EGorman

Hey there all. I haven't been on in a while but I'm having episodes again and I really need to find a doctor. Has anyone found one in the southeast that's knowledgeable? Has anyone been diagnosed using an ANSAR test? Has anyone heard of Paradoxical Parasympathetic Syndrome? Thanks everyone. I usually get bad symptoms every 3-5 years and they last for a couple years but this time it's really bad. Horrible digestive issues this time around.

It can be very isolating. I can't work, so I'm at home alone most of the day, and when I'm have a relapse, I can't even go out with my friends and hang out. 20 minutes in the store...tops.

So lately just about every time I lay down to nap or sleep at night, my hands get super freakishly hot! So uncomfortable that I have to get an ice pack and hold it in both hands to cool them down enough that I can rest. It is sooooo uncomfortable! Anyone else have this or can explain why or what it is from?

so glad you finally have your answer! I went through a lot of the same things: seizures, speech problems, passing out, etc. Unfortunately , I didn't have a good support system until I met my husband. Even my parents thought I was faking and told my siblings so. It was so embarrassing! I am just glad that even though I have no treatment plan because there are no doctors in my area, I at least have a name for all the trouble! Dysautonomia (specifically Paradoxical Parasympathetic Syndrome). All it took was going to a chiropractor for one of my many many headaches, who asked me about all my other symptoms (which I was loath to divulge, not wanting to seem like a hypochondriac). He actually took me seriously, sent me to a neurologist for an ANSAR test, and that was it! I had my answer! Just out of curiosity, was that the test you had done as well? Well, I'm glad you are doing better! Or at least at the beginning of it!

This sounds like it could be PPS!

So I already responded to the message you sent me a while ago, but I also have PPS and sometimes I have TERRIBLE anxiety. I've had it for years. It's kind-of an on and off thing. Message me again and we can compare test results! Mine showed the Parasympathetic result to Sympathetic stimulation and it was off the charts. Literally. The tech said she'd never seen such a high number. Your response at valsava is supposed to be something like up to 100% i think, and mine was 2000%. Haha yeah. That was a fun test. I would be interested to know if you also have any other medical issues. The problem with PPS is that it can make it impossible to treat the other issues you have because they won't respond to medication. I also have Endometriosis, PCOS, and Psoriasis, and I'm going through testing for (possibly) and tumor in my breast.

I was wondering if anyone knows if endometriosis will lead to problems with the ANS (ultimately Dysautonomia)? I have problems with my PPS but other issues are now coming up and my doc is leaning towards Endometriosis. I know some disorders and diseases can cause ANS issues...has anyone heard of this specifically?? Thanks!

Thank you all so much! I will look into these!

I also experience weird patterns. Sometimes (like today) I feel almost completely normal, with only random pains and small moments of dizziness. Yesterday I had to call off my part-time job because I could barely walk. It lasted until after lunch, and then came back right around dinner, and then went away again after nine pm. Weird! Glad I'm not alone. I was thinking that I'm just crazy or something.

I'm always itchy! Sometimes it's unbearable! It keeps me up at night. I know I don't have diabetes, so it can't be from that, but could it be from something that is causing my ANS problems? Anyone else have this issue? I've been like this for just a little bit before my ANS problems started. I'm not on medication yet, so it's not a side effect.

How do you know if your Dysautonomia is by itself or caused by something else? I have not had any luck finding a doctor, so I'm trying to find all the info I can by myself. There's so much!

There is a test that is very specific for Dysautonomia that most people are unaware of. It is called the ANSAR test. It is the most efficient way to test for problems in the ANS, and it is the easiest on the patient. Here is more info: http://www.ans-hrv.com/

And thank you to Corina for fixing my post! I am really looking into a ton of info for research, since most doctors are uninformed about PPS, so I'll try to keep posting any info I find

PPS can be in addition to POTS I believe. The ANSAR test and the information it provides is very new and groundbreaking. The link above is super informative, if you can wade through all the medical jargon (which most dysautonomiacs can). I'm still looking for a doctor, although there is a specialist in my city, I have not been able to reach him. I strongly suggest looking into the ANSAR test. Here is the website (very good info!) http://www.ans-hrv.com/

Well the last post didn't translate well in the copy and paste. Here is the link to the ANSAR info PDF: http://www.ans-hrv.com/Interp_Complete.pdf