PANs

I understand that fear all too well. I am also alone for a majority of the day. I have some ways to put my family's and my mind at ease though. There are apps that you can have on your smart phone that can "check in" with certain people or even call 911 if you feel yourself having an aura. Alert- Family SOS Button by HelpAround Inc is one I have used before and can even be linked to apple watch in case you're like me and don't have your phone on you at all times. Just press a button and it will send a notification to the people you list. Another is iMedAlert by Divoti Inc. I haven't used this one, but it looked okay. They are both FREE. There are also applications that you can check in when you take your medications. If you're like most people with pots, I'm sure you're taking more medications than you'd like, and most likely at least one 3x a day. There's an app called Medisafe Free Pill Reminder by Medisafe Inc. It's a free app and works with apple watch as well. I've used it before as I used to be bad about taking my medications regularly. On this app you can keep track of when you take your medications but the handy thing is you can link a friend or family member if you don't check in that you take it. If you're passed out or have seized around the time you would normally be awake to take your medications, it will automatically alert them that Hey! They need to take their meds! So if you don't check in to take it because you're in trouble someone will know and can check in on you. It seems like a lot, but trust me I have felt the fear you feel now. I have fallen, seized, aspirated all at home by myself. It is scary, but there are ways to make yourself feel at ease. I hope this helps you!

That was my thought initially, and it still frustrates me. However, I have to remind myself that there are so many things to learn in medicine even in one person's specialization. No one can learn everything. The body is very complex, and in truth POTs shows so many symptoms that cover so many different organs that I suppose it would be hard to pin point it at first. Also consider it was recognized in 1993, and in my opinion that's fairly new. It's hard to stay updated with everything as medicine advances so quickly these days. I try to understand, but I agree it's hard some times.

Glad that you also received an answer! And yes! ANSAR was the test I had taken. Seems so simple for the amount of trouble it took to get this far. But yes, it is embarrassing looking back. I'll be honest I'm a bit bitter with some people, but I'm moving forward as I feel better.

Hello, My name is Amy, I am twenty three. I have been diagnosed with POTs and epileptic seizures. I have been an incredibly active person my entire life, but have slowly felt it become harder and harder to do almost anything without feeling total exhaustion. I would run, swim, mountain bike, play sports, and even took martial arts for many many years. POTs has changed my life in a lot of ways, though it didn't just show up for me. I have had symptoms of POTs since I was a small child, at least six. While being diagnosed with ADHD, the EEG showed I was having severe migraines, but I never complained of them. I would complain of vision problems (blurry vision, trailing images/palinopsia, vision blacking out), stomach cramps and ulcers, swelling and cramping in my legs, feeling tired and achy, etc. All of the usual symptoms of POTs. I was basically shrugged off as wanting to get out of chores, school, etc or told it was my imagination. However, when I was fifteen I came down with mono, and from then on the symptoms became intolerable. I began passing out almost daily. I felt sick and weak. I went to several doctors and they all said I was fine, gave me IV fluids (which I find ironic now) and sent me home. I've had doctors straight up call me a liar, attempt to send me to psychiatric hospitals for "conversion disorder" and "psychogenic seizures." I've had a doctor let go of me when I could barely stand in an attempt to see if I was faking it (banged my head on the floor and seized because of it). I'm sure everyone has had their bad times with doctors, but it still frustrates me. I was tired of hearing it, and refused to believe it was in my head. I stopped looking and just dealt with it. The passing out later started triggering my seizures and I was beginning to have them on a daily basis. It wasn't until I was 20 that my doctors actually started looking into it more. I was in phsyical therapy after being in the hospital for two weeks from status epileptics (back to back seizures). The right side of my body wasn't working and I had lost a lot of my right peripheral vision and had severe speech issues. He noted that my feet were turning blue purple and sent me to get it checked out. I was tested for everything AGAIN and sent back. I was really just ready to give up. I had just moved and I was seeing a new neurologist and was eventually referred to a clinic in Bartlett, TN. It took ONE appointment to have my answer. A twenty minute test. That's it. I was diagnosed with POTs at 22 after seven years of suffering from passing out, seizures, pain, and just feeling like trash. I have been on medications since April of this year, and I am already feeling a significant difference in my health. I'm down to one seizure and month! I wanted to meet people who were in a similar situation as me. It's hard to talk about the frustrations of POTs with people who think it's no big deal. I get "you don't look sick" and "but you get to stay home all day and do whatever you want." I hope to find that here as well as some better ways to improve my health.

You're not alone with this. I have frequent seizures because of my POTs, but also have predisposition to seizures. From what my neurologist has told me is that any time your brain is lacking blood/oxygen there is potential for seizures or events that closely resemble seizures. I've had many many less seizures since my diagnosis with POTs and introduction to blood pressure medications and such. Went from having at least one a day to one every month just from starting POTs treatment (and still taking the same anti epileptics before and after starting POTs medications). That alone makes me think that it can very well cause seizures. I would be too concerned though... pretty much the same thing that can happen when you're passed out from POTs can happen if you're seizing, and there's little difference in how you should take care of someone in that position. Other than making sure you're on your side, everything else is virtually the same. Make sure they're in a safe place, make sure breathing is regular and on their side, and wait it out. Unsure how it is with you, but I've also noticed that if I have a seizure my POTs symptoms are usually worse the next day. Take it easy and rest.