Dysautonomia International Conference 2014: Day 0

dragged myself out of bed this morning at around 8:40, ten minutes after my alarm had so rudely forced me awake. My mom opened the door to my bedroom asking me: “what are you doing? We’re leaving in 20 minutes,” and standing in the doorway until I sat up and oriented myself to the feeling of being upright. I looked at the clock. She was right; we were going to be leaving in 20 minutes.

Around five hours after grabbing bagels and hitting the road, we arrived here in Herndon, Virginia for the Dysautonomia International Conference!

We walked into the hotel and immediately saw a girl who couldn’t have been more than twelve years old standing with her mother in line to check into their room. She was wearing a band t-shirt, denim shorts, Keds, and…. knee-high compression stockings.

Without missing a beat, my mom turned to me and whispered, “we found your people!” through fits of laughter.

She was right. I found my people. Never in my four years combatting this illness have I seen so many potsies in one place. Or even seen this many potsies at all!

 

Not much else to report from day 0 of the conference (day 1 is tomorrow). We checked into the conference, got awesome name tags, folders and goodie bags fit for anyone with dysautonomia (guess what was in them!!), and traded stories with some super awesome people. I am super stoked for the rest of the weekend. I think I’m really gonna like it here.

As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.

Please message me!- potsienb@gmail.com

To all my fellow Potsies, good luck out there!

My newest ambition

I want to run a half-marathon. I know it sounds crazy, but why not? I’ve come this far since last spring, why not go further? I’ve got about 6 weeks to train for the Brooklyn Holiday Half Marathon, which isn’t much time, but it’s more than this guy did:

I saw this video today as I was looking for training tips online. He is running a half-marathon without training at all and he is so positive throughout the whole race, as he gives updates to his viewers at every mile. It’s a really entertaining video, especially because of his commentary on how he is feeling and how his buddy feels throughout. Definitely worth watching.

Right now, I’m at a point where I truly believe I can do anything. Sure, my POTS still acts up a bit sometimes (a lot, other times), but if I can get my butt out of bed and work hard enough to join a sports team, I can certainly get my butt off the couch during my down time and train for this!

Speaking of my sports team, I want to brag a bit. I recently competed at the Head of the Fish Regatta in Saratoga Springs, NY, where my boat came in Third Place to UMass, a D1 school (my school is D3). We came in Third with a pretty good time, after also having another boat crash into mine, sending us veering off course, through the white-capping waves of the river. We made up the lost time, and then some, as we proceeded to pass two boats in our race lineup. It was awesome!! Here’s a picture of my boat:

Note the super-cute, mid-race, ‘are we done yet?’ faces. I’m the angry-looking one in the back….

Anywho- that was my revelation and my bragging for the day. I’ll continue to post with my progress as soon as I make some progress! See you all soon!

As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.

Please message me!- potsienb@gmail.com

To all my fellow Potsies, good luck out there!

Alternative Medicine?

Okay so it has been quite a while since I’ve written, but in the time that has passed, I’ve been quite busy. Summer ended and now I’m back at college, living what seems like a whole new life this semester.

Last year, before my POTS took me out of commission, I was involved in my school’s Debate Team, Residence Hall Association (RHA), EMS, school Newspaper, and more. After having to quit everything to focus on my health and feeling better, I wasn’t sure what I was going to do when going back to school. Let’s be real- I wasn’t sure if I was going to be able to do anything but my schoolwork when going back, and just to clarify- no matter how badly I felt last Spring and this Summer, not going back to school this Fall was just not an option for me.

As per a recommendation from my cardiologist to continue to exercise a ridiculous amount, I joined the women’s Crew team, as my one extra-curricular this year. I’ve been rowing now since the beginning of September and I’m loving every minute of it, both from a POTS perspective, and just because it’s fun. POTS-wise, I feel better than I have in a long time, and I think that a lot of the reason I do is because I have to work out so much. I have a 2-hour practice every day, and most days, I also go to the gym in the morning for around an hour, just to start my day and feel okay later on. Because of my contract with the team, I am also required to try to get 9.5 hours of sleep, again reinforcing what my cardiologist has been telling me to do all this time.

On top of the rigorous workout schedule, I’ve been meditating every day, which I know sounds like a bunch of hippie hocus-pocus, but hear me out. I didn’t buy into it at first either (as you’ll recall, in one of my previous posts that I was trying out zen buddhism and seeing how it goes). The more I started “meditating,” the more I found that it works for me. What I do isn’t really spiritual as much as it is mental- I am still not convinced that my soul is connected to the Earth or whatever, but meditating, for me, is a good way to refocus during the day and get back on track. It’s a time I can set aside to self-examine and prioritize what I need to do, etc. It’s like mental journaling in a way.

Just this past weekend, I went back to my cardiologist while I was on Fall break. She said “You look great, why are you here?” and told me that since she last saw me in August, I look like a whole new person. I have more color in my face, my blood pressure readings are within a normal range again, and my symptoms when standing aren’t as bad as they used to be. I still get very POTSie when I go from lying down to standing, but now my good days outnumber the bad ones.

The way I look at it is that what I’ve been doing since coming back to school is a form of alternative medicine in a way. I’ve still been doing all I can with Western- medicine, in that I’ve still been keeping up with all my medications, but I’m still at a plateau. Medication can only do so much before it can’t work its magic any more than it already has. This is where the mentality aspect comes into play. Exercise releases endorphins as well as a whole bunch of other happy hormones in the brain, leading to a lifted mood and healing stuff (yes, that’s the official medical term, in case you’re wondering). Meditation deals with factors unrelated to any chemical imbalance, just pure emotional and psychological training. Both of these methods combined, is my version of alternative medicine and it’s going well so far. By no means is it perfect, and I’m still not back to 100%, but I’m at least closer to getting there than I thought I could be.

As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.

Please message me!- potsienb@gmail.com

To all my fellow Potsies, good luck out there!

The downfall of this weekend

This weekend was a lot of fun but I feel like I need to recover from it. Today isn’t a bad day, but it certainly isn’t as good as I have been feeling lately.

This weekend started off great and continued to be awesome the whole 3 days. I left work early on Friday to go home for my Grandfather’s surprise 75th birthday party (HAPPY BIRTHDAY AGAIN, GRANDFATHER). My family came into town for the occasion and we had a great time eating lobster and cake at my house. After all the celebration, my best friend and my boyfriend came over to say goodbye to my roommate who has been staying with me this summer to work in NYC. They stayed until around midnight (way too late for my body to handle, I might add) before going home so we all could sleep.

I got around 9 hours of sleep despite going to bed so late, and got up to get my hair cut on Saturday morning before going to tailgate for 5 hours at a Kenney Chesney concert with the members of my family that had come into town for my Grandfather’s birthday. We set up camp and sat in the parking lot of MetLife Stadium (GO GIANTS) barbecuing and people-watching for a long time before heading into the concert. Even in the parking lot, I was feeling a little bit “iffy.” I was keeping up with fluids, eating salty food, and distracting myself from my symptoms by having a good time with family. Unfortunately, I’m a big fan of the sun. I think that’s where my downfall started. I sit in an office all day, every day, all week, so it was great to be able to sit outside in the sun. The downfall continued as we went into the concert. You know that bass drum that you can feel in your core at concerts and clubs? I guess that affects me for some reason. The more it was in a song, the worse I’d feel during that part of the concert because I could feel it in my chest. Weird, right? I thought so…We got home at around 11, which isn’t too late by normal- people standards, but by mine, it’s another late night.

Yesterday- Sunday- I woke up, went to brunch to say goodbye to my family, then went to another brunch with a few friends from high school. I wanted to have a super relaxing day, especially after the excitement of the previous night, so I went to the pool for the rest of the day. My mom and my sister went, too, and my boyfriend met us there. Again, I was sitting in the sun all day. I’m now quite tan (for me, that is. I don’t actually get tan at all), but it’s still dehydrating to sit in the sun. I later went to a movie and out for ice cream with friends, getting me home around 11:00- another late night, made worse by the fact that I had to get up at 5:45 to go to the gym before work this morning.

This would be a typical weekend for me pre-POTS. It’s busy but not too busy, sunny, and exciting. And I’m paying for it a bit today. I’m certainly not feeling as bad as I could be, but still- it’s frustrating to have to pay for having a good time like this. That being said, I still got up this morning at 5:45, biked 2.5 miles and ran 2.5 miles and am now sitting at my office in NYC. Tonight I’ll get to bed as early as humanly possible and hopefully get up feeling a bit better tomorrow so that the 2.5 mile run is a little easier. I don’t normally have weekends like this since the POTS started acting up because I don’t want to push it too far, but where would I be if I didn’t push limits, right?

This video is about the “Spoon Theory,” which is a good way of describing an illness like this. The woman in the video is speaking about her experience with Lupus, but it also applies well to POTS. Mine isn’t nearly this bad anymore, but watch this video and you’ll understand a little better what I mean when I say that the party on Friday, my friends coming over, the tailgating, the concert, the brunches, the pool, the movie, the ice cream, and the late nights have taken up most of my spoons this weekend. Fortunately, I can get my spoons back. I’m getting them back by biking and running this morning and I’ll get more by sleeping early tonight, but I really need to make sure I’m not so frivalous with my spoons. I can’t afford to give away so many in one weekend. It takes a lot of work to get them all back. I’m not going to have all my spoons back anytime soon, but I’ll take all I can get.

As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.

Please message me!- potsienb@gmail.com

To all my fellow Potsies, good luck out there!

What am I doing?

Okay so I wrote a bit about what POTS is and my story of living with it. Now I’m going to write a bit about HOW I live with it- what works/ what doesn’t work for me. (Keep in mind, fellow Potsies, that this is just my personal successes with treatment and what works/doesn’t work for me may not be the same for everyone.)

And so we go.

1) FLUIDS FLUIDS FLUIDS

There is NOTHING more important to someone with POTS than peeing non-stop. Seriously. This means you’re doing a good job on your fluid intake. On a good day- one where my symptoms aren’t too too bad- I still drink over 120 ounces of non-water. Anything works, but preferably drinks high in sodium or electrolyte content- nuun tablets, low-calorie gatorade, and powerade zero are my typical go-to drinks. It also helps to have a 32-oz Nalgene water bottle to refill on my desk at work (go green and up the intake!).

2) EXERCISE

This has probably been the hardest part of having POTS so far. I’m supposed to exercise about an hour every day- especially on bad days where I want to do nothing but lie in bed and sleep until this all goes away. I’ve been told to build muscle tone (so my body can send blood back to my core more easily) and work up to being able to do cardio.

Keep going. Back in March and April, I was in bed. My cardiologist forced me to go to the gym twice a day, knowing how bad I felt, and needless to say- I didn’t like it one bit! (I still don’t, some days.) I was scared of fainting, but I still did it because there was hope that I’d feel better. I could hardly stay on a reclined bike for five minutes without my symptoms getting so bad I had to stop during the first few weeks. Now, I go to the gym every morning before work and this morning I biked 2.5 miles (on a regular bike yay!) and then ran 2 miles on the treadmill. That’s not to say it’s easy, because I still get light-headed after a short while, but if you push through it, it does get a little better eventually.

My advice- Keep going. Back in March and April, I was in bed. My cardiologist forced me to go to the gym twice a day, knowing how bad I felt, and needless to say- I didn’t like it one bit! (I still don’t, some days.) I was scared of fainting, but I still did it because there was hope that I’d feel better. I could hardly stay on a reclined bike for five minutes without my symptoms getting so bad I had to stop during the first few weeks. Now, I go to the gym every morning before work and this morning I biked 2.5 miles (on a regular bike yay!) and then ran 2 miles on the treadmill. That’s not to say it’s easy, because I still get light-headed after a short while, but if you push through it, it does get a little better eventually.

3) SLEEP

Okay so I know my mom is reading this. She’ll be raising her eyebrows and giving me the look that says “Oh you’re going to talk about sleep now?? You should actually sleep as much as you’re supposed to before giving other people advice on that…” While that may be true, let’s discuss what I’m supposed to be doing, not what I am doing.

8.5 to 9 hours per night is what I’m supposed to get. This is COMPLETELY impractical for a college student, but I try….It does help a bit to get more sleep- like if I were to pull an all-nighter, I would have some MAJOR problems being upright the next morning, so good luck with that Potsies!!

 I have so many of these at home:

4) MEDS

I’m on a whole cocktail of fun. Want the list? Here it is:

Salt tablets– 8x 1000mg/day

Fludrocortosone– 2x 0.1mg/day

Midodrine– 2x 2.5mg/day

Fluoxetine– 1x 10mg/day

Metoprolol– 1x 12.5mg/day

(The name of the med is a link to more info about it. Enjoy!)

5) OTHER TREATMENTS

Compression stockings– The high intake of salt causes my ankles to swell sometimes, so these help to alleviate the swelling. (Note: raising my feet doesn’t make the swelling go down for me, I just have to drink extra fluids and wait it out when it does happen)

Problem solving– I don’t normally buy into the whole concept of therapy, but I found a dr who is more problem-solving than psychoanalyzing which has been really helpful to my efforts to get back to living more normally.

Low-histamine diet– This worked pretty well I think and made my symptoms a lot less dramatic in their fluctuation. I did it for around 2 weeks but then got lazy and ate foods on the restricted list. So sad. I really should get back to doing this diet, but I REALLY like cupcakes…. Warning: this diet will most likely make you lose weight. I lost about 12lbs in the 2 weeks I did it. It’s very healthy food, but make sure your calorie intake is where it should be for you (mine was way too low without realizing it.)

Aromatherapy– Okay so it sounds kinda crazy but I’ve tried everything I can at this point from a western medicine perspective, so why not try eastern medicine? I just recently got a smelly stick (a roll-on tube) of essential oils that supposedly help to calm and redirect thoughts. I don’t know about that so much, but the smell is really overpowering so if I feel really bad I take out my magic smelly stick and that smell is all I can focus on. It definitely redirect thoughts away from my symptoms… in a kind of weird way.

Zen Buddhism– Another crazy eastern medicine thing. I like theoretical concepts so I’ve been reading up on Zen. It seems pretty interesting in that it’s really personalized. If you want to know more about it, read this book , it’s amazing! and check out the rest of the site while you’re at it.

http://hardcorezen.info/store/hardcore-zen

I’m not sure how well Zen whatever will work, but I’ve kind of plateaued with my symptoms so I’m willing to try anything to keep moving in a good direction. I’ll give more of an update on that as I go along.

As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.

Please message me!- potsienb@gmail.com

To all my fellow Potsies, good luck out there!

What is POTS?/ My Story

Every time I try to start a journal or a diary I am always super enthusiastic and write feverishly for the first few weeks before inevitably failing. I skip a day, which turns into two days, three days, and, well, you get the point. I start a new diary every few months, with the intention of writing only for myself- my life, no pretense, so that one day I can go back and re-read it and laugh at all the stupid stuff I do and decide to shamelessly write down for posterity.

This time, I hope it’ll be different and I’ll continue writing. I want to be able to connect with other people who are going through the same things I have been experiencing with POTS. Maybe this is the way to do that. Maybe it’s not. I don’t know, but here goes nothing…….

I figure that in this first post, I should probably explain what POTS is, for anyone reading this that doesn’t have it. I’ll give you the short version because it would take forever to explain, since people can experience it in so many very different ways. (Here’s where I get technical.) POTS stands for “Postural Orthostatic Tachycardia Syndrome.” It’s a form of Dysautonomia a condition of the Autonomic Nervous System– in which patients usually experience Pre-Syncope (near-fainting) or Syncope (fainting) upon standing or sitting up from a reclined position. This happens because when they stand up, their pulse increases dramatically, a result of a malfunction of the Autonomic Nervous System that creates an imbalance that the body cannot recover from as fast as it needs to. There are medications available to help with the symptoms, but the most common form of treatment for mild POTS is salt tablets and drinking extra fluids in order to constrict blood vessels and increase blood volume and pressure.

Got all that?

Basically in my case, my blood pressure drops and my pulse spikes and I almost pass out a lot, or at least I feel like I’m going to. What’s funny (but not really funny at all) is that now, for me, it’s not postural- meaning I prettymuch feel like this all the time. Other problems can be associated with POTS, too. For example, I’ve also got Small-Fiber Neuropathy, meaning my feet cramp up every single night, and my vision is terrible- I can’t see anything, especially at night when lights are really super bright for me. It’s a super fun disorder. NOT. Despite all this, though, I’ve been told that I’m very high- functioning.

I was diagnosed with POTS three years ago, when I was 17, because I’d feel dizzy in dance class when I stood up from doing floor work. Sure, I’d get a bit dizzy and light-headed, but that was the extent of it. I’d feel totally normal if I just took some meds and drank more fluids. Things didn’t get bad until this past spring, at the end of my sophomore year of college.

Back in March, I started to have pre-syncopal episodes- I’d feel like I was going to faint for a few minutes and then it would pass. I didn’t think much of it. I knew it was my POTS acting up, so I just took more salt pills and drank more fluids and thought I’d be fine. Boy, was I wrong! After a few days of this, I told my mom about it, since it was getting worse, not better. She then contacted my cardiologist. Unfortunately, I was 300 miles away from home, so it was more difficult to get direction from her on what I should do. I’d talk to one of the nurses in her office, Lynn, every day, updating her on how I was feeling and what I had done/ eaten/ meds taken, etc. I still talk to her at least once a week.

Long story short, I got to a point in about April when I could hardly get out of bed unless I absolutely had to. The only time I’d feel okay is when I was lying down (I’m sure other Potsies can relate). I somehow managed to finish out my semester and take all my final exams before coming home for the summer, which was and is my proudest accomplishment of my college career thus far.

So far this summer, with a strict regimen of sleep, exercise, and 5 different medications, I’ve been able to intern in NYC as planned. It has been SO DIFFICULT, but I’m super stubborn and being bed-bound for much longer was NOT an option. I am still being challenged by my POTS 24/7, even after coming this far since March. Every day I feel faint. Every day I exercise before work and take a dozen pills. Every day I try to get 8.5 hours of sleep (though I’m trying to have a social life again… sorry Mom!). I’ve been through a lot of ups and downs from day to day, and because of that I can never really plan anything in advance. I’m going back to school in about 3 weeks, and I couldn’t be more excited. I wasn’t sure at the beginning of the summer if I’d be able to go back.

As of now, I’m still trying to “keep calm and carry on,” as the saying goes. Trying to get back to 100%. It’ll take a while, but I was there once, so I’m sure I can get there again.

If you can’t tell already, this blog is mostly shaping up to be a lot of my ranting. If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS from this post.

Feel free to message me- potsienb@gmail.com

To all my fellow Potsies, good luck out there!