Autonomic Dysfunction

Where I'm from autonomic dysfunction is very unheard of, and a list of symptoms down played as either anxiety or over dramaticness made me feel distant. I knew something was wrong, and no one listened or even cared. It took my heart rate averaging dangerous levels to finally get help. I feel so distant, especially when explaining this condition to those who don't understand it. I'm kind of mad I had to spend so much time alone because of it. I'm not really sure what to do or say at this point.

#AutonomicDysfunction #Anxiety #lonely

I'm back home now, the doctors think I had a bad POTS flare up, not sure why. I was also given a prescription for a medicine for vertigo. #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #Dysautonomia #CheckInWithMe #MightyTogether

I fainted at work and had to go home early. Just trying to stay positive. #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #AutonomicDysfunction #CheckInWithMe #MightyTogether

I’m scared of the future. I recently had bad palpitations that landed me in the ER. Everything came back normal except my EKG. They suspect POTS or SVT, but with having Idiopathic Intracranial Hypertension POTS is a common diagnosis alongside it. Plus, it’s worse when my pressure is high.

I also meet the criteria for EDS hypermobile, which would explain the IIH and POTS.

This is good news and bad news. I struggle with health anxiety so much, especially since I went so long going to doctor and not being heard. I was told I’m making it up, and it’s just anxiety.

I feared for so long that something catastrophic would happen because doctors didn’t listen to me.

Now I have to wait till 12/6 to see my PCP and go over the POTS and EDS diagnosis. Then what next?

I’m bombarded with constant intrusive thoughts of fear of what’s next for me. Feeling like a failure because I can’t work, or cook or clean properly. Having such high hopes for my education and career. Now, I don’t know what my future looks like. That’s terrifying.

I just want to be okay. Not great and not bad. Not perfect but not suffering. Just okay.

Recently, (since mid-October) I have been getting some really low heart rate readings. This week it has gotten really bad, and I’m struggling to stay conscious. I swear I’m only a fully awake human for about 4 hours out of the day, usually around this time. I have no idea what’s going on. My two thoughts are 1) maybe I’m aging out of some of my medication??? or 2) my body is DONE with my crappy sleep schedule, and it is knocking me out the only way it knows how!

Have you ever experienced anything like this? What helped? Also, should I be considering going to the hospital??? I never know when things are serious enough to warrant that. Let me know! Any and all advice is welcome!

#POTS #AutonomicDysfunction #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome

Hi, my name is jj0333. I'm here because I am seeking to learn more about POTS and autonomic dysfunction.

#MightyTogether

Hi, my name is Dani, and this is my first time trying to create an attractive username. I hope staring at the stars is good. After four years of looking for answers, I was diagnosed recently with fibromyalgia, POTS, and tachycardia. It has been the most challenging journey I have gone through, but somehow, the lessons that I have learned have made my life richer than ever. Before my diagnosis, I was always running through life and trying to accomplish other people's expectations. Now, I have learned to enjoy the little things, reward, even the little accomplishments, and surround myself with healthy relationships, and I’m still learning that it requires courage to ask for help.

Asking for help has been a kind of superpower for me. Doing so allowed me to continue my college studies and work part-time at a job I enjoy. For many months, I didn’t tell my diagnosis to anyone, and I tried to continue with my life as it was, but soon I realized that I needed help. I needed to slow down and take care of myself. Sometimes, this road can feel lonely, but I know deep inside that we are not alone. At some point, I thought I would not be able to continue with my college or job. I needed to take fewer credits for my semester and ask for permission from my job to go to medical appointments.

For many months, I hesitated to be part of a community. I asked myself if I was actually eligible to be part of one because this illness cannot be seen externally most of the time. Still, a friend recently told me that not every disability is visible .So, again, I’m deciding to let go of my fear and ask for support… being part of this amazing community is part of that!

#MightyTogether #AutonomicDysfunction #Fibromyalgia #POTS #InappropriateSinusTachycardia

Just got back from trick-or-treating with my nieces and nephew. I was having a difficult time because it was crowded and I don't do well around a lot of people. I was walking with my mobility aid on one side of the sidewalk. (At this point the sidewalk was much less crowded than the street and I was trying to stay out of people's way and not bump into anyone.) This family walks by and takes up most of the sidewalk so I was struggling to walk on the edge. I said "sorry excuse me," and was trying to politely pass them without bumping into them. One of them said as they passed me "You should just get out of here." It shocked me so bad, I didn't think I heard them right, but I did. I don't know why it surprises me that people can be so mean. #Mobilityaid #Disability #PosturalOrthostaticTachycardiaSyndrome #POTS #AutonomicDysfunction #Spoonie #ChronicIllness #MightyTogether #CheckInWithMe