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Writer's pictureBecky

10 Years Too Late

4 years, 4 years is the average amount of time it takes for someone with a form of dysautonomia to be diagnosed. Dysautonomia is an umbrella term for a group of conditions characterized by the malfunction of the autonomic nervous system, which includes but is not limited to the regulation of body temperature, heart rate, and blood pressure (dysautonomiainteration.com). It took me 10 years, 10 years of living with symptoms in my childhood and adolescence that made me think before I decided to participate in an activity. How hot is it outside? How have I been feeling today? How strenuous is the activity? Will my family be there if I have an episode? And my case is not as severe as many. October is Dysautonomia Awareness Month and I would like to share my story with POTS, Postural Orthostatic Tachycardia Syndrome.


https://www.naughtylittlemastcells.com/infographics/

I was finally diagnosed with POTS as well has Joint Hypermobility Syndrome in April of 2017. The first major pre-syncope episode that I had was during a soccer game when I was about 9, I did not really understanding what was going on but felt really ill, weak and I remember being so hot. Another major episode at the state fair that I believe about a year later I remember feeling like I was going to be sick, unable to walk and my mom carrying me to the infirmary where it was air conditioned where I laid in one of the beds feeling like I couldn’t move. Thankfully with some gatorade I improved some as they were going to send me to the ER for IV fluids if I didn’t improve fast enough.


In-between these episodes I did have weird unexplainable symptoms. A few I distinctly remember (and still experience at times) were if I stood still too long my legs would get very itchy, purple and orange blotchy, I would get the same itchiness and blotchiness after a shower, I would also “black out” upon standing and lose my vision, I also often felt lightheaded and dizzy upon standing. After the second episode I went to the doctor for the first time about the issues, they were quickly passed off as “not a big deal” and “some people are just weird like that.” The episodes were explained as just being from dehydration and heat.



As I grew up I had more and more episodes typically during exercise and/or with the heat in the summer. My family and I learned that I needed to always have water or gatorade with me and to be prepared for episodes which included not doing anything strenuous in the heat. Over the years I noticed my heart rate was always really high, my blood pressure was low when I would go to the doctor, yet despite probably half a dozen doctors appointments about these issues I was just told it was because I was skinny, and I didn’t drink enough water.


At 17 I had another appointment after symptoms had become a major issue with gym class where I was very close to passing out after many classes, and it didn’t make any sense to me, people who were in worse physical shape than me could do finish the workout when I, fairly physically fit, was on the ground too weak to stand back up without fainting. I was also experiencing a lot of heart palpitations, but these were written off as anxiety because I already had mental health diagnoses, despite me knowing they were very different.

At this point the doctor ordered a stress test and even the tech who preformed the test noticed that my heart rate jumped when I stood up and then wouldn’t go down when it was over, yet the test didn’t show anything major and the issue was dropped.


https://www.naughtylittlemastcells.com/infographics/

Another year later and my doctor performed a standing test (which looking back when he told me the hr and bp readings it showed signs of POTS or OH but nothing was said at the time) but once again just told me he wasn’t worried because I was female, and skinny, and basically it isn’t that big of a deal, I just needed drink more water and maybe add some more salt to my diet (okay so the treatment is getting closer here but I am still not taken seriously).


It was after I began psychotropic meds at 17 which affected my blood pressure and caused increased tachycardia that my psychiatrist that suggested an adolescent socialist that dealt with a lot of similar issues I explained to him. After a 6 month wait time I finally went to the appointment and people actually listened to me and believed me, it was an amazing feeling to not be brushed off. I honestly felt like I was in Grey’s Anatomy when the medical student (it’s a teaching hospital) came in, went over my whole history with me, discussed symptoms, etc. and said “Well that’s weird but don’t worry we’ll figure it out, we won’t give up on you!” I didn’t think I would ever hear those words expect on a fictional medical drama. The doctor came in and was more than I could have hoped for, she immediately connected the joint hypermobility and orthostatic issues and diagnosed me with a beighton score and standing test. I was started on Midodrine, given a prescription for compression stockings, lifestyle changes and diet guidelines.


https://www.naughtylittlemastcells.com/infographics/

I walked out of that appointment with my mom and actually cried in the parking lot I was just so happy that someone finally believed me, and knew it was something more than dehydration and being skinny. I actually had a diagnosis, I knew it didn't make everything better but at least it had a name and I finally knew I wasn’t making it up in my head, I could actually start treating the symptoms. I don’t think I stopped smiling for hours after walking out of that appointment, finally understanding what had been going on with my body for the past 10 years.


10 years that is how long it took me to get a dysautonomia diagnosis, I first saw symptoms at age 9 and was diagnosed not long after my 19th birthday. There is a saying that dysautonomia is not rare it’s just rarely diagnosed. For 10 years my doctors never recognized my symptoms as dysautonomia and almost every doctor I have seen since the diagnosis doesn’t know anything about POTS. There needs to be more awareness and education about this in the medical community, doctors need to start believing patients and taking their symptoms seriously, just as the doctor I finally found believed me and searched for an answer.



My dysautonomia symptoms are not always severe and disabling, it is always worse in the summer, but it is something I have to consider when choosing to do a physical activity or anything in the heat. In the past I would get nervous to go workout without a friend or family member as if I were to have a pre-syncope episode I wouldn't have anyone I know to help me. Although I do not always need Huxley to do tasks for my POTS, as I am fairly adept at noticing the early symptoms that allow me to predict an episode, but when I am most symptomatic or if I want to work out I feel so much more comfortable having Huxley there with me. We are working on heart rate alerts and although they aren't perfect yet I really do trust him to alert me if something were to really go wrong. I also never feel like I am alone with him so I am comfortable to work out by myself and trust that even if something were to happen I know he would take care of me and could get help if needed. This provides independence that I didn't even know I needed and it's pretty amazing to feel comfortable going out alone.


For more information on dysutonomia visit: http://www.dysautonomiainternational.org

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