And then there were meds

I last wrote about this in 2012 when the very expensive sleep study I underwent showed “nothing remarkable.” That was pretty devastating to me, and I just gave up hope at that point. I couldn’t afford another sleep study, and was afraid it would come to the same conclusion anyway. And I wrongly thought that was the only avenue for help for me.

Nearly two years later, I was at dinner at CodeMash and talking about the symptoms that have plagued me since I was a kid. My friend Zach (@theotherzach) gave me a little quiz about what it was like for me in school. I daydreamed a fair bit in class, fell asleep, tested very high, but always performed far worse than my test scores indicated I was capable of. He told me to read “Driven to Distraction” ASAP and felt that I would find myself in that book. Another of my symptoms is that I fall asleep about 10 minutes into reading a book. It seems to have gotten worse over the years. So I barely read more than social media snippets these days. I put it on my list and looked it up to see if it had a version on Audible.com. I find that I can only manage to consume book-length information by listening to an audio version while also doing something else like driving, mowing the lawn, shoveling the driveway or cleaning the house. Without another activity to occupy my body, I will fall asleep about 10 minutes in, just like reading. At that time, I couldn’t find it and forgot about it for a few months. I think I ran across a reference to it somewhere and gave my search another try.

driven_to_distractionThis time I found it. There was a 13+ hour unabridged version and a something like 1.5 hour abridged version. I got the unabridged version. Glad I did. I did find a lot of myself in that book. I was the daydreaming girl in the back of the class who occupied my mind with other things and couldn’t focus on tasks in class. I was just smart enough to compensate. It was easy enough in elementary school. As I got older, it got harder and I focused most of my energy on cleverly skipping class and missing as many days of school as I could without having to make them up in the summer. I finished high school with around a 2.75 average and headed to college. I tried harder and did better there, but dropped out after changing majors and schools a few times and never looked back.

After listening to that book, I felt I likely had ADD [Note: Apparently ADHD is the official term for all things under that umbrella right now. I don’t like it since the H stands for Hyperactive, which I’ve never been, so I just use ADD]. Narcolepsy had been ruled out by the sleep study, so that’s what it had to be. I also watched Greg Baugues’ (@greggyb) excellent talk on Devs and Depression from Steel City Ruby. That really resonated with me. The chronic procrastination, things starting out well at a job, but ending the same way after a year or so… Anyway, I got health insurance for the first time in a couple years and made an appointment with my GP for the day after it took effect. He updated my shots and did a wellness check for me, but said that he couldn’t test or diagnose me for ADD, and that I’d need to see a psychiatrist for that. Great… since my insurance does not cover specialists.

I looked online and found a psychiatrist that specializes in ADHD and adult anxiety disorders in my area. Made an appointment for the following week. One of the things I liked about him is that he prioritizes new patients so they’re not stuck waiting without help for months after they finally decide they need help.

I made it to my appointment. I struggled to make it on time, as I pretty much always do. Thought I’d be a half hour early, but it was only 5 minutes. Went in and he asked me some questions about my past. I told him about reading Driven to Distraction and the parts that resonated with me. But I also told him about what brought me to the sleep study in 2012 and how surprised I was by the results I was given. He said that he’d like to see my actual results as the interpretation of sleep studies can be quite subjective. After awhile, he said he could set me up with a study at a place he felt did a better job, but based on my symptoms alone he felt fairly sure it was narcolepsy. He continued on to say that he has seen many ADHD patients, but he has never encountered somebody who had the falling asleep type symptoms to the extreme that I did. And I had to fight back tears.

I felt vindicated. Finally, a doctor understood me and was willing to help me. He said that there was a newer drug he wanted to try me on that was only approved for narcolepsy, but that had also been known to treat ADD symptoms for some people. He felt it would help treat my primary problem (narcolepsy), and also help with my ADD symptoms. I wasn’t sure how to react. Inside, I was doing a dance of joy. FINALLY!!!! I was afraid that I’d somehow find my way out of that office with just another bill and no help, though. I did my best to play it cool. And I left the office with a script and a coupon for a free month of the medication. He also warned me that it’s prohibitively expensive otherwise and could run upwards of $500/month, because of course it is. I put that out of my mind for the time being and just focused on seeing if it helped or not.

I filled my script and took 1/4 dose right then. I think I felt it take effect about 20 minutes later. I just felt kinda better. Lighter. Maybe even a little lightheaded. Went home and did some work. And I kept at it until the evening. I was worried about getting to sleep, because difficulty falling asleep was one of the side effects. No trouble there. Fell asleep fast and got about 8 hours in. Better than usual! Felt awesome in the morning. I woke up at 6am, took half a pill and was working a half hour later. Completely unheard of for me. I usually have trouble getting up in the morning, and then just mess around till after lunch without doing much. Then I’d feel sleepy after lunch and doze a bit until my boyfriend got off work and do something with him. Days just slipped by.

But this first day on my new meds, I was a whole different me. I’d think of something on my to-do list, and then I would just DO IT. Without hesitation, without distracting myself with a bunch of other stuff… I would just DO IT. And that was amazing. I was able to stay heads down in a task from start to finish. And I just kept doing that all day long. Just ticking boxes off my Wunderlist… It felt great. And when it was time to go to sleep, I felt tired and ready for bed. And I slept.

Unfortunately, I was so focused on what I was doing that I forgot to eat dinner. Appetite suppression is one of the side effects, and I didn’t feel hungry or like I needed to eat. Normally, that was an easy distraction for me, and I’d snack a lot throughout the day. I didn’t eat breakfast in the morning, either. Just noticed I had a headache. And I freaked out about that. Thought it was a side-effect and was afraid I’d have to be all Flowers for Algernon after just one great day on the meds. But I did eat some food eventually and started to feel better. But the headache persisted. And then I realized I was going through caffeine withdrawal.

Before my appointment, I had been self-medicating with caffeine as much as I could. Took in anywhere from 200mg-400mg a day. I keep track of my sleep with the Jawbone UP, and was keeping track of my caffeine intake with the UP Coffee app on my iPhone. It didn’t matter if I had my caffeine in the morning or in the evening, my sleep was still pretty good. I was getting 7+ hours a night. But I was told not to drink caffeine or alcohol with the medication, so I stopped cold turkey after my appointment. Yes, good old caffeine withdrawal. Maybe the last time for that one… But it made for a very unpleasant day.

The third day was far better. Felt like I got through withdrawal by that morning for the most part, and I had been eating decent and regular meals. The headache went away, and my ability to focus and accomplish things returned. I was overjoyed to realize that the awful I felt the previous day was just due to a lack of food and withdrawal, and not side effects of the medication. That afternoon, I even had an amazing moment where I realized I was sitting outside on the patio of a loud bar/restaurant, coworking with friends who were talking loudly right next to me while a football game blared near my head, and yet I was able to write an email and do some work with little trouble. Again, that is completely unheard of for me. Pre-meds me would’ve been completely distracted by all the noise the whole time and struggling to drown it out with my headphones up as high as I could manage them. I might’ve even fallen asleep due to all the activity around me. But there I was without my headphones on and just able to focus on what I wanted to rather than everything all at once all the time.

Tomorrow marks my first week on meds, and I’m so grateful to be starting this new chapter of my life. Not that I haven’t been distracted at all this week, or that I’ve done what I should be doing every waking moment. I haven’t. I’m still me and still human. But I have abilities that I did not have before I started the medication. And I spent a lot of my life feeling damaged for things that were beyond my control. Falling asleep at inappropriate times can be pretty embarrassing and humiliating. Not being able to focus on learning or doing things for work has definitely held me back in both school and my career. I had so many people tell me that I just needed to try harder or buckle down. But that wasn’t the case. I couldn’t. And for a long time I believed that I probably could if I really wanted to. But I proved myself wrong on that time after time as well.

I finally have the tools I need to be successful. Now I’m working on learning how to use those tools. Some days will be better than others, but I’m excited about this next phase. And I suppose part of my point here is not to let a sleep study or just one doctor or just one person tell you they can’t help you or that there’s nothing wrong with you when you really feel they’re wrong. Keep looking and keep asking. Don’t give up on yourself. You deserve to live the best life you can. <3 <3 <3

5 thoughts on “And then there were meds

  1. This is an extremely helpful article. It helps me understand your process of finding the help you need. Second opinions are imperative, and a good clinician will encourage you to seek them. Thankfully you were able to finally listen to your intuition and get the help and support you needed. That is awesome!

    • I’m glad you think it’s helpful. I’ve had a tendency to want to hold back on my blog and sort of wait till I have everything figured out before posting something. “What if things don’t turn out OK?” Well, that’s life and we’ll figure that out, too. I’m planning to post more frequently during the journey instead of waiting till I feel like I know how it turned out to decide how I feel about it. 🙂

  2. Jacki, I’m so glad you found a doctor that was able to understand what was going on and identified meds that could help you. What a remarkable story! I’m sorry you’ve had such a long experience with this, but so happy to hear about the new chapter in your life!

    • Thanks, Deborah! I really appreciate that. That’s exactly how I feel about it. Just glad to start this new chapter in my life. Today marks my first week on the meds, and I almost can’t believe how much I’ve accomplished. And that’s including a couple days where I did little more than rest. It’s a whole new world. 🙂

  3. Hello:
    Your symptoms are remarkably like mine. As is your frustration. May I ask, what is the narcolpsy/ADD medication you were on? I’d love to know as I’ve tried a couple myself but still have issues. Thank you ever so much for sharing your story. Thanks 🙂
    Take care and I’d love to know which medication you found helpful.

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