So, I haven't updated this thing in several months. I guess that's a good thing. Over the rest of the summer I really wasn't that symptomatic. Oh, there were days, but not as many.
I'm a member of the marching band at my university. Band camp was in mid August and consisted of 5 days of intense marching and playing. During 2007 at band camp I had a LOT of problems. I'd have to sit out entire practice sessions due to symptoms flares. This is was before I discovered the wonders of compression tights. This year to band camp I didn't have to sit out at all. There were practices where I'd have to lie down and stick my legs up in the air to get the blood out, but that was the extent of it. Performing in band really isn't an issue with me. As long as I'm continuously moving I don't have a lot of POTS problems. Standing in one place for a period of time is what gets me. So practice, especially drill setting days, are the worst for me. Thankfully my class schedule has it to where I miss the days that we normally set drill, so I just learn it as I go along the following day.
If you're interested in seeing what we as a band do, just go to youtube and look up "Pitt Band." Or you can check out of this nifty video that a fan shot of our latest halftime show, which was Guitar Hero (the song is "Through the Fire and Flames" by Dragonforce:
Lately I've been having cyclical stomach problems. They seem to get worse just before my time of the month and subside afterwards. I went to a gastroenterologist a few weeks ago to inquire about this. The doctor was a royal douchebag and was belittling my symptoms. I was this close to up and walking out of the appointment and calling him a douchebag. Towards the end of the appointment he seemed to attempting to redeam himself but not very well. A blood test indicated to that I had a slightly high liver enzyme which indicated fat in my liver, so I went in for an ultrasound the following week. The ultrasound was clean, so I guess the liver enzyme was a fluke.
The past two weeks I've been sick in one capacity or another. I finally got over everything on Wednesday. I had a cold followed by a stomach bug. The stomach bug caused me to miss an exam for a class so I had to go to student health to get a doctor's note so I can make up said exam. The doctor I saw has the most impressive bedside manner that I've seen in a long time. When he asked me for my medications I listed them off. He asked me what I took the atenolol for and I told him POTS (but in long form). He KNEW WHAT I WAS TALKING ABOUT!!! Granted, he wasn't an expert on it but he KNEW!! I seriously wanted to reach out and hug him. With all my bad crazy doctor experiences, it made my day.
Showing posts with label Symptoms. Show all posts
Showing posts with label Symptoms. Show all posts
Monday, October 6, 2008
Friday, May 23, 2008
POTS+Camping=Hmmm
My two week sojourn in Maine was an interesting time. We arrived with two naked weeks ahead of us with no real plan on what to do. My co-campers were most interested in doing some serious hiking, so hiking we went.
I'm horribly out of shape. I'm getting better about it, but at the time I was horribly out of shape. When you have to devote a month of your life to literally nothing but papers, exercise tends to fall by the wayside. I didn't have the time nor the energy to use one of Pitt's ten billion gyms. Plus, I hate cardiovascular exercise. Always have. Even when I was a kid and an active gymnast in the best shape of my life I hated cardio. Since my heart can barely regulate itself sitting down, it doesn't have much of a chance when movement comes into the picture.
Hiking up mountains is something of a workout. For the first few hikes I went along but the first time we tackled a trail labeled "Strenuous" I lost it. The trail was literally crazy steep stairs for 1,000 feet in the air with LADDERS. I had to stop every 10 feet. I felt like I was going to pass out. My heart was all over the place. I was being cruelly reminded with every step I took that yes, I was different. It was then that my co-campers realized I wasn't having a good time at this and told me it was OK if I wanted to sit things out. So anytime they went on a hike labeled "strenuous" (which was every time after than except for one) I gladly sat in the car watching Angel on DVD.
Being alone in the woods, or even with other people in the woods, gives you a lot of time to think. Although the trip was an overall positive experience, I experienced a lot of darkness on the trip thanks to the POTS. I felt like a weak link. I felt useless. I felt like I was raining on everyone's good time and holding everyone up. The three I was with had been working out for about a month prior to the trip, but I didn't have the time nor the desire (because I hate cardio) to join them. So here they are running up the mountains like they're nothing and I'm some out of breath dragass. Great feeling. I resented them for a while until I realized they really weren't thinking negatively of me for being slow, they don't care. That's why I'm friends with them. They treat my illness like I want it to be regarded: as though it's some minor quirk like having a twin or being left-handed. I don't wish to attract attention because of it, just live among you. And most of the time I succeed.
I'm horribly out of shape. I'm getting better about it, but at the time I was horribly out of shape. When you have to devote a month of your life to literally nothing but papers, exercise tends to fall by the wayside. I didn't have the time nor the energy to use one of Pitt's ten billion gyms. Plus, I hate cardiovascular exercise. Always have. Even when I was a kid and an active gymnast in the best shape of my life I hated cardio. Since my heart can barely regulate itself sitting down, it doesn't have much of a chance when movement comes into the picture.
Hiking up mountains is something of a workout. For the first few hikes I went along but the first time we tackled a trail labeled "Strenuous" I lost it. The trail was literally crazy steep stairs for 1,000 feet in the air with LADDERS. I had to stop every 10 feet. I felt like I was going to pass out. My heart was all over the place. I was being cruelly reminded with every step I took that yes, I was different. It was then that my co-campers realized I wasn't having a good time at this and told me it was OK if I wanted to sit things out. So anytime they went on a hike labeled "strenuous" (which was every time after than except for one) I gladly sat in the car watching Angel on DVD.
Being alone in the woods, or even with other people in the woods, gives you a lot of time to think. Although the trip was an overall positive experience, I experienced a lot of darkness on the trip thanks to the POTS. I felt like a weak link. I felt useless. I felt like I was raining on everyone's good time and holding everyone up. The three I was with had been working out for about a month prior to the trip, but I didn't have the time nor the desire (because I hate cardio) to join them. So here they are running up the mountains like they're nothing and I'm some out of breath dragass. Great feeling. I resented them for a while until I realized they really weren't thinking negatively of me for being slow, they don't care. That's why I'm friends with them. They treat my illness like I want it to be regarded: as though it's some minor quirk like having a twin or being left-handed. I don't wish to attract attention because of it, just live among you. And most of the time I succeed.
Monday, January 28, 2008
Oooh, your maroon stockings are so pretty!
Uh, thanks, but its actually the massive amount of blood hanging out in my legs.
Yeah, it seems that since I've quit the Florinef (or started the Atenolol) that I've developed one of those POTS symptoms that I previously hadn't had: molted legs from blood poolage. I've had blood pooling before, but never visibly except for in my feet. Now its appearing in my legs. It's pretty subtle, they don't look anything like this.
In other medical news, it's now been over a week since I started the Atenolol. I think I still need another week to really determine just how good this treatment is for me. So far I think it's doing a good job, but that's not to say this experience has been without side effects and other occurances.
Coldness I'm cold all the time now. These days I'm rarely seen without a light fleece jacket except for when I'm just coming in from having walked a mile or so. It also doesn't help that Pittsburgh is chilly in the winter and my bedroom window seems to be a little drafty. My hands and feet are also cold all the time as well, even more so than the originally were.
Bizarre Dreams Being on a Paxil/Florinef and others cocktail for a long time, I'm used to having odd dreams, but the past few mights have been really taking the cake. In one dream I had three seizures back to back (note: I do in fact have a seizure disorder completely unrelated to POTS and for about the past year the condition has been inactive). That's my idea of a nightmare right there. I also had a dream about an old flame who, in a nutshell, led me on without realizing it himself for a while and then when he did tried to let me down as gently as possible but ended up leaving the situation very open ended and ambiguous, thus confusing the hell out of me and put me through an emotional hell for a while (didn't help that I was a really stupid freshman at the time). So having him insert himself in ANY dream of mine disturbed me profoundly.
Waxing and Waning of Appetite When I was first put on the Atenolol I had the appetite of 3 pregnant women. The past few days however, that's turned into the appetite of a chemotherapy patient. I've been eating very meager portions of meals but not feeling like I'm missing out on anything. However, this brings me to my next complaint...
Stomach Troubles Like I said, I haven't been eating very much, but when I do sometimes it's accompanied by nausea or bloating and gas. I'm used to mild bloating and gas, but it's been even moreso lately. The random nausea is new too. It could be that something had gone bad in the salad I had last night. However, Pepto killed the nausea and I felt fine.
However there have been a lot of good things. My heart rate and blood pressure have both dropped. I'm not as tired all the time as I used to be (although I am taking a nap after this... because I can :) ). So far the good is outweighing the bad, but this is a drug that takes a few weeks to level out in your system, so we'll see how it goes.
Yeah, it seems that since I've quit the Florinef (or started the Atenolol) that I've developed one of those POTS symptoms that I previously hadn't had: molted legs from blood poolage. I've had blood pooling before, but never visibly except for in my feet. Now its appearing in my legs. It's pretty subtle, they don't look anything like this.
In other medical news, it's now been over a week since I started the Atenolol. I think I still need another week to really determine just how good this treatment is for me. So far I think it's doing a good job, but that's not to say this experience has been without side effects and other occurances.
Coldness I'm cold all the time now. These days I'm rarely seen without a light fleece jacket except for when I'm just coming in from having walked a mile or so. It also doesn't help that Pittsburgh is chilly in the winter and my bedroom window seems to be a little drafty. My hands and feet are also cold all the time as well, even more so than the originally were.
Bizarre Dreams Being on a Paxil/Florinef and others cocktail for a long time, I'm used to having odd dreams, but the past few mights have been really taking the cake. In one dream I had three seizures back to back (note: I do in fact have a seizure disorder completely unrelated to POTS and for about the past year the condition has been inactive). That's my idea of a nightmare right there. I also had a dream about an old flame who, in a nutshell, led me on without realizing it himself for a while and then when he did tried to let me down as gently as possible but ended up leaving the situation very open ended and ambiguous, thus confusing the hell out of me and put me through an emotional hell for a while (didn't help that I was a really stupid freshman at the time). So having him insert himself in ANY dream of mine disturbed me profoundly.
Waxing and Waning of Appetite When I was first put on the Atenolol I had the appetite of 3 pregnant women. The past few days however, that's turned into the appetite of a chemotherapy patient. I've been eating very meager portions of meals but not feeling like I'm missing out on anything. However, this brings me to my next complaint...
Stomach Troubles Like I said, I haven't been eating very much, but when I do sometimes it's accompanied by nausea or bloating and gas. I'm used to mild bloating and gas, but it's been even moreso lately. The random nausea is new too. It could be that something had gone bad in the salad I had last night. However, Pepto killed the nausea and I felt fine.
However there have been a lot of good things. My heart rate and blood pressure have both dropped. I'm not as tired all the time as I used to be (although I am taking a nap after this... because I can :) ). So far the good is outweighing the bad, but this is a drug that takes a few weeks to level out in your system, so we'll see how it goes.
Wednesday, January 9, 2008
Last night everything on the symptoms front got a whole lot worse than it was yesterday afternoon... this was compounded by the fact that my roommates decided to have people over for dinner (all friends of ours... I okayed it on Monday, but wasn't feeling up to it last night). My legs felt like they had sandbags tied to them. Standing up was a chore. I had a headache. My stomach hurt. I had an interesting taste in my mouth. It wasn't fun.
I'm feeling kind of draggy today. I don't have to be at work until 2 and I don't have class until 6 so I'm just killing time until I have to leave the house.
Also, not being on birth control makes me remember what PMS was. ugh.
I'm feeling kind of draggy today. I don't have to be at work until 2 and I don't have class until 6 so I'm just killing time until I have to leave the house.
Also, not being on birth control makes me remember what PMS was. ugh.
Tuesday, January 8, 2008
Adrenaline from Hell
I seem to have been on the adrenaline kick from hell the past few days. I can barely sleep, but I feel wide awake. I'm tense all the time. I've been sitting down for about half an hour now and my HR is still hovering at 100 bpm. Normally when I get home for the day I take a nap but I don't feel the need to.
I'm not sure what could be causing it. I ran out of birth control pills, but that doesn't explain anything. It could be the stress of starting a new semester (my workload is already pretty crazy and I haven't even had two of my classes yet). It could be the fact that although I've never garnered a bipolar diagnosis, I display some of the symptoms and I could be in an upswing. It could be everything. Either way, I don't like being wound this tight. It makes me antsy and unable to sit still.
I'm not sure what could be causing it. I ran out of birth control pills, but that doesn't explain anything. It could be the stress of starting a new semester (my workload is already pretty crazy and I haven't even had two of my classes yet). It could be the fact that although I've never garnered a bipolar diagnosis, I display some of the symptoms and I could be in an upswing. It could be everything. Either way, I don't like being wound this tight. It makes me antsy and unable to sit still.
Thursday, December 20, 2007
Shopping? Ugh.
Thanks to POTS I may be one of the rare few of the female kind that doesn't like to shop. I generally don't go out of my way to go shopping in Pittsburgh... I don't have a car and I live in the city. Most of the shopping centers are in the suburbs and not pedestrian friendly. It takes a pretty good chunk of ones afternoon to negotiate a shopping trip... time I don't have.
However, I'm in North Carolina for the holidays and the only thing my friends and I could think of to do was shop. So we loaded up and drove an hour to a mall in Charlotte. I had my energy for a good little while... as long as we kept moving. My one friend got sucked into Wet Seal and with her, once she goes in, fat chance of getting her out for a while. Of course not many of the clothes there interested me, so all there was to do was stand around. Standing around makes me light headed, weak, cranky, and hot. At this point I'm relying on the cane I carry around with me for such events. Luckily by then we had to leave the mall to get back home for an engagement... as opposed to more standing around.
So yeah, that's why it's hardly ever my idea to go shopping. When I go, I feel like crap.
However, I'm in North Carolina for the holidays and the only thing my friends and I could think of to do was shop. So we loaded up and drove an hour to a mall in Charlotte. I had my energy for a good little while... as long as we kept moving. My one friend got sucked into Wet Seal and with her, once she goes in, fat chance of getting her out for a while. Of course not many of the clothes there interested me, so all there was to do was stand around. Standing around makes me light headed, weak, cranky, and hot. At this point I'm relying on the cane I carry around with me for such events. Luckily by then we had to leave the mall to get back home for an engagement... as opposed to more standing around.
So yeah, that's why it's hardly ever my idea to go shopping. When I go, I feel like crap.
Tuesday, December 18, 2007
First Post in a New Blog
Hello.
My name is Harper. I'm a 20 year old college student in Pittsburgh. I have Postural Orthostatic Tachycardia Syndrome, or POTS for short. I was initially diagnosed at the age of 15 and rediagnosed at 20. I'm keeping this blog to document my medical journey and to hopefully educate people as to what this condition is.
So what is POTS? POTS is a syndrome that basically means when I stand up, my body can't counteract the forces of gravity very well, thus forcing my heart to beat much quicker than the average person. This anomaly can be caused by any number of factors, but in most people that have it chronically it is believed to be caused by one's autonomic nervous system not working correctly, or dysautonomia. Your autonomic nervous system controls the things in your body that you don't have to worry about consciously, such as heartrate, sweating, breathing, body temperature, blood pressure, digestion, and the like. Due to this I have a whole host of seemingly unrelated symptoms including, but not limited to:
tachycardia (HR over 100 beats per minute)
low blood pressure
digestive problems
difficulty with body temperature regulation
blurring of vision
blood pooling in my legs
weakness
brain fog
feeling overstimulated
Those are just the ones I can think of off the top of my head that I've experienced recently. Anyhow, I plan on writing more in depth soon about medicines, treatments, and medical tests.
Harper
My name is Harper. I'm a 20 year old college student in Pittsburgh. I have Postural Orthostatic Tachycardia Syndrome, or POTS for short. I was initially diagnosed at the age of 15 and rediagnosed at 20. I'm keeping this blog to document my medical journey and to hopefully educate people as to what this condition is.
So what is POTS? POTS is a syndrome that basically means when I stand up, my body can't counteract the forces of gravity very well, thus forcing my heart to beat much quicker than the average person. This anomaly can be caused by any number of factors, but in most people that have it chronically it is believed to be caused by one's autonomic nervous system not working correctly, or dysautonomia. Your autonomic nervous system controls the things in your body that you don't have to worry about consciously, such as heartrate, sweating, breathing, body temperature, blood pressure, digestion, and the like. Due to this I have a whole host of seemingly unrelated symptoms including, but not limited to:
tachycardia (HR over 100 beats per minute)
low blood pressure
digestive problems
difficulty with body temperature regulation
blurring of vision
blood pooling in my legs
weakness
brain fog
feeling overstimulated
Those are just the ones I can think of off the top of my head that I've experienced recently. Anyhow, I plan on writing more in depth soon about medicines, treatments, and medical tests.
Harper
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