I had originally thought that I would write a short paragraph for each day I was in Arizona describing the events of the day, leading up to the last and final appointment where I would have an all encompassing diagnoses and plan for how to fix it. In my mind where I like everything to be organized and for stories to have a start and a finish, it made sense. But my trip down to the Mayo Clinic is not a story, nor is it something that even had a definite start so the “end” would not likely be instantaneous either. Also having ended up being there for almost a month it would make for a lengthy story if each day were allotted a few paragraphs.
With the fainting taking over my every decision my world became very small. Before I did anything I had to think of every possible way it could go wrong. Could I stand and walk to the bathroom without asking mom to sit outside the door just in case I passed out? Was it worth it to eat my favorite Chick-Fil-A salad if the price tag was 15 minutes of unconsciousness and an hour of stomach seizures? Should I let the well-meaning friend come over to visit even at the risk that they may see me black out? It’s been 30 minutes, have I been sitting up right too long? Even with over thinking every action I could not possibly avoid the 5-12 episodes of fainting a day. Which is the reason I ended up at the Mayo Clinic in Arizona for 3 ½ weeks.
The initial appointment went really well, and for the first time in years no one wanted to evaluate me from a psychology standpoint. After that it was slow going. We had to wait for more than three days for the insurance to approve all the tests and other consultations that the first doctor wanted to do. To add to that it was November and according to the scheduling department it was their “busy season”. Who knew a clinic/hospital had a busy season? They told me it was all the snowbirds escaping to Arizona’s warm climate for the winter. That made more sense when I saw the waiting room and realized I was the one patient under the age of 65. So while the other patients were collecting their retirement I had to wait. And wait. And wait. Finally things were approved and we got started. They did lots of tests, looking for things I’d never heard of. Some were painless and others ranged from uncomfortable to highly unpleasant. As I got the tests done we were able to check the results on my online record and as always everything was coming back normal. The consultations were mostly non eventful, with the doctors acknowledging that I had a problem but it didn't fit into their very specific set of expertise.
I found that every other day I would break down and think “I can’t do this and plus it’s not worth it, they never find anything!”. Through a roller coaster of hope and disappointment they did find something, P.O.T.S. (Postural Orthostatic Tachycardia Syndrome). If you Google that Wikipedia will tell you that you can get it from getting a virus as a child or having rapid growth as a pre-teen/teenager and that if it’s the latter you may grow out of it in your early 20’s. Before you get excited, for me its not the second one seeing as the first episode started at around 18 months. I don’t know if it was from a virus either actually. P.O.T.S. falls under an umbrella of syndromes that can be connected with Dysautonomia, in short that means that your autonomic nervous system doesn't function correctly and the symptoms can present themselves in many different ways for different patients. I haven’t been diagnosed with Dysautonomia officially but it’s something that is on the table for discussion when we see the Neurologist that specializes in that sort of stuff when we revisit in April. It was a bummer that we weren't able to get in with that doctor while we were there but we had already missed Thanksgiving and I was not about to miss Christmas too.
After the P.O.T.S. diagnose the doctors were still wanting to look for more because it doesn't explain all of my symptoms. P.O.T.S. patients don’t often pass out when lying down, actually they never do. The main symptom with P.O.T.S. is passing out when standing, either too quickly or just standing too long. “Too long” can be defined differently for each case but in mine, I've only got about 5 minutes maximum until I’m passed out. The reason for this is that when I stand up my heart rate jumps from a normal pace to 50+ beats faster within seconds. My body does this to compensate for the blood flow change that takes place when going from a sitting to standing position. Everyone’s body does that to some extent but mine is over compensating which results in a black out.
I also had some results come back from a test that confirms that my body metabolize some types of prescription medication incorrectly. This can be quite dangerous if I take certain kinds of medications even in small doses, the drug can build up and become a toxic dose because my body isn't breaking it down fast enough. Because of this a medication to help the the P.O.T.S. hasn't been picked yet but is something to be decided.
This new information left me a little confused as to what I could do to make myself more functional. I started working on meditation with my wonderful hosts that were so amazing to take us in for two weeks. The Hammons' (my aunt's in-laws) let us stay at their Arizona home and as if that weren't enough, Dan helped me learn how to meditate and helped release pressure points with myofacial release, a type of massage therapy. He instructed me to envision warmth coming into my abdomen to help with the stomach seizures and was surprised to feel a strong pulse come immediately to my abs. He figured that if I could consciously control my blood flow I could redirect my blood to my head when I felt faint and light headed. I have been practicing this and have found that I can keep myself from passing out as much. It takes a lot of consideration and time but I realised that I'd been doing it all along. I had staved off unconsciousness several times before but I hadn't figured out how I'd stayed awake as long as I did. Unbeknownst to me, while my peers were attending high school, graduating, going off to college, getting married and having babies, I had been perfecting the art of staying alive by influencing something that should be completely automatic.
With the fainting taking over my every decision my world became very small. Before I did anything I had to think of every possible way it could go wrong. Could I stand and walk to the bathroom without asking mom to sit outside the door just in case I passed out? Was it worth it to eat my favorite Chick-Fil-A salad if the price tag was 15 minutes of unconsciousness and an hour of stomach seizures? Should I let the well-meaning friend come over to visit even at the risk that they may see me black out? It’s been 30 minutes, have I been sitting up right too long? Even with over thinking every action I could not possibly avoid the 5-12 episodes of fainting a day. Which is the reason I ended up at the Mayo Clinic in Arizona for 3 ½ weeks.
The initial appointment went really well, and for the first time in years no one wanted to evaluate me from a psychology standpoint. After that it was slow going. We had to wait for more than three days for the insurance to approve all the tests and other consultations that the first doctor wanted to do. To add to that it was November and according to the scheduling department it was their “busy season”. Who knew a clinic/hospital had a busy season? They told me it was all the snowbirds escaping to Arizona’s warm climate for the winter. That made more sense when I saw the waiting room and realized I was the one patient under the age of 65. So while the other patients were collecting their retirement I had to wait. And wait. And wait. Finally things were approved and we got started. They did lots of tests, looking for things I’d never heard of. Some were painless and others ranged from uncomfortable to highly unpleasant. As I got the tests done we were able to check the results on my online record and as always everything was coming back normal. The consultations were mostly non eventful, with the doctors acknowledging that I had a problem but it didn't fit into their very specific set of expertise.
I found that every other day I would break down and think “I can’t do this and plus it’s not worth it, they never find anything!”. Through a roller coaster of hope and disappointment they did find something, P.O.T.S. (Postural Orthostatic Tachycardia Syndrome). If you Google that Wikipedia will tell you that you can get it from getting a virus as a child or having rapid growth as a pre-teen/teenager and that if it’s the latter you may grow out of it in your early 20’s. Before you get excited, for me its not the second one seeing as the first episode started at around 18 months. I don’t know if it was from a virus either actually. P.O.T.S. falls under an umbrella of syndromes that can be connected with Dysautonomia, in short that means that your autonomic nervous system doesn't function correctly and the symptoms can present themselves in many different ways for different patients. I haven’t been diagnosed with Dysautonomia officially but it’s something that is on the table for discussion when we see the Neurologist that specializes in that sort of stuff when we revisit in April. It was a bummer that we weren't able to get in with that doctor while we were there but we had already missed Thanksgiving and I was not about to miss Christmas too.
After the P.O.T.S. diagnose the doctors were still wanting to look for more because it doesn't explain all of my symptoms. P.O.T.S. patients don’t often pass out when lying down, actually they never do. The main symptom with P.O.T.S. is passing out when standing, either too quickly or just standing too long. “Too long” can be defined differently for each case but in mine, I've only got about 5 minutes maximum until I’m passed out. The reason for this is that when I stand up my heart rate jumps from a normal pace to 50+ beats faster within seconds. My body does this to compensate for the blood flow change that takes place when going from a sitting to standing position. Everyone’s body does that to some extent but mine is over compensating which results in a black out.
I also had some results come back from a test that confirms that my body metabolize some types of prescription medication incorrectly. This can be quite dangerous if I take certain kinds of medications even in small doses, the drug can build up and become a toxic dose because my body isn't breaking it down fast enough. Because of this a medication to help the the P.O.T.S. hasn't been picked yet but is something to be decided.
This new information left me a little confused as to what I could do to make myself more functional. I started working on meditation with my wonderful hosts that were so amazing to take us in for two weeks. The Hammons' (my aunt's in-laws) let us stay at their Arizona home and as if that weren't enough, Dan helped me learn how to meditate and helped release pressure points with myofacial release, a type of massage therapy. He instructed me to envision warmth coming into my abdomen to help with the stomach seizures and was surprised to feel a strong pulse come immediately to my abs. He figured that if I could consciously control my blood flow I could redirect my blood to my head when I felt faint and light headed. I have been practicing this and have found that I can keep myself from passing out as much. It takes a lot of consideration and time but I realised that I'd been doing it all along. I had staved off unconsciousness several times before but I hadn't figured out how I'd stayed awake as long as I did. Unbeknownst to me, while my peers were attending high school, graduating, going off to college, getting married and having babies, I had been perfecting the art of staying alive by influencing something that should be completely automatic.
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