I'd Like to Know That I'm Not Alone

I have these episodes. I don't know what else to call them other than that. It happens multiple times a day. My vision gets blurry and my breathing gets heavy. My throat gets tight and my heart starts to beat heavily. I feel really faint and my arms, legs, and neck feel really weak and my face goes almost numb and my jaw feels like it's going to go slack. I just want to go lay down but I never do, I try to push through it and pretend everything is fine for my family, they don't understand and seem to think I'm milking this whole "Being sick" thing. I don't know... I guess I just need to know I'm not going crazy. Does this happen to anyone else? Is this a Chiari thing? Is is serious? Is is something I should be freaking out about or should I just let it happen and be done with it? Is anyone else dealing with anything like this? Can anyone give me anything for me to take back to my family? Thank you so much for reading and responding to this. I'm so sorry to have taken up your time. Have a good day.

Bethanie, you are not alone with these episodes. Many of us suffer with dysautonomia, a deregulation of the autonomic nervous system. It’s thought to brought on by damage to the vagus nerve (from the Chiari) and presents with symptoms much like you have described. POTS seems to be the common form of it with Chiari. I have POTS and innapropriate sinus tachicardia. Dysautonomia symptoms are terrible, feels like death. There is a test for it, though, and medications that can help tremendously. You need to see a cardiologist and take a tilt table test. I take a beta blocker everyday for this - it has reduced the symptoms by about 90%. I’m sorry your family is not being supportive- if they only knew…in the past when I would have an attack I had to lay down, sometimes for an hour or more.


Thank you for your response Jenn and Abby. After reading about POTS I thought that it made perfect sense, and now with a little added validation I can bring this up with my family. It is a little confusing because when I told my neurosurgeon about it he said it wasn't part of my Chiari, that it was migraines and vertigo. He then sent me to a neurologist who put me on Topamax, which hasn't helped me very much, if at all.

Definitely not alone girl!!! Life feels like that and many times our symptoms make people look at us like "REALLY!?" That is a pretty universal thing. Sometimes our families eventually understand that this is REAL. If your NS/NL won't even look into the POTS, ask your GP to. From what I've read up on it's treated with regular medications. I am going to talk to my NS/NL about it tomorrow.

Side note---isn't it great to have validation and be with people who understand without a whole lengthy explanation!?

Ik it’s fantastic. People understood what I meant immediately. Such a relief.

Definitely not alone! These episodes make me also question my experience in my own body but they are real. It's like the main supercomputer in my body is getting bad information and the whole system just freaks out altogether. Thank you for sharing. We all need reminders we are not alone.