I was sitting at the headache clinic under gray dim lights as I was surrounded by a whispering team of nurses. One grabbed my blood pressure and another nurse started intake by asking about my pain level. Without thinking twice, I replied, “About five or six” as I grabbed my forehead to reinforce the pain.
I was at the clinic again for an emergency IV to (hopefully) give me some relief. By now I had learned to keep my pain level under seven to stay out of CT – something I desperately wanted to avoid. My brain MRI findings were always clear and another CT scan would only further delay treatment… and I had had enough!
As the nurses continued poking and prodding me I sat there wondering, “How did I end up here?” All the other migraine patients with varying headache disorders physically appeared ‘sick’ and I was healthy – right?
Well, let’s start at the beginning… here’s the long story.
My sister, Jenn Omo, and me at the Nice 70.3 Championship finish.
The Beginning of the End…
After years of suffocating in the hustle culture – which at the time I convinced myself, I loved much like a moth to a flame – I started to experience headaches. It was November 2019, I finally reached the limits of my physical, mental, and emotional stress levels… all at the same time.
I now refer to this time as The Perfect Storm as everything collapsed around me like a giant Jenga game.
I had finished what would be my last race in September at the 70.3 Ironman World Championships in Nice, France. (There was also the Berlin Marathon three weeks later to add to the storm!) But looking back, these were great races to go out on – I’m thankful for that. Yet, after the high of the amazing experiences, I was having the usual post-race blues; further heightened by a foot injury that kept me from being active.
Not being able to run left me without community, without stress relief, and without those amazing little endorphins. On top of it all, I felt guilty and mad at myself that I couldn’t keep going!
“I’ve run through injuries before?”
“I don’t need time off, I’m OK”
“I can still do it all?”
The results? Eventually, I could barely walk! And I put everything into my corporate marketing job that was already incredibly demanding, high-stress, and frankly, dysfunctional. I was in the DANGER ZONE and didn’t even know it!!!
Do I even need to tell y’all what happened next?
Since I thought my competitive lifestyle was slowing down, we had this genius idea to go off birth control. Because why not try to have a baby when your body is completely falling apart? #sarcasm. I immediately went back on the pill but the ‘damage’ was done with all the changes and stress on my body. I couldn’t win. (More on this later)
It was like my body was hating on me like everyone on Will Smith after the Oscars.
But did I listen and rest? Nope, I kept going – full speed, of course! Except for this time at work.
By the start of the pandemic, internal stress finally displayed itself in chronic and debilitating migraines. I’ve had migraines and migraine-like headaches my entire life so this was not unfamiliar – but the everyday pain slowly took over my life.
It got to the point where I could no longer work – or function, period. Leaving my job was a blessing in disguise – but again, at the time again I felt like a failure.
I thought work was all I had left, so to speak.
Talk about depressed.
Everyone, including myself, thought this would be the answer – taking medical leave (recommended by my doctor) and removing the work stress would give me time to heal and kick off those pesky migraines and headaches. Nope.
As a matter of fact, they got way worse before they got even a tad better. So, after the 12-week medical leave, I didn’t go back to work.
While I was still in a lot of pain, I spent this time doing some very important inner work.
I worked on myself.
I slowed the F*ck down.
I spent time alone.
I asked myself the tough questions.
I focused on self-care.
I did about a million personality tests.
I opened my Bible.
I spent a lot of time asking, “Who is Jules…really?”
There’s a quote by Brene Brown that really spoke to me during this time,
“ Crazy-busy’ is a great armor, it’s a great way for numbing. What a lot of us do is that we stay so busy, and so out in front of our life, that the truth of how we’re feeling and what we really need can’t catch up with us.”
I had been living such a busy life that I had ignored what my body and soul were really craving.
And it was time to figure out what that was – it was the only way I was going to heal, inside and out.
Quiet time with my devotional, coffee, and dogger.
IN SEARCH OF MIGRAINE RELIEF
I don’t think I could concentrate on anything else besides my migraines and daily persistent headache for months. It was the most intense pain I’ve ever experienced and it lingered for days at a time, if it improved at all. It felt like the blood vessels in my body were about to explode like a bursting water balloon hitting the pavement.
All my focus and energy over the next several months went into researching numerous neurologists to help crack this case of unwelcome severe headaches.
It was when I landed at the North Texas Institute of Neurology and Headache Clinic (NTINH) in October 2020, I finally had hope again. To date, I’ve tried almost everything in their headache toolkit including Botox/Xeomin, Ketamine infusion series, and most recently, occipital nerves freeze (cryo injected into nerves). Not to mention all the latest CGRP injections, abortives, preventative drugs, and migraine prevention diets.
It was at NTINH that I was able to see a neurologist trained to work specifically with women and hormonal migraines (One of the trickiest headache types to treat). I’m not sure how I got so lucky to have this angel walk into my life, but after a year of uncertainty, she was the first one to agree to test my hormones to see what was going on. Everyone else declined my requests, even though I had a deep feeling something was up with my hormones given that birth control caused terrible flares throughout my body.
HORMONE REPLACEMENT THERAPY (HRT)
My labs came back to the neurologist and she immediately had me go in for more tests and to see an Endocrinologist. Long story short – my body wasn’t producing any hormones.
There are a couple of reasons why this might have happened. But none of them made sense for my situation. I had been checked for tumors (brain, spinal cord, and ovaries). I wasn’t undernourished, and I wasn’t doing any opioids. Promise! So this still remains a huge mystery!? My docs & specialists have never seen this before so they attributed it to stress, of course! (See a pattern yet?)
I agreed to do hormone replacement therapy to attempt to get my levels up and stabilized again. I declined high doses (that were recommended) and started slow. Research suggested by normalizing my hormones I would see better migraine control…. Or, so they told me.
I proceeded with the treatment of bio-identical estrogen and testosterone pellets and oral compounded progesterone. The other hormones we didn’t worry about, besides cortisol…
MY ADRENAL INSUFFICIENCY
Adrenal insufficiency disease happens when your adrenals are no longer able to make enough cortisol for the body. A lot of folks often confuse or compare this with Adrenal Fatigue, which is not medically recognized but very real in the functional medicine space. It is the idea that our adrenal glands get overworked by stress and stop producing the hormones we need, including cortisol.
While cortisol gets a bad rap, it’s super important for regulating blood pressure, metabolism, and the body’s anti-inflammatory responses. To be honest, I had no idea my cortisol tanked – or any of my hormones, really.
I had been so preoccupied with head pain and trying to prevent myself from ramming my forehead into the coffee table that I hadn’t noticed.
So, with my hormones taking a hiatus, I was urgently treated with the dreadful Prednisone to kickstart my cortisol production and prevent disease.
I wasn’t happy. I was getting fat. And I was starting to feel miserable.
Of course, I wanted to stop, but apparently, it’s a dangerous hormone to live without. Without it I could have gone into Addisonian Crisis (shock, seizures, coma) at any time.
I was stuck. And starting to feel lost, sad, alone, and even more depressed.
Why me? And why can’t they figure anything out?
MY FIRST NUTRITIONIST
Since I was gaining weight at record speed and my digestive issues continued to get worse, I met with my first medical nutritionist. She ran a slew of tests – urine, poop, blood, food sensitivity, and…. DNA!
I was on overload soaking in all this new information! I absolutely LOVED learning about this and for the first time I felt like I could start taking control of my own healing by using food as medicine.
I have sooooooo many food sensitivities it’s a joke. Apparently, the more food sensitivities you have, the more impaired your gut bacteria is, and once it’s healed many of the sensitivities will fall away.
At first, I had to glance at my phone to google ingredients before eating anything! At a high level, my body rejected most grains, dairy, nuts, and some meats. But even chicken and quinoa were on the no list with my increased sensitivity (for now).
My tests showed I had protein in my urine and my kidneys and liver were working hard – ‘congested’ – is the word that was used. My pH level was actually on the alkaline side (a good thing, for which docs were confused) and my DNA tests revealed I likely had some nutrient insufficiencies such as Folate and B Vitamins. So, I have to take specific forms of these.
I needed to limit high protein and focus on nourishing soft, easy-to-digest foods – while eliminating the off-limit food sensitivities for bit.
I followed a fairly strict plant-based diet for months and saw some digestive improvements. But my head was getting worse. Or so it felt…
And do you know how hard it is to eat plants when you’re nauseous with migraine?
HAIL MARY – MAYO CLINIC
We continued to seek out the best treatments in DFW and circle around varying specialists. It felt like we were hitting dead ends everywhere and my pain was only increasing despite my best efforts. It was incredibly disappointing.
In February 2022 we went to Mayo Clinic desperate for answers and help. It ended up being a big dead end.
You can read all about my Mayo experience here on my blog, here.
But needless to say, they put me on a pain management protocol with high dosages – not what I wanted at all. And you know what? It didn’t even work! But I digress.
Coming home, I told Paul, “I so badly wished there was a special surgery to fix me all up”
FINE, I’LL FIX MYSELF
When we got back from Mayo and the pain management program didn’t work, I decided I’m the only one who is going to take my case seriously. So that’s exactly what I did.
I stopped waiting for doctors to message me back or wait for another three to six months to get into another specialist.
I took the initiative and made appointments with several functional medicine doctors, dietitians, chiropractors, and therapists. And despite my ‘physician fatigue’, I did get second opinions from doctors slightly outside of the scope of my care – a gastroenterologist doc and allergy specialist.
I’ve also researched several alternative therapies and met with other struggling chronic illness warriors, to swap info and tips. There’s comfort in knowing you’re not alone in this.
While it has been exhausting and my brain muddied by the treatment, I’ve certainly felt more in control of my care and received more ‘nuggets’ and answers than I have in a long time.
Spending time at home with Otis recovering
GI DOC & DIETITIAN
When I got back we met with a GI doc that recognized all the autoimmune issues I was having (without running any labs) and mentioned my gut issues were likely connected. He referred us to other specialists and ran more labs.
Admittedly, I was sick of being tossed around but reluctantly agreed. But it was going to take three to four months to get in.
In tandem, I met with another Dietitian specializing in autoimmune disorders and the microbiome. She’s probably one of the brightest individuals on my journey so far and ended up being a big help in breaking through to diagnosis.
Long story short, I still have a number of gut issues ranging from more serious to quick fixes. It will take over a year to turn around my gut microbiome and heal my body – but a little bit each day will go a long way.
Once again, I worked through various healing supplements, diets, and combinations of them including – Autoimmune Protocol (AIP), Heal Your Headache (HYH), and Whole Foods Plant Based (WFPB). (And I’m currently implementing Stanton Migraine Protocol!)
We stayed away from Keto due to my hormone imbalance, but some research shows it can decrease headache frequency and improve migraine. And is one of the most used migraine prevention diet programs, so it’s not off the table. While many doctors don’t know why ketones are helpful for migraine, it’s said to help with brain inflammation, improve mitochondria function, and balance neurotransmitter function.
Today, I’m still being treated for SIBO (Small Intestine Bacterial Overgrowth) and adjusting my diet.
A DIAGNOSIS OF LUPUS
It took about six weeks, but I eventually saw the doc I was referred to in June 2022 – she is a super smart triple board-certified Rheumatologist, Immunologist, and Allergist. I went through the motions, not expecting much. But did ALL the testing, follow-ups, and screenings. I was honestly shocked when she called me back in with an actual diagnosis….
I have Lupus.
What the heck is that? My Google trigger fingers went into research mode instantly.
It’s a chronic autoimmune disease that can attack almost every organ/system in the body. That’s why it’s incredibly hard to diagnose — Lupus can demonstrate a wide range of symptoms at different times. And there’s not necessarily one single blood test to check for it, there are many tests & boxes to check for a definite diagnosis. Many doctors miss the signs and several patients go years and years without an answer, diagnosis, or treatment.
I had been tested before but now it’s showing up to be an official diagnosis, ‘active Lupus’. Unfortunately, I just had to get sicker for answers as my immune system further declined.
Systemic Lupus Erythematosus
Systemic Lupus Erythematosus (SLE) is a persistent multi-system immunodeficiency that primarily affects the central nervous system (brain and spinal cord). This is why I might see improvement in migraines after starting Lupus drugs… but it’s still hard to say.
Several studies have focused on the link between SLE disease activity and headache. Although several studies have reported increased headache incidence among SLE patients, there are other studies that say it doesn’t. So, the jury’s still out!
People with Lupus have a wide range of symptoms with varying levels of inflammation which is why I think there’s so much bio-individuality among symptoms and treatment.
How Lupus affects your nervous system?
It is difficult to know what causes Lupus symptoms in our body. For example, when my headache frequency increases I wonder, ‘Is this my Lupus headache or something else causing a flare?’
We know that Lupus affects the entire human body and the nervous system in particular. And Medical News Today shares that according to the Lupus Research Alliance about 1 in 5 people experience headaches, memory loss, mood swings, and stroke from Lupus attacking the nervous system.
Lupus is caused by the creation of antibodies that are inflammatory in brain tissues nerves, etc which cause direct pain.
Did I mention that almost 90% Lupus patients are women!?
Down for the count here! Giving Paul the thumbs up that I’m OK.
WILL THIS CURE MY MIGRAINES?
As I mentioned, we don’t know if this will significantly help my migraines or not. Nervous system problems will always be there to flare up lupus headaches and my hormonal migraines will likely still be a part of my life for the duration. However, my hope is that I can remove the daily migraine/headache with medication, treatment, and diet to live a more pain-free life.
Only time will tell me if we’re on the right path.
This Lupus diagnosis explains a lot now that I have a clear diagnosis. It’s only when we look back that things make sense with my other symptoms. While I’ve started Plaquenil (Lupus-specific medication), it’s going to take 3-4 months to build up in my system and start to see and feel the benefits. (So far, not much improvement yet….)
But for now, I’m being kind to myself. Focusing on the positives of having a diagnosis. Not beating myself up for not making it to events or dinners, etc… because I have some healing to do…