As everyone has gotten back into the swing of schedules and school life, I’ve picked up quality time with my sweet pup and online classes. All of my friends are officially moved away from htown and into their new “homes”. I’ve scrolled through everyone’s dorm pictures, good bye and thank you posts, and college life snap stories glad to see my friends each loving the path they chose. I’ll admit, it’s been a bit harder for me than I thought it would be. Watching all of them thrive having the time of their life makes me happy for them. But, that’s the problem, I’m just watching.
Though I’ve never been at peace with the necessary decision to stick back at home and take online classes, I’d finally convinced myself it would be okay and I could attend Mizzou or Columbia College my sophomore year. Now, that seems more out of reach than ever. How am I supposed to obtain such a high energy, hands-on job like I would like in the medical field if I can’t even make it through the most low maintenance weeks at home?
This summer has been the hardest yet, which weighs heavy on me after the incredible Spring I had. I guess in some ways the day by day struggles I’ve fought with all summer are proving to all those people who sympathetically tell me they’re bummed I still had a bad summer that no, this wasn’t all going to go away after I graduated from the stress of high school. I wish the stress of high school was my only issue. I think it’s also been extra disappointing lately because, for the longest time, the doctors were all positive I was going to have grown out of this by now. Instead, I’m getting worse. The scary truth that HM is a progressive disease to be dealt with for the rest of my life has been proven these past few months. I feel like every morning I’m waking up with a new symptom.
It’s gotten to the point that I often have to plan my week around the days I’ll be best thanks to my infusions. Some of the scary symptoms I’ve seen discussed in my support group that I thanked God I didn’t have, have hit me like a pile of rocks since June. And I spent 14 days in the hospital in June, soo that’s saying something.
I had gotten used to seizing throughout the day and not feeling well. I knew there would be days a bad attack would hit and my body would drag. When my right eye began to droop it was a visual reminder and warning to get ready for the rough few days to follow. But as I was adjusting and still making it along, I was reading scary stories and recollections from others on the HM Support Group I am so active in. I sometimes physically wince when I read the description of paralysis and complete loss of speech. Unfortunately, some of the things I once gawked at, thinking there was no way I could possibly get that bad…it’s that bad.
About once a week has been the average timing of the wonderful new symptom lockjaw. Talk about painful. I guess mine is technically reverse-like lockjaw because my mouth gets stuck open. That means no drinking, no eating, no oral meds until I can get it to shut. And that requires IV meds in the hospital…shocker. All of a sudden my face has decided to start swelling up during attacks, yet again a new symptom. When a new symptom comes along I always ask the Hemiplegic community, and every time they back me up. 11 people replied to my post about facial swelling, saying the same happens to them during attacks. Wonderful. From about 6-12 hours before symptoms become recognizable, I now cannot use the restroom. TMI, I know. They say my bladder and\or right kidney are probably getting paralyzed along with the rest of my right side. Sounds logical to me. We’ve all gotten a little discouraged the past month or two, but when my mom and I went back to read through some of our original HM research findings it was just another definite confirmation that somehow Hemiplegic Migraines are the root of all of this. How? How is all of this even possible?
A few nights ago I found myself tearing up and getting that uncomfortable feeling in my stomach as two new member of our Hemiplegic support group described their attacks. It always makes me nervous for a newly diagnosed HMer, but sadly it makes me feel a tad better for the ones that have been dealing with it for so long that they have some idea how to handle it, the definite diagnosis is just what they were needing. The two stories I read Wednesday night just made me feel even more bummed out, like when is this disease going to get figured out? I’m not sure lucky is the correct word, but the two gals had been through only one episode each. Their experiences were similar, as they usually are to how we all started, each was rushed to the hospital and treated for stroke. Then the doctors shockingly ruled out stroke. That was their biggest shock, I think some of us reading and commenting were even more shocked that an ER DOCTOR realized, recognized, and diagnosed these ladies. I could hear the pain, confusion, helplessness and shock through their words. I wished I could just take on more of the disease instead of having to watch another person battle this. The most we can offer them is knowledge and virtual shoulders to cry on. Ugh. Ugh. Ugh.
I hurt. Bad. Majority of the time, again. My body physically does not have the time to bounce back before the next attack comes on with the vengeance. It’s gotten so hard trying to determine how much medicine being pumped into me is too much, and how much is just what I need to make it. September 8th cannot get here fast enough. I see doctor Diamond, at the Diamond Headache Clinic, that day and get my third round of Botox. The third consecutive Botox treatment is when you’re supposed to start seeing results, so keep your fingers crossed people!!! I’m fully prepared for a hospital stay and kind of hoping I am there for a few days, in hopes that the Diamond crew can witness another HM attack. My attacks have progressed so much even since I was there in June. They’re more severe, more frequent, and lasting longer these days. My energy is back to being completely non-exsistent. I really just do not feel good most days.
All of that being said we have made some good strides recently! My home neurologist has finally come around to helping and wanting to be hands on. He’s already started to help taper me off of some of my current medications so that the transition won’t be so rough on me when I get to Chicago. I’m sure that hasn’t helped me feeling lousy. He actually came and saw me during an infusion last week. WOW! He scheduled some tests for the very next day, just to be sure there wasn’t something new going on that is making all of this worse. Following up on those, this week he added a CT scan. The nurse who helped put my port in came to access it and see how it was looking, she’s a pretty sweet older lady. 🙂 When they inject the CT contrast dye into your line they always warn you that it’s going to feel like you peed your pants, wellll that never fails! It’s so weird that even though you know it’s the dye, it feels SOO much like you wet your pants, you still feel like you need to check and make sure. …at least I hope I’m not the only one that happens to! The contrast dye always makes me really sick though. Immediately an even more powerful headache hit me, which was a bummer since my infusion the previous day had me feeling good. The rest of the day I could hardly stay awake. When I did wake up it was because that darn dye was making me sick. Blah. Thankfully, results only showed cysts.
I’ve also been doing some serious research on treatment ideas to present to both neurologist teams. Nerve blocks help several kinds of migraine, after asking around the HM community it seems about 50/50 on the success rate for Hemiplegic Migraines. But hey, if there is any chance I’m willing. I’ve done the most research towards the idea of Lidocaine Infusions. It’s a treatment kind of new to the migraine world, but the first site I read mentioned it helping HM specifically. There’s some potential side effects, but that comes with any treatment I’m going to try. At least it isn’t an opioid! I have a few other things on my list to throw at Dr. Diamond and Dr. K(my home neuro), one of them has to be worth a try! I’m just hoping Dr. Diamond has an open mind, at least to a conversation about my ideas, because she typically runs quite old school. Especially in her medication plans. I’ve been wishing we lived in the UK lately because they have started a experimental few trials and different, new, ways of treatment. People seem to be having some success with them because several articles have been posted about them lately.
I’ve been working more with my Chiropractor because she does help my jaw feel better. Last week, my jaw was spasming and beginning to lock when I saw her. She popped and moved everything. My favorite thing in the world is when she puts pressure around my head and neck, she always hits the EXACT spot. Best. Feeling. Ever. I have loved Dr.C since the very first day she started working with me. She just cares so much. Dr. C is also the founder of the local charity foundation, Pascales Pals. She has presented me with the opportunity to ask for something that I need or want. “Something that makes you happy,” she told me with a hug. After much research, I have decided to start the process of getting a Migraine Medical Alert Dog, with their help. I have found the company I would like to work with, and decided to send in an application to see if they would even qualify me for a dog. They got back to me in less than a week, and have given me the next application of the process… with that they can start looking for the perfect dog for me! Just a brief description of some of the things they can do include; retrieving and open medicine bottles for you, bracing you when you have a seizure or become paralyzed, and most importantly, can sense an attack 5-60 minuted before one begins. Yes, that’s a huge time window, but if I can take medications when an attack is brewing instead of waiting for when the symptoms begin, I could potentially abort several attacks. An alert dog could really give me that independence I’m craving. We’ll see!
Even though it has been a really rough summer, I still sometimes feel better between attacks than I used to. Getting infusions weekly help me, even if that means more medications in my body. Sometimes that is just necessary. Infusions have been running quite smoothly lately which just takes my stress level down. I better not have just jinxed myself… I just have to make it through the week and then I’ll be back in Chi Town. My dad is coming with this time! Praying for a smooth, uneventful, productive trip. Also begging for no more progression for awhile and some serious relief!