xxParkerxx Posted September 16 Report Share Posted September 16 Prefacing this by saying I'm really brain fogged and overheated right now. Sorry if its not the most cohesive. I was diagnosed with POTS in 7th grade (spring of 2021). At first, my symptoms were pretty mild. I had dizziness upon standing, would get really nauseous, and sometimes be disoriented. I unknowingly had blood pooling. Just over a year later, in 8th grade (spring of 2022) I was diagnosed with hypermobile EDS which I've had all my life since it's genetic. They think I have a low blood volume and that combined with the blood pooling is why my hr spikes. Anyway, at first, my symptoms weren't super disabling, just annoying. I stopped playing soccer and switched to gymnastics. I also began wearing compression socks at the recommendation of a gymnastics coach who also had hEDS and POTS. I went to a very small middle school (300 kids in the whole school if that), so they were able to accommodate pretty much anything without a 504 or anything and I wasn't missing any school other than for doctor appointments because of it. So we get to freshman year. Still wear compression socks, upping fluids and salt, eating small meals spaced out when I can. Great. Except this year I missed probably 10-15 days of school. None of that was for appointments. Between all the times when I was too dizzy/lightheaded and off balance, migraines, and the times when I got sent home for being too dizzy, I missed a lot of school. I made it through the year without passing out though. I also developed heat intolerance during this year. At the start of sophomore year, I was really dizzy. I also had a raging ED so that probably didn't help a lot. In October I got sent to an RTC. They took my compression socks because I needed medical clearance. By the time the gave them back, I was in a flare. Despite pumping in fluids, electrolytes, and salt, I passed out 3 times in 3 weeks. This was the first time I had ever passed out from POTS. So they called my cardiologist who I hadn't seen since 2021, and I was put on 25mg Metoprolol Tartrate 2x/day. That helped. I haven't passed out since. Not even during an ED relapse. So here we are, a month into junior year now. I'm used to being dizzy for a week at the start of the schoolyear as I adjust, and then things leveling out. But this year for some reason I was okay (the year started August 14th) until about a week and a half ago. I only attend school 4 hours/day because of mental health reasons. I don't know why this flare is happening and I guess I just need advice on how to manage it. I'm doing everything I know but maybe I'm missing something? Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 16 Report Share Posted September 16 @xxParkerxx Welcome to the forum! I am sorry you have to deal with all of this. You mention you recently got worse again - it is possible that this is due to weather related changes. Every Fall my symptoms get worse due to sudden temperature and barometric pressure changes. All I can do for that is ride it out the best I can, and not push myself to do too much. Unfortunately flares and crashes are a part of POTS, and most of us enjoy better times and endure worse times. Hopefully your symptoms will level out soon. Hang in there! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 16 Report Share Posted September 16 Welcome to the forum. You mentioned fluids but wondering if you are getting IV fluids? That can help a lot when in a flare up. Like Pistol said sometimes flares can be very disabling and all you can do is ride it out until things improve again. It's important not to push yourself beyond what you can do during a flare because (in my experience) that can make things worse. So sorry and hope you feel a lot better soon. Quote Link to comment Share on other sites More sharing options...
xxParkerxx Posted September 16 Author Report Share Posted September 16 1 hour ago, MomtoGiuliana said: You mentioned fluids but wondering if you are getting IV fluids? My pediatrician (who does most management at this point) is hesitant to do IV fluids because I'm only 16. Also my mom refuses to drive me to "unnecessary medical treatments" so there's that too. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 16 Report Share Posted September 16 It might be helpful to get a second opinion from a specialist if you are this unwell. Quote Link to comment Share on other sites More sharing options...
xxParkerxx Posted September 16 Author Report Share Posted September 16 1 hour ago, MomtoGiuliana said: It might be helpful to get a second opinion from a specialist if you are this unwell. I actually don't know if there are any in my area. My cardiologist is a general pediatric cardiac surgeon who had never seen POTS and only heard of it before seeing me, so he had to do some research about it. I will definitely bring up a POTS specialist though. My pediatrician is an EDS specialist so I would think she knows a decent amount about POTS though. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 17 Report Share Posted September 17 I agree that an expert in EDS likely is well-versed in POTS/dysautonomia. Sometimes underlying issues are found that if treated help--like allergies, food sensitivities, vitamin deficiencies, etc. If this has not been explored it might be something to ask about. Quote Link to comment Share on other sites More sharing options...
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