My Life With Dysautonomia

I would like to welcome Lindsay (Musings of a Dysautonomiac), my guest blogger for the day. Lindsay and I met quite some time ago as my blog was just getting started. I wasn’t that familiar with dysautonomia until I began following Lindsay’s blog.  Now I will let Lindsay explain her chronic invisible illness to you all. Many illnesses come on gradually – symptoms slowly progress over time –  unable to determine when the illness started.  However, that was not my experience.  I remember the exact day, almost the exact moment I became ill. I was at an outdoor festival on May 17, 2009 here in southern California. I was a little tired, as I had just returned from a week long work trip to Washington, D.C. the previous day, but otherwise was feeling good.  Suddenly I felt very nauseous and while I waited in line to use the bathroom, I fainted on the street. I was taken to the emergency room in an ambulance.  After numerous scans revealed no internal bleeding, I was given an IV and sent home. In the days and weeks that followed, I attempted to return to work (I’m a business attorney) but was so weak and dizzy that I was afraid to walk the ten feet from my desk to the office printer.   At home I would sometimes have to crawl to the bathroom when the lightheadedness became overwhelming. I felt like I was on a rocking boat everytime I stood up.  I was referred to doctor after doctor and ended up seeing a neurologist, cardiologist, pulmonologist, ear, nose and throat, allergist, and physical therapist, none of whom had any idea what was happening. I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, but more for an inability to find anything else to explain my symptoms. It wasn’t until February of 2011 when I was finally diagnosed with postural orthostatic tachycardia syndrome (POTS) by a second cardiologist. POTS is a form of dysautonomia, which means a dysfunction of the autonomic nervous system.  The autonomic nervous system controls all those functions you don’t have to think about – heart rate, blood pressure, digestion, respiration, perspiration and body temperature, among other things.  POTS is characterized by an excessive increase in heart rate when going from lying to standing. The vast majority of people with POTS are women of child bearing age. When humans stand up, gravity pulls blood down to the lower arms, abdomen, and legs.  Your body attempts to counteract the effects of gravity by increasing your heart rate and constricting blood vessels to promote the flow of blood back up and deliver oxygen to the heart and brain. However, in those of us with faulty autonomic nervous systems, this function does not work correctly and we have difficulty delivering blood back up to our upper body.  The body then almost enters a state of panic, the heart starts to beat excessively, and adrenaline may be produced.  The diagnostic criteria for POTS is an increase in heart rate of at least 30 beats per minute, or a heart rate of over 120bpm, within 10 minutes of standing. For those of us with POTS, it feels as if we are constantly running a marathon, every day. Although the diagnosis revolves around heart rate, it is just one of the many symptoms of POTS and the easiest to measure.  Other symptoms include:

  • fatigue
  • tachycardia
  • headaches
  • lightheadedness
  • dizziness
  • heart palpitations and chest pain
  • nausea
  • exercise intolerance
  • cognitive impairment (brain fog)
  • insomnia

Although these are among the most common symptoms, POTS patients can have a wide variety of symptoms. I tend to have a sensitivity to light, noise and vibrations. Because it is a “syndrome” and not a disease, most cases of POTS have a cause. Causes can include other illnesses (particularly autoimmune, lyme, mast cell diseases or Ehlers-Danlos Syndrome), pregnancy, vaccinations, viral infection, serious accident or deconditioning. In fact, NASA astronauts returning to Earth develop a temporary case of deconditioning POTS after being in a weightless environment for an extended period. I still do not know definitively what caused my POTS. I’m fortunate that I’m still able to work, as many people with POTS are unable to work or attend school. However, I can only work part-time, and there are not a lot of part-time positions available for attorneys. Career advancement isn’t a priority, or a likelihood, for someone with a chronic illness.  I am often frustrated by how hard I worked throughout college and law school, just to end up sick. I can’t stand for more than a few minutes at a time before becoming dizzy and lightheaded, and can even become symptomatic when sitting for prolonged periods of time. I realize now how I took the simple act of standing for granted before I became sick.  Sometimes I become envious of the people on t.v. and in magazines who are standing, confidently, and don’t look like they are about to fall over. I don’t remember what that’s like. I’m unable to participate in many of the social activities for people my age (35) – I can’t stand around for long, so things like bars, concerts and malls are a no-go.  Loud sounds, flashing lights and vibrations can cause an exaggerated adrenaline response, so I avoid movie theaters and overly crowded restaurants. I am intolerant to heat, so beach days, hiking, or other outdoor activities are often not a possibility. I feel as if I’ve become the opposite of the fun-loving, adventurous woman I used to be. Although my symptoms are not necessarily any better than when I was first diagnosed, there is a level of confidence that comes with experience. I know my limitations and plan my activities around those limitations. The fear behind every chest pain, palpitation and blackout has been replaced with the understanding that they are just a part of my situation now. No one prepares you for what it’s like to become sick, to have your life change in a single moment. I am so grateful to all of the other health bloggers, regardless of whether they have the same illness, and to Kathryn and her book Allergic to Life for teaching me how to live with a chronic illness.  It is very comforting to know that I’m not alone. Lindsay welcomes anyone with questions about POTS/Dysautonomia to reach out to her via email. Her email address is Lindsay@dysautonomiac.com.  Please also take some time to go to her blog and learn more about Lindsay and her struggles.

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6 responses to “My Life With Dysautonomia

  1. Reblogged this on Musings of a Dysautonomiac and commented:
    Hi all,

    Today author and fellow health blogger, Kathryn, allowed me to write a guest post for her blog, Allergic to Life. Please check it out at the link below, and while you’re at it, learn more about Kathryn, her struggles, and her book Allergic to Life.

  2. What a great explanation of POTs. I had this for so many years before I knew that I had Ehlers Danlos Syndrome. I sure wish the doctors had known 🙂 Thanks for this wonderful post!!!

  3. Love it when two bloggers I love also love each other – small world (wide web!)

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