“HM is plain evil”- the exact thing I said to my mom, the first time I was able to talk, in over 24 hours, tonight. It’s been a rough month for me, both mentally and physically. My Chicago trip went unexpectedly and after two weeks in the hospital I found myself in the ER again, tonight. I guess not every day, or week, or month can be a good one, right?
Spencer, my grandma and I road tripped to Chicago the first week of June. As my friends attended SLU 101 or Mizzou Summer Welcome the past two weeks, I got reunited with hospital life. I was a little bummed at first, since I had been boasting that this would be a Botox only trip, no need to be hospitalized. I braved Botox on my own, not a hard task since the doctor is so easy on the eyes! The PA walked in the room more concerned about my vitals than with my check list of questions. Lana called my doctor in, who greeted me with “Hey Hadley. I’m admitting you.” Boo.
Unfortunately, my second day there I had a bad attack. A negative that I am now actually very thankful they saw. As I was in my hospital bed writhing in unbearable pain, physically unable to close my mouth, throat spasming and not allowing me to swallow, entire right side numb and drooping my nurses, the charge nurses, and rapid response team were gawking at my vitals. Dr. Diamond was called, on her off day. She immediately became incredibly worried. I was soon aware that I was hypertensive. My heart rate was raging at 199. You see, the big risk with HM is stroke. In fact, many people are first incorrectly diagnosed and treated for stroke before correctly being diagnosed with Hemiplegic Migraine.
When my blood pressure and heart rate were looking better I went for a MRA. I had a MRA in October when being diagnosed with HM, it’s basically a scan of my blood vessels and such in my head. The results of my MRA last week were the same as someone who has suffered a TIA or stroke. Quite scary that my hospital at home just turned off the alarm sounding for my blood pressure and heart rate, and passed it off as being a result of the pain. Turns out, the attacks were a result of me being hypertensive. That was a scary reality for me to swallow.
Dr. Diamond took extra precautions for the next 12 days. I stayed attached to a 48hr EKG, received continuous fluids until my blood pressure was steady, immediately started the necessary medications and continued with PT and BioFeedBack. I had three more attacks following the first which gave us a chance to actually test different mixes of medication. We definitely learned more specifics about HM this trip, like my body’s lack of ability to metabolize medications correctly. Diamond is always a learning experience.
I had to detox off of the medications I had been on since March. The medications that have been making me feel better than I have in years, were actually hurting me more than I knew. Even when I came home after a 14 day hospital stint, I didn’t ever catch back up to the pace I’ve gotten used to the last couple of months. My droopy face never completely left, and my headache has been taking over more and more. It’s been a frustrating step back after seeing so much progress this Spring.
Saturday, we spent the day watching basketball at the lake. No matter the consequence, watching my dad coach will always be one of my favorite things. I gave my parents a heads up that I could feel my right side beginning to drag. I took a shot and all of my meds that night and the next morning. I still ended up starting the day with a crazy bad migraine and little sight out of my right eye. Sunday afternoon I took a second shot. An hour later my jaw locked and a full blown attack began. A third shot, this one Norflex, and a choked down muscle relaxer helped me to kick the reverse lock jaw pretty quickly. Unfortunately, two hours later my jaw became locked again and my attack was continuing to get worse.
I was determined not to be back in a hospital today, after only being out of one for five days. I waited 30 long, excruciatingly painful, miserable hours before giving in to the suggestions of an ER trip. It took an hour and twenty minutes to even see a nurse…talk about FRUSTRATING. I ended up with a fairly good doctor, but the nurse messed up my medications a tad. I was able to leave with my jaw under control and a slightly better headache. Although my attack is still fighting me, I just couldn’t be more thankful to shut my mouth!!!😉
I’m so thankful for my sweet momma. She took time away from Summer School to come to Chicago for the last of my trip. She knows I’m much more comfortable with her there, and even though I can self advocate, I love when she is my sidekick. Again tonight, she waited out the awful emergency room with me and not a single complaint. Even though we didn’t get home until 2am, and she has to work in the morning, she was more than happy to be there with me. Thanks for freezing to death with me for six hours. I love you, Mom!!
This brings me to a total of 18 days of June spent in a hospital, and 50 days spent inpatient in Chicago since October. Those numbers devastate me. Especially after doing so well and looking so good for the last three months. My energy is continually depleting. And though I’m not as bad as I have been in the past, I’m so worn out having these attacks so frequently. Thankfully my weekly infusions still have my daily migraine doing so much better! This has just shown us the true awful randomness of Hemiplegic attacks. They don’t care about your plans, or your exhaustion or well being. I’m so thankful to have the summer to figure this out! Praying that my new med line up starts to do its job and that I can pick up my “Old Hadley” role again!