Dysautonomia: Making Life Crazy One Day @ A Time

I don’t generally bring up my dysautonomia on here, but it’s something I struggle with – on some scale, at least – nearly every day. When the weather gets on the warm side, especially, my autonomic nervous systemic really begins to bug out and makes life a really hectic roller coaster. So, that begs to question then just what drug this topic out from the dusty recesses of my mind (and from the last time this blog was updated – my rather busy and distracted mind at that).

Jeanne over at Chronic Healing has been doing an excellent series of posts about Postural Orthostatic Tachycardia Syndrome (POTS), a form of the broader (or as my former Endocrinologist loving referred to it “the umbrella”) termed Dysautonomia. Dysautonomia is really just a simple way of saying your autonomic nervous system is malfunctioning. There are various forms, but the general underlining symptoms tend to be the same.

• They tend to be very thirsty (why my Diabetes Insipidus was over looked for 3 yrs)
• Very tired
• Prone to dizziness and vertigo
• They will have episodes of panic with no psychological reason
• They can suffer from a rapid or a slow heart and can alternate between the two rapidly
• They can experience syncope

Let me assure you that these symptoms, when experienced for the first time, are extremely frightening. When people tell you it’s all in your head, this only compounds the problem.

But let me begin this post with how I learned my life would be lived one crazy day at a time. I was 15, in high school, in top physical condition. I was in the Air Force R.O.T.C. I ran two miles twice a week; did 1oo push-ups and 100 sit-ups a day. We marched a mile once a week on top of that! Then one day, one frightening day, I couldn’t make my heart stop beating. I was in Biology, just sitting there. We were hearing lecture and my heart started racing. Then I couldn’t breathe. When I stood up, I got dizzy and the room went white. Then moments later, I woke up in a pile of sweat. I had passed out.

I went home, but my parents didn’t make the situation easier. They said it was “my nerves.” They said I had always been a nervous child. I had passed out before. I could remember fainting a few times in Middle School but it was always in Physical Education – during football, or while running laps. The nurse said I was over heated, exhausted, or hungry. I would cool off, get a snack, go back to class and be fine. This felt… different. But my parents didn’t listen. The next day I went back to school even though I felt like crap. A few days later I saw my doctor so I could be cleared for R.O.T.C. He listened to my chest, then he listened to my account of what happened. My dad told him I did this sort of thing all the time. Then the doctor listened some more – to me and my chest. Then I remember his words – “I think we need to send her to a Cardiologist and get that mitral valve checked out.”

What mitral valve? I knew what a mitral valve was. I had just spent the last 5 years of my life wanting to be a doctor when I grew up and swearing I was going to go to Harvard. I read medical text books and journals, devoured them. But why was mine needing “checked out”? That’s when he told me I was born with mitral valve prolapse heart murmur. It was on my chart. My dad never bothered to tell me about it. He had even forgotten!

I was subjected to prodding and needle sticks and all sorts of fun and missed school. They did a Tilt Table test and it revealed the culprit – Mitral Valve Prolapse Dysautonomia. I tried medicine, but it was vile and I couldn’t tolerate it. It made me pass out more! Eventually, they prescribed the following regime and it worked out great. The doctor told me to drink 2 cups of strong coffee in the morning upon waking up – no more, no less. Then no more caffeine and drink plenty of water. Once I got on that regime, I was fine. The strong dose of caffeine – something dysautonomians are usually told to avoid – acted as a jump start to my heart that would go slow in the morning and cause me to drop when shortly after waking. This jolt helped me get through most days.

I was just dandy for a very long time. I told dentists I had MVP and was pre-medicated before any treatment, something we don’t have to do anymore! I told every doctor I had an MVP, but eventually I forgot to mention dysautonomia because I forgot I had it. I forgot because it didn’t bother me. I didn’t have panic; I didn’t have fainting spells. I was… normal. I drunk my coffee and water because of my heart murmur. That’s all I remembered.

Then when I got pregnant with my son, I was shopping at Best Buy with my husband and his family. It was such a normal day and I felt great. I had the big belly (about 7 months) and was eager to see him into the world, and then it happened – I dropped right there in the middle of the computer section. Everything went white and the next thing I know there is my husband and father-in-law standing over me, helping me off the floor. I don’t think anything of it because pregnant women faint all the time, right? My mother-in-law said she passed out from the heat all the time, but it’s October. My doctor isn’t concerned, so I don’t worry. He says to take it easy, I’m probably just pushing myself, but that’s when things begin to go down hill. A week later I develop the “nerve itch.” It began as a dry skin type of itch that ordinary over-the-counter cream wouldn’t touch. The doctor prescribed benadryl and then something stronger. Still the itch wouldn’t go away. I was scratching myself raw and sores were presenting. I looked like I had scabies, but the infectious disease doctor couldn’t find any disease – lice, scabies, ANYTHING. He told me doctor it was PUPPS, or pruritic urticarial papules and plaques of pregnancy. PUPPS is an intensely itchy rash that only 1% of women get during their third trimester of pregnancy and doctors don’t know what causes it, they only have theories. It was so bad, I didn’t want to have any more kids. The prospect of suffering through this again, would have made me want to kill myself. It was that bad. I was put in the hospital, pumped full of steriods, and the rash dulled in appearance but not in itching intensity. I was in agony and my nervous system was taking a toll on me. I was dizzy but this was said to be from the stress.

Then when I got pregnant with my daughter, all hell did break loose. Doctors warned me not to get pregnant again, but did I listen to them? Ha. At 12 weeks, I began passing out. I couldn’t get out of bed in the morning without dropping to my knees. My heart rate dropped into my toes then shot into my throat in the matter of seconds! I felt sick and panicky for no reason. Slowly it occured to me, I had felt like this before. When I was 15. I told my OB but she was all “pregnant women pass out… blah blah blah.” But thankfully her partner listened. He sent me for a cardiology consult to be safe. I was right, it was MVP again. I had to endure an entire pregnancy wearing compression stockings, and it was awful. I had to drink a certain amount of water and was told to maintain a high sodium diet during my pregnancy to keep my blood pressure up. I later learned my cardiologist advised my OB that I should have had a C-Section around 34 weeks to insure my safety during birth, but this was disregarded. My baby was barely caught by my doctor – I didn’t even push, she just shot out of me like a canon ball. My labor was very stressful on my body! I ended up with these crazy migraines, thyroid problems, and diabetes insipidus.

Then last summer I missed a whole summer of work because of dysautonomia. It got so severe that I couldn’t even stand at times. I would pass right out, without any notice. And a new thing began to happen, I would get episodes where I would stare off into space and just blank out. When I came to I would remember it. I would get upset and shake, this got easier with time. I haven’t had one of these in a very long time, thank goodness. I hope I never have one again. They are very scary. But the smoke smell came during that summer, as well. I began smelling a phantom smoke smell last April that no one else could smell. It would come on randomly, and at times, very strongly. Sometimes it lingers off and on all day. Sometimes it’s just fleeting moments. Sometimes I won’t smell it for weeks, and then it’s there for days on end. I use to know these as warnings that I was going to blanking out soon, once I realized there was a correlation. But now I get it and nothing follows!

I deal with the vertigo and the heart beat changes on a daily basis. I have for a long time. Once you become accustomed to this conditioned, you learn the best way for you to control it. You learn what you can and cannot do – how far you can push yourself. Yesterday, I was supposed to go hiking with my sister. My sister got sick. This was a God send. I went to a movie (by myself, so peaceful) and just going from my car to the movie theater and back in the sweltering heat was enough to do my system in. My heart was racing, my body was swerving. In that moment, I realized I was mad if I thought I could have handled 5 miles of rugged trails in that heat. Sometimes, I over estimate my own limitations. And then sometimes, I just want to forget I have limitations.