Tuesday, October 24, 2017

Running with Heart Block

Some of you know that I’m a competitive runner despite my chronic illness (Lyme and autonomic neuropathy). I often have major issues with sudden hypotension mid-run and several issues with heart rate.

I’m paced by a Biotronik pacemaker nearly 100% of the time. EXCEPT when I push myself in a race or running uphill. At that point, my intrinsic rate shoots up to about 190, my ventricle chooses not to follow (exercise induced heart block) and the pacemaker halves my ventricular rate because I’ve exceded my “tracking rate.”

At this point my legs feel like lead, I can’t breathe, I get severe chest pain and I sometimes collapse mid-race if I push through and don’t heed my warning to stop.

One of the most frustrating things I’ve dealt with as a young adult athlete who has heart trouble is the expectation that I should settle because the pacing industry is not used to younger patients and athletes. I’ve already done a LOT of settling. I’ve lost my career, my health, financial stability, self-worth, my ability to have children, and nearly all sources of happiness in my life. My life was ruined 6 years ago by a tiny tick bite. I’ve gone through so many surgeries, injuries and constant stress. Running makes me feel better physically and mentally. It raises my blood pressure and decreases my anxiety and depression. It’s one of the only activities I can do and do well with normal healthy people. I like to compete. I like to succeed at ONE thing in my life. I don’t want to give that up. So yes, I get angry when other people expect me to settle and don’t want to put in the effort to help me resolve clear pacing problems when I am putting in tremendous effort to literally just get up every day.

When I go to the starting line of a race, I’m filled with terror. I’m worried that I won’t finish outside of an ambulance because I’ll collapse on the course. I wonder if my pacemaker will behave appropriately or drop my rate in half as soon as I hit a hill. I wonder if my heart will decide to go into vtach. I’m terrified. However, I also am very proud that I can compete with completely healthy people who don’t have pacemakers. I like that nobody even knows I’m sick at a race. They don’t see my port and pacemaker scars. They see one of the top female runners in the area, and as a target to beat (in a friendly rivalry way). I like that I don’t let severe symptoms and arrhythmias scare me out of exercise. I’m proud of that. It’s one of the last things I have.

This past weekend I had pacemaker mediated block issues at my races. Despite being very well prepared and very well trained, both days, both races, I succumbed to the symptoms of severe rate drop on hills and lost overall placements as a result.

Who cares?
That’s trivial.
You should be grateful you can run at all.
I wish I could run like that.
It’s easier for you.
What are you complaining about?

These are the types of insensitive comments I often get when I express frustration with physical limitations due to my illness.

I care. When you can’t even eat a sandwich, go to sleep or stand in line at a store without injecting yourself with a blood pressure raising med, you start to grasp at any hint of success in anything. Running is that success for me. Failing in running is significant to me. It’s the one thing I have to look forward to. I’d like to have one ounce of happiness where my illness doesn’t interfere. That’s too much to ask?

This whole condition and 6 year journey has been very overwhelming and isolating. Doctors don’t  know what to do to help me, normal healthy people can’t relate to me, and I don’t really relate well to most people in the chronic illness communities. I have said so many times that I wish I had something common and easily treated. I don’t want to be an “unusual case” that constantly struggles to get treatment. I want to be normal. I’d give anything to be normal. I cry nearly every night wishing I would wake up better/cured and knowing I won’t. It’s hard. I hope the next time someone is tempted to tell me how lucky I am just because I “can run”, they stop to think about the definition of lucky. My life is certainly not it. For some people exercise is a treatment and a coping method, not a measure of the severity of an illness or a luxury.

Thursday, October 12, 2017

Update: The Stress of Being a Young Adult Zebra

So once again I’ve been MIA on this blog for a long time. Sadly it’s not because I’m better or healed. I returned to write out my anxiety because I’m overwhelmed once more.

Many people and doctors don’t realize that immense struggles that come along with chronic illness as a young adult. I got sick in my 20’s, and I have constant enormous stress about not being able to have a career, a family, financial debts/college loans, health insurance, in addition to daily health struggles.

This summer was incredibly tough on me physically. I sporadically broke my femur again while running and then injured my back about a month after that healed. I also became very suddenly inexplicably anemic and lost access to one of my IV treatments for an extended amount of time. I couldn’t run due to my injuries to control my hypotension and situational depression and anxiety. I was a mess and several times became severely depressed. This week I’m struggling with depression and anxiety again and I think it’s due to a reinstitution of Flagyl for the first time in many years. Several medicines do this to me. I get extremely sad, feel like a burden to everyone, a failure in multiple avenues and guilty for seeking medical treatment despite needing it. I cancelled an appointment for my injury and have been running through pain instead. I’ve been trying to reduce and eliminate several of my hypotension medications as well. When I’m like this mentally I push myself physically. Often too far. Several times my heart has gone into an irregular rhythm mid-run this week and I’m not eating well/enough either. I’m certain that Flagyl is a big part of the issue, but I also don’t want to contact my Lyme doctor and say I can’t handle treatment when I am the one that wanted to strengthen it (due to my increasing dependency on my pacemaker).

Another issue at play is that my main specialist, my only allopathic MD, will be retiring. He manages all of my autonomic insufficiency treatment. Several of the treatments I receive from him are what keep me functional independently and symptomatically. He is the only specialist in autonomic related heart issues in the area, and his replacement will be a new graduate with no experience with my condition, my pacemaker or me. I’m terrified. I didn’t always agree with this doctor, but I respected his opinions, experience and intelligence. Over time he became one of the only doctors I’ve met (out of about 50) that would listen to me and help. His unconcerned/confident attitude regarding very unpredictable and sometimes unexplainable heart changes has kept me unafraid of exercise. Elite level conditioning and aggressive hypotension treatment are the only things keeping me functional at all. What am I going to do if I lose that?

I have so many fears about this transition and nobody really understands via firsthand experience. I tried asking the AHA and the local heart center for help via support groups and not only do they not have support groups for people with my condition or young adults, but they don’t have support groups in my area for anyone with any heart condition of any age!

When you have an unusual condition and your specialist retires, it’s not so easy to just find a new doctor. There are very few in network and most of them have no experience with autonomic disorders. My main concern is losing the few helpful treatments I have at the hands of a doctor inexperienced with my disorder who thinks I can just eat salt, or ignore it. I don’t have the patience or energy to prove everything I say again and constantly argue and advocate. I’m tired. Physically and mentally tired. It’s bad enough feeling sick all the time, but trying to deal with physicians who don’t understand your case or argue with you about objective facts constantly is highly frustrating. I live with it every day and have done extensive research over many years. I may not have MD after my name, but that doesn’t mean I’m of inferior intelligence and can’t read or comprehend research. It’s very aggravating for me to have to argue about the impacts of this condition with another human being who has little to no knowledge of it (MD or not).

Another thing that has persistently bothered me over the years is that there are no true advocates for chronic illness patients. The “advocates” employed by hospitals are there to avoid lawsuits and protect their employer NOT the patients. I’m perfectly capable of speaking up for myself and very knowledgeable about my condition and pacemaker, but what my cardiologist doesn’t realize is that doctors don’t listen to me or speak to me with the same level of respect as they do to him. I can say word for word the same thing as he does to an ER doctor and their response is completely different. To me they throw papers, scream at me, ask me how much cocaine I’m on, ask me how many years of med school I’ve done, and refuse to help or threaten me with an AMA discharge after THEY  refuse to treat in an appropriate logical manner. To him, they don’t ask questions at all. They just listen and do what he says; which is usually the exact same thing I asked them to do: a bag of IV saline, fixing my port in a STERILE medically accepted way (not by infusing a bag of TPA into my body which is NOT protocol), or investigation into a pacemaker or arrhythmia issue. So needless to say, I’m under immense stress about finding another doctor that can respect a knowledgeable patient and who won’t take away my current treatment, change my pacemaker settings, sedate me without consent for future surgeries (another somewhat odd request) or defer to a random doctor unfamiliar with my case and expect me to trust their judgement when they are 100% objectively incorrect. I. AM. TERRIFIED.

So as of right now I’m not sure what I’m going to do to calm my fears and mind. Normally I blank out my mind and go running, but with the heart issues popping up and my reduced caloric intake due to stress I know intellectually that’s not a good idea. I guess it’s time to hit the anti anxiety herbs, detox, and if that doesn’t help start cutting out meds that could be causing a herx.

Sunday, November 20, 2016

Fainting Isn't Always POTS!

So this will likely be a controversial post since I know a huge number of people in both Lyme and dysautonomia communities have been diagnosed with POTS.........

POTS stands for postural orthostatic tachycardia syndrome. By definition, it is a rise in heart rate of 30 bpm or a sustained heart rate of 120+ upon standing. It can cause a multitude of symptoms, including fainting; however, it's a benign condition. The need for treatment is to improve symptoms, not as a lifesaving measure. There is a TON of advocacy, fundraising and research going on specifically for POTS. It has definitely claimed the spotlight in the dysautonomia realm. One of the main advocacy associations for dysautonomia focuses almost exclusively on POTS. With limited advocacy efforts for other causes of fainting, including other disorders that fall under the dysautonomia umbrella term, many patients are unaware that there could be other more sinister causes behind their fainting episodes.

A few years ago I was diagnosed with POTS. I met criteria. Unfortunately, having that benign explanation/diagnosis on my chart led to a delay in diagnosing and treating another serious condition with similar symptoms that required a pacemaker: heart block. The physical symptoms are very similar to POTS, but since I had already demonstrated on ECG that I had tachycardia, it was difficult to get doctors to believe that I was sporadically changing to the opposite problem; severe bradycardia. Eventually they listened...............after I went into cardiac arrest. 

You may very well have POTS, and yes it is benign, but having POTS does not make you immune to developing other conditions and arrhythmia's. It's of vital importance to not settle on a diagnosis too easily when fainting is involved. Make sure before you attribute fainting to POTS (or Lyme), that you have caught your episodes on an ECG. You may need to request a 30 day heart monitor or an implanted loop recorder to do so. Also, do not assume that just treating Lyme is going to resolve everything when it comes to heart symptoms. I know we as Lyme patients are treated horribly by mainstream doctors, but when it comes to heart symptoms, a LLMD is not a specialist and should not be advising or attempting to treat those types of symptoms. Any responsible LLMD will immediately refer a patient with heart symptoms to a cardiologist or electrophysiologist. The latter is a better choice for people whom do not have structural heart disorders (most Lyme and dysautonomia patients fall into that category). Also, remember, you are not going to a cardiologist to treat Lyme or to discuss Lyme. Let your LLMD do that, and let your EP take care of their specialty.........your heart.

I routinely see posts of people who have fainted with warning signs of other disorders saying things like "my POTS is flaring today" (and their heart rate is in the 30's) or "I had that and it will go away with Lyme treatment." These types of statements always scare me. Fainting is nothing to mess around with. Depending on the underlying cause, it can be benign or life threatening, infrequent or constant. If you haven't caught a fainting episode on an ECG, don't assume it's JUST POTS or JUST LYME. There are many other things that could be going on. You could be having vtach, vfib, severe bradycardia, heart block, hypotension, etc.

Some warning signs that your fainting is not just POTS or Lyme are the following:

No warning symptoms in advance (more likely to be heart rhythm related).
Fainting while lying down
Low heart rate
Skipped or irregular feeling heartbeat
Severely low BP mid-episode
Confusion upon awakening

Please educate yourself about some of the other causes of fainting and POTS-like symptoms. It may just save your life!!

Heart Block
Sudden Cardiac Arrest
Neurocardiogenic Syncope
Orthostatic Hypotension 
Ventricular Tachycardia