Me & my meds

me & my meds: topamax, spironolactone, effexor, lo loestrin fe (birth control), ativan, norcos

This is my account of my history with medication. Everyone reacts to medications differently, and none of this is to be taken as advice. I’m writing to share my experience and contribute to the conversation re: mental health.

I have a long and complicated history with medication. I’ve been forced to take medication before for a misdiagnosis (that ended up doing only harm, and no good). I’ve had medication pushed on me by doctors that I didn’t want or need. I’ve reluctantly taken medication that ended up being an absolute lifesaver. I’ve gone off medication when I’ve thought I didn’t need it anymore and ended up realizing I really, really did. I’ve spent hours researching online to find the right medication for myself when no doctor could come up with the answer. This is not an exhaustive list.

I’ve never fully opened up about this to anyone, because there’s often such shame attached to needing something outside ourselves to survive — even more than that, there’s shame attached to WANTING something outside ourselves to survive. When the medication you take is to soften the edges of your anxiety, or to make the dips of your depression a little less severe, you’re often accused of taking the easy way out, especially if you’re one of those people with mental health issues who can put on a really good face. People understand medicating if you’re visibly falling apart, but if you seem “pretty okay” for the most part, it’s hard to understand why you need any extra help. You’re often told, “Life is hard, suck it up.” Your strength becomes a weakness, a thing to criticize. But the thing is, that strength, that good face that you put on, that’s a survival technique—a coping mechanism — not a way to live, day after day. Medication helps so many of us do more than just survive.


FIRST (BAD) EXPERIENCE WITH MEDS

The first time I took any kind of real medication (aside from Excedrin or Tylenol) was when I was 15. I was having a lot of behavioral problems — fighting with my parents, threatening to harm myself, sneaking out a lot, etc., and my parents were basically desperate. At the end of a particularly bad fight with them, I locked myself in the bathroom, threatened to hurt myself, and they had me 5150'd (72 hour psych hold). During this psych hold, I met with a psychiatrist one time, for what couldn’t have been longer than 10 minutes, and she diagnosed me as bipolar.

The thing is, I’m not bipolar. I never have been. But hers was the final word, and they started me on a regimen of Depakote, which, if you’ve ever heard of it, often causes (among other things) major weight gain. Because I was not bipolar, this was the only thing it really did for me, and at the tender age of 15, I gained 30–35ish pounds. Prior to this experience, I wasn’t yet obsessed with my weight, so I don’t know the exact number, but it’s in that ballpark — after this experience, my obsession with numbers began. My weight gain also sparked a depression, and this only made things worse — we sought a second opinion regarding my bipolar diagnosis, and when the new doctor confirmed I was not, in fact, bipolar, I was immediately weaned off the Depakote.

This story is important for a few reasons. It was my first encounter with a psychiatrist, and with medication, and it was during an incredibly vulnerable time — and she was wrong. Because of this experience, I am incredibly distrusting of doctors, which has partially served me well — I do a lot of research on my own, which has made me confident in my own decisions and I’m not nearly as fearful of doctors as some others, but it does make things hard sometimes. It’s also important because prior to this experience, I was mostly happy with my body, and all of a sudden, I had a new body to contend with, and I was incredibly uncomfortable with it. I developed disordered eating habits that morphed and changed for the next decade, and learned that my body was a thing that was out of control, and yet, it was a thing that completely consumed my thoughts.


DISTRUST OF MEDICATION, AND TRYING AGAIN

Because of the horrible Depakote experience, I was convinced my body was ruined. I was depressed, and bounced between trying to not eat anything, “failing” at that and then binging/purging instead, as well as hiding my depression by drinking and doing drugs with friends. I was generally a mess. My parents wanted me to try therapy and perhaps antidepressants, but at that point, I didn’t want to ever touch medication again — I was sure that any medication would make my body gain more weight, something I was terrified of. I was also living with extreme anxiety, both general and social, and doing nothing about it.

All of this got so bad, that my parents were terrified I’d end up harming myself irreparably. They sent me away to a program for my senior year of high school. None of the counselors there were qualified therapists (something my parents didn’t know at the time — the school’s advertising is very good at covering up pertinent facts and hiding important things from desperate parents), and I did not get the help I needed. While our relationship is incredibly strong now and I do not fault them for their decision, because I understand how the program presents itself, I fault the school for much of what I still deal with today when it comes to anxiety, depression, and some other complex health and mental health issues (I’ve recently gotten both a PTSD diagnosis and a fibromyalgia diagnosis, which is linked heavily to trauma). When I came back at age 18, there was a lot of adjusting to do, and while I was no longer drinking or doing drugs, I was still experiencing anxiety and depression, and much of the same body image issues as before.

Whenever I’d mention any of these things to my primary care doctor, she’d try to write me a prescription for Zoloft (which she had many promotional materials for in her office). This happened five or more times, even though I said no every time. The last time she mentioned it, however, I was so desperate to feel better that I did get it filled, but the first dose gave me such bad dry mouth and lock jaw that I didn’t ever take it again. Then, when I was 24, my eating disorder took a turn for the worse. I was binging and purging more regularly than normal, and it felt like this terrible secret I was hiding. I regularly canceled plans for no other reason than that I felt like I didn’t deserve to spend time with anyone — I spent so much time thinking about food, and about my body, that I felt uninteresting, and my eyes would often glaze over in the middle of conversation as I’d start thinking about the shape of my thigh or the number of calories I’d already eaten that day. I felt like I was doing people a favor if I canceled and stayed home to watch Netflix instead.

Later, I did a lot of research and found that Topamax (topiramate), which is actually a drug that helps people who have seizures, can work to help people with binge eating disorder (BED). It works on the impulse center of the brain, and has had miraculous success in some patients. It also works for migraine patients, another thing I deal with, and people often report losing weight on it (so it’s actually kind of a scary thing to prescribe with eating disorders, but I’ll admit I was hoping this worked for me). The drug also has a lot of side-effects for some people—tingly hands, hair loss, short term memory loss, brain shivers, and more. People on the drug forums I often consult online emphasized that you’d be stupid to go on the drug for weight loss alone — that the side effects can be intense and scary. At that point, however, it was about more than that, as I was binging and purging daily and it was compounding my anxiety. It was becoming hard to work and keep up a social life, and I didn’t know what to do; I felt like it was worth it to try. But I promised myself that if I experienced any of these things, I’d get off the drug immediately. I booked an appointment with a psychiatrist to ask about getting put on Topamax.

A month later after I had my appointment and got my blood work, she put me on the drug. Within a month after that, I felt noticeably calmer when it came to making food choices. My thoughts didn’t revolve around food all day anymore and I didn’t feel anxious when I’d have to eat in front of people. I did have mild tingling in my hands for the first three weeks, but that was the only side effect, and it went away. Soon, I stopped counting everything that crossed my mouth (even in approximation). It was a literal wonder drug — within a year, I was eating like a normal person.

That’s why I figured, “Hey, I’ve stopped all my bad habits! I don’t need this drug anymore!” aaaand I weaned myself off of it about a year later. Without my doctor’s help. This was a bad move. Not because anything bad happened to me — I was fine — but I should have never gone off it in the first place. Because while I was fine, for the most part, another year later my disordered eating patterns crept back in during times of stress, and then I had to get a brand new prescription for it while I was already dealing with some heavy shit.

During the time I was taking Topamax the first time, I also was diagnosed with ADHD. For this, I briefly took Strattera, which is an ADHD drug that I partially credit with helping me finish college — it’s not a stimulant (but I forget what class of drug it is, that’s what Google is for), but to get my insurance to cover it, I had to try Ritalin and Adderall first and tell them they didn’t work for me. They didn’t — both gave me headaches. I also went off Strattera ~on my own~ at the same time that I went off the Topamax, because I thought I’d learned good study habits, and I mostly can focus these days fine without it. I think that I went off these drugs for the same reason that many people are scared to go on medications — because there is such a stigma around taking medications, and I didn’t want to “be taking medications for the rest of my life,” but at this point I realize that I might just be someone who needs to, and that’s okay. That’s also why I’m talking about it — so that other people realize it’s okay, too.


WHAT I TAKE NOW

These days, I take a few different things. I’m back on the Topamax again, and while I definitely still have some disordered eating THOUGHTS, I don’t act on them. I think they’ll always be there, because society is fucked and the way we’re told to compare ourselves to each other and celebs and even past versions of ourselves is fucked and I still do it some days, but I’m doing it with perspective lately. I don’t know how long I’ll take the Topamax — I can’t take it if and when I try to get pregnant, and that scares me, because I am scared to be experiencing so many different things happening to my body all at once, but I’ll deal with that when it happens.

Topamax gives me acne, so I take spironolactone. Also, birth control. Boring.

I’m also taking Effexor, which my headache specialist gave me because it can reduce headache frequency, but it’s also an anti-depressant, and it really works for me on both fronts. The thing that frustrates me about this (and about all medications) is that no doctor has EVER mentioned side effects to me, and she didn’t mention that I’d have zero sex drive on this medication. I’m just…not interested in sex. I’m hoping this will go away, because other than that this medication has been an absolute lifesaver for me, but we’ll see. The scary thing about doctors not talking about side effects is, a friend of mine also went on Effexor, and she had a terrible experience — everyone reacts differently to medications, which is partially why I used to be so hesitant, and retain some of that hesitance still.

I also take Xanax when I’m having anxiety, kind of like a spot treatment, and Norcos for my migraines. I’ve tried a literal million different medications for migraines (Imitrex, Relpax, Cambia, blah blah blah etc.) and none of them work — Norcos work for me. So, that’s what I take. If my headache frequency was still 3–4x a week, I would still be looking for a better solution, but now that the combination of daily Effexor and Botox every three months has my migraine frequency frequency down to 1-ishx a week, that’s low enough that I’m comfortable taking a painkiller for them.

And that’s that.


About a year ago I wrote about how, even though I’m open about taking medication when it comes to talking/writing, I almost hid my medication when someone was coming over to snap a few pictures — but I didn’t. I’ve also written about why shaming people who take medication for mental health is flat-out wrong, and I will continue similar conversations for as long as I live. And that’s why I wrote (and updated) this — because I wanted to really go there, and talk about it in full. To talk not only about the general fact that I take medication, but what and why and how it makes me feel, and all the little things that people often want to know but don’t want to ask. I wanted to put it all out there, so here it is. I’m not a medical professional by any means, and any medication changes or prescriptions should ALWAYS be discussed with your doctor, but if you want tips on how to advocate for yourself or feel confident while talking to your doctor, I’m here. It’s hard, and everyone deserves support.