). The spironolactone gave me terrible headaches/migraines, but I persevered for years. I stopped eating sugar and bread, and my acne improved. I still have acne, of course, but it doesn’t bother me as much as the anxiety. I still remember the morning I called my doctor in tears, saying that I was having a panic attack. I had multiple tests, and they were all normal, including a 24-hour urine cortisol test. These days, most meals end with heart-pounding anxiety. I’ve tried many, many diets ,and keep a food diary. I’ve tried low carb, ~zero carb, low fodmap, low histamine, low sulfur (mthr issues), low oxalate, low phytoestrogen (your speadsheet is a great reference, thanks)… many more. But i feel better eating white rice, greens, and fish. Low potassium. I haven’t investigated low potassium, so I’m heartened by your success. Btw, I’m a very very very light sleeper. I can’t sleep in the same room as my dog, because her licking wakes me up – which is sad for both of us. This may sound dramatic…but by posting this, you may have saved another life besides your own.
There’s lots of potassium in greens! Personally nothing gives me as much heart trouble as eating greens…. so perhaps that’ll help you. Really, I can’t express what a huge difference it makes.
It’s remarkable to me that no one is talking about this… really, it’s so hard to find a conversation about this oneline. And, I really think since i suffered so much I figured out a lot, in a way that no one really has. I hope everyone looking for co-sufferers find this page and knows they’re not alone! It’s so amazing to know you’re not crazy, right?
So I really wish I had of seen this ages ago, I’ve been on spiro for a little over a year now to help manage my PCOS since my testosterone levels were pretty high. From the beginning I noticed changes, like i was running out of breath, headaches and the occasional cramp. My Doctor assured me that it was perfectly normal. Over the last year I have developed asthma, gained a ton of weight, become incredible depressed and anxious, and as of about 3 weeks ago noticing chest pains, anxiety like attacks and a strange numbness/tingling in my arms, legs and other body parts.The headaches tend to cause dizziness and ringing in my ears. I never put two and two together though after my Dr assured me I would be alright. She luckily decided to take me off of the medication which is how I found this website. I was looking to see if I needed to wean off the drug only to be shocked when I saw your list, many of my symptoms were so similar. I’m going to have bloodwork done soon as a precaution since it had been a year since my last visit. my hope is that it doesn’t take a few years for my body to recover. I do hope you are doing better now, thank you for sharing!
Oh my! I have been on spiro for a decade or more (I am 62). When I began Paleo in 2012 and was eating so clean, I decided to taper off the drug on my own, thinking the acne would clear up without meds. The cysts came back with a vengeance within a few months and I went back on the spiro. As I understand from other sources, spiro affects the adrenals, thereby reducing any excess testosterone in one’s system that causes the acne/oil production. My dermatologist says that most acne is hormonal; I’ve had horrible acne since puberty and into menopause. However, this is the only medication I am on and I experience heart palpitations at night, some anxiety, and my libido is gone (also a known side effect). I think it’s time I see a doctor and get my hormone and potassium levels checked out – there’s a women’s practice here that does bio identical hormone therapy and they are big into Paleo too. I think it’s time for me to take charge of my health and get checked out. Certainly they will know how to balance out the testosterone than with spiro. Thanks for this article and sharing your experience with this medication.
Oh, yes! This could most certainly be involved. Spiro is a potassium sparing diuretic, which causes an electrolyte imbalance in the blood. In the meantime, to help with the heart palpitations, consider a lower potassium diet (Which you can somewhat balance sodium). = no greens, no melons, no bananas, no tomatoes, no avocadoes…those are the most important ones.) I think I mention that in the post but I just want to be sure. Magnesium supplementation and higher sodium intake also helps.
Also, FYI, your blood levels might come back perfectly normal, but that doesn’t mean your kidneys aren’t working overtime and activating excitatory cardiovascular and brain activity. So if your levels come back good try the lower potassium and see if that helps?
Stefani,
Thanks for this really candid account of your health challenges. Prescription meds are the worst for acne. I went through years of antibiotics, spiro (which made me bleed every day), birth control and a round of accutane that has caused what I think is permanent damage to my body. It’s like modern medicine is in it’s own little world with little knowledge of what really works.
What really helped in the end – cutting out gluten and dairy and incorporating small servings of rice/potato. Strict paleo did little for my acne, gave me severe breast pain and messed with my period.
Yep. Rice/potato is still “paleo” by my book! Clean, historical foods. Low carb does not = paleo. Natural foods that are good for you…and so happy theyre helping for you 🙂
And after stoping Spiro, how did you stop your acne??
I spent several years of my life with contraceptives. Perfect skin and perfect hair but a lot of secundary effects.
The last 7-8 I’ve been learning to manage without them, I started eating clear and tried some suplements (zinc, Omega 3, spirulina … ) what works with my hair gives me acne (brewer yeast, spirulina …)
Now I’m trying GLA from Borage oil and my skin is perfect! Incredible. My hair is falling a lot since summer but rubbing some borage in my scalp seems to help. I am starting with gelatin too (after a break) and Diatomaceus Earth, rich in Silica. Let’s see …
I have suffered from severe depression and anxiety since my teens (I am now 35). I have also suffered with acne, although mostly moderate, since I was 17. Right around this time ortho-tricyclen was being prescribed for acne and it helped me tremendously. For about a year. And then it stopped working. Previously I had been put on tetracycline and other topical meds that didn’t do much. As the years went by the available acne meds were more abundant and effective, yet not always convenient or affordable; one of them had to be refrigerated, others were not available in generic or weren’t covered by my insurance. I continue to suffer terrible depression (bipolar II), anxiety, OCPD (obsessive-compulsive personality disorder), eating disorders, cross-addictions, and TERRIBLE, DEBILITATING INSOMNIA!!!! I am on more medications for these various disorders than I have ever been and I am miserable. My sleep and mood are so erratic that I am considering hospitalization. My life is a never-ending quest to diagnose and treat my various ailments. My doctors flat-out refuse to buy into the diet connection with any of these things. But I keep coming across stories of people who have cured their acne and mood disorders by changing their diets. I am so confused and frustrated. I don’t know who to trust. I am feeling so hopeless. And exhausted.
Hi Taylor. I’m sorry for your struggle. 🙁 I know how hard it is, both physically and emotionally. I don’t know your position precisely, but I DO know that there are LOTS of people out there who do this without prescription meds. You can find your way, I promise. If anyone’s crazy, its doctors who don’t believe in the diet-body-mind connection, not YOU.
I would consider boosting some inhibitory neurotransmitters if I were you – as I mention briefly. They’ve been incredibly helpful for me. I take tryptophan, Valerian, and Passionflower, which help serotonin and GABA respectively. All right before sleep. I also take a low dose of melatonin for sleep.
I can’t imagine how horrible it must have been to go through all of that. I get crazy enough losing a few hours of sleep. But glad you worked through it and weren’t permanently crippled by the ordeal.
What’s really scary is how many women I know who are on spironalactone. The ones I speak with have usually gone on it to try and treat their hair loss, and a lot of whom I have talked to are afraid to go off of it for fear of hormonal rebound (same as the fear with BC). But I know there are so many more who take the drug as a quick fix to other cosmetic manifestations of health problems.
Now I am of this opinion: DEATH TO QUICK FIXES!!!
I used Spiro for about a year between 2010 – 2011, along with birth control. I was trying to fix my hair, which was falling out like crazy. Also had hirsutism that required me to wax every other day the sides of my face.
Losing hair was my main worry though, and the spiro did NOT help with that. It did slow my hirsutism way down which was nice, but I also started having panic attacks – one of which sent me to the emergency room.
It took about 3 years for the panic attacks to stop, and now I feel like I can stave them off by eating a little bit of salt and some form of glucose. Before reading this, I never connected the panic attacks with the spironalactone/potassium though. It makes sense.
The mechanism behind spiro is also interesting to me. If I understand it right, spiro lowers aldosterone by making your kidneys retain potassium and makes you excrete sodium. But aldosterone is an adrenal stress hormone that naturally gets elevated in the presence of low blood sodium, if what I’ve read about hormones is correct. Also, aldosterone is sometimes found to be higher in women who have hair loss problems.
Do you think that using spiro might set a woman up for future aldosterone imbalances, even if she goes off the drug?
Oh, YES, I definitely do. I am so sorry about what you went through – yet on the other hand its kind of relieving to know you’re not the only one, right? I have found that being higher carb for me is an absolute MUST, and I also eat a LOT of salt. In the whole potassium-balancing act the kidneys also product a lot of angiotensin II, which directly elevates excitatory neurotransmitter activity in the brain… causing anxiety, insomnia, and panic attacks.
It’s been about three years for me now, almost to the week. This past week I got two nights of uninterrupted 8 hour sleep in a row for the first time in 3 years.
Thanks for sharing this, Stefani. What you have said totally makes sense to me. Sad to hear you went though all of it. You must have had mixed feelings about figuring it out.
As many may know, the progesterone-analogue in Yasmin is derived from spironolactone. The amount of spironolactone in Yasmin translates to a lower daily dose than is normally prescribed as stand-alone spironolactone. I think it works out to about 1/4 or 1/8 of the amount in a daily stand-alone dosing. Still, over time, many of the same symptoms could happen. So there are a whole, whole lot of women potentially affected by this!!!
Yeah! I’ve totally written about that somewhere on the blog here… when I warn about spiro’s potassium effects, I do mention the yaz. thanks for sharing. Heads up everyone!
Thanks for sharing ! It’s good to hear you made quite a turn-around in a short amount of time. I’m looking forward to the new book 🙂 🙂
I went to a dermatologist about a year ago to have a cyst surgically removed. They took a look at my face and asked if I wanted to treat my (mild to moderate) acne while I was at it, and then proceeded to prescribe me a year’s worth of Doryx. Antibiotics for a whole year ! I declined and am now experimenting with diet to reduce inflammation.
that’s the ticket! http://acneeinstein.com is one of my favorite websites for helping with inflammation and your skin 🙂
I am sitting on my bed in shock and cannot thank you enough for this article!
I began spironolactone a little less than a year ago for elevated testosterone levels and terrible cystic acne. I started out at 100mg, but eventually was down to a maintenance dose of 25-50mg. It worked wonderfully for clearing my skin. I am familiar with panic attacks but what has occurred the past few months has been something that has felt even more sinister. In February of this year I had a panic attack unlike any panic attack I had ever experienced. It lasted and lasted and LASTED. Not even benzodiazapines could touch the panic (and i rarely have ever had to take them-maybe once a year). I stopped all my meds including spiro. I got worse and worse and the panic got worse and worse. I maintained my paleo lifestyle but in desperation went to see a shrink which insisted my problem was a chemical imbalance in the brain and Rxed antidepressants. I hesitantly took them and got much much worse. The panic was 24/7 and to a degree I had never experienced. I stayed in my dark bedroom wishing to die, convinced I was already dying anyways. My electrolyte balance was normal. Finally I had enough of the antidepressants making me depressed along with more anxious and I stopped them and started seeing a therapist. I was on spironolactone for less than a year! Maybe 6 months tops!!! I have finally calmed down a bit and have been supplementing magnesium, zinc and omega 3s. My panic is finally not a daily occurrance. My skin is worse than it was before the spiro, my hair is falling out and my sex drive is through the roof. Day before yesterday I started the spiro again and within one day the relentless panic came back! I thought for certain it was all in my head until I read this. I will not be taking anymore. I cannot believe what this medication has done to me. I have lost months and months of my life. My children have had to see their mom in a really dark place. I never would have known for sure if I hadn’t read this article.
Thank you so much!
What are your tips for balancing hormones naturally? I already eat a strict paleo diet. I have researched DIM, Vitex, spearmint tea and bio identical hormones but none look too terribly promising to me.
Hi Amy. Feel free to email me @ stefaniruper@paleoforwomen.com (i think that’s the address, anyway). I’d be happy to talk more about this.
My problem was definitely the spiro. So you said your electrolyte balance was good. So was mine when I got tested. The thing is that – god, it took me so long to figure out the biochemistry of all of this, partly because for the first couple years I just thought I had lost my mind – when the kidneys work hard to keep electrolytes balanced, they upregulate the activity of stimulatory neurotramismitters in the brain and downregulate production of inhibitory neurotransmitters like GABA. To this day – It’s been 3.5 years since I stated spiro and 3 since I went off of it, I cannot eat an avocado within 4 hours of trying to sleep, because avocadoes are high in potassium. I believe that the spiro permanently altered my kidney’s function, and that I will always be sensitive to potassium. My body will always try hard to regulate electrolytes, so that my neurotransmitters will get imbalanced. Don’t forget too that the adrenals get super active when electrolytes need to be balanced.
I cannot recommend more highly trying a supplement that boost gaba production. I took one called Serotonin Fx… um, here: http://www.amazon.com/gp/product/B00JW8Q9EC/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B00JW8Q9EC&linkCode=as2&tag=palforwom-20&linkId=NSJG6Q37ZJSCVLMS It has both tryptophan, a serotonin precursor, and valerian, a GABA stimulant, in it. I don’t take it regularly, but sometimes, and it calms me and helps me sleep.
So far as hormones go – well, I think you’re kind of in it for the long haul. Patience is key here. Remember that your body just went through the ringer with spiro, so give it all the forgiveness you possibly can. I wouldn’t go crazy with supplements because they can affect your mood and positive health, too. Personally I’d wait a few months without supplements, other than gaba and magnesium (if you do omega 3s, I recommend doing Fermented Cod Liver Oil, which is the safest and most nutrient rich of the omega 3 supplements – you can find it here: http://www.amazon.com/gp/product/B002M06SMU/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B002M06SMU&linkCode=as2&tag=palforwom-20&linkId=UWFF6GXWHEWSZINS)
Zinc is good, but it competes with magnesium in the body, so if you take more than you do magnesium you may see some symptoms. This at least has been my personal experience, I have trouble sleeping on zinc.
My “tips” really aren’t tips – have you read my posts on acne and pcos? Gut healing, stress reduction, figuring out hypothyroidism if you have it or any other autoimmune diseases… those are all important. I mean, I’d start there. I could recommend vitamin E and stuff for progesterone production but the most importnat thing you can do is figure out if you have an underlying health condition causing the imbalance.
All my love and sympathies to you. I know exactly what you’ve been through. I’m still crawling my way out, so give yourself time. 🙂
I just read this article and I am very very scared. I was only on spiro for 10 days the first three on 25 mg but had insomnia and went down to 12.5 mg for the rest. I was also drinking mint tea which I have read does something similar to spiro and I didn’t know that. My dermatologist just said not to eat bananas. However, I am a vegetarian and eat greens tomotoes avocaodos etc alot. I have not taken spiro in three days but still have my heart racing. I am terrified with the idea that this could last forever and that I have destroyed my body in this short time. My acne is painful but this feeling is hell. Is this really going to last the rest of my life?
Definitely not! I am glad you found the article in time to stop. Most women I have talked to have recovered well in time. Nowadays I have to be careful with my potassium intake, but not as careful as I used to be. Drinking water and consuming sodium or sea salt may help keep the palpitations down. You may also wish to consider taking valerian root and tryptophan which can help boost gaba and serotonin in the brain, respectively (which will slow everything down). Lowering your protein intake may also be quite helpful. Have faith and simply walk gently… I was in hell for three years, and now I can honestly say I am okay. You will be totally fine 🙂
I can’t THANK YOU enough for sharing this. I am in the midst of my own health issues/health discoveries. While our stories aren’t exact, they hold similar issues and your discoveries are enough to encourage me to keep researching. Something’s not right. Somewhere in my past there is an answer. This story specifically is going to turn my attention to some areas I haven’t looked into yet, and…who knows?! When I finally get my answers one day, I will definitely be thanking you again for pushing me forward.
Yes yes yes yes!! Keep looking!!! 🙂
I really appreciate you sharing your experience with Spiro and I’m glad I stumbled upon this article because I’m having a similar experience. I have been on Spiro for about 6 months now and it has been an absolute miracle for my chronic hormonal cystic acne. The downside is that I happen to love foods that are high in potassium, so it has been a struggle trying to cut down on high potassium foods, but I have been able to do so out of fear because I’ve had a few bad reactions after taking in too much potassium (light-headed, shortness of breath, increased heart rate).
I have always been a little on the anxious side, but I have been much more aware of it in these past few months. For the first time, I considered going to see a doctor about this seemingly random increase in anxiety, but I am stubborn and wanted to try to fix the problem on my own first. I live a mostly paleo lifestyle so I can’t imagine that my diet would be contributing to this. I guess I never made the connection that Spiro could likely be the culprit. I did some research and discovered the calming effects of GABA, so I have been supplementing with that for a while, and it has been helping a lot. I find it interesting that before I read this article, I have already been supplementing with magnesium, omega 3s, and serotonin occasionally. I also have fairly high sodium intake in my diet.
At this point, I’m wondering whether the negative effects of Spiro (anxiety and heart palpitations) related to high potassium levels can be counteracted by maintaining a certain lifestyle changes (low potassium foods, GABA, sodium etc) so that it would be considered safe to continue. I would absolutely hate to go off of the one thing that has helped my skin the most, but I do fear for my health sometimes. I would love to hear your opinion.
I think ‘safe’ is a relative term. For me, DEFINITELY NO. The thing is, the spiro is setting your kidneys up to spare potassium. By all accounts, after 3 years off the drug, my kidneys are still doing it. So my one worry would be that your kidneys are being conditioned to behave in a certain way that some day the supplements may not be able to keep up with. On the other hand if you are really married to the spiro and you are feeling okay on the supplements then that is definitely an understandable choice to make. I would just be super cautious and watchful of any symptoms creeping up
Hey Stefani- wow! Thank you so much for speaking up about this… This is exactly what happened to me tonight. I’ve been on Spironolactone (50 mg a day) for about a month and tonight I had my first panic attack … These past couple of days I haven’t been able to fall asleep until around 3 AM, I’ve experienced heightened anxiety, and tonight my heart started thumping really fast and then really slow, it did not seem right at all… So my skin has cleared up- especially lately and I think the medicine is in full effect- but other issues have been arising like you’ve described. Now I’ve always had a little anxiety, but it’s been extreme lately. Since I can’t sleep tonight, I’ve done some extensive research looking in every direction for why I had a panic attack (when I’ve never had one before) or (why I feel so damn anxious over nothing) and that’s when I stumbled upon this page. And it hit veryyy close to home, so I definitely have some questions… Now that I’m aware of this issue how should I go off of Spironolactone? Do you think it’s better to work your way off or completely stop taking it cold turkey? Are there any acne alternatives that worked for you?
I’m not sure HOW, but I definitely think it should happen. Seems pretty clear to me that it’s the cause of your issues. I suppose which method you use depends on your priorities. If it cleared up your skin, then going off of it you will probably see an initial few weeks of some pretty nasty stuff. On the other hand your body WILL adjust and it will go back to ‘normal’ relatively quickly. that initial bout of acne may be worth it to save your mental health, especially considering that I don’t know how “effective” titrating yourself slowly off of the spiro would be. I simply don’t know… you could always try to go cold turkey then add a little bit of spiro back in if it’s too extreme for you to handle? In terms of medications I stopped taking everything, ever, after spiro. Estrogen may be helpful for you…. If you’d like a med metformin would probably be a safer bet…but again all meds have their drawbacks. Inflammation cooling, stress reduction, gut healing, maybe a lower carb diet, lots of relaxation… over the long haul these are the best bets.
Amazing story, thanks for sharing 🙂
I love how you let your vanity get the best of you, then decided to take meds for acne, only to turn around and blame the meds, when it was your own decision to take spiro in the first place – just like your choice of diet led to the acne as well.
You then proceed to throw yourself a pity party with ‘poor, poor me’ as your theme song. You’re constantly looking to place the blame on anyone but yourself; something that most women do, rather than look in the mirror and say ‘this is your own doing, now quit complaining, and figure out how to get out of the mess you created’ Is it any wonder why society won’t take us seriously, when the vast majority of women act like entitled, overgrown toddlers that throw a fit when they don’t get their way, and play a perpetual blame game where they are endless victim? No shock to this girl.
I sincerely hope you take down and burn your victim flag once and for all. One would think that this journey could teach one humility, but your horn tooting suggests otherwise.
wow.
Wow is right and shame on you Alyssa as you are the one sounding self righteous. Thank you Stefani for all of your insight and experiences. I just came across this as I was searching for side effects of spiro and this is great information and made me immediately pick up the phone and call my doctor. I have been at wit’s end scared to death I am going to wake up in the middle of the night and have a heart attack due to panic attacks or completely lose my mind as I have been so down and depressed with complete sobbing episodes. I have gained 15lbs since I started spiro for acne and now have traced many other things that have happened back to when I began taking it. So thank you and thanks to everyone else who has commented “positively” for providing me with hope!
Oh, I am so glad you found us. Yes, it’s really so incredible. Six years later and I still need to eat low potassium or else I can’t sleep. fortunately I think most people are not as sensitive as I am, and they appear to be able to get potassium back in their diets. The best thing you can do now is stop immediately and eat low potassium, as well as consume a high quality sea salt and perhaps supplement with some magnesium, or also some tryptophan and valerian root before sleep. I am so sorry that this happened to you. But I’m here for you and I’ve done it, so I know that you can do it too <3
Seriously, wow. No need for that. If you don’t like it, don’t read it and move on.
I’m so glad I read this article! I started taking Spiro 2 days ago. Only 2 days ago!!! And I have had 2 panic attacks (which is unheard of for me). Not to mention I feel like I can’t get a deep enough breath after taking it and I’ve also experienced chest pains and a few really bad headaches throughout the day. It was prescribed to me for my cystic acne but from the get go, I had a weird feeling about taking a medication that my derm said was originally for high blood pressure. I’m stopping it right away. I already have hypothyroidism (I was born without a thyroid) and have been on birth control for 5 years which seems to really mess with my hormones as it is. I’ve recently started taking a very low dosage of zinc as well as magnesium and also started today with the fermented cod/butter oil. I’m even thinking about stopping my birth control as well and want to look further into more natural ways of controlling my hormones and fixing my acne. As bad as it is that so many others had similar experiences, I am also so happy to know that I’m not just losing my mind!
So glad to hear that you’re stopping so early.. what a relief! Keep me posted on your progress 🙂
<3 <3 <3
Thank you! I thought I was alone in feeling this way (been on spiro for 7 days). I am calling my doctor in the morning!
YES! And please email me if you have any questions 🙂
Hello Stefani!
I am truly grateful that I stumbled upon your article. I too went through a two-year nightmare due to medications. Except, my issue was due to taking a medication by the name of AZOR. My first year taking the medication I was fine. Very little side effects. Extreme fatigue, dizziness, and just an overall feeling of being unwell. Now of course because I am in my late thirties, overweight, and at the time I was a smoker, there was no way my medication was causing those side effects. I needed to get healthy! Quit smoking and lose the excess weight! As a began my journey to get better, I dropped some weight and the Azor seemed to be working to keep my blood pressure under control. Then all hell broke loose for me. I went in to have a root canal performed. After the procedure, the dentist prescribed Prednisone!I took one dose and later that evening, I wound up in the ER for a racing heartbeat of 150 beats per minute! I went through the normal routine, blood work and x-rays, the results came back said my heart was fine but, they wanted to treat me for pneumonia as that thought they saw a spot on my lungs. I stopped taking the Prednisone immediately but they gave me an extremely strong antibiotic! Clindamycin! Within 24 hours I began experiencing every side effect in the book! I couldn’t walk, diarrhea, cracking bones! If it was listed as a side effect I had it. So they again prescribed another antibiotic that was supposed to be mild, Amoxicillin. Still the same side effects and to add insult to injury a week later I became ill with an upper respiratory infection in which they gave me another antibiotic. Needless to say, after my incident with the Clindamycin and Prednisone, I decided not to take any more medications because they all seem to be destroying my body and causing further complications to my health. So I reached out to my old nutritionist who treats through detox and supplements. I took Oil of Oregano to fight the upper respiratory infection, as well as, other supplements in the attempt to get my body to heal. During this time, my heart began going crazy! I would have bouts of tachycardia, palpitations, irregular rhythm, pounding heart, you name it my heart did it! After the upper respiratory infection cleared up I thought all would be well. Everything would go back to normal! Little did I know the next two years of my life would be spent in and out of the ER. I had countless test and Dr.’s appointments trying to figure why my heart and body were totally out of whack but my blood test always came back normal! Needless to say, mentally I was breaking down! Very much like your story, crying, depressed, insomnia, sadness, and it was all a vicious cycle because I would be upset because I thought I was dying, I wasn’t sleeping which caused further depression and anxiety!!! Not to mention the doctors labeling me with mental problems and mental disorders, when I had never had any history of mental illness in the past 36 years of my life!!! I was called paranoid, diagnosed with Anxiety! Every day I would go to bed praying I would wake up and it would all be better. I felt like I was losing my mind! I began to question my own sanity and whether anxiety was the true reason behind all of my issues! During the last 2 years, I not only developed serious heart issues, but also, digestive tract issues, bowel irregularities, brain fog, and a host of other issues! There were literally times when I thought my body was shutting down and that moment was my last on earth! The only thing that kept me going was fighting to live for my daughter! There were times I had the feeling of wanting to take my own life! I couldn’t see an end in sight! I just didn’t want to live that way anymore! I had already stopped living! I couldn’t do all the things I loved doing prior to all of this! I couldn’t take my daughter out to do things anymore. I love to travel but now due to everything going on I couldn’t go anywhere without my family and without carting a million supplements and a sleep apnea machine with me! Forget driving myself even 15 minutes to the next town over!!!! let alone traveling to visit a friend or relative that only lived a few hours away! Until recently the light at the end of the tunnel!! At the end of 2015, I lost my health coverage and had to purchase my own plan! Little did I know the providence of God was at work in my life! My new insurance policy did not cover the Azor and I had to put on two generic forms of the medicine. Amlodipine and Benicar! When I discovered the Benicar cost just as much as the AZOR, I petitioned my doctor’s office to please write my insurance company letting them know the AZOR was the only blood pressure medicine that worked for me as we tried others in the past. I had no clue at the time the problem with my insurance would be the answer to my prayers!!!! While I was waiting for my request to be processed and go through, which my doctor’s office didn’t seem to be in too big of a hurry to help me with, I noticed by heart was beating calmly and steadily! I couldn’t even see my body shaking from my heart pounding and beating so hard which I had become so used to seeing! The one factor that was different was that I was no longer taking the AZOR!!!! I went straight to the internet looking for others who had experienced side effects from taking AZOR! Low and behold, there it was! The overwhelming evidence that my medication was killing me! Others experiencing the heart issues, dizziness, and a list of other side effects from having been prescribed AZOR! My search was over! I had researched everything under the sun trying to find answers to what was wrong with me! I changed my diet! Began juicing, supplementing, you name it I did it! Only to discover the answer to my problem was in one little brown pill I had been taking every day for two years! I was almost in disbelief that I was actually even feeling better! I thought I would wake up and it was all going to be a dream! But as the days have gone by, my heart still continues to beat steady! There’s an occasional thump or missed beat but nowhere near what I had been feeling!!! It’s all still so unbelievable to me but I am finally starting to feel like my old self again. I have had a few moments of crying when I think of the hell I endured for what seemed like an eternity !!!! To think that unless the incident with my insurance company had happened that I may have been one of the few cases that ended badly! I am thankful to God and feeling so blessed!!! I would have never believed in a million years medication would have affected me so drastically! After all, I trusted conventional medicine implicitly! Needless to say, I have now learned a very invaluable lesson!!! Thank you for sharing your story! Now I know I am not alone and others have been through the hellish nightmare that can be caused by prescription drugs! I pray that your days will be full of cheer and God restores the days and years to you that were lost during that horrible time in your life! Be blessed! I hope and pray stories like ours will help someone else regain their life back too!
Lillian, thank you so much for sharing your story. I empathize so much with what you went through. It sounds like we had very similar experiences and drugs… the AZOR appears to also be a diuretic that acts on electrolyte balance. I am so sorry for what you went through. I lost three years and still am not completely out of the woods (that is, I still can’t eat potassium). But I am so, so grateful for what I have. I also tear up whenever I think about it. I am so saddened by my loss of those years, and so heartbroken for what my poor body and soul went through, and also so relieved that it had a cause, and an end. Fortunately I now know that my mental health should always be within a certain stable range, and if it ever veers out of that range then I have to look for physical causes. I think we all do. But I now know that so intimately that I have lost my fear of losing my mind again… all I have to do is step back and listen to and have patience for my body.
All my love to you, my dear.
Thank you so much for this article. I am so sorry that you had to suffer through such a nightmare. But I am glad you’ve shared your experience because I think this article may help me understand why I’ve had a permanent migraine for the last three months. I was on Spironolactone for a few months because of terrible acne. The Spiro definitely cleared my face and I felt no side major effects while on it. But I stopped using it suddenly when in November I had to start taking antibiotics because of some oral surgery I’d had. I decided, on my own, that I didn’t want to be taking so much medication at the same time. A month later I woke up in the middle of the night with a severe headache that has not stopped for months. I’ve hat CT scans, MRA, MRI and nothing has been found.
I am now on Amitriptyline for the migraine (which now feels more like a combined migraine/tension headache). The meds have helped in lowering the pain intensity but haven’t eliminated the pain. I’m fortunate that I don’t have nausea and vomiting, just the pain and dizziness. I can now function somewhat but I haven’t been able to go back to my job, or finish a graduate degree that was supposed be wrapped up this Spring. Anything that requires concentration immediately worsens the headache. You mentioned that your potassium levels, affected by the spiro, were causing anxiety and migraines. What does
“sparing potassium” mean (English is not my first language)?
Thank God I have not experienced the anxiety problems but the non-stop migraine is killing me. How can I figure out my potassium levels? I’ve had a ton of blood work but I don’t know if anybody was testing for that. And about the GABA supplement you mentioned? Do you have any suggestions on how to bring this up with my neurologist? She just wants to keep increasing the dose of Amitriptyline. I’m scared to go down that road.
I can’t thank you enough for posting this article. My life has been on hold for months with no indication of when things would go back to normal. The information you’ve posted provides another clue to what may be affecting me. Thanks.
You can get your potassium levels checked by your doctor… but mine always came back normal. You may have such bad headaches for a few reasons. One because the potassium is high (sparing potassium means that your liver is not getting rid of potassium the way it does other minerals in your urine). But more likely because OTHER electrolytes like MAGNESIUM, which is crucial for keeping headaches away, could be LOW, because spironolactone is a diuretic – meaning that it makes you urinate more often. This will flush minerals like magnesium out of your body (but not potassium).
So I recommend considering a magnesium supplement. That really helped me a lot.
I took VALERIAN ROOT to help with gaba production, which you should be able to get over the counter at any pharmacy, especially if you live in the united states. You might also want to consider tryptophan, which can help boost serotonin production. (Take them both at night as they can make you sleepy.)
You may also now be experiencing migraines because of the antibiotic you were on. Have you considered probiotic supplementation to help with your gut flora?
I have no advice, unfortunately, for working with your doctor. If the amitriptyline helps, then I think it’s fine probably to take it. But I think you are right to start looking at other possibilities too. <3
Good luck and all my love to you
Hi Stefani. Thanks for sharing this!
I’m experiencing similar symptoms to you – although not from the same causes. There appear to be electrolyte issues I’m having – I can go from feeling perfectly fine one day to ultra severe anxiety the next depending on what I eat.
I was wondering, would you be able to let me know a rough example of what you might eat, drink and supplement in a day? You mention you eat a lot of salt and limit potassium – but I’m assuming you eat SOME potassium otherwise you’d be avoiding fruit and veg 🙂
I hope you can help with this! I’m really struggling 🙁 I guess the things you were eating as you started to feel better would be really helpful!
Thanks a lot for sharing this again!
Hi love. 🙂 I eat a lot of low potassium fruit – apples and mangoes and berries and cherries – as well as vegetables – carrots, onions, peppers, lots of low grade greens like lettuce, but also now some darker greens like chard and broccoli and am doing just fine. I am especially okay if I eat them earlier in the day – but I can’t eat them and fall asleep at night.
Eating lots of low potassium plants balances my salt intake. I have also recently switched to pink himalayan salt which I think is working well for me. And I do NOT drink a lot of water. I drink quite little. I find in fact that it often dehydrates me MORE, since it sets off my electrolyte balance.
And do NOT overdo protein. Lower protein is hugely helpful. And also avoid doing high amounts of protein and fructose at the same time, as they are both demands on the liver. 🙂
Does that help?
Yes that helps thanks 🙂
Are you still supplementing magnesium at all? Also you mention you eat a lot of salt, is that through things like cheese, or just added salt really?
Sorry for so many questions, I’m determined to get through this soon!!
Um, I do magnesium from time to time – but I am VERY sensitive to all supplements, so I need to take less than others. Once you start to get to ‘replenished’ state I think you will be able to tell. For salt, I do all added salt to my food (I simply don’t eat any foods that naturally have salt in them) and always use either unrefined sea salt or himalayan pink salt
Oh my I really don’t know where to start,
I have been going through the web today like a mad woman, I have such a headache now. Although if I think about all the hours of my life I have wasted searching every corner of this internet for an answer it makes my head hurt more. I have had acne since I was 12 – it escalated to cystic in high school – I was put on Beyaz, it helped a little. Then I was put on Spironolactone 100mg and it worked 100% in two weeks and I got my life back (it emotionally ruined me I spent some time in a psychiatric hospital because of it), and stayed on it for FIVE YEARS. I am now 25. A year ago (yea I’ve been researching everyday for a year now, wow.) the Spironolactone just stopped working. I started getting cysts, and other weird acne and it got worse and worse. My derm upped me to 150mg and it did nothing. I tried it for about 2 months with only worse results, went back down to 100mg and it just kept getting worse. My hair went right back to its constant oily self and my skin exploded. I figured the Beyaz and the Spiro just weren’t working at all anymore for me and I decided to get off of them. I had been wanting to for a while because I was transitioning into a healthier and more natural lifestyle, and those were the only two pieces that did not belong in my new lifestyle. So now, here I am, a year later after going through one more shot at Doxycline (which has cleared me up in days before), countless supplements, DIM, omegas, zinc, bs, adrenal herbs, chlorella, maca, vitex, I can’t even name them all I have a HUGE BAG FULL, and then even back to trying Spiro even again because I was just so utterly defeated with this acne coming back even worse than before – NOTHING HAS WORKED. I now have the side of my cheeks that look like they have been burned the skin is so scaly & mutilated from the cystic acne, which I’ve never even had cystic acne on the side of my cheeks or jawline before!!! it was always front of my cheeks, temples, chin, forehead. I gave up and as I am determined to never go back to a dermatologist again I found a holistic doctor who has been trading me her services for my graphic design services (yes!) She is great. We have started an elimination diet, and she gave me an herb tincture with milk thistle, red raspberry leaf and licorice. I am taking digestive bitters because I have a history of intestinal issues and definitely think my gut is a big problem here. However, I am still at a complete loss trying to figure out what the HORMONE side of this is. Why did Spironolactone work so perfectly and so quickly for me? WHY did Spironolactone stop working? I have so many notes and clues and I just cannot seem to put them together. I am worried that I am going to spiral into insanity once again. I am very interested in what you have to say about the Spironolactone doing permanent damage to making your body still spare potassium but get rid of everything else. I just can’t even think how many things this can effect, my electrolytes, my adrenal glands, my kidneys of course, my liver, my thyroid, my pituitary, my gut, my hormones. What is this underlying condition, will I ever figure this out!!!!???
Ah, thanks. Would love your feedback on what you think, and if you have figured out your hormones yet? Since I need to find others who have had success with Spiro because it is the same androgen problem.
Consider testing for congenital adrenal hyperplasia with an ACTH stimulation test. (whether or not you have PCOS). Make sure to find out the numbers… mild elevations can be caused by the carrier state. It’s a cause of hyper-androgenemia that is treatable.
I’m a doctor in New York. If you had any adverse effect on SPIRONOLACTONE please contact me via phone or e-mail.
Tel. (212) 684-8755
drmucelli@gmail.com
I am also an MD researching side-effects of Spironolactone, especially neuropsychiatric symptoms such as Depression, andxiety or panic. Please contact me at russellenglandmd@gmail.com . Thank you.
I have had adverse effects from this medicine also. I was taking it for about a month, when I finally realized it was the problem for chest pains, breathing issues and rapid heartbeats. When I was in the ER for muscle pains the nurse said to me that medicine is horrible, stop taking it. I am getting better and on a different high blood water pill . But I hope I was not on it too long. It needs to be taken off the shelf..My blood pressure also became really low at times, now I am fighting to raise my potassium levels, they have been low, go figure.
Sometimes the body will work extra hard to clear excess electrolytes out of the system, which could account for your low potassium levels. That should reasonably side with time, i would imagine 🙂
So glad you figured out what you needed <3 <3
Stefani,
Thank you for your article. I have been suffering from anxiety, depression, weight gain even when I watch what I eat and exercise, heart palpitations, and just this week I started getting lightheaded to the point where I feel like I am going to fall over when standing. I have been on Spiro for 2 years. I was originally prescribed it for my PCOS. It worked for all of my secondary symptoms of PCOS like hair growth and scalp issues, but it has made my cysts worse and made me gain weight when I am trying to lose it. I recently had my dose reduced from 100mg to 50mg a day and was kind of thinking that is what has caused the new lightheaded-ness, but my HR is up to 104bpm at rest which is very odd for me. I think I need to go in and get some blood work done again to check, but just like you my potassium levels have always been within range. I have been going back and forth about getting off of this medication bc of how it makes me feel and also because the risks include increase chance of ovarian and uterine cancer. I was advised that I need to ween off to be safe. I think that is what I am going to do because from the sounds of it, you and all of these other women experience the same effects and it is awful to live with. The benefits just don’t outweigh the risks on this one. I am kind of concerned about the heart palpitations and dizziness. I think I may need to go in to see my Dr sooner rather than later.
Thanks for this article.. it was very helpful!
Hi Christy,
I’m really sorry you’re dealing with this. It’s possible that your kidneys are working really hard to keep electrolyte balance. This would account both for your apparently good potassium levels as well as the downstream symptoms you’re still experiencing. When the kidneys have to work too hard all sorts of problems like these can crop off. I think it’s definitely safe to wean off. Drink plenty of water and use a high quality sea salt as liberally as you feel you need in the meantime 🙂
Hi! thank you so much for your post. I am a 25 yr old that is going on year 2 of spironolactone. I have increased my dosage twice, the last time being 4 months ago. I started developing severe anxiety and sleep apnea. I didn’t put two and two together until recently and decided to google it and found your post. It’s nice to know I’m not alone! Did you sleeping problems and anxiety ever get completely back to normal?
Hi Rachel. Good to know you’re getting the information you need. Honestly, it’s been a long, hard road out of it for me, and I don’t know if its entirely because of the spiro or other aspects of my life and health that have made it challenging. It has been four years now since I took spiro and I think I am okay now. I will say tho that I really had to stay away from potassium rich foods in the early days, and in fact I still avoid them in high doses, particularly before bedtime. It’s different for everybody i think, but I do think with reduced potassium intake and magnesium supplementation it can be overcome 🙂
Hello Stefani, Just a short note to you to tell you of my experience on spiro. Have taken it for over 30 years, 100 mg/day. Originally for facial hair, then blood pressure. Never questioned taking it, too busy in my life and job. Just had an accidental discovery of two large tumors on my ovaries (grapefruit sized and orange), had a complete hysterectomy. Tumors benign, very lucky girl. Now doing some research on the “why” of the tumors, I come across your site, and many others saying possible tumor growth in rats from spiro. I am a person who ignores lots of little things and now that I look back I wonder why I cannot sit through a movie any more, since about 40 years old, when I started taking spiro…..could it be? Anxiety? Oh I have just attributed it to getting older…….could it be the spiro? Everything in my life is wonderful, I mean everything. Except the anxiety/depression that I hide from everyone…….have never taken any hormones during menopause (57 yrs old), just ignored any symptoms if I had them. But now that it is coming to lite that the spiro is a “black box” med, I am questioning where the tumors came from and the years of fighting anxiety, and doing a darn good job of hiding it. I have not read of anyone who has been on spiro/aldactone for 30 years.
I haven’t read of anyone on it for that long, either. I will say also that sitting through movies was very hard for me. I had to leave the house when my roommates watched Hunger Games… it was so hard. I wouldn’t be surprised if this were a part of your issue, and I am so sorry that you have experienced these things, for any reason. There are other blood pressure medications if you want to try and switch and see if the anxiety reduces. You may also want to pay particularly close attention to your water intake and electrolyte balance. That could help with the anxiety. Also – taking some tryptophan and/or valerian root at night can help support serotonin and GABA production respectively, which could also help balance the anxiety.
So much love and warmth to you, Linda Mae.
Wow, I had no idea Spiro has such awful side effects.
I am on Spiro for some time (I don’t even remember since when…probably some years), but I have been taking it irregularly at first, and in the last year or so almost every day. I am also on birth control pills for over 10 years because i have PCOS.
I sleep quite well, I have no migraines, and I don’t have panic attacks, but I do get anxious sometimes, I admit, because I have a stressful job.
After reading this article I am seriously considering not taking Spiro every day…maybe it will help with my anxiety at work.
Spironolactone the spiraling drug.I wrote a blog on my experience. You may find it it interesting.
Wow, thank you! I have been on spiro for 6 days and have already felt more anxious and also like I can’t breath deeply enough. I almost didn’t take it after the dermatologist prescribed it because I have really tried to avoid prescription drugs to treat my acne but he convinced me the side effects were minimal and I’m desperate because Im getting married in 5 months and want my skin clear for the wedding, losing my sanity isn’t worth it. I hope I haven’t already done permanent damage to my body being on it for 6 days! How did ladies here clear their acne naturally? I’ve tried just about everything: estroblock, progesterone cream, vitex, zinc, vitamin a, reishi mushroom, manukau honey, sea salt, salicylic acid, sulfur soap, zinc oxide…. nothing works 🙁 that’s why I was desperate enough to start spiro
No, I think with 6 days you’re quite safe and I’m so glad you stopped in time. There’s a lot of potential answers for your acne, though I would start first and foremost with gut health and hormone balance, rather than topical solutions <3 <3 <3
Hi Stefani Ruper I had a question I’ve been on spironolactone for months and I’ve recently stopped for about a month and I was wondering if you ever had signs or depression after stopping this medication. Thanks!
I haven’t, but I understand biochemically why that might be true for some people. If you think that it might be the cause for you, I would definitely stay off of it and do my best to eat as nourishingly as possible. Stocking up on your electrolytes with a high quality sea salt and making sure you get enough vitamin D I think could be helpful moving forward
Hi. My name is Angie. I have been on Spironolactone for over 5 years. I am 47 and have had acne since the age of 13 and nothing really worked except spironolactone. The side affects I’ve had have been aura migraines and heart racing and sleep disturbances, fatugue. The worst is that I cant remember things and become delusional during and after migraines and I cant focus. I’ve had lots of tests and they all came back normal, yes normal even the potassium. This is what I have discovered and would like to share as there is light at the end of the tunnel. All of this revolves around dehydration and I’ll explain why. Spironolactone is a diuretic, its designed to lower the water content of your blood thus lowering your blood pressure. I picked up that perhaps dehydration was an issue because every time I started with the migraine aura I would drink 2 poweraids and it would go away. The other side affect I’d have was fatigue so I thought perhaps it was thyroid so I started taking some supplements to see if they would help but later discovered this was the worst thing I could of have done as thyroid meds also are a diuretic and this is when things really got bad. It was just by chance that while I was in the emergency room the other day I asked them to check my sugar….blurred vision, thirsty, urinating a lot. The test came back normal..no figure but what they did discover was that while I was laying down by heart rate was normal but as soon as I stood up it went up but did not come down? They were able to give me an answer I have something called POTS – Postural Orthostatic Tachycardia Syndrome. What is the cause? POTS patients often have hypovolemia (low blood volume). Check out dr. Google for the list of symptoms http://www.dysautonomiainternational.org/page.php?ID=30 (Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, chest pain and shortness of breath.1,3,4 Patients can develop a reddish purple color in the legs upon standing, believed to be caused by blood pooling or poor circulation. The color change subsides upon returning to a reclined position.)
I have also found a save and natural alternative for Spironolactone, its called DIM diindolylmethane, or DIM, from substances naturally found in cruciferous vegetables. I will do a bit more research and would suggest you do the same. There are others other doing the change over and there are side affects but defiantly a lot of success. I am waiting to see a neurologist and will keep you up dated.
Thanks for sharing about POTS! This is an under-discussed but very important condition for women to know about. And I’m so glad you found what you needed <3
Stephanie
You are responsible for me coming off this drug and realizing that the symptoms i had were due to it, despite my doctor saying no.
I was on it for cystic acne since 2013, I am now 44, I came off it in July. It was a miracle for acne, and in the beginning I didn’t feel any symptoms too much or i was just high on the fact that my acne was gone. It progressed and the muscle weakness, dried out face, tiredness and then the anxiety and heart palpitations. I am now seeing a homeopath. My anxiety is still there, worse, since I started a new job, and my memory has been affected too. I am trying not to take valium. The acne has not come back yet, but I know it will. I am reducing dairy and working with my homepath. I wish I would never have found this drug and its alarming how easy they prescribe it. Sure, some people have no side effects, and anxiety is not even listed. I even had bloating even though its a diuretic and I have not been bloated since I came off it. I crave salt and now try to follow low potassium based on your recommendations. Thanks for writing this, and knowing I am not crazy
Oh, love, I am so sorry about your experiences, and so very glad that you are on the path. You are definitely NOT crazy. It was a very long journey for me, but hopefully with the insights from my experiences you’ll be able to do it a bit more quickly. I do recommend taking BOTH magnesium citrate AND magnesium threonate, since magnesium threonate is the ONLY kind of magnesium that can cross the blood brain barrier and it’s CRUCIAL for helping your body get rid of the excitatory neurotransmitters this whole process has created in your brain in excess. Has been life saving for me. A low potassium diet for a while will also probably be important. As much rest and stress reduction as possible. Perhaps a high quality Himalayan pink salt. A diet that is slightly lower in protein may also be appropriate, to relieve some pressure on the kidneys. For anxiety I also recommend trying some tryptophan and/or valerian root (before sleep!) as they help the brain activate GABA (much the same as the magnesium threonate does). <3
I know I’m late to the ‘party’ here, but had to share my experience. I am 56 years old, post-menopausal, with no ovaries, tubes or uterus. I won’t go into why everything had to come out, but about 2 years after my bilateral salpingo-oophorectomy,I began to experience deep cystic acne on my chin and jawline (even with being on the Vivelle Dot 0.1 mg patch). My dermatologist suggested spironolactone, but I refused to take it – for 2 more years. Then I got desperate. I began with 25 mg once per day. Within two weeks my cystic acne cleared. I went back in and he suggested upping the dose to 50 mg once per day to also help with the female pattern hairloss I was experiencing. I did not increase my dose, but stayed at the 25 mg mark. First began the insomnia. I would fall asleep, and wake up. Fall asleep and wake up. All night long. Never sleeping for more than 45 minutes at a stretch. Then the headaches (and I don’t get headaches!). Then the anxiety began – and I am NOT an anxious person. All total, I was on spironolactone for about 7 weeks and had to stop. I’m still experiencing some insomnia (been off of it for about 4 days), but my anxiety is gone. I will never ever take spironolactone again. So what I have done is purchase inositol powder which I take twice a day, and a couple of other things. Hopefully this will help me long-term without the horrendous side-effects of the spiro. I just can’t take that drug anymore.
Hi Kathy,
I’m very sorry about your experience but also quite glad for you that you managed to come off of it in just 7 weeks and are now in recovery. Keep being patient, I think that the effects will continue to wear off over time. You weren’t on it long enough to do any kind of lasting damage 🙂
Re: the acne with which you’re struggling. Keep us posted on how the insotiol goes. You’re unfortunately fighting an uphill battle here because of your altered hormone profile. Eliminating dairy and sugar from your diet if you haven’t already could perhaps help you on this score since both of them tend to raise male sex hormone levels in the body. since spiro was so effective for you it seems like male sex hormones are a bit of a culprit for your acne. Might be worth experimenting with just in case 🙂
Hi, Stefani!
I’ve been taking the inositol (1/8 teaspoon twice a day)(for just a few days over a month) and my skin has stayed clear of any cystic acne! I’m so surprised and pleased. I occasionally get little tiny zits, but absolutely none of the cystic acne that I have been plagued with for a while. In fact, my skin has not been this clear in YEARS. I’m sleeping much much better and feeling rested when I awake in the morning. In addition, the places that were dramatically receding at my front hairline are beginning to slowly fill in with little hairs. I have hope that I can eventually regain some of the hair that I have lost over that past 6 years (slow loss), since I went through menopause. I will keep checking back here to let you know my progress, and because I glean a lot of information from you and everyone else here. But I am so very happy that this supplement is actually working. I should also mention that I take one Saw Palmetto capsule a day (Nature’s Way 160 mg). But I really believe it is the inositol that has been the game changer for me. Thank you so much for putting your story out there so that others can benefit from your experience. Spironolactone is bad news.
P.S. I forgot to mention a few things: since earlier this year (2017) and on through the summer and early fall, even though my blood levels of estrogen and testosterone were “normal”, it felt as if the estrogen was not getting to where it needed to go. Since going through menopause, I used to get the occasional black beard hair on my chin or upper lip, but it got to the point that I could have easily grown a boy’s “puberty beard” – you know the ones I’m talking about – very scraggly and you could count the hairs. But on a woman, that is not a good look! There were other changes as well which made me think that something was not allowing the estrogen to do its job. Since taking the inositol, I only get maybe one or two of those black beard hairs about every other day. And the long facial ‘peach fuzz’ has become less long and less obvious. And I have always suffered with hypoglycemia (confirmed with that unpleasant 4 hour blood test – I hit a low of 35 during that one) (I’m not diabetic). The blood sugar lows seem to have smoothed out, too. I’m not overweight (5’3″ and 110 lbs) – and have always stayed within 5 lbs +/- of that weight most of my life. But the cystic acne, hair loss, beard hairs, and other things that have been happening these past 6 years were getting worse. Again, thank you for sharing your story…you have helped me and many many other people!
thank you so much for sharing, kathy. i’m so glad you’ve found something that works for you!!! <3
Hi there. I would like to ask if anyone has experienced tachycardia that is most likely caused from dehydration while taking Spironolactone. I was prescribed the pill in a 25mg dose for blood pressure after hydrochlorthiazide almost killed me with low potassium(2 ER VISITS!). I’ve had episodes where my hr shoots to 150-160 with little exertion. When this happens I can usually drink about 24-30 oz of water and it goes down shortly after. I’m now taking just a 12.5 mg dose and have noticed less side of this phenomenon but it is still happening even at the reduced dose. Just wondering if I could have an underlying adrenal issue that might make me sensitive to the Spiro?
Unfortunately I know much less about managing blood pressure than I do about the hormonal components of spironolactone. As to whether you have an underlying issue that makes you really sensitive to spiro I would say yes, this is a possibility as spironolactone (and really any medication that alters your electrolyte balance and kidney function) has a downstream effect on hormones, adrenals, and neurotransmitters <3
Pops! I didn’t realize I put in my last name… can it be removed?
It can’t so I’m copying your reply here:
Hi everyone! I’ve been surfing the web for the last two years trying to figure out what is going on with my body. I’ve read all your stories and after reading mine, I’m sure you’ll agree I should be included in the Spiro dropout club. I began taking the drug about 4 years ago because at the age of 41 I didn’t think I should be dealing with acne. My dermatologist prescribed Spiro and after a few weeks, it pretty much disappeared. In the early days I experienced flushed skin and a feeling of being hot all the time, no big deal! As time went on other things started happening… I became very depressed and had trouble sleeping. Everyone told me I was probably peri menopausal.
The next issue was the 2-3 menstrual cycles each month. I went to my gynecologist for this and had several tests done. They decided that the best course of action was to have an cervical ablation. Wow! That was no fun. Soon after the ablation I started to notice that the smell they told me I would experience while healing, didn’t go away. I also experienced extreme stabbing like pains to my abdomen and a lot of spot bleeding. I continually called my gynecologist and I am almost positive I saw almost every doctor in the practice, all of them telling me there was nothing wrong with me and made me feel like it was just my imagination. I struggled with this for two years with no luck. Also, during that time I was experiencing extreme fatigue, major depression, and weight gain in places I’ve never had before.(my stomach, thighs and breasts.) ( I should probably mention I had a breast reduction the year prior to starting Spiro) I still had chronic headaches, still experienced sleeping issues. Add to that, my boyfriend continually asking me to speak to my doctor about my memory. I couldn’t remember simple conversations we had the week before let alone a year before.
The next issue were my eyes. My prescription kept changing. Along with that I suddenly developed allergies that effected my eyelids, making them appear swollen and heavy. My one shining glory has always been my hair. It stopped holding curl, became dry and brittle, and lost all its shine. I was loosing my mind to say the least. I’ve never had problems like this! I was a pretty healthy person. On paper I was the perfect patient. Always normal blood work and any tests always had great results. I couldn’t figure it out. After constantly harassing my gynecologist about my continued female issues, she recommended I have a partial hysterectomy. I had that done June of this year.
Anyway, to put an end to this story…while at work one morning, I was talking to some of the ladies I work with. One of them brought up her teenage son and his battle with acne. She proceeded to tell all of us about the amazing medication that they’re dermatologist wanted him to try. After going through the side effects she and her husband decided that this was not something they wanted to take a chance with. I asked her what the medication was and she told me Spironolactone. I asked her about some of the side effects and all of the sudden the pieces started coming together. I got online and after a few days of researching found hundreds of women who are suffering from the same problems I have been suffering from for four years. I have had tons of tests and nothing ever showed up. I questioned my thyroid, menopause, was it a result of the ablation? I even wondered if it could have been something like mold in my house but, I’ve lived in three different houses since everything started. The only thing that wasn’t accounted for was the Spiro.
I’m so angry. Isn’t it our doctors responsibility to check the medications we take for possible problems? One of the main complications of this medication was several periods a month. I never should’ve had the ablation to start out with, let alone the hysterectomy! Yes, I was given a list of side effects but, the only one that was listed was about the bleeding and you would think one of my doctors would’ve figured that out. I trust them to find possible complications that I don’t have any knowledge about. I’ve spent thousands of dollars on my health and it was all because of the 75mg of Spiro I took daily.
I stopped taking the medication two weeks ago, and I’m feeling a little discouraged. Every single thing that I’ve read says that fixing my current issues may be extremely difficult if not impossible. I’m met with the possibility of taking testosterone supplements, changing my entire diet, let alone my life and who knows if it will make any difference. People need to know what this might do to them. What is our health worth to us? I can’t get those years of my life or parts of my body back! I’m 45 years old and the possibility of a life dealing with problems associated with Spiro are almost guaranteed. I spend my days searching for anything that will fix the problems and most nights exhausted and in tears. All I ever wanted was to have clear skin, seems like a high price to pay.
Best of luck to all of you ladies, and thank you for posting your stories. I will be keeping an eye on the feed for any news or help you may have. I will also post any discoveries that I make. ❤️
Don’t be discouraged ! 🙂 it took me a long time but i got the hang of it. 🙂
I HUGELY recommend magnesium threonate as it helps restore magnesium balance in the brain, in addition to all I’ve said above and that’s been said in the comments.
I am so, so sorry about your struggle, but also so very, very glad that you’re on the way out of it <3 <3
Wow! I can’t believe how similar our stories are! I was on spironolactone in 2008-2009 when it was just beginning to be used for acne. They told me to go off when I got married and 3 months later I was a disaster! Your description of the anxiety is so good. I woke in the middle of the night feeling the adrenaline rush as if someone were pointing a gun at my head but the inability to move. Also the gut-wrenching feeling of losing someone you love dearly. All rolled into one terrifying feeling! And I’m not an anxious person to begin with. I wish there had been more information available at the time. I scoured the internet and got nowhere. I don’t have anxiety anymore but definitely still deal with severe fatigue and difficult monthly cycles. I found an herbal supplement that really, really helps with the fatigue and brain fog. It’s Adren-l-aid by a small company called Mountain Meadow Herbs. I’m not affiliated but hope that this may help someone else that needs some gentle support. It took me a long time to find something to help. I also love magnesium. I use a magnesium lotion before bed and it really calms me. Thank you for telling your story. Hopefully many can find the help here that I wished for when I was going through that terrible time.
i am really glad you shared about your story and also your herbs. 🙂 every bit counts. women reach out to me all the time and tell me what they read in this blog and the comments saved their lives. thank you, and good luck with the rest of your healing <3 <3 <3
Thanks so much for sharing your story! I too have a similar story and am so glad to have found this. I just found Spiro on a list of the 25 most dangerous drugs and I have been on Spiro for a decade and a few years before my first child 20+ years ago. What has it done to me? What have I done to myself for taking it? I had gastric bypass and found Spiro on a list of those drugs we do not uptake but only 50% so I decided to take double to get rid of PCOS symptoms and I was gaining 7-10lbs of water weight per week, acne since I was 9, very bad cycles and much more. I too think it has to do with electrolytes but couldn’t convince anyone…they just see obesity. (yes, still after 190lbs lost) I also have come across POTS and feel that was part of it but still didn’t see the Spiro connection until I realized Spiro wasn’t working anymore. I have been wanting to wean but really haven’t had the time until now to research it. Now is the time for weaning for me and I have to come off 200mg a day. Last I tried this I gained 10lbs in a week-clearly water. It was very scary. So, I am going to wean very slowly. I have had terribly low pulse and blood pressure despite being obese. I have always been very strong in my muscles regardless but no longer. I have pulled multiple muscles and slowly watched by quality of life drop to the point I can barely hold myself standing. Also, dropping has been my hormones. I was tested about a year ago and had almost zero testosterone, est, prog, dhea…what happened? It was Spiro. I too have Hashimoto’s and feel I have adrenal fatigue, no doubt…terribly high Aldosterone…off the charts. Spiro should be bring that down. However, maybe that’s the Spiro talking. I do not lose weight only when my blood pressure is up and my stress levels are up…strange I used to gain when that happened…lots of stress PTSD in my life. However, I only lose 3-5 lbs a year and have to work triple the amount as others and still have weak muscles and lots of injuries when I push too hard. I truly am just trying to manage health not a number on the scale. I am fatigued all the time. I hope getting off Spiro will help my quality of life…I truly feel this is the next step for me. I have a very limited Paleo style I have to eat. I supplement many including Holy Basil, Ashwaganda and Inositol. I also have homo MTHFR mutation and feel blessed to even be alive as I have malabsorption/malnutrition from multiple fronts and have no business being on any drugs. Thanks for this story…
What an interesting read, and even more valuable info in the comments! I ended up here for sort of the opposite problem… trying to find if my new spiro prescription could be the cause of my sudden fatigue. I used to routinely sleep 14-16 hours a night and had an impossible time waking up, which pretty much stopped completely when my new mental health nurse figured out my depression was of the bipolar sort and got me on the right meds for that. Total life transformation…after like 20 years of sleeping my life away I was finally sleeping normally, even sometimes having trouble falling asleep which has NEVER been an issue for me before. (I’ll take it! :D) Sleep was great for months, and then suddenly the past week I was having constant panic attacks (already have anxiety but actual panic attacks were maybe every few months, not every day for hours at a time!), my heart was randomly racing, and again it was impossible to wake up. This entire week I’ve been sleeping a minimum of 12 hours a night, right through alarms, just like I used to. Yesterday I woke up after sleeping 15 hours, had some food, sat down on the couch, and was suddenly dozing off. I couldn’t stay awake, it was like I had narcolepsy all of the sudden. I slept another 8 hours on my couch. And the sudden return of this life-ruining fatigue was making me panic even MORE.
I thought it might have been because of a change in the very mild (pediatric dose) anti-anxiety drug I’ve been trying… then realized it started right when I started the spironolactone.
Once I looked it up, I almost couldn’t believe everything I read about side effects… I had been prescribed this by 2 separate dermatologists (the first time I didn’t fill it because I was incensed that I’d gone to see this person to get checked for possible skin cancer and they’d handed me prescriptions for 5 other things they felt were wrong that should be “fixed”). Neither ever even mentioned side effects, much less told me to steer clear of potassium heavy foods or anything else of that nature. They act like it’s totally harmless, and here I am feeling like a disaster of a human again. I’ll take the acne over this nonsense any day of the week.
It just constantly blows my mind how casually doctors will hand out meds or advice that can totally shatter your life. I’m extremely glad to be on my bipolar meds, but with everything else I feel like I’m fumbling my way toward my own answers, and doctors be damned. Interestingly the only thing that ever totally cleared up my acne was doing an elimination diet… So clearly I need to tackle my diet more seriously. Glad I found your blog, now I’m going to go have a poke around at your posts/books about acne and PCOS and all the other stuff I’m also struggling with. I have to say, no single thing has helped my health or my understanding of mystery medical problems so much as people sharing their own experiences, so huge thanks to you and all of these commenters for doing the same.
Wow. I took Spiro for about 2 years for acne and PCOS. Everything seemed great until I had a few episodes of severe heart racing/panic attack/arm squeezing/syncope scares. Out of nowhere. I thought I was having a heart attack or stroke. I was in the verge of passing out. I followed up with an immediate doctor visit. My blood tests and bp tests were perfect, including potassium. My dermatologist, on a septate call, swore it couldn’t be related to Spiro because it was so safe and said she wouldn’t see me again until I had a full cardio workup, but to go ahead and keep taking the Spiro. I demanded to get off the drug.
The syncope and longer episodes of heart flip flopping/racing stopped within days. My sleeping is improving (I realized that my sleeping times were getting shorter and shorter during the past few months of Spiro.)
I still get daily heart flutters. Not as severe as before. Just a “bleep bloop” feeling in my heart every so often. But still daily. I have days of feeling almost normal, but then other days of flutters every few hours.
How long after stopping this stupid drug will it go on? Forever? My regular doctor says it doesn’t seem like a heart problem, since I’m what she considers low-risk and otherwise pretty healthy for 49 (no family history either).
How is this considered to be such a “safe” drug? Why is it so hard to find other information or studies besides anecdotal websites? Frankly, I’m frightened. Am I ever going to be ok?
I am wondering how quickly the side effects wear off. I took spiro for a week and by the end of the week my breast were so tender I couldn’t even wear a bra. I was also short on breath, heart pounding and very anxious. I have stopped taking the pill for 2 days now. I called poison control and they told me that I should be fine. My dermatologist office finally called me back and told me to not take it. They put me on 100 mg. I am sitting here still with a racing heart but its not as bad as it was. This has been a horrifying experience.
Poison control is right; you’ll be allright so long as you don’t take more. Use plenty of salt, drink lots of fluids, and consider a magnesium supplement. Most importantly, breathe! You were on it for a short time; you’ll adjust back to normal <3
Hello,
the GABA supplement link does not work.
Would you please tell me which supplement you are talking about?
Vinnie