RM17

Hi everyone. Just stumbled on this page, and thought I would share my story and how I have begun to feel relief. I’m a 21 year old male in pretty good shape. Attend college, always low on sleep, and usually busy or in the gym. Last December while vacationing with my family in Florida, I became very ill with flu like symptoms. I had chills, fever, couldn’t walk, the sun bothered me, overheated throughout the day. I either had the flu, mono or a really early case of Covid. Most likely the first two. After about a week, I recovered from the flu like feeling and was back up and about. There was just one little nagging thing that was bothering me... I was constantly lightheaded and felt like I was about to faint. Seemed normal enough after a bad cold or virus. So, let it go, and returned to college. In January and February it got so bad, I had to skip classes and lay in bed as I was so lightheaded and couldn’t concentrate longer than 20 minutes. I told my parents who brushed it off until in late February I got my worst test score ever—now they were concerned! March came the lockdown, and my lightheadedness and faint feelings continued to get worse. I saw a neurologist virtually who diagnosed me with chronic migraines and vestibular symptoms. Seemed reasonable, and I did believe in the migraines, but knew in my heart there was something else causing my off balance and lightheaded feeling. I did the research, poured over google (horrible for anxiety) and finally looked at a calendar. Until this point it hadn’t occurred to me that I felt fine before my trip to Florida. It wasn’t until after that this pesky lightheaded feeling wouldn’t relent. I begged my parents to let me see a cardiologist. I wasn’t sure exactly where I fit, but I had an apple watch that showed my blood pressure skyrocketed when I went from laying down to standing. I felt fine laying down, that’s why I stayed in bed all of January and February. The transition and time standing was causing problems. Finally, I convinced my parents, and we squeezed into a 1/2 hour appointment with a top cardiologist. She was amazing, and asked me to tell my story from the heart and what I thought could be wrong. After I finished describing the feeling of fainting, but never actually fainting and the constant lightheaded feeling, she took off her glasses and said to my parents and I: “Your son is right. Something is off. I think I know what it is, but we can do a test to confirm. When can you come in for a tilt table test?” We looked at each other. A Tilt Table test? What on earth is that? We scheduled for a week later, and the more we read the more I believed it... I had POTS. I had seen this before in my google searches, but it said it was rare in younger men, and that it could occur for women, specifically around menopause. That couldn’t apply to me, so I brushed it off. After the tilt table test, I looked at the technician (not a doctor) and said: “Gut feeling, what’s it look like?” She said, “good and bad news. You have an answer, but it might take a while to fix.” It was POTS. My cardiologist called the following day confirming the diagnosis. She said I would need to be super active and collect around 8,000 steps every day, drink 2-3 liters of water every day, and take medicine day and night without drinking alcohol. College student giving up alcohol? She asked me that in a concerned tone, I hadn’t heard from her before. “Are you willing to do that? I know it stinks socially, but this will help you get better.” She peered through the screen genuinely interested in hearing my response. I paused. “Yes. It stinks. But, I’ll do it, because POTS is worse.” We have a deal she said. Mestinon and these steps for 6 months and you will improve. Before she closed out of the Zoom meeting, I asked her one final question. “How can you guarantee I will get better? Isn’t this out of our control if and when it improves?” I asked hoping for an answer I didn’t expect. “The problem with POTS is people don’t get taken seriously or diagnosed for years. Doctors are skeptical of symptoms and brush them off as anxiety, stress or depression. From the moment I talked to you I believed this was what you had, and it was triggered by a viral infection. You pushing your parents to get a proper diagnosis, starting this medication now, following my guidelines works for every patient I have ever treated with this. You are right I cannot guarantee you will get better because tomorrow isn’t a guarantee for anyone. But, you were determined to diagnosis and begin fighting this, I’m an expert, and I think you will be back to 100% next summer. The final thing I will say is keep being positive. I know it’s tough, and POTS isn’t life threatening but it makes life challenging. POTS is an autonomic nervous system disease. The autonomic nervous system is your fight or flight response. If you believe your body will improve, that’s half this battle too.” I closed the Zoom link pleased. I had a name, a diagnosis, medication, a plan of attack, a doctor I trusted, and a statement of affirmation from her that this could be overcome, and beaten. So far, I am on Week 3 of Mestinon, and I’m already feeling much better. Not cured. I still feel faint and lightheaded more than I would like. But, I have been able to walk (no running yet) 4 miles for the first time since December. To anyone reading this... I get it. Nobody but the people who have this understand it’s an invisible illness. I’m fortunate to have age, medication and a great doctor on my side. If you think you have it, but aren’t sure, find out. It’s more common than you would think especially triggered by viral infections like flu, mono or now covid. There have been dark days where I wasn’t sure I still wanted to be here. There still are. It’s tough to share this my friends who wonder why I can’t drink or take more medications than their parents. I hear the “you look great though” all the time. I would trade my six pack for a POTS free life any day. Here is the positive... this isn’t a death sentence. It is challenging, but it can be managed and overcome. My doctor believes I will get back to 100%. I choose not to even entertain the other possibilities. Realize that we have a terrible thing, but it isn’t cancer. It’s not a fatal disease. We have hope. The biggest challenge throughout this has been convincing my parents I had something wrong with me that they said only affects teenage women. Not true. The other challenge was getting a doctor to believe me. I love my GP, but the dude thought I might have vision problems. My vision is 20/20. So, you know your body. You know it best. Trust it. Find a good doctor that you trust, and then stay off google. Hope this helps/inspires someone to not give up. Seize the day. RM