Migraine Mystery Turns Out to be Autoimmune Disease

I had occasional – maybe once / month – migraines when I was young. I’m not really sure when they started, but I do remember at 8 yrs old just lying in bed crying because I hurt so much. But I had 2 evil stepmothers that never took me to the doctor about it, and I believe my dad was in on it because they both told me that I just read too much and called me an ‘intellectual snob’.

As I grew older, the headaches (migraines) became more frequent, and I had other symptoms too. My lower back hurt all of the time, other joints hurt but they took turns thankfully. I was a little sluggish but not so you’d really notice. I just attributed all of this to exhaustion as I was going to school, working 2 jobs, and going out with friends. I also developed insomnia, which is really bad when you have a migraine and are in pain and just want to sleep.

Even older, I just ‘dealt with it’. I developed stomach problems in addition to everything else, and was always deficient in magnesium, potassium, etc. The migraines were steadily coming more often, and I was really at the ‘miserable’ stage. I had no idea what was coming! I’d be happy to be there now!

I had countless tests – antibodies were always low in addition to the magnesium, potassium, etc. I had colonoscopies, endoscopies, other invasive tests. They could find nothing!

Then I moved, and had to go to several doctors – it is amazing the number of doctors that don’t believe a patient! I finally found a doctor that was willing to help – he tried several treatments, some of which offered a little relief.

By this time I was in my 30’s and had migraines every day. The pain was a lot worse, and my lower back and neck were most affected. Also, I noticed my hands and feet would go numb or they were slow to respond. I found out later that this is called neuralgia, and if it is on both sides it is peripheral neuralgia, like mine. Most migraine meds helped, at least for a little while. I managed to help build a fabrication company and became VP. Was doing pretty well. I could even shut my office door, turn off the light, and lie down if I felt bad!

I actually wrecked a car I’d had less than a week because of a migraine! I was going home early, and very nauseous because of the migraine. I didn’t want to vomit in my car, so I pulled over when I thought I was clear (Obviously I wasn’t). I vomited all over the parking lot and not in my new car though!

Shortly after, as I was leaving the office, I had a seizure. Luckily my boss was there, and I was hospitalized. They could find no cause for it but did recommend a neurologist. Turns out I’d been having seizures and not realizing it, because they can cause short-term amnesia.

I ended up being hospitalized approximately 12 times, and they could never figure out the cause. When I got sick, like with the flu, I got REALLY sick. Twice because of the flu and dehydration etc. I had kidney failure.

Finally, a doctor walked in, took one look at me, and said ‘You obviously have limited neck movement. What other problems do you have?’ He is a rheumatologist, and after 20 years, he was able to diagnose me. I have Systemic Lupus.

Lupus, an autoimmune disease, happens when the immune system attacks its tissues, causing inflammation, swelling, pain, and damage.

There is also a Cutaneous Lupus, which causes the familiar butterfly-shaped rash on the face.

Systemic Lupus can attack any of your systems, including neurological, which is why I have the migraines and the neuralgia, digestive, and of course endocrine (my body no longer produces steroids – I have to take steroids every day, circulatory system (I have to take blood pressure meds twice / day) and the renal system. I have to be very careful and pay close attention to my kidney function. The joints are affected, and the pain is pretty bad.

I was on narcotics for over a year, but elected to quit taking them. The doctor had told me I’d be on pain meds the rest of my life, and I am not looking forward to that. I decided I would stay off painkillers until I just couldn’t stand it anymore. Some days I really regret that decision…

I was asked to share my story in the event that it may help someone, and I hope it does. I didn’t want to scare anyone but if I do help anyone it is definitely worth it!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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