Tag Archives: POTS

My poor “broken” heart

It’s been a rough couple of weeks, I haven’t felt up to writing about it but I think I’ll try now.

In my post Salt, Socks and Heartbeats  I told you all about the heart conditions I had been diagnosed with, and that I would need to have a pacemaker placed. Well fast forward a couple of months, pacemaker is in and working fine, but here I am writing yet another post about my “broken” heart.

I was in the emergency room twice last week, both for heart issues. The first time was kind of crazy, I laughed about it because it was like straight out of the movies. My heart rate was very high so I drove myself to the ER and walked in, told the woman at the desk that something was wrong with my heart and was immediately plopped in a wheelchair, rushed to a bed, hooked up to an EKG machine….the next thing I knew there was a doctor and 5 nurses running into the room. The doctor stopped short, took one look at me talking to the tech and said “you’re STABLE?!”…”uh, last time I checked?”…

So they rushed me to a private room, and started hooking me up to all kinds of monitors. They had called a “code” like on tv, because every nurse in the ER was in my room running around like I was dying! They hooked me up to the crash cart! (That thing that they use on tv that they yell “clear!” and it shocks you).

Long story short, they had to give me adenosine, a medication that temporarily causes ventricular asystole (an episode of no cardiac activity) and is used to reset the heart and pull it out of dangerous arrhythmias. In normal person words, they stopped my heart temporarily and lucky for me when it restarted it decided to behave itself and beat like it’s supposed to.

A check of my pacemaker showed that my heart rate had been an average of 223, with a maximum of 273, for an hour. That is NOT good for your heart.

The ER doctor was very nice, and did not make me spend the night in the hospital on the condition that I see my cardiologist the next day. At my appointment my cardiologist said that I was not on nearly enough beta blocker (medication to lower your blood pressure, but also lowers heart rate and can help prevent arrhythmias), so he doubled my dose.

Fast forward 24 hours and I’m back in the ER. This time it was an average of 242, with a maximum of 273, for half an hour. My poor poor little heart. :[

Again, back to my cardiologist I go…this time I insist that the beta blocker (obviously!) isn’t working so we switch to another one, that is a much higher dose and I take it twice a day instead of just once.

The good news is I have managed to make it 6 nights so far without a trip to the ER (isn’t sad that I’m counting?).

The bad news is my heart is still acting up…it’s doing some sort of strange arrhythmia thing as I write this, which isn’t ER worthy, but doesn’t feel good. My poor cat is sleeping on my chest and keeps jumping because she feels my heart do something strange.

My gut feeling is generally right…and it says I am headed for at least one more surgery, maybe more. That’s a lovely thought. And no, I’m not being dramatic, depressed, or whatever other way you want to minimize what I’m feeling. I’m a realist, and I’ve been sick long enough to know my body and when something is really really wrong; and this is bad. 

I hate this. I hate that every time my heart does something weird (which is ALL the time) I panic, “are we running to the ER again?” “is it going to stop?” “what if this time something really bad happens?”.

Tonight I am sad that I feel like any minute now my body will turn on me again.

I’m angry that I underwent a (really terrible) surgery that was supposed to fix things, and it didn’t. Now I may be looking at another (probably terrible) surgery that may or may not actually fix it this time.  I’m angry that my primary care doctor basically “called” this 2 weeks after my pacemaker surgery, when she questioned the cardiologist’s decision on which device to give me…if she was right all along I am going to be furious.

I’m overwhelmed with all that needs to be done now, I am going to get a second opinion from a different kind of doctor who specializes in electrical disorders of the heart (probably where I should have been going all along), but that means tons of paperwork, going over my entire medical history, and the stress of wondering whether or not he will freak out over my lyme diagnosis and antibiotic list.

I’m scared that it could happen again at any moment. I’m scared that I know that having heart rates that high is damaging to your heart, so what kind of damage has already been done? And how much more damage has to be done before we can figure this out and stop it?

This sucks.

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JUST FAT

I learned the most miraculous thing this week, that I am actually not *just* fat and out of shape!

I was recently diagnosed with something called POTS, which stands for Postural Orthostatic Tachycardia Syndrome (A mouthful, I KNOW). What’s THAT, you ask? “Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia. POTS is a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing. The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing”.

I have been researching this condition some lately, as mine seems to be flaring up, and is making me quite uncomfortable. Every time I stand up I get so lightheaded that I have to hold on to things and wait for it to pass, and several times my vision has gone black and I have nearly passed out (passing out is very common in people with POTS). So in my research I came across this symptom list…

“Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremeties, chest pain and shortness of breath” I have SO freaking many of those symptoms (fatigue, headaches, lightheadedness, heart palpitations, diminished concentration, tremulousness, pain in the extremities, chest pain and shortness of breath!), although most of them could be caused by any number of the 20183273 other conditions I have. But what got me was the “exercise intolerance” thing, what the heck is that!?! So naturally, being the research junkie that I am, I looked it up…

Exercise intolerance is a condition where the patient is unable to do physical exercise at the level or for the duration that would be expected of someone in his or her general physical condition, or experiences unusually severe post-exercise painfatigue, or other negative effects” 

Hmm…that sounds like ME!

For years now I have complained to doctor after doctor that I just can’t exercise, that every time I try I feel absolutely awful and nearly collapse, and of course I get told every single time “well it’s not easy for anyone at first”. Yeah, I say BS. I have literally been unable to function after 8 minutes on a stationary bike at physical therapy, that’s NOT just being out of shape. I once, at age 15, had a cardiac workup because I kept having spells of nearly passing out and heart palpitations at school (hmm…sound familiar?). The doctor sent me for a stress test, a test that involves walking on a treadmill at a gradually increasing speed and incline. During this test my heart rate skyrocketed and they had to stop early…the doctors solution? I was “overweight and needed to join a gym”. *Note, I know most of you don’t know me in person, but I am most definitely not obese, and at age 15 was at an incredibly healthy weight for my body type and DID workout quite frequently! (This doctor ended up blaming my issues on my use of “Xanax” which I have never taken in my life. Idiot.)

So last summer I requested a heart rate monitor for my birthday, as I wanted to begin attempting to work out to lose a little weight (taking 124532 meds for years which ALL have side effects of weight gain will really mess up a girl’s body) and felt I should keep an eye on my heart rate. I was already on a beta blocker at the time, since a while before that my resting heart rate (heart rate after sitting still for at least 15 minutes) was consistently around 115-120 (normal should be 60-80) and it was extremely uncomfortable. So given my history of heart rate issues I wanted to keep an eye on it while working out.

I began lightly jogging a couple of days a week and wore the monitor every time, and every time it would record strange things such as drops down as low as 40 beats per minute while walking, and spikes up to 220 beats per minute when bending over to stretch. I told my doctor and she said the monitor was probably inaccurate. After that, due to increased pain and back issues I was told not to jog anymore, so I started going to the gym to do the elliptical machine. Low and behold, every single time I got on the machine it’s built in heart rate monitor would record my heart rate as 160-170 beats per minute in the first MINUTE I was on the machine. According to The American Heart Association my target heart rate for during a workout is 100-170 beats per minute. Something told me that I should not be hitting the top of that range in the first 60 seconds of a work out…so I asked my doctor, “I have no idea” was her reply. Keep in mind that all of this time I have been on a blood pressure medication designed to lower my pulse, imagine what those numbers could have been like without that pill!

I can’t explain how angry it makes me to know that no less than 5 doctors have missed this, relatively simple to diagnose, condition and instead have chosen to destroy my self image rather than do a simple test. The records I recently received from the first cardiologist 10 years ago indicate that he was heading in the direction of a POTS diagnosis when he randomly decided it must be due to my “xanax use” and told me I was fat and did not need to come back to see him.

The more I read about POTS the more I realize it has been causing a lot of issues that I was writing off as normal with chronic illness or even normal for normal people for years. And needless to say, the more relieved I become to finally have an explanation besides “you’re fat and out of shape” Now to recondition my brain to actually believe it…

 

 

 

http://www.dysautonomiainternational.org/page.php?ID=30

http://en.wikipedia.org/wiki/Exercise_intolerance

http://www.heart.org/HEARTORG/GettingHealthy/PhysicalActivity/Target-Heart-Rates_UCM_434341_Article.jsp

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Stupid brain

“I don’t know how to explain it, but my brain isn’t working. It is like I’m doing things, and I think I’m doing them just fine until I go back later (like the grammar in this and my last few posts :[ ). Also it feels weird, my brain. I need to think of better words to describe it.”

I wrote that paragraph a couple of weeks ago as an attempt to start a post, obviously that did not work out too well. What’s weird is that it doesn’t sound like me, especially the last 2 sentences, it’s not how I write things.

The point is, that I feel such a loss of control over my brain lately. I feel like my intellectual abilities are just gone, I feel dumb. I feel like I try so hard to be coherent and logical when I write, and then I go back and read what I’ve written and it is riddled with errors. So very frustrating.

I miss feeling smart, and confident in my mental abilities. It used to be that I never questioned whether I could do something, the only thing that mattered was the amount of effort I put in. I used to dream of going to school, graduate school, a doctorate program, and then of being a scientist and making a difference in the world. But it wasn’t just a dream, it was a plan that I could accomplish with enough effort. Not so much anymore. Now it is just a dream, and what feels like a foolish unattainable one.

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Fearless Healing: Finding Strength Within Weakness

Such an incredible post. I have attempted to say many times exactly what Shelley has managed to say, as if her words came out of my own heart.

Embrace the body's innate healing mechanisms

The world constitutes strength as possessing physical power, societal power, and financial power. In illness, we learn great insight and wisdom on this subject. We learn what most do not learn until they are elderly. Weakness has nothing to do with muscles, fame, or fortune. It has everything to do with facing unimaginable heartache after heartache, allowing ourselves to break down and be human which renders us as desperately vulnerable, and then having the courage to wake up and face yet another day.

In fact, all of the aforementioned attributes regarding the world’s take on strength possess the power to quickly turn themselves into major weaknesses. Furthermore, they possess the power to turn mankind into animals. As individuals facing struggles unbearable to most, we are endowed with the great gift of gaining perspective on such a crucial matter in life.

We change dramatically the moment the doctor mouths a diagnosis…

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Knowing my body…

Just because I know my body, doesn’t mean I always like her. Sometimes I feel down right betrayed by her. How dare she have the nerve to look like a perfectly healthy young woman, yet feel like an 87 year old grandma. That’s just not fair.

And then there is the ever present battle inside the chronically ill patient; my mind tells me I want to do something, and that I should, but my body and past experience tells me that I will majorly regret it if I try.

I’ve felt pretty good recently too good. So naturally my brain starts in with “maybe you could try to_____” or “if you just took it really easy…”

But I’ve been down that road before, I’ve taken the chance and reallly regretted it. And then my body decides to drive the message home (just in case I was actually thinking of doing something) with a few days of feeling really crappy and completely out of control of my own body…just to make sure I remember that I am actually not in charge here. :[

So this sequence of thoughts always leaves me feeling down, remembering all of the things I used to be able to do but can’t anymore.

For example, I used to train in martial arts (Tae Kwon Do); I have a 4th degree black belt that took me close to 13 years to earn, as well as an instructorship position, referee certification, and awards from having competed at both the state and national levels. Now I haven’t trained in several years, and can barely make it through the grocery store without wanting to collapse. My two younger sisters, for some strange reason, have decided to take up karate (they’re bored, and crazy lol)…so all of a sudden ALL they talk about is karate this, and karate that. Recently at a family dinner they were going on and on (and ON!) about it, and it got me thinking, “maybe I COULD do that again?” I miss it so much more than I can explain; it is the one thing that I light up when I talk about, and I can talk for hours and hours about it! So I started to get excited; I thought maybe I’ll pull out my uniform, do a little training alone so I can take it as slow as I need to. I can do this!

But nooooo…my body decided I needed knocked down a few pegs. I was getting a little too energetic and optimistic. So it decided to not let me get a decent nights sleep for several weeks now, plus increase my fatigue and pain, and oh let’s throw in some major motor tics too (just in case I started to think I actually had control over my own body!) Not to mention a POTS flare up and some random blood sugar drops, just for good measure.

Thanks body, love you too. :/

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New diagnosis!

As if I needed more diagnosis’ to add to my laundry list, right?! The thing about these is that they may in fact be the root cause of most of the others! That’s really mind blowing to think about…

Anyway, here is the list of new ones…

Chronic, neurological, Lyme disease

Bartonella

POTS (Postural Orthostatic Tachycardia Syndrome)

Mold toxicity

and Adrenal fatigue

Whew! That’s a lot!

So this past week I embarked on treatment for the Lyme disease/bartonella…the thing about treatment is that chances are you will get much worse before you get better. It involves several different antibiotics, as well as a huge list of supplements and vitamins.

Watch the video below for more information on Lyme and Bartonella.

Overall I had a decent first week of treatment; the first day of antibiotics I experienced what is known as a “Herx” reaction. A Herx reaction is defined as “Herxheimer reaction, n.pr an increase in the number or degree of symptoms caused by a rapid destruction of antigens, cell particles, and toxins, that occur during treatment.” I took the first dose of antibiotics in the morning, and by about 6:30pm when I got home from work I felt strange, but couldn’t put my finger on what was wrong. I took the second dose soon after I got home, and by 9pm I had a headache, was having trouble holding my head up or my eyes open, I felt as though my body did not belong to me, like my brain was shut off and disconnected from the rest of my body. It was like a really bad “trip” combined with high doses of narcotics, and it was NOT as fun as that sounds. But by the next morning it had passed, and I have not had that reaction since.

Today I feel rather crummy, but in a different way. I feel as though I am coming down with a cold, even though I am fairly certain I am not. I ache, I’m tired, my throat is raw, and all I want to do is lay in a cool, dark, quiet room all day (so that is exactly what I am doing as I catch up on my blogging!). I feel as though the rest of the world is too harsh…something about the combination of lights and sounds is simply too abrasive.

As a dear friend said to me the other day “and so the roller coaster begins”.

Here’s to hoping this is the first step on a long road to living a better, healthier life. :]

Links:

Explanation of POTS:

http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm

Explanation of Lyme disease/Bartonella:

http://www.lymedisease.org/lyme101/lyme_disease/lyme_disease.html

http://www.lymedisease.org/lyme101/coinfections/bartonella.html

WATCH THIS VIDEO!

“Under Our Skin”

Definition of Herx:

http://medical-dictionary.thefreedictionary.com/Herx

 

 

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