So right now, I'm going to tell you about my journey through the discovery of my POTS. I will tell the long version first, but you can scroll to the bottom for a summarized version.
Before I get started, let me tell you a little bit of useful background info. For years before I discovered I had POTS, I would have lots of trouble eating solid foods in the morning. I felt like if I did, I would throw up, so we learned that I could drink protein shakes in the morning to at least get a little bit of substance into my body. I'm also very tall. (FYI)
It all started at Band Camp. (I know, you're probably thinking, "One time, at band camp...") And before your start making assumptions about band camp, let me tell you a little bit about it. It lasts 8 hours a day for 2 weeks. We do push-ups, sit-ups, laps, and plenty of other exercises/punishments. Band camp is no joke. It's way harder than Cheer camp or Dance camp (I've been to both and if you've been you know what I'm talking about). Plus, I was on color guard (you know, the flag twirlers), so we worked like 3 times harder than the other band students.(we we're also out in the sun while the other band students were under a giant covered area with HUMONGOUS fans blowing on them..)
Now into the good part. The first day of band camp, I woke up and drank my protein shake like usual. But, it didn't settle well with my stomach and I threw up. I sort up brushed it off, and went ahead to band camp. I also noticed I was more nervous than I should've been, but once again, I brushed it off. Once at camp, I almost passed out for no explained reason. My teachers told me that I probably was just nervous and I should just get through the day. This scenario played out for the rest of the 2 weeks. During this time, I also went to see my normal doctor and she told me that I was dehydrated and I just needed to drink lots of water. I barely made it through band camp, but I pushed through the nausea, dizziness, and anxiety.
After band camp, there was about 2 weeks left until school. During those 2 weeks I seemed to get better, but on the first day of school, everything came back. I got sick and had to go home. For the next few weeks I woke up every morning and tried to go to school, but I never felt good enough to go. By this time, we started to get really worried, so we got appointments with every type of doctor we could think of. First off, was a GI doctor. She gave me an upper GI scope and found that I had acid reflux, which explained the throwing up in the mornings. For this, she gave me some Prevacid which helped a lot!
Next up, was the Neurologist. He suspected I had POTS and put me on a high salt and water diet. He also put me on Florinef (which helps your body retain more salt) and Mestinon (which helps the blood vessels in your legs constrict when you stand). The Florinef didn't really seem to help, but I had a really bad reaction to the Mestinon. Every time I would take it, I would get really bad stomach cramps and nausea. So, eventually I stopped taking it.
Because my Neurologist never actually gave us a firm diagnosis of POTS, we scheduled appointments with an Endocrinologist and a Geneticist. They both gave me some blood tests that came back normal. By this time I began to think I was crazy because none of the medicines were working and all the tests came up negative.
We then began to wonder why my Neurologist never gave me a tilt table test. (a test that confirms whether or not you have POTS). After that we began having some problems with this doctor, so we switched neurologists. This time we got the tilt table test and a confirmation of POTS. Which was good, because now we had a diagnosis, but bad because there really isn't a known cure (plus all of that running around to a geneticist and endocrinologist was for nothing).
By now, I had missed a lot of school, so my doctor wrote a letter to my school requesting me to be labeled as Home Bound. This means that the school knows I am missing for medical reasons and I won't be penalized for my absences. The school also began to send a teacher over to my house a few days a week to bring me new work and take back my completed work. The home bound program is good for me because I am on the exact same curriculum as my classmates, so if I can go back to school, I will be on the same page as them.
So while I was trying to catch up with my schoolwork, my mom was doing some research on the internet for information on POTS. She came across a blog (which I will link here) about a woman with POTS who is in a study for an exercise program. There should be another tab at the top of the page where you can go to learn more about the study, or you can go to the blog I mentioned earlier. My mom did some more research and ended up getting me into the study.
Which, brings us to now, be working on the exercise program and trying to get caught up in my schoolwork (still!). You can follow this blog to receive updates on my progress!
SUMMARIZED VERSION
I began having symptoms of nausea, dizziness, and anxiety at band camp. I struggled through band camp, but by the time school started, I couldn't take it anymore. My doctor wrote a letter to my school getting me into the Home Bound program so I could get caught up with my schoolwork without being penalized for my absences. Then, we got an appointment with a GI doctor and she gave me an upper GI scope and found that I had acid reflux. Next we went to see a Neurologist and he suspected I had POTS, but it wasn't confirmed until a few months later when he issued a tilt table test for me.
Once I was diagnosed with POTS we were kind of at a loss for what to do since none of the medicines that my doctor gave me were making much of a difference. My mom was doing some research on the internet and found a study for an exercise program on this blog. She did a little more research and got me into the study.
That brings us to today. Me, working on the exercise program and trying to catch up with my school work (still!). So, follow my blog for regular updates on how I'm progressing with my exercise program!
Before I get started, let me tell you a little bit of useful background info. For years before I discovered I had POTS, I would have lots of trouble eating solid foods in the morning. I felt like if I did, I would throw up, so we learned that I could drink protein shakes in the morning to at least get a little bit of substance into my body. I'm also very tall. (FYI)
It all started at Band Camp. (I know, you're probably thinking, "One time, at band camp...") And before your start making assumptions about band camp, let me tell you a little bit about it. It lasts 8 hours a day for 2 weeks. We do push-ups, sit-ups, laps, and plenty of other exercises/punishments. Band camp is no joke. It's way harder than Cheer camp or Dance camp (I've been to both and if you've been you know what I'm talking about). Plus, I was on color guard (you know, the flag twirlers), so we worked like 3 times harder than the other band students.(we we're also out in the sun while the other band students were under a giant covered area with HUMONGOUS fans blowing on them..)
Now into the good part. The first day of band camp, I woke up and drank my protein shake like usual. But, it didn't settle well with my stomach and I threw up. I sort up brushed it off, and went ahead to band camp. I also noticed I was more nervous than I should've been, but once again, I brushed it off. Once at camp, I almost passed out for no explained reason. My teachers told me that I probably was just nervous and I should just get through the day. This scenario played out for the rest of the 2 weeks. During this time, I also went to see my normal doctor and she told me that I was dehydrated and I just needed to drink lots of water. I barely made it through band camp, but I pushed through the nausea, dizziness, and anxiety.
After band camp, there was about 2 weeks left until school. During those 2 weeks I seemed to get better, but on the first day of school, everything came back. I got sick and had to go home. For the next few weeks I woke up every morning and tried to go to school, but I never felt good enough to go. By this time, we started to get really worried, so we got appointments with every type of doctor we could think of. First off, was a GI doctor. She gave me an upper GI scope and found that I had acid reflux, which explained the throwing up in the mornings. For this, she gave me some Prevacid which helped a lot!
Next up, was the Neurologist. He suspected I had POTS and put me on a high salt and water diet. He also put me on Florinef (which helps your body retain more salt) and Mestinon (which helps the blood vessels in your legs constrict when you stand). The Florinef didn't really seem to help, but I had a really bad reaction to the Mestinon. Every time I would take it, I would get really bad stomach cramps and nausea. So, eventually I stopped taking it.
Because my Neurologist never actually gave us a firm diagnosis of POTS, we scheduled appointments with an Endocrinologist and a Geneticist. They both gave me some blood tests that came back normal. By this time I began to think I was crazy because none of the medicines were working and all the tests came up negative.
We then began to wonder why my Neurologist never gave me a tilt table test. (a test that confirms whether or not you have POTS). After that we began having some problems with this doctor, so we switched neurologists. This time we got the tilt table test and a confirmation of POTS. Which was good, because now we had a diagnosis, but bad because there really isn't a known cure (plus all of that running around to a geneticist and endocrinologist was for nothing).
By now, I had missed a lot of school, so my doctor wrote a letter to my school requesting me to be labeled as Home Bound. This means that the school knows I am missing for medical reasons and I won't be penalized for my absences. The school also began to send a teacher over to my house a few days a week to bring me new work and take back my completed work. The home bound program is good for me because I am on the exact same curriculum as my classmates, so if I can go back to school, I will be on the same page as them.
So while I was trying to catch up with my schoolwork, my mom was doing some research on the internet for information on POTS. She came across a blog (which I will link here) about a woman with POTS who is in a study for an exercise program. There should be another tab at the top of the page where you can go to learn more about the study, or you can go to the blog I mentioned earlier. My mom did some more research and ended up getting me into the study.
Which, brings us to now, be working on the exercise program and trying to get caught up in my schoolwork (still!). You can follow this blog to receive updates on my progress!
SUMMARIZED VERSION
I began having symptoms of nausea, dizziness, and anxiety at band camp. I struggled through band camp, but by the time school started, I couldn't take it anymore. My doctor wrote a letter to my school getting me into the Home Bound program so I could get caught up with my schoolwork without being penalized for my absences. Then, we got an appointment with a GI doctor and she gave me an upper GI scope and found that I had acid reflux. Next we went to see a Neurologist and he suspected I had POTS, but it wasn't confirmed until a few months later when he issued a tilt table test for me.
Once I was diagnosed with POTS we were kind of at a loss for what to do since none of the medicines that my doctor gave me were making much of a difference. My mom was doing some research on the internet and found a study for an exercise program on this blog. She did a little more research and got me into the study.
That brings us to today. Me, working on the exercise program and trying to catch up with my school work (still!). So, follow my blog for regular updates on how I'm progressing with my exercise program!
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