AIP Stories of Recovery: Megan’s Recovery from Narcolepsy and Hypothyroidism

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AIP Stories of Recovery is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please let us know by filling out our interest form.

Megan’s decision to stop her medication in favor of natural solutions was less of a choice and more of a necessity. After being diagnosed with severe adrenal fatigue and hypothyroidism, it was clear that the Adderall (an addictive amphetamine) she was taking to treat her narcolepsy was either causing her other illnesses, or making them worse. Her healing on AIP was gradual but noticeable. One of the best parts of Megan’s story is the way she turned the potential isolation of AIP cooking into a social activity, and later a business. 

What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?

I wouldn’t say my health journey began 18 years ago, but my diagnosis did. After a diagnosis of narcolepsy (which took a few years to come to), I quickly covered the symptoms with prescribed Adderall. After 16 years of this, I realized being on the Adderall was not sustainable. It was highly addictive and was ruining my adrenals and thyroid. I also still found myself tired, super dry hair, foggy brain… all the symptoms of hypothyroidism. This is when my real health journey began. I had done a lot of reading, so I was prepared with my requests of test when I went in. This is when I learned I had hypothyroid and severe adrenal fatigue. It’s a chicken and egg question as to if I had this all along, developed it, or the Adderall caused it — regardless, I’m working on it all.

I have reversed narcolepsy and am still working through the thyroid issues. If I can be totally candid, I had had a great year, but recently hit a flare up with my thryoid, so I’m running some more tests to learn more about what’s going on and am back on the autoimmune diet (after some reintroductions over the last year).

Describe what the lowest point on your health journey was like.

After a month on the autoimmune diet, I saw some improvement, but I was still too tired to exercise (a big part of my life), I felt isolated from friends, and I was spending all my energy thinking about and preparing food… quite honestly, it sucked. I felt isolated and was ready to give up. I was facing the reality that this was not going to be a quick fix. I was fortunate to have a supportive group of friends and family kept me going. I was also incredibly grateful for the number of online autoimmune communities and resources I discovered during this journey — it always brought me hope! I had to relearn how to connect with others, which meant being vulnerable at times, which was scary, but from all of it, I started inviting friends over to meal prep with me, which has organically (no pun intended) become a small business, Chat & Chop.

What challenges influenced you to look for a solution? Basically, what was the tipping point?

I was robbed while out of town and paid 100s of dollars for a new prescription to be overnight shipped to me. This made me realize the addiction I had on the drug and the fear I had on facing my disease finding an alternative. Additionally, despite taking medication to cover the narcolepsy symptoms, I was still not feeling great. Also, I knew if I ever wanted a family I would never be able to carry a child on the medication. I had to find an alternative.

I realize getting off medication is not an option for everyone — I say this as I was recently placed on thyroid medication. However, I was on an amphetamine and it was not helping find a cause, but was only covering my symptoms.

When you found a protocol to help you heal, what was it and what was your first indication that it was working?

I ate pretty clean before going on the autoimmune diet. However, the autoimmune diet helped me get to the very foundation of food. In fact, I discovered some “approved” items actually didn’t work for me (e.g. coconut). However, I would not have identified which foods jived and which ones did not had I not embarked on this diet. For me the measure of success was easy… can I make it through the day without naps (yes, that’s plural)? Then it became, can I exercise without cataplexy?

One thing I was glad I did, months before this journey, was I journaled all the symptoms I was tired of having. Having this helped me to reflect on where I was heading and the progress I had made… especially on the days I felt as though I was making no progress at all. I frequently update this list to compare where I’ve come from and where I want to be.

What resources have you used on your healing journey so far and how did you find them?

One of my favorites is The Healing Kitchen cookbook. The Autoimmune Solution is also a great resource. A lot of different blogs out there for recipes. I like Dr. Mark Hyman — he does good research and gives good recommendations on supplements. Gosh, I’ve used so many resources, I should keep better track of them. I also began meditating as part of my daily routine, using Headspace, which has helped.

Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?

Prior to finding a holistic doctor, I had done an intensive acupuncture series that I found improvement from but then I plateaued. Additionally, I had worked closely with an Ayurvedic doctor, but still didn’t find enough success that I was able to get off the Adderall. So to answer the question, no I did not reject any treatments. I didn’t even tell my doctor I wanted to get off the medication, I just found a new one. I sought out a holistic doctor. Despite that, I always went with my progress journal, list questions, and tests requests. We ask a lot of doctors, so it’s important to do our own homework and take ownership of our health.

It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?

I love this question, because it is so important to take time and reflect on this. Connection with others is a HUGE part of the healing. My journey has been (and continues to be) a humbling one that makes me ask this question often… (with no influence of Marie Kondo! Ha). I find true joy in play… something we “mature” out of as we age. When we are all consumed by chronic illness, it’s easy to become serious and withdrawn, making us forget even ore the healing element of play.

During my journey, my boyfriend (now, husband) and I had to find new ways to connect… iI didn’t have the energy for the long runs or bike rides we used to do. So we made daily “dare” cards that had silly action items, such as do a cartwheel in the living room, put music on full blast in the car, living room dance party for 1 minute, or put a note on a strangers car, etc. This brought so much fun to our relationship. Additionally, finding ways to take the focus off myself and doing a simple act of kindness for someone else or inviting someone over for dinner brings me great joy.

If you’d like to learn more about Megan’s story and her Chat & Chop parties, check out her business’s website, and her Instagram accounts, here and here.

Would you like to share your Story of Recovery? Let us know by filling out our interest form.

About Grace Heerman

Grace Heerman is a writer, content coach and yoga teacher from Seattle. Grace designs websites and creates content that capture how great her clients are so they can effectively and authentically share their expertise with the world. Here at Autoimmune Wellness, Grace writes book reviews, manages blog content, and organizes social media publishing. She splits her time between living in Seattle with her friends, Minnesota with her family, and Asia, where she likes to spend the winter months. You can find out where she is now on Instagram and learn more about how she balances work and travel on her website, Said with Grace.

2 comments

  • Jacquelyn Phelps says

    I recently found your podcasts and could definitely understand the lack of diagnosis and going from one doctor to another, etc. etc. etc. It took more than 30 years for me to get the diagnosis of non-celiac gluten intolerance. It began at 12 yrs old with rashes, diarrhea and constipation, brain fog, severe pain in the intestines after eating anything with wheat, etc. At 16 yrs old, I began having severe bleeding and pain with menstrual periods. Doctors said that it was in my head. LOL At 23, I was finally diagnosed with endometriosis and infertility. At 45, the endometriosis had progressed into a severe condition and had to be removed with a complete hysterectomy. Now, in my 50s, endometrial lesions have attached themselves to my colon and are attacking the tissue. I was diagnosed with Hashimoto’s disease at 36. My Point is: health is the most important gift you can give yourself. One autoimmune disease has long lasting side effects for the rest of your life. Once diagnosed, it is with great urgency that you get on an autoimmune protocol diet and address the issues. When I was diagnosed and having these problems, there was nothing to read or investigate for options. At 38, a friend introduced me to different ways of eating and avoiding wheat and olive oil and coconut oil. I think this awareness changed my life and my body’s genetic proclivities toward other autoimmune diseases and cancer. Thank you for having this podcast, and I am looking forward to learning more from you and your guests!

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