Thursday, April 19, 2012

Leg freak out: Dysautonomia Sucks

The symptoms that are associated with dysautonomia seem to be never ending, so far mine include dizziness, tachycardia, poor motor coordination, brain fog, difficulty swallowing, fainting, fatigue and muscle spasms. This video isn't great quality. If I could go back to when it happened I would have lifted my leg off the ground so its clear that I am not in control of the muscles but it made my foot cramp and at the time it felt like I couldn't lift it off the ground.

I was giving the dog a bath when I felt my thigh tighten slowly and knew it was coming. I had my phone so I hit record. You can't really see it well until the end but it defiantly starts at the thigh and goes down from there. When it starts really going even things that weren't part of the spasm got really tight, like my jaw.

video

Thursday, April 12, 2012

PVC, IST, POTS and me :)

I felt tired all the time, 7 to 8 hours of sleep felt like 3 to 4, which made it very difficult to function. Often times I would feel overwhelmed. I experienced hot flashes, sweated profusely, dizziness and heart palpitations that became painful. My family didn’t know what was happening to me, nor did I.  During these episodes I was short with my family and others around me.  I felt like the world was in fast forward mode as well as spinning. It seemed like if everyone would just stop for a second I could catch up to what was happening around me.

Whenever I exercised I couldn’t match other women’s stamina. I could work out at a moderate level for a moderate amount of time, but if I pushed myself I could feel my heart beating so hard it felt like it was slamming into my chest and it would hurt. I had worked so hard to be able to jog / walk a 5k then an episode of chest slamming heart beats and dizziness a mile or 2 away from my house scared me from even wanting to jog at all. I would also do well on a workout routine for a few weeks and then have a few days of being too weak to even consider working out, almost flu like exhaustion and then it seemed to take a week or two to recover from feeling that weakness. This pattern would repeat and I never could make a connection as to why.

Seemed pretty clear to me, I was obviously sleep deprived and unable to catch up and likely just plan ole lazy. I was clearly a super anxious person and possibly even having panic attacks. I was also not fit enough to exercise in the way other women my age could, overall an out of shape panicky wuss… not so great for the self-esteem.

Now this went on for a few years, in the beginning it was not as bad or as often. I had the panicky episode two different times in a Walmart when we were stationed at Fort Bragg around 2002 so we joked about how I could never go to that Walmart because it stressed me out so much. Around 2003 I was working out very regularly and my trainer thought I was incapable of taking my resting HR because I came in with numbers of 50 and 99, I was 50 lying down and I went to 99 after sitting up still in bed. She said 'no way' and told me to do it again and I came in with almost the same numbers. She didn’t say it but I know the look you give when you think someone an idiot.

At different doctor appointments over a span of years I would hear “you have an irregular heartbeat” or “your heart rate is pretty high”. When I inquired I was told a lot of people have irregular beats, and that often when you are sick or pregnant (which were the only doctor appointments I had) your heart rate is higher. So I stopped inquiring.

Once in 2006 I did explain my symptoms as best I could during a time when they were very prominent and was given Wellbutrin for anxiety. A second time in another state with another doctor when they were prominent I again explained my symptoms to the best of my ability and was told I was clearly having panic attacks and should see a Psychiatrists. For whatever reason I put it off and never made that appointment. Looking back I am sure it was pride and control issues. I like having control and just couldn’t admit that going to a store could cause me to panic.

All doctors in-between those occasions brushed off my symptoms after hearing I was a mom of (2, 3 or 4 whichever it was at the time) as well as an Army wife. We were always moving, or had just moved or my husband was getting ready to deploy, deployed or getting home from deployment. Most doctors as well as friends and family thought I had plenty of reasons to feel the way I felt. It took a long time to understand the anxiety and exhaustion were because of my heart rate not based on emotion.

Fast forward to the summer of 2011; while on vacation (and in the middle of a move) we were in Florida I have a chest cold and Sierra and I went across the bridge to a walk-in clinic. The nurse takes my vitals, guess what, I have a higher than average heart rate, I tell her “it always is higher when I am sick” because this is accurate to my knowledge, no biggie she nods and moves on. After a wait that I, of course, feel is longer than it should be the doctor comes in. Sierra and I are overwhelmed with his smoke smell and I am immediately ready to get meds and get out. He listens to my chest and breathing yadda yadda. Then he tells me I seem to have an irregular ventricle beat and should see a cardiologist ASAP. I am not feeling too concerned considering half my docs have commented on it and on a Military Installation you see a different doctor pretty much every visit and even the ones that commented never said anything past the acknowledgment. I had just been in the hospital for 8 days for kidney stones and no one even mentioned it. He can tell I am not too concerned and to be honest I am more concerned with breathing in the opposite direction of his cigarette breath. I even made a comment of “great I come in for chest congestion and walk out with a heart attack” what I can say I am a sarcastic gal. Sierra giggles and the doctor becomes very stern and says I need an ECG and for Sierra and I to get serious and asks Sierra if she needs to leave the room. I am actually getting angry at him for making this seem like an issue, getting rather rude with us and most of all smelling like an ashtray.
ECG confirms a premature ventricle beat every 4 to 7 beats. He gives me a copy and says “I beg of you to see a cardiologist ASAP”. Okay so I am a little weirded out by the whole situation still unsure if I am angry about this crazy walk-in clinic stinky doc or worried that something could be wrong.

We continue our move to Missouri and I see my new primary Family Doctor and relay all of this. She takes a careful listen and is not too concerned but agrees to the EP Cardiologist referral. I see the EP Cardiologist; he seems mildly concerned (now that I have seen him many times I don’t think his personality allows for emotion beyond mildly concerned). I wear a heart monitor for 24 hours, do some labs, stress test and tilt table test. Monitor showed premature irregular ventricle beats happening more often than expected as well as fluctuated heart rate even during sleep from 50 to 150 every hour, lab work was all normal, I was only able to do 3 minutes on the stress test before my heart rate almost doubled and I had chest pain and I did pass the tilt table by means of not passing out but my heart rate was all over the place.

I am diagnosed with premature ventricular contractions (PVCs) and inappropriate sinus tachycardia (IST) and put on Beta Blockers and see the Cardiologist every 4 weeks for 10 months. We then do another heart monitor because I am still having symptoms and listening to my heart the PVCs are every 4th beat while in the office sitting down. We discuss a few new symptoms, hands, fingers and leg twitching at times, left leg feels like its asleep and turns red after standing or sitting a long time. A few in office tests of sitting and standing while being monitored and we revisit Postural orthostatic tachycardia syndrome (POTS) and add that in with PVC and IST as a diagnosis. Originally I had tested POTS free in his opinion having not passed out during the tilt table test, however it seems my inappropriate sinus tachycardia (IST) had interfered with what would normally be clear markers for Postural orthostatic tachycardia syndrome (POTS).

So as of now I am on Beta Blockers slowly increasing the dosage every 4 to 8 weeks in the hopes that will regulate my heart rhythm and slow my heart rate. POTS can be tricky to treat, the beta blockers could help but they could cause hypotension (low blood pressure) which having POTS would likely make me pass out. So it’s a slow progression to find if we can find a sweet spot where beta blockers regulate my rate and rhythm but don’t lower my blood pressure. I also am mostly caffeine free (occasional 1 cup half caf is just unavoidable as well as a piece of chocolate). I know immediate stress increases any heart rate quickly, for me it’s a huge increase so I avoid people and places that stress me out. I also watch my sugar as I am pretty sure it has an effect. I drink a CRAZY amount of water and actually have, per docs orders, increased my salt intake.

What this means for me now and in the near future; none of my issues are life threatening, just quality of life impairments, this is good news! In the future I may consider a service (response) dog if my symptoms become worse.  It makes it very hard for me to be independent and just go do things I’d like to do because I am always worried my heart rate will shoot up right when I have to talk to someone (order food, answer a question, search for my wallet to pay) because sometimes I can ‘push through it’ and no one notices other times I look like I am having panic attack or about to pass out when it happens. It’s embarrassing, but I do make plans and get out fairly often and like to go with or meet up with people who at least have a basic understanding just for my own comfort.

At this time I have not and my doctor feels like I am not at risk of passing out and am driving. I do work out; and as of right now it’s every day. I have found a recumbent bike at home is for me. Sitting down seems to help me from becoming lightheaded and I may not be pedaling spin class style but it is something.

My husband and 2 older kids can recognize the symptoms and now understand what is happening which takes away a large amount of the anxiety that comes with the episodes. Unfortunately our oldest was also diagnosed with something very similar, neurocardiogenic syncope. She has had some similar symptoms and others very different. She saw a Pediatric Cardiologist while I saw an EP Cardiologist she is on a medication to raise her blood pressure. I would like to encourage her to write her experience from her perspective and if she is willing to share it will be updated on the blog.

So we will all move forward, be proactive with our health and take it as it comes. A diagnosis can be both a comfort and a burden but  we are trying to see it as a starting place to make improvements and create a new version of normal.

If you’d like to read more about these conditions here are some links

http://www.dinet.org/index.htm
http://heartdisease.about.com/cs/arrhythmias/a/IST.htm
http://heartdisease.about.com/cs/arrhythmias/a/PVC.htm

Monday, April 2, 2012

Spring Break

As Spring Break was going on we were the the ones who stayed at home. We had friends in NY, Florida, quite a few in Colorado and friends down at the lake but we stayed home.. and I am so glad we did! We jumped on the to do list and got so many 'Spring is in the Air' chores done! The yard was the most fun by far.

The Before...




Trip one to home improvement store

The Work...

the supervisor...

and he always says"what do you mean I look mad..."

















another wonderful supervisor





Maggie inspecting the box woods

Almost done...


sensible garden-wear...

singing...




We're Done...
well after we trim the bushtree







Lilly's lily