Posted in Beating Hemiplegic Migraine, Hemiplegic Migraine, Just Keep Keepin On, Uncategorized

Frequent Flyer Miles

One of the hardest and most nerve racking decisions¬†with HM is deciding when an ER trip is necessary. The emergency department is filled with trigger after trigger. Whether it be the fluorescent¬†lighting, loud beeping nosies or odd smells(I have the nose of a blood hound when I’m bad off), it’s probably one of my least favorite places to be during a nasty attack. Or ever. However, when I look like I’m having a stroke and I go days without being able to hold down a single medication or ounce of fluid, it is sometimes necessary. Before we got the diagnosis of Hemiplegic Migraine, we visited the ER more often for my stoke like symptoms than we do now. Thank goodness. That being said, HM comes with some scary symptoms that are sometimes too much for us to handle at home.

When my jaw locks open we always go straight to my rescue meds, IM muscle relaxer shot and Ativan pill. If I’m able to get these both taken quickly enough, they sometimes knock my jaw back into place. Unfortunately, the two times this has worked for me, it has only lasted two hours max before my jaw becomes locked again. It is always such a hard choice when debating whether I should load myself full of rescues at home, and then probably still end up in the ER only to be loaded with more medications, or if we don’t wait long enough for my jaw to get worse and go quickly to the ER. We’ve taken both routes and honestly, it’s still a debate every time this symptom occurs. At this point, we have never been able to break one of these attacks on our own, but multiple rounds of IV medications get it under control.

A couple of weeks ago my face swelled so much that my blood was coagulating, making it look like someone beat the pulp out of me. I woke up that Friday morning with the right side of my face throbbing, but I couldn’t come up with a good explanation as to why. We chalked it up to an allergic reaction, to who knows what, and tried my 100mg Benadryl shot right away. When this didn’t affect the swelling at all, we iced and watched my face closely. I tried a second Benadryl shot and my prescription Benadryl pills. Nothing. By the next morning my right eye was swollen shut, leaving me with complete blindness in my right eye. ¬†By that afternoon my left side of my face had started to swell and my left eye was in the beginning stages of swelling closed as well. The lady checking me out at the grocery store that day looked and me and said “Car accident?” I paused…but how the heck am I going to explain my crazy situation to her when I don’t even know what happened? Instead, I just said “Yeahhh, could’ve been worse.” She empathically told me she was glad I was okay. I walked away as fast as I could because we¬†were about to lose it laughing. Sorry lady!¬†I was finally convinced into an ER trip at 7 that night, even though the hospital can be a crazy place on Saturday nights. I got probably the best doctor I’ve ever had in the ER. Dr. Roberts actually read my whole chart, asked fantastic questions and ran several tests. We didn’t leave with many answers, but he offered admitting me and was willing and wanting to keep searching. After a long 9 hours I at least felt a little better. Ashley, Vanessa and I dragged ourselves out of of of the hospital¬†at 3:30 in the morning. Yikes

1st picture- right when I woke up. (mom took the picture)
1st picture- right when I woke up. (mom took the picture)
2nd picture- a few hours later (still the right side, selfie angle)
2nd picture- a few hours later (still the right side, selfie angle)
3rd picture- about five days after first appearing.
3rd picture- about five days after first appearing.

There have been so many times that I wasn’t taken seriously in the ER. I’m labeled a “frequent flyer” thanks to the ridiculous amount of trips. I don’t think they understand I hate being there more than they hate seeing me there again. Usually, I’m either thought to be a drug seeker or they just want to fill me full of narcos and send me home. Neither is the right answer. I was once refused the meds I requested (Benadryl and Valium), given Fentanyl I had specifically¬†asked not to get, written a script for a serious narcotic in which I refused, and instructions to “go home and sleep it off using the prescription”… all in the same trip.

Since I have begun presenting with more visible symptoms lately, and not coming there when the “Invisible illness” has taken me over, the staff seems to take me a bit more seriously. They can’t deny that something is wrong when my face is swelled up so much I can’t see my chest, or my jaw is stuck so badly I can’t speak. I guess that’s fine, as long as they help me when I really need it. It’s funny to watch the nurses faces change when they start to prep for an IV and I show them my portacath instead. You can literally see them start to take me more seriously, because I wouldn’t have a port if something wasn’t wrong, I guess.

hospital-slang-005

Probably the most annoying thing about ER trips is the ridiculous amount of judging that comes along with it. My parents hate going almost as much as I do. But, for the most part, they understand when I say it’s time to go. For example, this Friday was a really really bad day. An hour long seizure and my right arm getting numb and paralyzed was just the beginning. My jaw quickly became locked, which earned me nothing to eat, drink, or medications to take along with an agonizingly painful night in which I scored zero sleep. Before office hours were over Friday, my mom and I called my local doctor seeking help, knowing how bad this was going to end up. All we got from that attempt was a nasty remark from his nurse who then hung up on my mom. So, Saturday we made the choice it was time to go to the ER, as I couldn’t spend another day like that. With my blood pressure climbing the triage nurse said 167/102 earned me an immediate pass back to a room. I’ve been trying to tell this people it’s like a stroke!!! Luckily, my doctor and nurse were both understanding and fantastic. But ER trips involve so much down waiting time. We rushed the last round of meds, my dad and I worried we were going to miss something we just couldn’t miss. We pulled out of that parking lot at 1:50, made it home to change into dress clothes and pulled into the location smoothly at 2:41. Score one for the home team.

Shaky and exhausted I’ve never been so glad to be rushed, or even more glad to make it to a destination in time. It was such a battle trying to decide if we were going to the ER this weekend but it paid off more than ever. A full day to say the least Saturday, including a long night. I loved feeling well enough to end the night snuggled up with Courtney. I don’t get enough nights of girl talk with her. ¬†I participated, with much energy, in family pictures and my Grandpa’s birthday lunch. I even drove to pick Kelsey up! Thank goodness for the good meds and steroids. It is times like this trip that make all the judging, waiting, debating, and hard decisions worth the trip.

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~Had

Posted in Beating Hemiplegic Migraine, Hemiplegic Migraine, Just Keep Keepin On

Just Keep Keepin On

I find myself stuck wide awake at 2am, again. I’ve gone through all the tricks you’re “supposed to do” to cure insomnia. I go down the list most nights, guess what? None of them really work. Hopefully my mom and Paula got more out of our two hour sleep class at Mayo than I did.

I sleep best with a TV on, even though that’s a big NO. I need the sound and general distraction to keep my mind from wondering a thousand miles a minute. If I make it through the nightly Friend’s marathon on Nick at Night I usually turn the TV off and try just music. Rarely does that work. Then starts the list of ridiculous things you can find me doing in the early AM hours; yoga, breathing exercises, stretching, mindfulness, oxygen treatments, ice, moving to the couch, moving downstairs, peppermint headbands. All of this on top of sheets freshly washed in Lavender and a handful of night time medications that would knock out a giant. Yet, here I am. Wide awake. Luckily, my favorite time to write is after midnight! Lol.

Tonight, however, is an extra rough night. The HM monster is in full swing. After a painful seizure this evening and shocks sending a jolt from the base of my neck through my fingers and toes, my right arm and leg are completely numb and paralyzed. All the while I swear I have ice picks sticking out of my face and in my eye. Having to skip my Tuesday infusion is going to be extra rough this week.

This is a completely accurate depiction of how the inside of my head feels. Thanks Snapchat. Might be a tad too graphic for this. Oh Well.

I wish I could explain just how odd it is to have zero sensation on half of your body. I tried running my hand under hot water tonight, just to see if I could bring some feeling back to it. Nada. If I wouldn’t have been watching my hand under the running water, I wouldn’t have been able to tell you that was happening. Being numb is such an uncomfortable feeling that is impossible to get used to. And then you think, “how is it uncomfortable if you can’t feel?” I guess it’s more mentally uncomfortable. It’s been quite a long time since my arm and leg have been paralyzed. I went several months where they would just get extra tingly, my leg would drag occasionally, but even that wasn’t a constant when my attacks were hitting.

Unfortunately, in the last few weeks the numbness, weakness and paralysis that screams stroke to so many, have been frequent and worrisome. Usually starting in my finger tips, the pins and needles feeling all HMers know too well has started to quickly spread all the way past my shoulder. Last week, we began noticing that as that feeling was becoming more frequent, soon after my right arm starting spasming and jerking out of my control. I tried my muscle relaxants, those had no effect. Eventually, the spams chilled out by themselves, which we noted as a good sign. That was, until my arm ended up paralyzed for the rest of the night. Luckily, when I woke up the next morning it was back to full mobility and almost complete feeling had returned! That didn’t last long. Boo.

Then, we have my leg. My leg has always shown more signs of HM than my arm. Last year it was fully numb and paralyzed for three months. Yep, awful. During bad attacks it was still dragging, and that was one sign that the Hemiplegic days to follow would be in full force. But in the last week or two, we’ve seen more signs of weakness. Several times, out of nowhere, my leg has completely given out and caused me some ugly falls. Not that I need extra of those. Two nights ago, I was walking through the kitchen when it totally randomly landed me in a heap on the floor. From the tips of my toes to my hip I had no feeling, but I was still able to move it normally, so I just ignored it best I could. Again, the next morning it was back to normal.

I hope I’m proved wrong, but sadly I’d be willing to bet I don’t wake up good as new tomorrow. Seizures have been rough all night and I’m still dragging my leg when I try to walk a little bit, or having to use my left hand to pull my right arm into a comfortable position. Trying to type this one-handed is actually slightly comical. Well, and slightly frustrating. I keep telling my right hand to reach for the letters and nothing happens. Ugh. It’s actually extra weird to have my leg numb because I damaged a nerve in my left leg with a shot a few months ago and have lost complete feeling in half of my left thigh.

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So, this is actually the part of my left leg that is constantly numb. Weird how you can see the parts that get goosebumps and the parts that don’t, huh?

I’m a mess. A painful, numb, exhausted, stuck, mess. And for tonight, complaining about all of that is okay. But not tomorrow! Tomorrow I have to get up, know it is a new day, and try all the secret tricks of making it through another attack.

keepon