Who Needs Cedar Point? I Ride the POTS Roller Coaster.

I was going to write about a mighty little mineral known as Magnesium today, but I am too worn out to provide constructive information.  Instead I am just going to wax not-so-poetically on my week so far.

I am still trying to reduce my use of atenolol.  When I told my Naturopathic Doctor about my foray with propranolol, she said she really thinks that while my beta blocker is helping my tachycardia, it is exasperating most of my symptoms.  As of right now I have been able to go 2-3 days between having to give in and take a small dose, which is good considering last year at this time my tachycardia was literally constant with no regard to whether I was in a supine or upright position.  As of now the last time I took any atenolol was on Monday when my ANS practically cried over spilled milk... but instead of milk it was a dropped banana.

This isn't the banana that was
involved in the accident, but
rather another entertaining
naner I once knew.

I had already been having a tachy kind of day, with the typical HR jump to 126 when I stood up.  I was trying to make my breakfast when I dropped the banana on the floor.  My ANS immediately reacted like, "OMG!!! BANANA DOWN; BANANA DOWN!"  My HR jumped to 163 on impact and based on the intense pounding in my chest, I am pretty sure my heart was trying to escape my body. Of course, I laid down on the couch and within a minute or two my HR was back down to 88.  What an over-reactor... such a Drama Queen my ANS is!

Monday night however was a record-breaker.  Generally speaking I only get 3 hours of consecutive sleep at a time.  I refer to my night's sleep as a collection of naps, many times with spans of insomnia in between.  Tuesday morning I woke up for the first time at 8am.  I had slept for 6.5 hours at once!  It was pretty miraculous.  My BP was respectably sitting at the high-side of low, and I even had the energy to shower before noon.  Maybe I am cynical or jaded by POTS, but I have learned all too well that if my body randomly cooperates with me, it is about to punish me for it.  And punish it did!

After only 4 hours of sleep last night I woke up at 5:30am feeling really overheated and just weird.  I went downstairs to try to cool off and watch some TV, when the pre-syncope started to hit.  I threw myself onto the couch and called my mom on her cell phone to ask her to come downstairs and get me some Gatorade.  Of course at this point the shivering, shakes and chattering teeth set in.  When I took my vitals while I was laying there my BP and HR were both good, which seemed odd.  Then it occurred to me, it was my low blood sugar causing the attack this time rather than a crashing BP.  I spent the rest of the day feeling like total ick.  I even had to drink some root beer to try to get my body to bounce back better.  My ND would be mortified to know I resorted to HFCS.  Shh... it will be our little secret.  Here's to a better tomorrow!

For all of you out there riding this POTS roller coaster with me, just know you aren't alone.  Let's sit in the back and put our arms up when we descend the hills!

I Want to Ride My Bicycle. I Want to Ride My Bike.

Life with POTS is all about being paradoxical.  I'm overheated, but my feet are ice cold... My heart rate sky rockets, while my blood pressure plummets... I'm beyond exhausted, but I can't sleep.  Then comes the real kicker... you are too dizzy to stand or even sit up most days, but your doctor wants you to exercise.  According to a heartwire article about research done by Dr. Benjamin Levine, exercise helps to improve "upright hemodynamics, normalizing renal-adrenal responsiveness, and improving quality of life in patients with postural orthostatic tachycardia syndrome (POTS)".*

I understand fitness, and my workouts pre-POTS consisted of hitting the park or the treadmill for a 3-mile run.  POTS is a game-changer though.  My body and heart no longer work or respond the same, so just pushing through a standard workout isn't the answer.

I was referred to the cardiac rehab program at Cleveland Clinic.  The head doctor and the exercise physiologists in the rehab department are great!  You can certainly do your exercise training at home if insurance, money or location/transportation doesn't allow you to work with a professional.  However, I would highly recommend at least consulting with a cardiac rehab program if you can.  They helped me plan a course of action and determine my optimal heart rate targets for my current condition.

8 Tips for Working Out with POTS:

1. Start slow! Obviously there is a certain amount of mind over matter in all of life's challenges, but the typical athletic mantras of "just do it" or "no pain, no gain" aren't applicable to reconditioning with POTS. Don't try to do too much too fast.  Even if you can only do a few minutes at first, that's ok.  Just build from there at a pace you can handle.

My HRM even knows to wish me Happy
Birthday!

2. Use a Heart Rate Monitor. There are various heart rate monitors on the market from basic to those with more advanced functions.  My exercise physiologist told me the Polar brand with a chest strap was reliable and accurate so I bought a Polar FT4 from Amazon.  I love it!  Not only can I make sure I am not pushing myself out of my prescribed heart rate target, it is nice to see when a certain exercise intensity and duration is becoming too easy.  This helps me gauge when it is time to move to the next level.

3. Monitor Blood Pressure.  During cardiac rehab they would take my blood pressure reading before and after my workout and once during.  This isn't as easy to do on your own, but if you buy an at-home blood pressure cuff, you can at least check it before and after.  Keep track of these numbers along with your heart rate readings so you can monitor progress.  Remember if you are suffering from low blood pressure after your workout, elevate your feet while you recover and get some salt in your system.

4. Hydrate. Back in my running days, I would workout for 30 minutes or so and not even think of drinking water until I was done.  Not any more.  It is really important to drink water before, during and after your workout.  It helps me fight off my heat intolerance, dizziness and unstable BP while working out.  We just simply need more fluids as POTS patients, and it doesn't change during our workouts.  If you use electrolyte drinks, definitely include them during your workout routine, or at least add a little sea salt with your water.

5. Wear Your Compression Socks.  I am not always good about wearing my compression socks around the house, but I will not workout without them.  You want to keep your blood from pooling during your exercise as much as possible to help support you from losing to your orthostatic intolerance.

6. Keep Cool.  If you suffer from heat intolerance like me, heating up during exercise can induce lightheadedness and wear you out fast.  Make sure you are wearing cool, breathable workout gear.  I advise sticking to shorts and tees or tanks.  When it comes to my exercise clothes these days, sweatpants and long-sleeved shirts need not apply.  I also make sure to use a fan and even a cooling neck wrap if necessary.

7. Exercise Recumbent-Style or Seated.  We already know that standing is tough on our vitals and causes increased blood pooling.  This means working out on a recumbent bike, rowing machine or on the floor is perfect for POTSies.  In cardiac rehab, I rode a recumbent bike before moving to the upright bike, and then finally I was walking on a treadmill.  If you don't have access to a recumbent bike, doing stretching and strengthening exercises seated or on the floor is a great at-home alternative.  I downloaded a 20-minute workout from Exercise TV on iTunes.  It is called Gentle Pilates and is a floor workout.  Some of the warm-up is done standing so I either skip it or try to modify it while sitting on the floor.

8. Be Patient and Don't Get Discouraged.  You are not going to get stronger overnight.  Even though I was able to build up to walking on a treadmill at a healthy clip for 45 minutes, it took months for me to reach that point.  There were lots of hurdles and setbacks along the way.  Nothing about it was easy.  There were days I had to stop early or leave rehab in a wheelchair.  If at first you don't succeed, try, try again.


Some closing motivation by Queen... 

* Taken from http://www.theheart.org/article/1241927.do

Just Like a Pint After a Long Day

You know that feeling you get after a long, stressful day when you sit out on a patio somewhere and take that first sip of an ice, cold beer... you feel your shoulders relax, and the tension just melts away.  Well I was reminded today how a little bit of beta blocker can have that same effect on me.

Maple beer from 3 Brewers in Toronto during my pre-POTS days.

The trial of only using my beta blocker as needed didn't last long.  Saturday afternoon I tried just 5 mg of propranolol when the palpitations became bothersome, and my resting HR was 102. The result?  Well my HR went down, but my blood pressure dropped too much.  I got a killer migraine and was experiencing pre-syncope while lying down.  I felt miserable.

After Saturday's debacle, I felt pretty rundown on Sunday and tried once again to avoid using a beta blocker.  That ended today at 5:30pm, when I was tired of the tachycardia and had an HR of 145 just from standing up.  I went back to my tried and true atenolol, but only took a quarter of a pill to try to walk the line between my HR and BP.  About an hour later, I felt like I had just taken that first sip of frosty beer.  The tachycardia was gone, and I could stand without feeling like I was about to launch into space.  It was sublime.

Moral of the story: My beta blocker and I need each other... almost to the point of wanting to doodle my beta blocker's name on the cover of my notebook.  Amy + atenolol = 4 Eva

Unintended Hiatus

My poor blog has been neglected.  It has been a crazy few months.  Starting at the end of February, my POTS was in a major flare.  By the end of March I was undergoing various tests and was back on medical leave from work.  It seems like every week there was something else keeping me couch-bound.

I have a lot of updates with regard to the direction my treatment has taken, but I don't want to list them all in this "grand re-opening" post.  One of the biggest changes is that I am now seeing a Naturopath Doctor in addition to my MDs.  I will post soon on what that has been like and the direction she is taking with my treatment.

Another medication allergy...
won't take that again!

I did go back to my cardiologist on Thursday though.  My blood pressure has been super low lately, and I had been forced to lower my beta blocker doses on my own, while I waited to be able to get into him.*

After our visit on Thursday, he decided we should try stopping the beta blocker and see how it goes.  He did give me a propranolol prescription for use as needed.  I haven't taken my atenolol since Thursday and have not had to resort to any propranolol yet.  I have definitely been having palpitations on and off, especially today, but I am trying to reserve the propranolol for when I feel like it is beyond what I can handle or for full-blown tachycardia.  As of now my HR is sticking to the 80s and 90s, so that has been bearable.

I don't like to post without a photo if I can help it... just text looks boring to me.  It is an occupational hazard of having worked with multimedia for many years.  The photo I included is from my last ER visit in March.  I was in my PJs and slippers when the ambulance came to pick me up... wearing slippers instead of shoes to the hospital is not recommended.  It is all fun and games until you're discharged and walking around the hospital in slippers... filing this experience under "Things POTS Has Taught Me".


* Obviously this is a good point to remind people that you should never change medications or doses without your doctor's buy-in.  However my doctor has trust in my understanding of my medication and my condition.  He has given me guidelines in the past about what I can and can't do, and at what point I should call him.