Week 1.......not bad!

So, I've been running for a week now.  Impressive, I know. :)

I am following the advice of my "exercise dude", Kyle.  Kyle works with my cardiologist and his role has been HUGE in my recovery from POTS.  I give him so much credit because he has been nothing but encouraging to me.  He is extremely knowledgeable about POTS and I respect his advice.

At my last check-up a few months ago, I mentioned to Kyle that I may be interested in running.

Now, Kyle knows me from my sickest days with POTS and remembered the time I told him I would never be interested in becoming a runner.  He never pressured me to run at all.  He never even suggested it.  Just want to make that clear.

We just happened to be talking and I asked him about a big gold ring he was wearing--it reminded me of a Super Bowl ring.  He told me the story of how he made the U.S. Olympic team and earned that ring. No joke.  I knew he was a runner, but I didn't know he was a former Olympian!

Well, needless to say when I told him I was interested in beginning running, his face did this.... :D

Kyle's advice to me was to begin by walking 4 minutes and then running at a sloooow pace for a minute or less.  Rinse and repeat as many times as I could for the duration of 30 minutes without wearing myself out and by closely watching my heart rate monitor.  He made it clear that even if I could only run 5-10 seconds at a time before feeling fatigued, that was a great place to start.

That's what I've done.  And I feel great!

I alternate my exercise by doing cardio 3 days a week, with strength training in between those days. So, a total of 6 days of exercise most weeks.  I find I need a day off.  In the past, if I tried to exercise all 7 days of the week, I would become fatigued and end up missing several days at a time before I could resume.  I'd rather take off 1 day than miss several.

During my first attempt at running, I only made it about 1 minute and was only able to do it twice. I knew during that second try I was becoming very tired and my feet felt heavy.  Forgot to turn my heart rate monitor on.  Doh!

During my second attempt at running, I ran nearly 1/4 mile total.  Again, I could only manage two running bursts, but felt a lot better when I was done.  HR peaked at 177.

By the end of the week, I ran 1/4 mile.  My last run had my heart rate over 180, so I didn't push myself.  I think if I had initiated more runs I would have collapsed afterward.  As it was, I still felt really good and felt a good boost in energy for the rest of the evening.

I am pleased to still be alive!

~Amanda

How salt tablets saved me.

After my cardiologist confirmed I had POTS, he immediately prescribed salt tablets for me.  I began taking 4 grams per day to increase my blood volume and thirst.

I was also given a prescription for exercise.  I was to begin using a recumbent bike without resistance at a low RPM to slowly increase tolerance to exertion and changes in body temperature.

The immediate difference I saw was an increase in energy!  I was also able to stand longer and move around without tiring so quickly.  

I have read of people who have to take up to 8 grams of salt a day.  I'm glad I have never had to take that much.  I found out early on that salt tablets are hard on the stomach.  I learned quickly to take them in the middle of a meal and not before or after.  The salt needs to be sandwiched by food to prevent irritation the the lining of the stomach.  I found myself standing in front of the toilet ready to vomit a few too many times for my liking.  Lots of fluid helps dilute the salt faster, too.  Just taking the pill with a glass of water didn't cut it for me, either.  Milk works, but not water.

If you happen to take salt tablets and have a hard time keeping them down, try taking them in the middle of a meal or with a big glass of milk to help your stomach out.

I currently take only 3 tablets a day now, as I don't eat a 4th meal and would rather not risk vomiting.  I have been doing fine on 3 tablets and my doctor doesn't have a problem with it either, given my incredible progress.

So, how did salt tablets save me, exactly?  Without a doubt, salt tablets helped me get up and get moving.  Being able to move let me exercise.  Exercising built muscle and sort of  "Reset" my autonomic nervous system so I could tolerate changes again.

At the time of this writing, I am more than 2 years post-diagnosis and have been told by my doctor that he considers me fully rehabilitated from POTS!  Praise God!

My recovery began with salt.

~Amanda

Running from POTS

Hi, I'm Amanda!  I am 36 years old and think I've just lost my mind.  I decided last week that I wanted to start running.  A little background......I've always hated running.  Running makes me feel like I'm going to die.  Chest pounding, heart skipping beats, beating so hard it feels like it will explode.  Overall, not awesome.  Common in non-runners?  Apparently so.  What did people tell me about all this?  

"You're just out of shape."  
"You'll develop endurance over time IF you can keep at it."  
"You're young....you can handle it."  
"What do you expect?  You are inactive." (Wasn't true.)
"Well, running isn't for everyone."
"You just have to push until you get your second wind."
"Nobody ever died from running." (Also not true.)

Sound like a bunch of Indiana-hooey to you, too?

You see, I was an active kid.  I danced, played softball, and soccer.  I was a skinny kid.  Then something happened.  I hit puberty.  Something changed in me and I didn't know what it was.  Lightheadedness was my biggest symptom so the family doctor told my mom to get me some iron pills and that would take care of it.  No blood test, just an assumption.  The iron pills didn't help.  I learned to live with the "dizzy spells" as mom called them.  They were worse some days than others.  I never knew why.

I had to quit soccer both years I played after a couple of months into the season.  I started as a Forward and was a very fast sprinter (faster than many of the boys) and could run laps OK in practice, but after a number of weeks, my running ability regressed.  I felt like I would die in practice.  My coach couldn't offer any advice other than to push through it.  I tried.  After all, I had two older brothers who played baseball, football and basketball and I couldn't let them show me up.  Then, I developed shin splints.  Excruciatingly painful shin splints.  All efforts to remedy the pain were useless.  I quit soccer.  This sequence of events would repeat itself in my 8th grade year, as well.

Fast forward to about age 17 and I decided I wanted to start running.  That lasted less than 2 weeks.  Die.  I wanted to die.  What's worse than feeling like you are going to die?  Having someone tell you all of the above quotes about why you feel like you are going to die.  Not helpful.  In fact, instead of being helpful, it made me feel like a bum.  A fat, out of shape, bum.  None of which, were true.

What was my problem, then?  Why couldn't I do this simple activity that most normal people could do?  Why did aerobic activity just kill me? (I have a story about aerobics, too.)

Fast-forward to age 34 and I finally understood why.  I have P.O.T.S.  That would be Postural Orthostatic Tachycardia Syndrome.

This would have been valuable information to have back then!  Want to know more about POTS? 

I'll tell more about my story of "getting sick" and my diagnosis later, but for now I want start this blog to document my quest to use running to aid my recovery from POTS and prevent relapse.  A little weight-loss thrown in would be a plus. :D

With the help of my cardiologist and the awesome Kyle (my exercise therapist who works for my cardiologist), I am well on my way.  I want to run from POTS.  Far, far away from POTS.

~Amanda