Chronic Migraines in Children

My journey with chronic migraines began when I was fourteen. They were brutal for about three years, but around a year ago I started to get significantly less migraines. Being a child with chronic migraines was really difficult, mainly due to the ignorance of adults. Migraines are often seen as something that only affects adults, and many people do not understand the severe impact they can cause on someone’s life.

The Diamond Headache Clinic asked me to share information about childhood migraines, and I was happy to oblige since there is not nearly enough awareness about them. I highly recommend viewing their presentation, because it is full of lots of great information about chronic migraines and abdominal migraines in children!

Here are some of the statistics I found interesting:

  1. The average onset for migraines is 7 years old for boys, and 10 years old for girls
  2. After the age of twelve, around 80% of people who suffer from migraines are women
  3. Migraines affect up to 5% of school aged children

 

Treatments for chronic migraines typically include preventative medications, triptans, and sometimes NSAIDS. In my case, these things did not work for me due to a plethora of underlying medical conditions. It’s always important to make sure you don’t have any other medical problems that could be causing the migraines.

Do you have migraines? What’s your journey for treatment been like?

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Shit My Ableist Family Members Say: Chronically Misunderstood

After spending Thanksgiving with my extended family, I realized about 95% of my conversations with them included a lot of ableism and me gritting my teeth. There’s some of things they’ve said to me recently:

  1. “I’m so glad you’re better!!!”

My Grandmother told me how happy she was that I was all better at Thanksgiving, when I literally had an endoscopy the day before. About 80% of the time I was at her house I felt like I was being stabbed in the stomach, but my face told another story. Just because I’m good at pretending to be “fine” for your sake, doesn’t mean I’m not screaming in pain.

2. “You’ve learned some great life lessons though”

Yes, I became sick as a child so I could learn a few lessons. One of them is how absolutely insensitive that comment is. Another, is how to restrain myself form decking you in the face.

3. “Do you have a real life now?” or “Are you truly living now?”

Apparently my life wasn’t worth living when I laid in bed sick for months, but dragging my aching body around to school is a meaningful and “real” life.

4. “Sometimes God just answers prayers slowly”

While I am a Christian and believe in God, the idea that one day God is going to magically cure me is ridiculous. Some problems don’t have resolutions, and that expectation leads to devastation.

5. “People who apply for disability are just lazy”

If I wasn’t a minor I definitely would have been on disability, and there’s nothing wrong with that. Also, wow just wow.

6. “I just don’t know how it’s possible that you’re STILL sick!”

Touche

…but it’s called “chronic” illness for a reason.

 

These are just a few of my favorite gems! There’s many, many more and a part two may have to happen soon.

What is the most ridiculous thing people say to you about your chronic illness(es) / disabilities? I’m sure you all have some great stories!

November Health Update

Quite a bit has changed since my last health update!

I’ve now seen my electrophysiologist two more times, even though he originally wanted to refer me on. I went on flecainide acetate for a few weeks, but it made me incredibly hypotensive and I couldn’t properly function on it, so we decided to discontinue it. I’m currently on Digoxin, and my symptoms have improved. A major part of the improvement is due to coming off the flecainide acetate, but I do think the Digoxin may be helping some. I saw him on Monday, and we are going to continue to digoxin and possibly increase it, depending on the results of my endoscopy.

At my last appointment, he brought up the possibility of having another electrophysiology study, but this time actually ablating my sinus node. I didn’t have an ablation last time, because I don’t have SVT so technically nothing is structurally wrong with my heart. The complete ablation of the sinus node for people like me who have IST, a form of dysautonomia, results in a pacemaker over 50% of the time. To me, this would be a last case resort. I’m technically on the last medication that is prescribed for IST, so if it doesn’t continue to work I’m kinda screwed. However, I’ve read all of the research papers I can get my hands on and this procedure is often contra-indicated for people with dysautonomia. As of right now I don’t really view it as an option, but if things get worse it may have to be a possibility.

On Wednesday, I had an endoscopy mainly to test for systemic mastocytosis. I had no visible abnormalities, which we expected. This was my third endoscopy, so we were basically only doing it for the biopsies, which they did a ton of. The procedure went really smoothly and quickly. I had felt absolutely terrible on Tuesday, but even with the anesthesia I felt okay Wednesday. Thursday and Friday however were a whole other story. I felt like I was being stabbed in the stomach for most of Thanksgiving, and Friday I had a migraine most of the day. I tried by best to celebrate and push through, even though I felt quite terrible.  I’m moderately nervous for the results, since having systemic mastocytosis is kind of a big deal, but on the other hand having yet another false test is going to be frustrating. You really can’t win for losing with chronic illness.

I keep having really bad days/weeks and then really good days/weeks, so it’s been hard to judge the pattern of my health. I’m incredibly grateful for the good days, especially when they’re proceeded with a terrible day. I think I’m doing a pretty good job of handling it all, but I am pushing myself pretty hard. Having a few days off of school for Thanksgiving has been nice, and before we know it, it will be Christmas break. I still feel like I’m slowly declining, but I also feel hopeful due to the new doctors I’ve added to my arsenal.

How’s your health been?

I hope you’ve all been having a good November!

 

Adapting with Chronic Illness

Sometimes friends and family members will see me and say, “wow you must be feeling better!” What they don’t realize is that some days I’m not doing any better than I was six years ago, I’ve just adapted. In the beginning it was so incredibly tough to even get out of bed. I was a child, and had never truly had to persevere before. At the time, I was trying my absolute hardest to function, but it was all new to me. Now I’ve adapted. I go to school and church with extreme pain and fatigue. I do homework as I run back and forth to the bathroom or grimace in pain. When I’m in a state that I’m able to force myself to function, I seem very “normal.”

This semester I’ve made it to class more than I ever have in the past six years. As of now, I’ve only missed four class periods total, and three of those periods were for doctor’s appointments. Part of this is because I felt decent at the beginning of the year, and so it was fairly easy to make it to class. Now I’m struggling more, but I’m still forcing myself to go to school. Just because I’m able to function, doesn’t mean it isn’t hard. Yes, some days it is easy, and I feel incredibly lucky to have easy days since so many people do not get them. I used to not get easy days, and it was so incredibly hard. However, some days I’m trying not to pass out in the middle of math class, or holding down vomit in history lecture. My body is still very broken.

I’ve also taught myself how to “pass as abled.” I can put on the makeup and clothes, do my hair, and paint a pleasant expression on my face. Most people aren’t very observant and buy it. By now I should have an Oscar for my performance! However, if you look really close you can see the exhaustion in my eyes and hear the slight pain in my voice slipping through. One thing chronic illness has taught me is to be observant. Things are often not as they seem, and if you really pay attention to people, you can pick up on so much. I’ve learned how to appear fine, but other people have not learned how to see through it.

In many ways, I’m so glad I’ve adapted! I’m able to handle everything chronic illness has thrown at me, and I have strength to continue to fight it. I’ve learned how to be more functional, and now I’m able to continue my education. Sure, I don’t do anything else but go to school, do homework, and recover from it all, but I enjoy succeeding in something. It does make me sad sometimes that this has become my normal. Pretending to be fine, when your body doesn’t work right is exhausting, and can be incredibly lonely. At times, I’ve felt angry that I even had to adapt, that I had to accept this life as “okay.” Chronic Illness is a constant cycle of grief and acceptance, and adaptation is a huge part of that.

 

Weight Fluctuations Due to Chronic Illness

I wrote a post all the way back in May about my journey with weight fluctuations due to medication. At the time I was going to the gym 5-6 days a week, and eating incredibly healthy. So, what’s happened since?

I started trying to lose the weight I gained on Gabapentin back in April, and since then I’ve lost a little over 30 pounds! Honestly I can’t believe I’ve lost that much, and I never really believed I’d be able to do it. As I mentioned in my original post, I’ve watched multiple family members struggle with their weight, which was discouraging. Now that I’ve lost the majority of the weight I gained, I feel so much more like myself. After the weight gain, my body didn’t feel right and I felt uncomfortable all of the time. I don’t think we should equate beauty or self-confidence with weight, and I recognize some of these thought aren’t exactly body-positive. However, losing the weight has lifted the uncomfortable feeling that was dragging me down.

As of right now, my health is no longer in the place that I can work out as much as I was. The combination of school and declining health, doesn’t leave much time for anything else. I’m hoping once I get my IST under control, I’ll be able to work out again. I’m still eating pretty healthy, but I’m not as crazy strict as I once was. Every one in a while you’ve gotta live a little, ya know? Plus, you can only eat so many scrambled eggs and apples before you go crazy.

It will be a year in November since I stopped drinking any carbonated beverages or caffeine. While I wasn’t losing weight at the time, I do think that decision has made the whole process easier. Plus now that I’ve been doing this for a while it’s much easier. Even though I’ve loosened the reigns some I’m still continuously losing weight, and trying to live as healthy of a lifestyle as possible. Right now my main goals are to lose around 10 more pounds, and hopefully be able to workout again soon.

Chronic illness makes weight loss/gain super difficult, but not always impossible. If you are currently trying to lose or gain weight, don’t feel discouraged! It may feel incredibly slow, but the fact that you are trying your best is all that matters. If you’ve been working hard but your health gets in the way, that’s also okay. Sometimes you’ve got to take a break, or slow down in order to take care of yourself.

Do you have any experience with weight fluctuations due to chronic illness or medication?

I hope you are all doing well!

Corlanor and Other Frustrations

Last week was the roughest week I’ve had in a while. My migraines have returned, my stomach has continued to be a hot mess, and my heart is becoming a major problem again. What a great mix!

I saw a new electrophysiologist on Friday, and he confirmed my diagnosis of Inappropriate Sinus Tachycardia. I was diagnosed with IST back in February after an electrophysiological study, but due to a terrible experience with that doctor I hadn’t done much about it since then. I’ve tried metoprolol, verapamil, and propanolol to slow my heart rate, but all of them failed to do so and caused side effects. Although I actually really liked this new electrophysiologist, he made big promises; promises he should have never made.

He started me on Corlanor, and told me verbatim this would be a miracle drug. As a skeptic with an asshole for a body I didn’t really believe him, but I was hopeful. I hadn’t done much research on IST, surprisingly since I love to research things, but now I have a million questions, most of which probably don’t have answers. Here are my questions, so if for some reason you have answers or have IST I’d love to hear them!

  1. Is IST a form of Dysautonomia?  The internet is giving me mixed signals
  2. What are other treatment options if beat-blockers, calcium blockers, and corlanor don’t work?
  3. How could this affect my laundry list of symptoms that no one seems to have an answer for?

Unfortunately my body is not liking the corlanor at all. My pulse is all over the place, sometimes “normal” around 75, and other times I’m still very much tachycardic at 120. It has also caused me to become extremely fatigued, hypotensive, and dizzy. Pretty much all day Saturday and Sunday I couldn’t do anything because I was so out of it. I started to get super disoriented (which does happen to me sometimes without medication) and couldn’t formulate sentences or comprehend anything I was trying to read. I’m on the lowest dose of this medication so I don’t think we can make this work.

I decided to stop taking it Sunday night, because I have a busy school week this week and I definitely won’t be able to go to school with all these side effects; It’s also not safe for me to drive when I’m so out of it. As far as I’m aware this is the last option I have to treat the IST, which is incredibly frustrating. I can feel my body progressively getting worse and returning to a dysfunctional state, which really scares me.

So far in the six weeks I’ve been in school I’ve only missed one class and it was for the electrophysiology appointment. I’ve been pushing myself incredibly hard and studying a ton, but if my health gets worse I’m afraid I’ll go back to missing school all the time. I just really don’t want to lose the progress I’ve made or have to leave school again. Maybe I’m thinking about this too much, but it’s really hard not to. We’re going to call the doctor today and see what he says about the side effects; I’m supposed to have a follow up on November 3rd, but it looks like I may need to see him sooner. I also have a gastroenterology appointment on October 18th with a new doctor, so hopefully that will bring some answers for my GI problems.

As for the migraines and daily headaches, I’m not sure I’m ready to go back down that road again. I’m feeling really emotional right now and the lack of control I feel over the situation is getting to me. I know that I can handle this because I’ve done it so many times, but honestly I just really don’t want to feel like like crap all the time and not be able to function. All I can try and do is hope that the electrophysiologist will have some ideas and the gastro appointment will go well.

I hope you all have a good week!

Starting School & Declining Health  

This week was my first week of being a full time college student!

I’m taking five class, which translates to 13 hours. Since this is my first semester (besides the one summer class I took) I’m taking the basics: Algebra, Biology and Lab, US History, and English.

This week has been a bit of a whirlwind. My health has been declining some, so I had a doctors visit on Monday after class. ( Warning TMI) She’s putting me on a new medication to hopefully help with a new problem I’ve been having-  passing undigested food in my stool. I really need to go see a gastroenterologist again, but I honestly just don’t want to. I know I probably need to do another colonoscopy/endoscopy and I don’t want to do that. For now I’m going to try the Colestid and see what happens.

Monday traffic at my school was TERRIBLE! I left my house at 9:15 and my class doesn’t start till 10:00, so I thought I had more than enough time. It only takes me 13-15 minutes to get there, so I had thirty minutes to park and find my class. When I got to the parking lot there were at least 150-200 people circling the parking lots looking for a spot. I honestly wasn’t really sure what to do. I circled every parking lot at least three times, and as the clock creeped closer to ten I got really nervous. Professors are understanding when people are late on the first day, but I still didn’t want to make a bad first impression, even if there were circumstances out of my control. Luckily I saw a guy come out of the school and I was able to stalk him and take his spot. That was at 9:55 so I had five minutes to walk tot the other side of the school and find my class. I made it to class on time though, which seemed like a miracle.

The rest of the week I gave myself an hour to get to campus and parking wasn’t really a problem. I had to walk really far, and wait around an hour for class to start, but at least I had a spot. My classes have been good, and overall haven’t given me very much work. I’m sure that will change soon though. Over the weekend I have some work, but since it’s labor day weekend it isn’t anything unmanagable, especially since I have three days to do it.

With my health getting worse, the reality of being in school and being chronically ill really hit me mid week. I’ve done the whole being chronically ill and going to school thing for 5 1/2 years and it’s getting old. I feel like I work so hard and get nothing in return. I’m trying to be positive and go into the new school year optimistically, but when things go south it feels more painful when I’ve been optimistic. Another big change is being around people the majority of the day. Since I’ve spent most of my time alone since becoming sick I’ve developed some social anxiety that makes being in public for extended periods of time emotionally exhausting (not to mention physically exhausting from everything else) and overwhelming.

Even if this is going to be a rough semester like the years before I’m grateful to be in a place at the moment that at least let’s me try to continue my education. Back in May there was no way I’d be able to go to school at all. It’s crazy how much my health can change so quickly. It declines rapidly and improves rapidly, I just never know which one to expect! Are you in school/ working? Do you have any Fall plans?

Let me know!

Lots of Love,

Alyssa