POTS... and not the good kind

Rocky Mountain High

2009-06-04T21:05:00.002-04:00

My POTS has been fine lately. Other than the time I ran out of my Atenolol for a couple of days, no complaints. I decided to try and see if maybe I didn't need it. Turns out I do. The Atenolol, combined with my compression tights and a diet that contains fruits and veggies as opposed to the bread and cheese I was living on.

I'm in North Carolina at the moment. I moved out of Pittsburgh once and for all on May 24th, driving though Virginia and staying overnight with a friend. I'm moving to Denver in a week to begin my MSW studies at the University of Denver. My mom, best friend, and I are driving out via I-40 through Knoxville, Nashville (stay the night), Memphis, Little Rock, Oklahoma City (stay the night), Amarillo, Albuquerque, Santa Fe (stay the night), Colorado Springs and into Denver, arriving on the 14th. Hopefully I'll nail an apartment soon after. The way the rental market in Denver is looking based on Craig's List ads, they're pretty desperate for tenants.

I'm wondering how my POTS is going to react to the elevation. I'm also going to have to go through the heinous process of finding a doctor who knows what I'm talking about.

Miraculous Turnaround

2009-03-25T23:07:00.003-04:00

I'm the healthiest I've ever been in my life. No, seriously.

I got off the Paxil in December. I realized I was running out, said fuckit and put myself off of it. It was hard. It was unpleasant. It put me through a rough dark patch. But I came out of it alive. And stronger. And with more energy. Enough energy that I'm not missing some form of work every week like I was last year. It feels amazing. I honestly think that a lot of my POTS flares were due to the Paxil wearing me out. Oh, the POTS is still there. But Paxil made it so much worse.

This semester so far I have only missed one day of work due to POTS. I missed another day because of a monster cold. That's it. I've been able to come in everyday, which is a major improvement. Due to some political work issues, my job performance hasn't been the best, but the air has been cleared in that realm as well and things will hopefully be looking up in the one month I have left.

Speaking of which, I will be graduating in exactly one month from tomorrow. I've been accepted to three graduate programs. I'm in the process of deciding between the two of them and this is going to be the most difficult decision I've ever had to make in my life.

I also celebrated my two year seizure free anniversary last month. I couldn't be happier in that department.

I still get POTS symptoms. Cyanosis is such an attractive feature, as are molted legs. I don't do well standing in lines and have been known to pop a squat in public places (like a train station or an airport). I still faithfully wear my tights and won't leave the house without them. I still take my Atenolol. I still startle like a PTSD vet. My heart still struggles sometimes.

But overall, my quality of life has improved dramatically. I honestly don't know how I functioned all those years.

Wow I Fail

2008-10-06T02:50:00.004-04:00

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.

2008-06-17T13:55:00.003-04:00

Well, my Atenolol has yet to come in the mail, but the withdrawal effects have been really mild compared with what I was warned about by my doctor and pharmacist. I experienced some heart irregularities a few times, but that has subsided. Overall, I've been much warmer than I was on the Atenolol, can't get to sleep as easily, and I startle very easily. All of these had been pre-Atenolol phenomena with me but I didn't really appreciate it until now. Hopefully the drugs will get here soon.

Even though I have an appointment with my internist in September, I'm thinking of setting up an appointment sometime in July to discuss getting me off the Paxil. By September school, band and the internship will be in full swing and I know from experience that's definitely NOT the time to get me going through withdrawal. I ran out of Paxil once during finals week my freshman year and barely slept for 4 days. I even took a Tylenol PM in desperation one night all it did was make me feel normal as opposed to wound.

I've bought a bicycle. I normally hate cardio exercise, but bike riding is an exception. It's incredibly freeing and it's great to have some independence with my mobility as opposed to being reliant on public transit. I'm taking it easy for now and only doing short rides in flattish areas and not trying yet to scale any of Pittsburgh's epic hills

Running out of drugs

2008-06-04T21:08:00.003-04:00

I ran out of Atenolol AGAIN... with the camping and things being stolen it was the farthest thing from the forefront of my mind and when I finally realized I needed some more it was too late to get it in time. So I've been out for a couple of days and today it finally hit me. I woke up way too hazy to function so I called off of work (plus it was raining and I walk roughly a mile there) and went back to bed until 4 and laid in bed on and off until 6 because anytime I sat up for longer than I minute I got extremely nauseous. Not fun.

Morning Sickness

2008-06-02T12:02:00.003-04:00

I seem to be having bouts of morning nausea even though I KNOW I'm not pregnant. This has been going on for a couple of weeks now and is kind of strange. I keep food down usually and it subsides after maybe an hour, but that doesn't mean it's pleasant.

This is puzzling me.

POTS+Camping=Hmmm

2008-05-23T23:35:00.002-04:00

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.

Ultrasound

2008-05-19T13:21:00.003-04:00

Hey guys,

I got back from Maine a few days ago and I'll write later about those adventures. For now, I thought I'd catch up on the ultrasound, which I never wrote about.

I went to Magee Women's Hospital here in Pittsburgh (and two blocks from my apartment) for the procedure. It took place in the Breast Center. I had to remove my top and bra and put on a robe that looked as though I should be serving sushi at a Japanese restaurant. The center had soft lighting, immaculate decorations and looked very inviting and comforting. In the second waiting room after you had changed they even had free tea. I had to sit in a 3rd waiting area for about an hour before they called me back. In that time I managed to read People from cover to cover and felt as though I had lost several brain cells. Also while waiting a nurse came up to a woman near and said "miss the doctor would like to see you now." She said "They found something didn't they?" And the nurse said "Kind of... I'll let the doctor explain." That was kind of unnerving to watch... just about as bad as that time I was in the ER freshman year and heard a woman die in the triage unit I was in.

The procedure itself wasn't bad at all. Just some goop and a wand to look for things. I had felt the lump go down significantly over the days leading up to the procedure so I wasn't surprised when they couldn't find anything. So the good news is: No cancer here!

I wasn't sure whether or not to be comforted or patronized by how the hospital had gone out of their way to make the breast center over the top warm and inviting. It honestly didn't ease my nerves one bit. You're not going to trick me into thinkng that having a deadly disease is a cup of tea. Cancer is still cancer, no matter how you dress it up and all the free tea in the world doesn't change that. I've never had cancer and I hope to never experience it, but if cancer patients are anywhere near as bitter as I am when it comes to medical stuff, they'd probably feel as though their intellects had just been insulted. I also can't help but feel that a prostate cancer center for men would probably not been as over the top done as what the breast center's was. So to the breast center: save some money and just stick to the standard waiting room shtick.

Woo doctor's appointment!

2008-04-25T15:39:00.000-04:00

I went to the gynecologist (actually she was a nurse practitioner, but whatever) about the lump. She found it and thinks it's more than likely a lymph node acting up. But, to ere on the side of caution, I have an ultrasound on Tuesday.

The funniest thing was when I called to set up my appointment, the receptionist was just going out of her way to see if I had any questions or concerns and said everything really empathically, until she said rather sternly that I couldn't bring children to the facility. I found the contrast amusing, as well as the way she just went out of her way to be sensitive and nice. Most receptionists deal with things sort of matter of factly, which doesn't bother me since I'm used to that manner and I know they deal with this shit everyday.

My mom's friend who had a pretty rough case of lymphoma said that if my lump is tender it's actually a good sign.

Senior!

2008-04-24T04:23:00.004-04:00

Tonight (actually last night since it's now into the wee hours of the morning) I finished up my last academic act of my junior year, thus making me a senior. I'm proud and at the same time wondering where on earth all this time went.

I found a small lump under my armpit yesterday. I made an appointment for my yearly gynecological appointment because I was due for and also asked if they can look at the lump. This happens on Friday. It scared the crap out of me yesterday but now I'm not as stressed. I'm obviously pretty worried, but optimistic that it's nothing, especially considering my age (20). I read online that 80% of these lumps turn out to be nothing. However, I've also been reading about the horrible things it could be (breast cancer, lymphoma). I know the worst thing you can can possibly do to yourself is read about disease insanity online, but I just couldn't help myself.

So, wish me cysts or angry non-cancerous lymph nodes.

Summer Challenges

2008-04-19T18:18:00.002-04:00

With the weather in Pittsburgh FINALLY getting nice (read: not raining/snowing every day, you can actually see the sun and you don't need a jacket to leave the house), comes a whole new set of POTS challenges. With warming weather, one's veins don't constrict as much, leading my blood to hang out in my legs even with compression tights most days. It's frustrating and tiring, which probably explains why I've spent most summers being extremely lazy.

Yesterday I left the house to go to another friend's house wearing shorts and a tank top. I realized that this was probably the first anyone other than my roommates has actually seen of my leg since September, when I started wearing the tights.

My semester wraps up on Wednesday evening, though for some reason I keep feeling like I'm done with nothing else to do, which is far from the truth. I still have two papers to finish and three presentations to give. I guess I'm not used to having no actual "finals" during finals week.

On April 30 my roommates and I are leaving for a two week camping trip to Maine in Acadia National Forest. I'm going to keep my contact with the outside world limited to the a couple of phone calls to my parents.

Doctor's Appointment

2008-04-13T02:23:00.004-04:00

I went to my Internist appointment on Friday morning. All systems are pretty much a go. The Atenolol is working wonders. I still use my tights, but that's a small price to pay for being able to move and not get tired. I told him about the stones and that I have yet to set a urologist appointment. Yeah, I really need to get on that, but when you have roughly 45-50 pages of written work to do in less than a month which will dictate your grad school admission (in social work, if you get a B or better in all your core classes then you get to skip the foundation year of grad school and get "advanced standing" meaning that you'll have a master's degree in only a year).

So yeah, I'll set that up sometime this week.

However, this week (and next week) is pretty packed. I have a concert Sunday, a community meeting which I HAVE to attend for one of my papers on Monday, a final on Tuesday, a paper due on Wednesday and a paper due on Thursday. The Wednesday and Thursday papers are more or less done (I have about one more additional page for the Wednesday paper). Next week I present and turn in the paper related to that community meeting on Monday, present and turn in a paper on Tuesday, present on Wednesday and I'm basically done. I say basically because I have an extension on another paper to an as of yet undetermined date... my professor and I are going to talk about that on Tuesday.

After all this is said and done my friends and I are taking an "end of the year" trip to Maine to camp for a little while. Should be fun.

Albuquerque, Spokane and Kidney Stones

2008-04-06T16:23:00.002-04:00

I traveled with the Women's basketball team for the first and second round games to Albuquerque. Wonderful city. Good food. Nice people. Nice Weather. It also didn't hurt that the women upset Baylor in the second round, meaning the next weekend I was out in Spokane for the Sweet 16. We didn't do so well out there against Stanford (who is currently in the women's final 4) and it decided to snow in Spokane while we were there, but it was an alright town.

Of course I had the routine POTS flareups at the airport. When you're weighed down like a pack mule, it happens. That's what the cane is there for. I tried when we were coming back from Albuquerque to not use the cane at all, but that failed about halfway through security. With all this traveling and early morning wakeup times and lack of sleep, POTS flareups were inevitable.

I came back to Pittsburgh for good (I was in town for 2 days between Albuquerque and Spokane) a week ago. All these trips and lack of foresight on my part has delayed my work on my massive end-of-semester papers, but I've figured out that as long as I write 2-3 pages on SOMETHING everyday, then I'll be fine and hopefully not pulling any all-nighters, which I despise.

So I'm in class on Tuesday when I feel a dull ache in my back. I thought it was the way I was sitting so I shift. When squirming didn't work I excused myself and walked around the building for a minute. When that didn't work, and the pain was getting so bad that I was actually wimpering in class, I called the ambulance on myself. I didn't even go to the hospital when I was hit by a CAR, just to put into perspective how badly this hurt.

Of course it took the medics a while to get there, so the campus police and first responders had to show up too. They also had to temporarily shut down traffic on 5th avenue to get me in, which I felt really bad about. By the time I got to the hospital I was screaming and crying. Of course they have to follow protocol and find a room and a nurse and take their time and blah blah blah. I was in one of those triage units with the cloth between you and next person. When they finally got a nurse, she said "I'll be with you in a minute" and disappears. I'm screaming and crying so loudly at this point that other people's relatives are looking at me funny. When the nurse wouldn't come I began screaming "HELP ME!!" It wasn't long after that that someone finally got on my case. When the tech came in to draw some blood and get a catheter in me, he was apologizing for hurting me. I was like "dude, that feels like kittens right now compared to the pain I'm in." The nurse gave me a muscle relaxant and a narcotic (Demerol) which was AMAZING. I went almost instantly from screaming crybaby to completely chilled out.

I had a CT scan to confirm what was suspected: kidney stones. Moving my stretcher to the CT room made me nauseous and I eventually lost my breakfast, but the narcotic was so damn good that I just didn't care.

The pain started up again so I was given some percocet. Once I sobered up a little bit from that I was taken home via campus police and given a prescription for some "just in case" narcotics, which I ended up filling and using.

The stone ultimately passed thank god. I should really set up the appointment with the urologist, but it always slips my mind. I have an appointment next week with the Internist for my POTS stuff.

I'm Alive

2008-03-19T02:03:00.002-04:00

Hey guys, I'm here and alive.

I didn't update much lately because frankly there's been nothing to report on the POTS front except for a couple of minor blips. My current level of Atenolol is working well for me and the removal of the Glyset was definitely a step in the right direction. The Paxil will probably be cut out at some point, it's just a question of when is the best time to withdraw. Right now, not so much.

I had spring break last week in which I went home. Thanks to a combination of reckless behavior, a poorly planned trip, and other circumstances, I arrived to the airport to come back to Pittsburgh at 5:30 am subsisting on only 7 hours of sleep for the prior two days. Bad call. That'll make your POTS flare up like no body's business.

I've also neglected to mention that a couple of weeks ago I got hit by a cop car while walking up the street past a gas station as the cop was turning in and didn't see me. I'm alright, although I was in pain for a week or so and was on the cane for that. At least I had a better explanation then for why I was on the cane than "random neurological disorder." I ran off after I was hit because I was pissed more at being inconvenienced than anything else but not before informing the cop that I thought he was a son of a bitch. On my way home I saw the cop car and got the tag and called the police once I got home to report the incident. The cop eventually came by the apartment to apologize and to get my information. He was clearly not the brightest crayon in the box because when I gave my date of birth as 1987 he said "ok, so that makes you 19?" Nope, almost 21.

I'm in the basketball pep band here and our Men's and Women's teams have made the NCAA tournament. Our men actually won the Big East Championship, which came out of nowhere. The men are going to Denver for the first round and the women are going to Albuquerque. I'm traveling with the women. I leave on Thursday and I'll be there until Tuesday at the latest (depends on if we win the 1st round).

Atenolol's back!

2008-02-28T11:51:00.003-05:00

I got my Atenolol in the mail yesterday I took my first redose today. This morning I woke up weak and knowing it was going to be a bad POTS day. I was on the verge of skipping class until I realized that today was proofing day here at work (I make the events calendar for a faculty and staff newspaper) and the extra 3 hours of sleep at that point would probably have just made things worse, so to class I went. I was using the cane from the get go today. I could feel the Atenolol kick in because around 10:30 I perked up a little more and my stomach started hurting. Still hurts. And I'm STILL full from a giant late dinner I had last night.

One interesting thing about being off the Atenolol is that at times I could actually taste the adrenaline in my mouth. Yeah, it really needed to be suppressed. I feel like I have slightly more energy now, but would love a nap later on today.

2008-02-27T00:33:00.003-05:00

Well, my Atenolol STILL hasn't come in the mail, which upsets me, but thankfully I've felt no withdrawal symptoms from going off of it. Just the POTS coming back more or less. I've been having to use the cane somewhat the past week or so. My vision blurs a little easier and I'm a lot more tired. You'd think an adrenal suppressant would make me tired, but nope, just the opposite. Too much adrenaline is tiring me out and I'm back in the routine of an afternoon nap (aka, me lying down for 6 hours). Oh, life.

Some of my stomach difficulty has gone away, but a lot is still there. I'm off the Glyset which has made little impact on my life except that I don't bloat as easily. I'm still having some heartburn, though.

I seem to have escaped whatever sickness is going around. Knock on wood, I hope I can continue to.

Fascinating Article

2008-02-23T13:08:00.002-05:00

I'm Ill, But Who Needs to Know?

Fascinating article I'm sure most of us chronically ill types can relate to. We don't want our illnesses to hold us back, we want to work, but at the same time we don't tell our employers upfront. I personally have done this. At my old job at Pizza Hut, I worked successfully for two month (it was a summer gig) and no one was any the wiser. At my current job I disclosed it about 3 months after I started working there. It's a small office and everyone's pretty cool about it.

But at the same time, I've had organizations to which I was seeking membership ask me about my health and me being stupid, I was honest and told them. I was suspicious about that question and contacted people to ensure that this wouldn't be used in a discriminatory way, and they assured me it wasn't. But guess what? It was.

So now my current position is "you are not getting my health information out of me unless your subpoena me because it's none of your business." Even then, aren't I protected under the 5th amendment in that case? So yeah, basically, legally speaking I don't have to tell you anything.

Stomach stuff and medical sexism

2008-02-22T23:51:00.002-05:00

I'm officially out of Atenolol. Although this sucks in that now I can hardly leave the house without a cane (and let me tell you how much fun canes can be on freezing rain coated sidewalks) and I occasionally have the heart pounds, I think I've solved the problem of my stomach pain. It was the Atenolol.

How do I know? Because I haven't taken it in two days and I haven't had stomach pain in two days. The days I took half the pill I had about half as much stomach pain.

I'm still going off the Glyset. It's $65 down the drain every 3 months that doesn't really do anything for me (the last time I tried to go off of it, I went cold turkey and ended up feeling like crap. This time I'm going halfsies and I feel fine). We'll see how I feel once I'm completely off of it.

Today I was bored and watching TV when I saw the Golden Girls was so, so I flipped to it. In this episode, Dorothy is struggling with a mystery illness, especially when her first doctor dismisses it as in her head and tells her to see a psychiatrist. How many of us have heard that one before? As the episode progresses, she gets a second opinion and lands the diagnosis of Chronic Fatigue Syndrome. She's of course, incredibly relieved to have a name attached to it (as most of us are... nothing worse than knowing something's wrong and no one believing you) and goes out to a fancy restaurant with her roommates to celebrate. As they're toasting she spots the doctor who initially told her to go see a psychiatrist. Dorothy summons the courage to go over to his table and say that she actually had a diagnosis now and the he was wrong and that if had just listened to her and put some humanity back into his profession then it could've saved her a lot of heartache. She also mentions that if she were a man, then her problems might've been taken more seriously.

Now, who afflicted with a dysautonomia hasn't been through that song and dance before? What's striking to me is that this episode aired in 1989. Almost 20 years later the medical profession is struggling with the same crap: telling patients (mostly women) that it's all in their head and to go see a psychiatrist and to stop bugging them with their problems. Furthermore, many illnesses which have a majority of women as patients get the "psychological origin" diagnosis than the illnesses that mostly afflict men.

I just love how far we've come as a society.

Random Thoughts in the Library being Next to a human germ bomb

2008-02-20T21:55:00.001-05:00

Seriously folks, if you're a sneezy mcsneezerton of a coughy mcsougherson, don't go out in public. Some of us with preexisting chronic conditions made worse by contagious illnesses can't afford to get sick.

2008-02-19T23:44:00.003-05:00

My stomach pain nearly everytime I eat these days has gotten out of hand. I'm cutting the Glyset back because I think it's the cause of my GI problems and I don't really need to be on it. Hopefully this will work. The pain has gotten to the point where food disgusts me. I'm dreading eating. Not fun. So far, cutting back on the Glyset seems to be helping.

I also ran low on Atenolol before realizing I needed to mail the prescription in to get it refilled. Oops. I cut the pills in half to have at least SOME to get me through tomorrow. I hope my pills will come in the mail by then. If not... then this will be fun. In the mean time withdrawing from Atenolol is like having a shot of adrenaline hit you all at once (though not as bad as Paxil withdrawal) and my POTS symptoms have been worse the past couple of days. I've been back on the cane. The looks you get when you're my age (20) walking around with a cane are pretty priceless. Especially when it's an old person who looks like they're thinking to themselves "well, it could be worse."

That's the pain...

2008-02-16T23:55:00.001-05:00

Why is it that nearly everything I put in my stomach these days ends in horrible pain?

I've damn near developed an aversion to eating.

This sucks.

Heartburn?

2008-02-12T23:31:00.004-05:00

I might be running out of Atenolol soon... I've been too lazy to send my prescription in to Caremark and when I realized that I had only 9 pills left, it was time to get on it. Hopefully I'll get it before I run out *crosses fingers.*

I'm not sure how well it's working. Overall it's alright, but I'm still cold all the time with a waxing and waning appetite (today I've been eating like 3 pregnant women). Also, I've noticed that I'm more prone to heartburn when I drink alcohol... and heartburn in general.

2008-02-08T10:31:00.000-05:00

One great thing about having POTS: you know its not going to be a productive day early on based on the fact that your legs are already swollen and in pain an hour after you wake up.

2008-02-07T15:23:00.000-05:00

All things considered, the Atenolol is working pretty well. The crazy side effects have subsided except for the dreams, but I'm used to that, and the being slightly chilly all the time. My appetite has managed to find a balance between hunger and not, which is good (although it tends on the "not" side). So yeah, I'm adjusting pretty well.

However, I still have POTS and that means I don't have as much energy to work with as everyone else. This semester I think I bit off WAY more than I can chew (16 hours of classes two of which are cross listed as graduate level, concert band, pep band, 10 hours of work per week and volunteering for a presidential campaign). That's a pretty heavy load for the normal ones among us but for someone with POTS it's pretty damn ridiculous. So I think I'm going to have significantly reduce or eliminate my involvement with the pep band. It's not like I'll be able to go on any of the trips this year what with classes being as crazy as they are (I'm not kidding when I say that my spring break will be spent working). I would reduce my volunteer involvement except that it's mandatory volunteering for one of my classes and I have to get 45 hours in by the end of the semester. Concert band is my stress release and quitting work isn't something I'm prepared to think about.

NOW they tell us

2008-01-31T22:00:00.000-05:00

People taking epilepsy medication have twice the risk of suicidal thoughts

I'm not currently on any, but back in the day when they were trying their damndest to get anything to work on me I was on a number of them and let me say this: yes. It does happen. With me it only happened with one drug and I was promptly taken off of it. This is one drug out of the five I ended up trying. And when they say twice the rate, they mean .43% of the sample group compared to .22% of the placebo group. But it does happen. And there should be warnings. Hopefully this will help people be aware that epilepsy meds are nothing to fuck with.

Oooh, your maroon stockings are so pretty!

2008-01-28T14:46:00.000-05:00

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.

Soooo tired

2008-01-24T21:38:00.000-05:00

Today I was tired BEYOND tired. I don't know if it's a side effect or me not getting enough sleep or a POTS thing or what. I could barely drag myself to my 9 am class and when that was over I skipped work and band practice to come back here and take a nap ultimately lasting 6 hours (on top of the 6 hours of sleep I got the night before) and guess what? I'm still tired! I met up with some of my fellow social work students tonight to work on a project and I was dragging ass barely able to contribute. I also didn't wear my compression tights today (for the second day in a row) and noticed considerable pain and pressure in my legs, forcing me to break down and don them, which alleviated that issue. But I'm still tired.

2008-01-23T22:05:00.000-05:00

Well, the Atenolol seems to be working. My POTS symptoms have been dramatically reduced, I have more energy and concentration than I've had in years. Today I was even brave enough to venture out of the house all day WITHOUT my compression tights. And you know what? I was fine.

There are three problems though. None are cause for great concern, but they're definitely strange. I've been more sensitive to cold lately, I've been peeing like a racehorse, and I've never been this hungry in my life. The cold thing and the peeing thing are more just annoying, but the being really hungry thing is kind of concerning. I'm not sure if I can attribute all of this to the Atenolol or if it's from stopping the Florinef, but these are definitely new sensations in my life.

Falling Into a Medical Abyss

2008-01-22T08:13:00.001-05:00

So I stumbled across this article about a man with a rare disease. Although this disease isn't POTS or a dysautonomia, I can still relate to it. It's about just how crazy it is to live with a rare disease and how frustrating it is that no one is holding races for your cure or telethons for research on your ailment. Here it is:

Falling Into a Medical Abyss

Living with a rare disease is a little like being an orphan. But one doctor has helped me find a home.

NEWSWEEK

Updated: 2:28 PM ET Jan 12, 2008

Some days I wish I had cancer. I'm even tempted to tell casual acquaintances that I have cancer, because when I say "severe aplastic anemia" they look at me blankly, or they reply that their aunt Sheila has anemia or, worse, they say, "Thank God you don't have cancer." That's what the hematologist said after reviewing my bone-marrow biopsy: "The good news is, you don't have leukemia."

I run my uncle's internal-medicine practice, so I see cancer patients and survivors all the time. There isn't much that shocks or frightens anymore in this exhibitionist age, but there's one bridge that everyone still trembles before: cancer.

Yet during my first trip to the oncology ward—oncology because there are no wards for aplastic anemia—four successive roommates, all leukemia patients, returned to their lives after receiving treatment while I stayed and reflected on mine.

Aplastic anemia is a noncontagious disease in which, for unknown reasons, the body's immune system destroys newly formed blood cells in the bone marrow, causing life-threatening anemia and high risk of infection and hemorrhage. When you have a rare disease like mine, you don't fall through the cracks in the system—you fall through a gaping abyss. There is no money for what you have, no telethons, no support groups, no ribbons of camaraderie. Because there is no profit in developing and testing drugs for rare diseases, they've been lumped together as "orphan" maladies, much as real orphans are crowded together in one place to be more efficiently cared for. And the metaphor of being an orphan feels all too real, as if you're abandoned to dark corridors while mansions are constructed to treat diabetes and AIDS and Alzheimer's. When you're an orphan you envy people with families, even such horrific families as cancer.

But there's one glowing advantage to having a rare disease that perhaps redeems all the rest. You never have to wait for an appointment. There may be only a handful of specialists in the entire country familiar with your disease, and you may have to endure hardships to reach them, but they'll see you right away, and they won't have to look at your chart to remember your name.

After I was diagnosed last April, Dr. Jaroslaw Maciejewski, a Polish-born researcher at the Cleveland Clinic, offered me an appointment in three days, and even then apologized for not being available sooner. My parents drove me two and a half hours to the steel-and-glass structure on the Cleveland Clinic campus called the Taussig Cancer Center, because there are no buildings for aplastic anemia. As a child I had reveled in my nonconformity, but now, at 46, I wanted to meet people just like me. Instead I saw two floors of pale women in headscarves, and wheezing men with canes or walkers. Yet many of these beleaguered patients were in remission, and all of them, I realized, despite their obvious suffering and my deceptively normal appearance, might outlive me.

Patients are often tossed from doctor to doctor and given little time. I got two doctors. First a fellow came to take my history and examine me. Not a student or resident but a hematologist-in-training rotating through this specialty clinic and serving as a kind of Watson to Maciejewski's Holmes. That was my first impression of the idiosyncratic doctor as he burst into the room, shook my hand and leaned against the sink, his hands empty, his hair tousled, his blue eyes piercing yet not unkind, and began, as though we had long been friends, "So, Mark, tell me …"

He spent more than an hour with me, patiently explaining my options, the history of the disease, the current state of research. Thirty years ago the severe form was always fatal, but now it can be pushed into remission or even cured by a bone-marrow transplant or less risky immunosuppressant treatments. When my mom let slip that I was a writer, the doctor's eyes lit up and he implored me to write a story about scientists, a thriller, filled with intrigue. Not the sort of tale to give a new patient confidence, but that was the best thing of all, not to be treated as a patient.

So wear your ribbons and watch your telethons, but know that your cures might be born in an orphanage like Maciejewski's. And even if they aren't, these doctors who treat rarities deserve high praise for their devotion, whether they save a hundred million lives, or just one.

Schreiber lives in Columbus, Ohio.

Atenolol Day 2

2008-01-21T13:48:00.000-05:00

I started Atenolol yesterday. So far I haven't noticed anything negative (although I was feeling strange last night, but that was unrelated). In fact, today I was able to scale some serious stairs in some serious cold with no ill effects. I'll take that as a positive. I think I'll need a few more days to really formulate whether or not this is a step in the right direction.

Feeling Good These Days

2008-01-18T18:16:00.000-05:00

I've really been feeling great lately. I'm able to concentrate so much better and I have more energy. I haven't had the overpowering urge to nap in the middle of the day like I used to. I credit this to two things. 1) getting off of the Florinef and 2) beginning to go exercises. I haven't been going to the gym, but whenever I get the chance I've been doing some leg lifts and arm circles and the like and it's really helped alleviate the leg pooling. The great thing about these exercises is that you can really do them anywhere, especially the leg lifts. AND you can do them sitting down, great for any POTS patient.

Withdrawal Day 4

2008-01-15T21:43:00.000-05:00

Today I just had a headache on the withdrawal front. I also may have dropped a couple additional pounds. It's hard to tell though.

The big event today was the worst abdominal pain EVER. I had a salad with lettuce, bell peppers, banana peppers, black olives, feta cheese and ranch dressing. I've had similar salads before with little to no problem. Today I was cramped up in SEVERE pain for hours. I was in class when all this was happening. After a trip to the bathroom it resolved itself more or less but was not an experience I'd like to relive. I've had some issues with raw bell peppers before but NEVER like that.

I think maybe I'm better able to concentrate off the Florinef. I went to the library today and read semi-boring economics literature for an hour and a half without breaking at all. This is not a normal feat for me. What sucks is that I was on Flornief for almost 5 years... I have no idea how I worked back then. All I know is that these days I seem to be concentrating better. Yay!

Withdrawal Day 3 and Possible Allergic Reaction

2008-01-15T00:17:00.000-05:00

Today's withdrawal symptoms were pretty mild. My weight loss seems to have settled at around 6 pounds since Friday. I've been pretty clear headed and not too bad off on the POTS symptoms front.

One of my friends came into class today with an absolutely horrid cold. I strongly feel that people with raging colds should do us all a favor and stay home. This semester, as much as I have going on, I can't afford to get sick(er). With this in mind I went to the drugstore to buy some Airborne tablets, which I've never tried.

First of all, it was about the most intense crazy taste I've ever had of anything. Once that subsided I settled in my room. Going to the bathroom a few minutes later I noticed some redness on my face around my mouth. In addition, there was some mild swelling of my lips and maybe a bit of my tongue. Also whenever I stood up there was instant tachycardia. I didn't go to get this checked out because it didn't get worse, just got kind of weird. I asked my roommates if they noticed anything and they agreed that there was some redness and mild swelling. Even now the redness is still there to a lesser extent and I look like I've just put on a bunch of lipstick (my lips in the winter are normally pretty pale). To me, it's not worth going to the ER in the middle of the night in the snow, so I'm gonna sleep on it. I'm guessing this is a mild allergic reaction to the Airborne... unless I've suddenly developed an allergy to arena nachos that takes effect an hour later.

EDIT: So I just looked at the container of Airborne and apparently I was supposed to drop the tablet in water and then drink it instead of eating it whole. Wow. That might explain all this. I really need to start reading labels more often. Today I opened one of my roommate's packages thinking it was mine. Maybe withdrawal from Flornief is making me clearheaded but stupid? Sometimes I wonder how I made to being a Junior in college with a pretty solid GPA.

Withdrawal Day 2

2008-01-13T23:56:00.000-05:00

Todays withdrawal symptoms (at least, I think they're withdrawal) have been a headache and some feverlike activity. But the headache wasn't anything that some Ibuprofen couldn't knock out so I'm fine now. I managed to get my laundry done today (hauling it via rolling suitcase two blocks to the laundromat... not the ideal situation but it works).

I basically stopped taking my birth control as well. I ran out of it the other week and although I have a fresh supply I think I'm going to give it a rest for a while. I've been on it for about a year and half and I haven't heard good things about being on birth control long term. Since I have no reason to be on it right now, might as well give it a rest. Both birth control and Florinef are notorious for weight gain. Since I've stopped taking them both I've lost about 5 pounds.

I've begun doing a bit of exercise here and there but what I've been doing I KNOW can't be responsible for a 5 pound weight loss in a few days.

I guess I'll enjoy this new lightness while I have it since Atenolol has weight gain as a side effect.

Random Anecdote

2008-01-12T17:03:00.001-05:00

I go to the University of Pittsburgh Medical Center for my medical stuffs. This center frequently gets ranked among the best hospitals in the country with a wide array of specialties. They can treat pretty much anything there.

When I was at the doc's office yesterday, he attempted to enter "postural orthostatic tachycardia syndrome" into the diagnosis field in the computer. It came back with an error message, saying that it was an invalid entry.

For a hospital as big and supposedly as great as UPMC to not recognize POTS just shows how rare this thing is. I don't know the exact figures of how many people have POTS, but I read somewhere that it was 500,000 in the US. For a population of 300 million people, that equals 0.17% of the population that has this disorder. Pretty freakin' rare.

Also, I'm having my first day off the Florinef today. So far all is well. I was a little foggy and feverish at the beginning of the basketball game (I'm in the pep band) but that has subsided.

Atenolol

2008-01-11T10:00:00.001-05:00

So I went into the doc's office today to discuss my tilt table results. I got a copy of the results (hell yeah! Concrete proof!) and under the section where it summarizes this called "Impression" it says:

"This is an abnormal study. This is borderline evidence for postural orthostatic tachycardia syndrome. This was no orthostatic hypotension. This is borderline post ganglionic sympathetic sudomotor dysfunction as well.

These findings may be seen in patients with POTS of relatively mild severity."

Ok. I have mild POTS. I knew that. People with severe POTS generally speaking can barely leave their house. I still go to school, work, and have an active life, just sometimes it's a bitch to do so. BTW- that postgangilionic thing basically means my feet don't sweat a lot... apparently this is also a POTS trait.

So what's the solution? Atenolol.

This drug is a beta blocker that blocks too much adrenaline. It also lowers blood pressure... today my doc said that for a woman my age my blood pressure was on the high side today. I've never been told that.

I'm also going off the Florinef. Sorry florinef, you and I had a good run, but it's time for me to move on. Going off the Florinef could decrease my blood pressure (it's supposed to raise it). I could also lose some weight in this process because Florinef makes you retain water. The plan is to stop with the Florinef for a week to give my body and chance to cool off and then start with the Atenolol.

I could also be going off the Paxil CR because he doesn't agree with me being on it indefinitely and neither do I but we both agree that this isn't the time to try and withdraw.

So we shall see how this medical saga plays out.

Stomach Blah

2008-01-09T22:15:00.000-05:00

After deliberation, I've decided to bring up my GI issues with my doc when I go in on Friday. I haven't eaten in 5 hours and I'm still bloated and gassy and having good ol' dulled stomach pain. Of course, this could also be because today was the first day of that time of the month, which generally makes this worse.

Today I had a random flare up while walking to class. After work I went to Subway for some dinner and then walked to class. The walk from the Subway I was at to my class was around 9 or 10 blocks (note: these are Oakland/Pittsburgh blocks which can be small... it was about a half a mile). This isn't an unusual amount of walking for me. On my way there my heart was beating ridiculously fast and I had to sit down. Taking my pulse it was about 180 or so. I got my cane out to finish the walk to class.

2008-01-09T12:24:00.000-05:00

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.

Adrenaline from Hell

2008-01-08T15:21:00.000-05:00

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.

Don't Eat the Spoiled Yogurt

2008-01-07T00:06:00.001-05:00

So you know how I said yogurt helps? Well, only if its not spoiled. Learned that one the hard way today.

I'm back in Pittsburgh after my three week sojourn in North Carolina. Classes start tomorrow. I have my doctor's appointment on the 11th. Whee.

POTS and IBS

2008-01-05T20:43:00.000-05:00

As some of you may know, or not know, one of the things that tends to go hand in hand with POTS is IBS, or Irritable Bowel Syndrome, a disorder of the gastrointestial tract that causes abdominal pain, cramping, bloating, constipation and diarrhea. It's annoying, but not necessarily life threatening. It's usually managed by diet. Both POTS and IBS are related to the autonomic nervous system, so it makes sense that they tend to go hand in hand. I've never been formally diagnosed with IBS, but I wouldn't be surprised if I have it considering that I fit most of the diagnosis criteria. I've never gone through the trouble of getting it diagnosed because there aren't really many medicines out there to treat it and to me the abdominal discomfort and bloating and constipation have become background noise to my life. I've learned to ignore it. Although this is helpful with coping, it's bad as well because I tend to forget what foods will set symptoms off. Even now, because I always push it to the back of my mind, I'm having difficulty remembering what foods set me off. So in that spirit, if I encounter a food that sets me off, I'm going to write it down here, starting with today's experiences and what I remember

Pretzels
Red Onions
Caffeine
Alcohol (the morning after)

I've also noticed that yogurt really helps, so I've been incorporating that into my diet.

Job I Can't have: Professional Mover

2008-01-02T21:16:00.000-05:00

Lifting heavy objects plus POTS equals No Good.

North Carolina is in pretty severe drought right now. My family uses a well. If there isn't enough water, the well either dries up or the water filter gets clogged with silt and gunk, causing us to have no water pressure. The gunk is actually ironically enough from recent rainfall we've had, stirring up the silt and whatnot.

However, I didn't know the water was going to crap out on me until halfway through a washing machine cycle. After a couple of hours we realized the water wasn't going to come back so I had to load sopping wet, smelly clothes into a couple of trashbags and haul them to my dad's house, where I proceeded to finish the laundry.

I wasn't having any symptoms today until I had to lift those ridiculously heavy bags and haul them out to the truck. Then my heart started racing and I got kind of dizzy. I shook it off and continued on, but it left me thinking that I should really refrain from lifting heavy objects.

Happy New Year!

2008-01-01T19:45:00.000-05:00

Happy 2008 everyone!

I've made a new years resolution that will probably help a lot with POTS: don't drink alcohol as much.

I don't view myself as having a problem with it and usually I'm quite in control, but last night I overdid it and spent today paying for it. I figured it would be appropriate then to write about POTS and alcohol.

A couple of drinks now and again really doesn't have a negative effect on POTS as far as I can tell. If anything, it suppresses my adrenaline so I don't feel so tachycardic and tightly wound. Not that I'm recommending a couple of beers before work as a legitimate treatment, I'm just writing what I've noticed.

However, getting sick in any form makes my POTS symptoms ten times worse, and really bad hangovers are no exception. Throwing up makes me lose fluids that I badly need. Standing up is a beast. On top of that, I think my adrenaline levels are through the roof. I've been tightly wound with pretty bad tremors all day (I normally have a mild tremor).

The conclusion: alcohol in moderation really isn't that bad for this particular POTS patient. Overdo it and in addition to the traditional morning after, you also get to combat a lovely flare.

You've gotta laugh

2007-12-29T00:19:00.000-05:00

Sometimes having POTS and using certain adaptive tools to help me through the day (cane, compression tights, etc.) gets me certain stares or outright questions/comments from random folks.

This especially happens when I use my cane. I used it far more often in the summer than I do now, but I still use it. I get funny looks because I'm 20. You don't very often see someone my age on a cane. I get some "WTF?" looks on the street, but not too many since Pittsburgh is a mecca for medical freaks like me (The University of Pittsburgh Medical System can treat just about anything that ails you). The most interesting ones I get are from older folks on the bus. It almost seems as though they're thinking to themselves "Eh, it could be worse." At least, that's what I imagine they're thinking.

But a lot of what I get is people who knew me before I started using the cane and I can't say I really blame them. Usually they think something horrific has happened to me. No no. You know that thing I have? No, not that one, the other thing? Yeah, it got worse. I'm usually nice enough to explain what's up to those with good intentions, but sometimes I neither have the time nor the energy to explain. That's when I have to reach into the snappy comeback file.

The best one I've been able to come up with so far is "I'm a pimp." It makes them laugh and I can make my getaway before they say "No, seriously..."

Then there's the compression tights. Those are flesh toned and actually pretty discrete. Even when I'm in shorts or a skirt they aren't the noticeable. The only way you can really tell is if you're either a) within a foot of my leg or b) witnessing me pull at the tights. That's when I get, "What's up with the tights?" That's when I say, "I'm a superhero. Shhhh."

Yeah, those aren't the best comebacks in the world. But you work with what you've got.

A POTS Patient's Holiday Wishlist

2007-12-26T01:38:00.000-05:00

Well, I hope everyone out there had a good time today. I know I did. Three houses opening presents, a meal to die for and I'm spent. I got a lot of neat stuff, but there are medical things I want/need that I was too embarrassed to ask for. I don't know why. However, I got a sizable money loot with which I will hopefully procure these items. So here are the few things on my POTS patient wish list.

This adorable cane
Isn't this cane a beauty? I've been eying it since I bought my first cane in August. It's a but pricey, but it folds up and is oh so gorgeous.

Ice friendly Cane Tip
I live in Pittsburgh. It gets icy and sometimes not that easy to navigate.

Compression Tights
You can NEVER have too many of these... especially if you're as lazy as I am about doing laundry. I use compression level 30-40, which is what's recommended for POTS. I tried 20-30 and it helped a little, but not as much as I was hoping for. 30-40 is a beast to get on in the mornings (I didn't even wear them today) but quite worth it. They're also pricier and harder to find than the other varieties. I recommend this company for compression tights. They're less expensive than the leading brands, good selection and they're pretty good quality.

Med Tee's POTS Tee
When I found this site the other day I doubted they'd have anything POTS or dysautonomia related, but I was pleasantly surprised when I found this shirt. A POTS shirt! How awesome is that? It's under heart disease instead of neurological, but oh well.

Survey Meme

2007-12-24T21:18:00.000-05:00

I got tagged by Lindsay over at Living With Fibromyalgia to do this survey (Hurray, people actually read this!)

For readers new to the meme challenge, here are the rules:

1-Link to your tagger and post these rules on your blog
2-Share 7 facts about yourself on your blog, some random, some weird
3-Tag 6 people at the end of your post by leaving their names as well as links to their blogs
4- Let them know they are TAGGED by leaving a comment on their blog

1. I've played clarinet and guitar since I was 11.
2. I'm a pagan.
3. I'm a vegetarian.
4. Harper is actually my middle name. Emily is my first. There are too many Emilys, so I'm starting to go by Harper.
5. I have a tattoo of a kokopelli on my hip and a ghecko on my back.
6. I plan on moving to the southwest eventually.
7. I've dyed my hair with funny colors more time that I can count (It's currently black on the bottom and blonde up top).

In other news, I've been pretty clear on the symptom front. Except for a flare yesterday. I was at church having choir practice after the service (Yes, I just said I'm pagan. I go because the church people are nice and my mom needed another alto). Episcopalian church services are the absolute worst for a POTS patient. Stand up, sing, sit down, kneel, lather, rinse, repeat. It's gotten to the point where I don't do most of the standing anymore. Everyone there's pretty understanding though, so I'm not looked at scornfully when I sit when the bulliten says stand. Anyhow, after the service the church was greened up for Christmas eve and the choir looked over the music we're singing for our performance before the service. This involved a lot of idle standing, also not a friend of the POTS patient. I had to sit down to sing the last number.

I hope everyone has a good holiday. I just got back from a Christmas eve party with my family. Tomorrow I will be opening presents at my mom's, dad's, and then at the bed and breakfast where my extended family is staying. My dad remarried in September and I have a stepbrother and stepsister. This will be their first Christmas with my family. Hopefully we won't scar them too badly.

Medical Tests

2007-12-24T00:13:00.000-05:00

I've decided I'd like to document my medical tests. I've had several... some for POTS, some not for POTS. For the purpose of this, I'll only talk about the POTS related tests.

Blood Work
Blood work upon blood work upon blood work. The first time I had blood work (that I remember) I was 15. Three or so vials of blood were taken. I became so pale, clammy, nauseous, and light headed that I was nearly admitted to the emergency room. Since then I haven't had NEAR that reaction. I've had blood taken from me more times than I can count

Hypoglycemia Test
I had this test when I was 17 to determine whether or not I had developed hypoglycemia. You fast the morning of the test and they take some blood when you first get there. Then you drink the most disgustingly sweet thing you can imagine and wait. As I recall during this test I had no symptoms of hypoglycemia, but the test came back positive for it anyhow. Hypoglycemia is when your body produces too much insulin. If you eat a lot of sugar too much insulin is released, thus plummeting your sugar levels, making you cranky and headachy and foggy.

Autonomic Function Test- Take 1
I had this test the first time around when I was 15. I don't remember very much except for the fact that it made me feel like crap and become quite nauseous. In this incarnation of the test I was strapped to a table lying down for 10 minutes and then tilted up for 10 minutes at about a 70 degree angle.

Holter Heart Monitor
This test involved me being hooked up to a portable EKG machine for 24 hours. I had this test in September of this year. It was actually quite easy to conceal: the wires were all under my shirt and the machine was the size of a pager. I had to write down in a little diary when I'd have symptoms and what they were. I also had to make note of when/if I was exercising, drinking caffeine or alcohol, or engaging in sexual activity. Seriously, who does that? I was able to go to class and do what I normally do, except I didn't go to the pep rally that night with the marching band (which I'm an active member of) because remembering pep rallies of years past I knew it was going to be close quarters in the dark. We do horn swings in the band and I didn't want some freshman who hadn't gotten the swing of things yet (yeah, pun intended) to ruin a very expensive machine. My band director was quite understanding. After 24 hours of having the monitor on, I went into the bathroom during a class break and yanked the electrodes off. This left visible marks that didn't go away for a week that I referred to as my alien hickeys. The test showed that at one point my heart was beating so fast that they thought I was exercising, but I wasn't. I was sitting at my desk at my nonphysically tasking office job.

Autonomic Function Test- Take 2
This test was the most recent (December 6) and by far the most interesting. I had to withdraw from my antidepressant (which SUCKED) and my steroid (not much fun either) and abandon my trusty compression tights for that day. Oh, did I mention this was the week before finals? Instead of being just the tilt table that I had when I was 15, it had three more components.

Sweaty
This part was a sweat collection test. How do they make someone sweat who is strapped to a table? By putting 4 receptors and electrodes on select places on your body (forearm, upper calf, lower calf, foot), injecting them with acetylcholine (a neurotransmitter that stimulates, among other things, sweat) and adding an electric current. The result? A mild burning no more uncomfortable that the "oh my god these pants are chafing me" pain. During this test I looked like I was in Frankenstein's Laboratory.

Yoga Breathing
This test involved looking at ascending and descending lights and breathing in as the lights went up and out as the lights went down. Not too bad.

Pressure Breathing
This part involved breathing into a device that kind of mimicked the sensation of attempting to blow up a skinny balloon with your mouth. During this test my face got really red and my heart rate shot WAY up.

Tilt-Table
For this part the doctor in charge of the lab I was in was brought in the room (until now I was dealing with a tech, who was pretty cool). I liked this doc, he really seemed to know what he was doing, which I haven't found a lot of. He also had an appropriate sense of humor, which I really enjoyed. They let me lay there for a few minutes to get a baseline heart and blood pressure reading. I was hooked to electrodes on my back as well as a cuff on my arm which took a reading every 5 minutes, as well as a small cuff on my wrist which did automatic readings and periodically needed to be adjusted. Once the baseline reading had been gathered (HR- 80 bpm, BP- 122/80) I was tilted. I immediately became lightheaded, hot, and slightly nauseous. It was not fun. In order to procure a POTS diagnosis your HR has to go up 30 bpm during the tilt, which lasts for 10 minutes. My heart would jump around from 90 one second to 105 the next. At times it would hit the mandatory 110. At this point the doc called it "Borderline POTS." My incarnation of POTS is not NEAR as serious as some other cases (i.e., I can still go to school, work, and even stand up. Some POTS patients are confined to wheelchairs), so this didn't surprise me. However, with a minute left in the test my HR shot up to 120 and 125. At this point the doc and tech began yelling "Alright, sell!" which I thought was pretty funny. Once I was taken down the doc confirmed the POTS and stated it was mild. However, mild POTS is like a mild hurricane: it could be worse, but it's still going to do some damage.

I go back to the general internal medicine guy I've been seeing in January. The lab doc suggested a low dose beta blocker. What I've read about them seems a bit daunting, but everything you read on the internet about drug therapies is scary. If I do start a beta blocker, I will probably withdraw from my Paxil just to stay on the safe side (I've read about some interactions with antidepressants). I guess we'll find out on January 11.

A Dog is a (Wo)man's Best Friend

2007-12-23T02:02:00.000-05:00

One thing I've noticed that really helps me with my symptom management is being around furry animals. In Pittsburgh my landlord doesn't allow pets, so obviously I don't have any. I try to make it down to the animal shelter to walk dogs and play with cats every once in a while. When I go, I notice afterwards it feels as though my stress and symptoms have just melted away. However, part of the struggle is getting to the shelter in the first place. It's a 10 minute bus ride from my place, but the issue is motivating myself to get there, even though I know it'll make it feel better. Sometimes I'm all about the instant gratification and take a nap instead.

Since I've been home for break, I've been surrounded most of my waking hours by wonderful dogs and cats. Some are the sweetest, cuddliest, stupidest animals to live and some are more dignified, but they're all wonderful. The larger of the two dachshunds at my dad's house (Benji) has to constantly be in contact with you. He's a snuggle bug. The smaller dachshund (Kudzu... yes, we named the dog after a forest killing plant) has the biggest eyes that express all the love in the world. The golden retriever (Jake) would have a voice like Patrick Stewart if he were human. He's the kindest, gentlest, noblest dog I've ever met. The cross-eyed tabby cat (Frisky) is a great lap cat... however, he's quite loud and vocal. At my mom's house, the German Shepherd-Chow mix (Scout) makes happy noises when she's glad to see you and demands belly rubs. The blue eyed/brown eyed Australian Shepherd mix (Strudel) is a ball of energy who herds the cars in and out of the driveway and is probably the most intelligent dog I've ever met. Our sweet, stupid, we're-not-quite-sure-he-is dog (Griblet) has been spending a lot of time at the neighbor's house lately but we've been able to get him to come inside for a while. He's a big cuddler. There are two old, cranky cats here as well (Fish and Ting) who belong to my stepdad... they're special in their own way.

I've noticed such a difference from volunteering at the animal shelter and being at home with my babies that I've decided that next year I want to move into a pet friendly apartment. Hopefully this will help in calming me down.

Shopping? Ugh.

2007-12-20T22:57:00.000-05:00

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.

Meds

2007-12-18T21:34:00.000-05:00

And so now for my second installment of my POTS blog, medicines. Here's my current cocktail:

Paxil CR- 25 mg (anxiety)
Glyset- 25 mg (hypoglycemia... goes along with the POTS)
Florinef 0.1 mg (POTS... it's an oral steroid that ups my sodium count, thus upping my blood volume)
Kariva- baby-go-away pills
OTC allergy meds
Multivitamins

I've considered going off the Paxil, however withdrawal is such a beast that I just don't have the time nor the energy or it. I've run out a couple of times and it was NOT fun. I could withdraw over vacations but spending a vacation feeling like little electric shocks are going through my body? No thanks.

After some recent medical testing, I might be started on a low dose beta-blocker. This suppresses adrenaline... an abundance of adrenaline can cause POTS-y symptoms. From what I've read, this can either be a Godsend or a Devilsend for POTS patients... it really depends on the root cause.

First Post in a New Blog

2007-12-18T02:39:00.001-05:00

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