Hello! I'm New And Here Is My Story

[Albrown23]

Hi everyone! My name is Amanda and I was diagnosed with POTS last summer. I actually thought it was a BS diagnosis, especially after the doctor said I would likely grow out of it. So, I ignored it all and passed it off as me being lazy and deconditioned. It wasn't until last month when a different doctor asked how POTS was affecting my ADL's that I thought this might actually be a real thing. So, here I am!

Here is my story....

When I was 9 years old I had my first episode of tachycardia. My mom called the doctor and I was in a few days later with a cardiologist, where he said I just had a murmur and would grow out of it. This happened a couple times, so we just figured it was something that would pass as time went on. I had no other symptoms beside the obvious lightheadedness and it passed in about 5-10 minutes. Plus, I have terrible asthma, so that was blamed as well.

Then, when I was 16 I had a surgery to my chest to repair pectus excavatum (sunken chest). It was pretty invasive and it took about two months total to recover. Four months later I has the hardware removed after it broke and shifted so it was nearly poking out of my body.

At the age of 18 I was working as a transporter in a local hospital when I had another tachycardic episode. At this point it had been happening about one a month (as it for about 9 years), but this was the first time anyone else noticed it. I had just taken a patient back to their room and sat down in my department. My heart rate was fine walking back, but spiked after a couple minutes of sitting. The techs I was working with freaked out when they saw my shirt moving so fast, so they put my on a portable pulse ox, which displayed a heart rate of 216, and rushed me over to the emergency department. By the time the nurse finished triaging me and finally got an EKG, my heart rate had slowed to the 80's. I was monitored for a few hours and sent home with a referral to a cardiologist. I was then put on a 30 day event monitor with a new script for atenolol and, of course, never had any tachycardia. I did, however, experience such a drop in heart rate and blood pressure that I couldn't make it from one room to another without having to rest and even had a hard time getting out of bed some days. I also had an echo, which was completely normal. She sent me to an electrophysiologist where he immediately said I had AVNRT and needed an ablation. I had that done two weeks afterward.

Things were fine for a while, minus the occasional palpitations I had on a daily basis. Last year (during my first year of nursing school, which is incredibly stressful) the palpitations worsened. Since I work as a telemetry tech, I figured I would put myself on a monitor and see how it went, I had frequent PVC's with occasional ventricular bigeminy and trigeminy. At this point I had been relating any cardiac issues to a combinations of deconditioning, asthma, and a prior cardiac history. A few weeks later I was at the gym taking it easy because it was June (my symptoms are much worse with the slightest increase in outside temperature) and I had been a little lightheaded all day. I had to sit down quite a few times while I was there and had to cut my elliptical time short because I was getting so lightheaded. All of a sudden my vision became blurry, I lost my hearing, I got even more lightheaded, and my vision turned pink (a vibrant, pretty pink =P). I didn't notice any heart rate changes, either because they didn't happen or because I was too focused on the other symptoms. Naturally, I went to see the cardiologist again. I had another echo, which came back normal, and a 24 hour holter, which showed my heart rate getting up to the 170's and about 400 PVC's. He sent me on my way to the electrophysiologist again, where I was told I had a textbook case of POTS. He gave me some lifestyle modifications, told me to increase my sodium intake, and that I would probably grow out of it. He said I could do a tilt table test, but it would just confirm his suspicions, so it would really just be a waste of time. It all sounded like crap to me, so I pretty much dismissed it. I tried the sodium without doing any homework on it and it killed my stomach without helping my symptoms at all, so I stayed away from it.

I had a few more similar episodes, but it wasn't until I saw a different doctor last month that I finally took the diagnosis seriously. My BP was 150/100 which scared me half to death, but he said that my BP should stay that high because it will help push blood back up to my heart. He asked about my activities of daily living, discussed the treatment options in more detail, told me I should have the TTT when I get insurance, and gave my a script for metoprolol and said I could have it filled at my own discretion. He said most people with POTS kind of have their own combination of treatments because the is no silver bullet.

This was the first time I have taken this diagnosis seriously and have actually worked toward making myself better. I feel kind of stupid because no one knows what this is and it sounds like a pathetic excuse for being deconditioned. I get a lot of strange looks when I explain it! Right now, taking 500mg of sodium with big meals has helped a lot, but I still get exhausted and lightheaded easily in the heat. The compression stockings haven't really done much but irritate my knees, however I am going to try them during my clinical days in the fall.

So, I am curious if this sounds similar to other stories. It seems to me like I've just been seeing the wrong physicians, but I don't think I have too severe of a case. I don't feel like I'm growing out of this at all, it actually feels the complete opposite. I am concerned about the future with the prognosis of POTS and the effects of sodium and hypertension on my body.

Anyhow, that's my long story. Thanks for reading! I look forward to talking with everyone and learning more!!

[ophelialit]

Welcome, Albrown23!

As we always say, I'm sorry you had the need to come to the Forums, but I'm glad to meet you--you'll find a wealth of information here as well as a group of the nicest, funniest, most compassionate peeps around. We're all kind of in the same wonky, leaking boat, so there'll be no shortage of empathy as well! Your story does sound similar to many that you'll read on here--kind of a nebulous manifestation and vague "treatments" that never really seem to help a whole lot followed by frustration and a desire to chalk it up to another condition that's better understood and much more manageable...unfortunately, many of us have been down those roads before!

Anyway, take some time to flip through the previous discussions, get to know people and welcome aboard!

[bellgirl]

OH MY...glad you are in nursing school, because it helps to have the knowledge, but it sounds as if you are not growing out of it. I, too, am a nurse and was wondering since you had pectus excavatum, whether you may have Marfan's. Have you ever been diagnosed with that? It is just one of the markers. I'm surprised you don't have Mitral Valve Prolapse. Are you tall with long limbs? Just asking, since I have some of the symptoms that go along with Marfan's, which is a connective tissue disorder. A lot of people on here have Ehler's Danlos, which is another connective tissue disorder, but I haven't come across any with Marfan's and was wondering if there was any connection...Welcome to the site. You will find a lot of supportive people on here. DINET has a wealth of medical information, as well

[kjmom]

Hey! Welcome to the potsies group! So sorry you went through all that:(. I'm 10 and can't imagine having chest surgery! Everyone on here has different symptoms, stories, doctors and things they have to do in regular life. But we all help each other along the way with our, (what I call it) "POTS part of life" so I hope we can help you!

Best wishes,

Kayla

P.S I totally know what you mean with the heat and heartrate stuff. I was super scared when the doctor took my HR standing up and it was 170! And I don't like heat as well. Feels really bad! And as KimbelGirl said, congrats on getting in to medical school! That must be awesome!

[julieph85]

Have you ever been tested for Marfan's? I know there are heart conditions that go along with that.

[Albrown23]

Thanks everyone! I hate to say it, but I'm glad other people are in my shoes and I don't feel so crazy. This has been quite a nuisance, but I guess I've just learned to accept that I'm the weird person who can't do all the same things as everyone else, despite the fact that I really want to. I get lots of strange looks and eye rolling from people who think I'm just lazy or something. So far my biggest hurdle has been standing for longer than a few minutes in school and at work. There are lots of things I have to do at the bedside and I get very lightheaded sometimes. I am going to try using compression stockings when I start back up I the fall. Does anyone have any other suggestions?

I have never been diagnosed with Marfan's, but I have been asked on occasion if I have it based on my heart symptoms and the pectus. I am 5'5" with a long torso and kind of limbs, I have always been underweight (until nursing school...that brought me to a normal weight and now I just feel fat haha but I am fully aware I am not!). I don't think anything is long enough to be considered abnormal, though. I've never had any problems that would scream connective tissue disorder. The only other issues I have are asthma and allergy related. I think that maybe it's just a fluke that I was born with pectus excavatum.

Oh, and you all might be happy to learn I completed a 5k in Philly couple weeks ago! I had to sodium load, drink 2 liters of water during the 30 minutes it took, and walk most of it, but in 90 degree heat with 80% humidity I managed to do it!! Yay!!!

[bellgirl]

Great going on the 5k . Wish you well in nursing, too!!

[POTLUCK]

Welcome

[Millerla]

Welcome! I just got back from mayo getting a diagnosis of POTS myself. What all the doctors told me 50 times over is that your body is off balance and you need to put it back on balance, and work at it consistently. The best treatments they said were vigorous aerobic exercise once a day every day with a goal of getting up to 30 minutes per day. Also, as much salt as you can tolerate, and 2-4 liters of water every day, you should be peeing clear. No naps(easier said than done!) and having a consistent bedtime and bedtime routine.

This is what they told me; of course, everybody is different and I haven't started doing all this quite yet, so I can't tell you if it actually works or not, but it makes sense.