Remind me never to go off my meds again

Note to self: Take meds

Photo credit: Unknown. Let me know if it was you or one of your multiple personalities.

I like to Google the drugs I’m on sometimes, just for fun, like normal people Google their names. That’s how I stumbled upon the fact that Lamictal can cause acne. Suddenly a light bulb went on over my head (one of the new compact fluorescent light bulbs because I like my metaphors to be environmentally friendly), and I realized this was the reason my face had been breaking out for the past year.

It is important to know that my skin and my hair are the two features I have consistently gotten compliments on throughout my life. I’ve always had good skin, which is why I never really understood what my college roommate was going through all those months before she got an Accutane prescription. Now I know, and I want to send an apology through a time portal back to 1998 for my lack of empathy. So sorry, K! Now I understand why you went through a drug approval process more harrowing than an FBI background check.

I tried different skin solutions on my face to battle the zits, but nothing seemed to work that well. And I honestly wasn’t that dedicated to a skin regimine since I was rather put out that I had to deal with this at all. I mean, this was also the year that I finally got enough white hairs that I decided to get a color glaze done at the salon, and I’m also getting pimples? Seriously, universe?

Coincidentally, at the same time I was Googling Lamictal my doctor wanted to try a new medication for my headaches. However, since I was already on two meds, he wanted to taper me off one of those since he didn’t want me taking three meds at once. I didn’t want to be taking three meds at once either, since I’d prefer just to take the ones that are working. So I was like, “Let’s get rid of that bastard Lamictal! Sure, I remember feeling better after I started it, but it’s totally making me ugly, so I will choose to believe the other med I am on is the better one.”

Oh. My. God. I was wrong. Oh, so, very wrong.

Like practically every headache drug there is, Lamictal is prescribed off-label for headaches. That means it didn’t go through the FDA approved clinical trials process to prove that it’s good for headaches. It was approved for something else, in this case epilepsy and bi-polar disorder. Yes, the meds I am on are also prescribed to the mentally interesting. Doctors can prescribe those drugs for other things, but drug companies cannot advertise the drug for use against headaches. Another off-label usage of Lamictal is to treat depression.

See where I’m going here?

I have felt sort of crappy the last month or two, which I attributed to my headache or not exercising enough or that time I ate half a cake or the stress from work. Whatever. We always have something going wrong in our lives to blame exhaustion on, don’t we? Recently it got to the point where I felt like I was walking through water to go anywhere. Just replying to my emails seemed like a mammoth accomplishment for the day, even though I could never manage to respond to all of them. It was a slow fall down to the bottom, which is why I probably didn’t notice it until I was staring vaguely into nothingness on my couch. At which point I was like, “I think I should go back on the Lamictal even if he gives me seventy whiteheads.”

So, I did, and I feel so much better! It’s kind of frightening actually, since it makes me aware of how much my personality and mood is controlled by chemicals. Just chemicals. It makes me think that people who have quick tempers could be made calmer just by tweaking those chemicals. Or people who are so annoyingly happy and energetic all the time just have different chemicals than me. I have chemical envy. I certainly believe that we have free will in regards to how we behave and react to things, but I also think the chemical interactions happening in our brains influence the decisions we make way more than free-thinking people would like to believe. I have a transgender friend who said she stopped thinking about sex ALL THE TIME to only part of the time once she went on estrogen. Which is not to say that women don’t have libidos, but that men are dealing with a different balance of hormones and that doesn’t go without effects.

Now I also empathize more with people who go off their meds. It never made sense to me why someone would go off a drug that was helping them. But now I have dreamed that bleary-eyed dream that you might not have to live with acne or insomnia or whatever odd side effects your meds are giving you. It’s odd how easy it is for forget how crappy you felt before you started taking your meds. I had honestly forgotten how bad the badness was. I forgot how horrible the headache was that first year or two. Maybe I wanted to forget. Maybe it’s a survival mechanism. That’s one of the odd things about pain, you can never truly remember how bad the pain was until you’re feeling it again.

I’m back on Lamictal, but I still have a headache. Ironically, like a lot of the off-label headache meds one of the possible side effects of Lamictal is headache, which just makes me laugh and laugh. (Not really. I mostly just manage an exasperated look.) I do now feel like my life is manageable, and I might be capable of blogging about my trip to New York and DC like I’ve been meaning to for over a month. And I can finally get back to all those clients whose work I fell behind on because I was depressed. It’s a tricky situation that, because I don’t want to whine about my health to my clients. I just want to get the work done on time, and sometimes I can’t, because that’s just what life with chronic illness is like.

Good times! So, me and Lamictal are here to stay. We should have a little dedication ceremony in the pharmacy section of Walgreens. I’ll wear a white dress made from pharmacy bags. You and me to the grave, sweetie! And if you could stop giving me pimples, I would love you just a little bit more.

Chocolate & Vicodin: My Quest for Relief from the Headache that Wouldn't Go Away
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[...] chilly, and my feet still hurt from walking to Brooklyn the day before. I was also entering that period of mild depression I blogged about recently. All of that combined with the fact that I was sleepy made me say, [...]

[...] like it might be an April Fool’s prank. I meant to write something about it at the time, but I’d gone off my meds at the time and wasn’t in a writing mood. So I’ll write about it now. Yesterday’s [...]

Debbi • April 23, 2012 at 9:37 am

I love “the mentally interesting.” Must remember to share that with my husband the shrink. Glad you’re feeling better, but damn that headache!

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Cheryl • April 23, 2012 at 11:30 am

I had acne up until I got pregnant 6 months ago and found that the best thing for it was the Cetaphil bar soap, the antibacterial version. Everything else was too harsh on my skin, or I did something really awesome like develop an allergic reaction to benzoyl peroxide (I miss Proactiv!) which was not pretty at all. Cetaphil also has a new product out called Derma Control which I’ve been using during pregnancy to reduce my oily “glow”. Good stuff.

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Michelle G • April 23, 2012 at 12:40 pm

Love the last paragraph. I would attend that ceremony!

I relate to your fear about the simple concept of chemicals controlling our moods and decisions. Some days I really feel like a slave to the wild moodswings caused by my hormones. I feel sorry for people that have to live and work with me, but somehow I can’t quite snap out of it and become rational and happy again. At least I’m aware of it, though. Probably a good first step…

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Becca • April 23, 2012 at 1:40 pm

ah, I dream of being able to go off my meds, but my chemicals just ain’t naturally right.

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Cari • April 23, 2012 at 4:03 pm

Oh man, I can definitely sympathize. I’ve suffered from acne for years. I was on medication for it too, but had to go off it due to some other circumstances, and my skin is now awful. Nothing works, and I’m pregnant so I can’t take the heavy duty stuff, but even that wasn’t working pre-pregnancy. Knowing that there is a way to control it, but it’s just out of your reach, is incredibly frustrating. I hope you find a way to control both.

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Anya • April 23, 2012 at 4:14 pm

I am long time reader and though I rarely, if ever, comment (I’m shady like that). When I read your last book a few years ago I’d never had a headache for more than for a few hours at a time so I could only shake my head sadly and slowly and say, man that must suck. But earlier this year…. oh man. I had a headache for TWO months (yes I know that doesn’t sound like a long time to you but it was a long ass time for me). IT. WAS. AWFUL. There when I opened my eyes in the morning, there when I closed them at night. After getting poked at by doctors, turns out it was stinkin’ sinus infection (no snot, no other symptoms) and with the right antibiotics it was gone in a week and a half. So I just want to say I’m sorry that yours wasn’t an easy fix, and I’m sorry you have to live with this, and you are an inspiration to me now more than ever. I was about to cry uncle after a few months– you are a freaking saint for living with this and maintaining such a fabulous sense of humor after a few years, mood drugs or no. You rock!

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JenFul • April 23, 2012 at 4:27 pm

@Debbi – I first heard that term “mentally interesting” on the Crazy Meds site, which is also where I found out about Lamictal acne.

@Anya – Sorry to hear about your headache, but I’m glad you were able to find relief. Sinusitis was one of the first things I investigated, but unfortunately the allergist said I have beautiful sinuses. I guess that’s the third feature I get compliments on besides my skin and hair :) And two months is definitely a long time when you have a headache 24/7.

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Debbi Does Dinner Healthy • April 23, 2012 at 9:08 pm

So the lamictal might be actually curing your headache and the remaining headache is just a side effect. Nice.

I was on some kidney drug and I lost my voice. I just thought it was a lingering cold but 2 months later I still had a raspy voice and googled the meds and lo and behold, that was the cause. Voice was back within 2 days. Google rocks.

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Colleen Kelly Mellor • April 24, 2012 at 9:52 am

Well, my young friend…I found your reference to Acutane interesting because as I told my daughter “Why would you want to take anything that sounds so suspciiously like an engine product (octane?)” Fortunately, she never went on it…but I understand the pull. I suffered from acne far worst than hers (more like your roommate, I’d guess), and yes, we folks will take anything to stop the punishing ordeal.

A word to the wise, however…I wished I never taken Prempro for menopause because at the time, I thought I’d take ANYTHING to stop the awful symptoms; however, when I got breast cancer, I attributed it to this drug I was on for over 15 years (every time I tried to go off it, the symptoms would rain down on me and I’d cave.) In retrospect, I thought it better to endure than go through the see-saw eternity of the other. Then again, I make no judgements–I don’t have migraines…those just might make me seek anything. I guess we just have to pick our poisons and read, carefully, all the info on the labels.

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Sheryl • April 24, 2012 at 11:02 am

I can relate, too. I’m on a depression med that has made it hard to lose weight, but I’d rather be plump than depressed. Last year my doc put me on lisinopril for high blood pressure — worked great for that, but I developed a hacking cough that would not go away, and I had to research it myself to realize it was the new med. I am a singer, so that really sucked. Luckily my doc was OK with trying a different BP med, and fortunately it works and I don’t have the cough any more. Better living through chemistry, I guess.

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JenFul • April 24, 2012 at 3:00 pm

@Colleen Kelly Mellor – Oh man, that’s awful that the meds that were supposed to make your healthier contributed to your breast cancer. I’m grateful that I have the Internet at my disposal, even if it does contain a lot of inaccurate information. I doubt I would have ever figured out the acne was linked to the Lamictal without Google. I haven’t read about any Lamictal contributing to your propensity for any other serious diseases, but it’s something I will definitely be vigilant about when researching any new meds.

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Gingerzingi • April 24, 2012 at 3:12 pm

You do have absolutely beautiful skin. So hopefully the acne will not be a longer-term effect. Otherwise you’ll have to suffer now what the rest of us went through decades ago!

I totally understand about going off meds, you said it exactly: “It’s odd how easy it is for forget how crappy you felt before you started taking your meds. I had honestly forgotten how bad the badness was.”

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Susan M. • April 24, 2012 at 3:28 pm

I love this, because I am ON several psychiatric meds and I know that without them, I would not be able to function. I must print this out to keep.

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Jill • April 24, 2012 at 3:48 pm

I hear you about the chemicals. I have anxiety, I was Paxil for 2 years and gained 30lbs but now that I’ve been off the meds for over a year (and still battling the 30lbs) I’ve found I’m far less tolerant. I didnt even realize the anti-anxiety med also helped my patience and tolerance, as well as PMS. OMG, I’m a raving bitch now with PMS whereas on the Paxil it was tolerable. I’m so afraid to go back on anything else b/c I dont want anymore weight. Oye, the stuff we go through just to feel “normal”.

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elayne • April 24, 2012 at 4:01 pm

Empathizing. I recently went back on antidepressants. My body has this thing where it loves the hell out of any new drug I’m on, and plays very nicely with it, for about three to six months, at which point my body decides to take its toys and go HOME and never speak to that new drug again. So even when I find something that works for me, I know that in a few months I’m going to have to be looking for something else.

I did not want to go on Effexor because of the discontinuation syndrome – several friends have had a really rough time with it. And since I know that odds are, sooner rather than later, I’ll have to go off of it and try something else, I wanted to avoid it. But I was tired of feeling suicidal, and I have crappy health insurance medicine-wise, so I let myself be talked into Effexor. A week after we increased the dose to the “standard” 150 milligrams, my tongue dried up and fell out.

Well, not quite. It lists “dry mouth” as a side effect, and I’ve had dry mouth before, but this was not “dry” mouth, this was “dessicated, mummified, Sahara-desert, absolutely no moisture whatsoever, all the water in the world won’t help” mouth. My tongue fissured so deeply I almost looked like one of those people who have surgery to give themselves a forked tongue. So off the Effexor I went (with doctor’s approval), despite having just dumped a hundred bucks on the three-months’-supply. Now we’re back on the experimental merry-go-round, hoping to find a cure that’s not worse than the disease. Three weeks later, I still feel like someone’s run an electric wire through my tongue and most of my teeth, and I cringe to think how many cavities I’ll have at my next dental checkup.

I have no objection at all to “better living through chemistry;” I’m just not certain it actually EXISTS for everyone.

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Colleen Kelly Mellor • April 24, 2012 at 4:39 pm

@JenFul – Yes, Jen, and then there was the incident where my surgeon prevailed upon me to take Tamoxifen, as she proclaimed: “If I were you, I’d do anything to prevent a reoccurrence of cancer. I lost two patients this week!!” I was most upset.

When my oncologist (the expert in cancer) answered my question, “Should I take Tamoxifen?”, she said “Absolutely not…you’re not a candidate for it. As a matter of fact, it will increase your risk of ovarian cancer.” So, you see…one does need to be vigilant, do your homework, assess..assess…do not merely take another’s opinion, even if they appear to be experts. I tell my daughters this all the time–now. Today, we all have the tools at our disposal…be your own best health advocate.

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Kalyn • April 25, 2012 at 9:12 pm

I’m so glad you’re feeling better. And I also wanted to say, you are such a great writer!! Seriously.

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Moien • June 8, 2012 at 7:17 pm

Hey there :) Just a little question.. the thing is, I started lamictal about 7 months ago, and about 4 months ago I started breaking out like crazy. Arrrghh, it’s horrible! So did you skin clear after you stopped the meds? And how long time did it take before your skin cleared again? Glad to see I’m not the only one :)

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JenFul • June 9, 2012 at 7:18 pm

@Moien – We ended up reducing my dosage to 100mg a day. I still have a bit of acne on my forehead, but I haven’t had any on my cheeks lately *knock on wood* I’ve also been a lot more diligent about washing my face regularly.

I’d recommend reading the forum thread I linked to in the post and talking to your doctor about your options. You might want to see a dermatologist as well and be sure to mention it’s Lamictal that’s causing the problem.

Good luck!

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Diana Lee • June 18, 2012 at 2:48 pm

It’s so weird how we take these meds and get weird side effects, but somehow never make the connection between them. Happens to me way too often with my migraine prevention meds.

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Kathryn • October 17, 2012 at 8:12 pm

I am sure you have investigated this, but I just saw this article about hemicrania continua and the drug indomethacin… Just in case. http://betweentwopines.wordpress.com/2012/10/11/womans-20-year-headache-finally-gets-a-diagnosis/

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anji • February 28, 2013 at 1:19 am

Hey! I ended up being diagnosed with Complex Regional Pain Syndrome (CRPS) and the 24/7 pain sucks arse big time. I know totally what you mean when you say, “I forget how bad the pain was, until it comes back…” I have it every day but now it’s like, a 6/10 rather than a 9/10… when it goes back to 9/10 or 10/10, you really just… wanna… scream!

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Susan McConnell • February 28, 2013 at 4:22 pm

I too am on several different medications, two of which caused me to gain significant weight. But I can’t go off either of them without risking going back to “the dark place,” which is how I refer to my years-long struggle with several depression and crippling anxiety. Medication is almost always a trade-off.

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Chocolate & Vicodin: My Quest for Relief from the Headache that Wouldn't Go Away Half-Assed: A Weight-Loss Memoir

Jennette Fulda tells stories to the Internet about her life as a smartass, writer, chronic headache sufferer, (former?) weight-loss inspiration, and overall nice person (who is silently judging you). She was formerly known as PastaQueen. You can contact her if you promise to be nice.

Disclaimer: I am not responsible for keyboards ruined by coffee spit-takes or forehead wrinkles caused by deep thought.

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