Life with a Chronic Illness: My Experience with Hemiplegic Migraines

July 5th changed my life.

It started out normal enough. My three girls woke up before me and came into my room to lay with me for a while. We played and giggled for about a half-hour. Then I tried to get out of bed and my whole world changed.

I couldn’t walk correctly and I was incredibly dizzy. I fell back into bed and felt the room spin. After a couple of minutes I started feeling better and tried to get up again, but to no avail. This happened a couple more times before I called my husband and had him help me to the bathroom.

We immediately took our kids to my parents, planning on heading to urgent care. On the way there things continued to go downhill. I continued to get weaker and became very fatigued. It felt like I had a heavy weight on top of me, weighing me down. We decided to go to the ER.

Once we got there, the medical team realized that it was really the right side of my body that was heavy.

I couldn’t lift my right leg or arm, which made things even more alarming. There was also something on my CT scan that made them believe I had a stroke, although the MRI didn’t confirm this. The MRI showed a possible glioma (cancer) on the thalamus in my brain. Fortunately, I later had a follow-up MRI and the spot found on the MRI was unchanged.

After being treated for a possible stroke, I was discharged from the hospital on July 6th after my symptoms had mostly subsided.  I was taken back in the morning of July 7th when I woke up with similar symptoms.

This began my journey into learning about my new diagnosis: hemiplegic migraines.

Life with a Chronic Illness: My Experience with Hemiplegic Migraines

I’ve dealt with migraines my whole life, which by themselves are a chronic illness I wouldn’t wish on anyone. Hemiplegic migraines are a rare type of migraine with aura where the aura imitates a stroke and then is usually followed up by a headache. I have been having anywhere from two to six hemiplegic migraines per week since my first ones in July.

My life has become what feels like a series of doctor appointments; I visit my PCP, neurologist, the Mayo Clinic, a rheumatologist, and the list goes on. There are a lot of unknowns about hemiplegic migraines and I continue to have new symptoms that don’t quite fit what the doctors expect.

I’m in constant pain, but all my tests come back normal.

On top of the doctor’s appointments, my energy level is so low that I can typically work at home for only 5-10 minutes before needing to rest my muscles. Any time I have a migraine I sleep most of the day away simply because I cannot keep my eyes open. My mind doesn’t work the same way it did and I usually feel like a completely different person than I used to be. The anxiety I already had has become an anxiety/depression combo.

I had to make the heartbreaking decision to switch from homeschooling my kids to sending them to school. I just can’t keep up with them. My life is now full of telling them, “I’m sorry I can’t do that right now. I don’t feel well today.”

Because the doctors are still trying to figure me out, most of what they can do is try to treat my symptoms. I’m 34 years old and I currently down five pills every morning and ten every night, as well as my Botox injection and extra medicine for when I get a migraine.

On top of that, my illness is hard to see and people sometimes think that it’s made up or exaggerated.

Even those who believe what I’m saying have a hard time understanding what I’m going through, probably because it’s very hard for me to put into words. But I don’t want you to feel sorry for me.

I want you to know that if you experience chronic illness, I see you.

I feel for you and I feel with you. Whether your illness is “mild” or “severe,” I know that you’re going through a lot. Many days just getting through the day is all you can do.

If you don’t suffer from chronic illness, please just believe us. Believe that what we feel is real. Make us feel heard and understood. Help in tangible ways if you can, but if you can’t, just be a listening ear. We’re hurting, most of the time and we may be lonely or depressed.

And lastly, I say it a lot, but I’ll say it again: Be kind. You never know what someone’s going through that’s unseen. Always be kind.

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