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

Paradoxical Parasympathetic Syndrome (or PPS) is an odd functioning of the parasympathetic system of the ANS. This is very involved, but here is some technical info on it: The Need For Central Vs Peripheral Therapeutic ActionIn general, there is an oppositional or See-Saw relationship between the two autonomic branches:sympathetics (red) and parasympathetics (blue). Normal balance and normal responses to sympathetic and parasympathetic responses are shown below in the first three diagrams. The fourth diagram models the abnormal condition known as paradoxic para sympathetic syndrome (PPS). The paradox is that the parasympathetics are abnormally responding (abnormally increasing) to a sympathetic challenge.Clinically, this serves to destabilize patients’ responses to disease and therapy. It destabilizes because rather than falling away first, the parasympathetics are in creasing, forcing a the sympathetics to increase more than usual. These frequency, excessive sympathetics surges can lead to hypertensive states and all of the secondary conditions that result. PPS is found in over 50% of our database (over 12,000 patient studies), and seems to beassociated with three or more of the following symptoms: • Difficulty falling asleep (can take up to several hours) or wake frequently during the night;• Poor circulation;• Restless leg syndrome or night-time edema;• GI upset (GERD, frequent diarrhea or constipation);• Depression, anxiety, panic-attacks or bipolar-like symptoms;• Frequent morning migraines or headaches;• Frequent morning cognitive difficulties (memory, function);• Chronic pain syndromes (including Fibormyalgia);• Syndromes that include chronic fatigue;• (If 35-45 y;/o female) menopause-like symptoms; or• Frequent dizziness upon standing. Therapeutically, the difficulty is that these surges look like a primary sympathetic abnormality when EKG, heart rate, or blood pressure is measured. If treated as such using typical anti-adrenergic therapy like (peripheral) beta-blockers (.e.g., Toprol, Metaprolol), the anti-adrenergic therapy(1) reduces any endogenous sympathetic opposition, thereby(2) further strengthening the parasympathetics, which then(3) respond even more abnormally, ultimately(4) forcing the sympathetics to respond even more. The sympathetics respond even more because the brain stilldemands its blood and since the therapy does not block all sympathetic channels, the body can find alternate pathways to deliver blood to the brain; thus defeating the efficacy of the therapy.

I have a job where I sit all day, and yes, it does feel pretty bad-worse than standing up! Especially when I first sit down, which seems to make no sense...

I'm still going through test and the runaround with doctors. All I know so far is that I have Dysautonomia (more specifically Paradoxical Parasympathetic Syndrome or PPS), but not POTS. I can't find any info on it anywhere. Does anyone have this (I hope not for your sake)? I just need info so I know what to do or expect. Plus, I had an ANSAR test, not the tilt-table. Anyone have that? Thanks!

I used to get headaches every once in a while, about once a week or so, with migraines a little less frequently. Over the past year they have really been getting heavy, though, and just in the last few months I have a headache every day. They range in severity, but most of the time they're so bad I have a hard time functioning or thinking straight. I'm always dizzy with them, too and it feels like something is tight around my head or that my head weighs like 100 lbs.

I checked able to run errands and socialize. For me, as well as many others, it just depends on the day. After having to call off work too many times, I switched to part-time. We'll see if that helps. If I spend too much time in heat, I get very sick. If I'm too cold, I hurt. It's a recent thing for me to be so limited and it's hard to get used to, but I'm learning to not ignore it and to take things one day at a time. Usually one of the worst things is grocery shopping (because it takes a while and I am dizzy for most of it). My constant headaches are what keeps me at home the most.

I just looked at the list and noticed there is a doctor in my city, so I will check it out. Is anyone familiar with the ANSAR test?

I'm really having a hard time finding any info on Dysautonomia. I recently was told I had Dysautonomia (but no more specific diagnosis). I went to a neuro and had a test called ANSAR, which showed in the summary (it prints specific ones based on your results) that I have "advanced autonomic dysfunction", and also that (according to what I read on the ANSAR company's test interpretation PDF) I probably have Paradoxical Parasympathetic Syndrome (PPS). The problem is that now I can't find a doctor who can help me find the specific issues and how to treat them. I thought the neurologist who's office I had the test in would help, but he ignored the test (even though I had suuuuuper high parasympathetic levels at abnormal spots) and decided to take me down a different path and just gave me medicine for migraines (just one of my many symptoms). I am not going back, as I have been down that road for many years, and I have no desire for guesswork and mis-diagnosis (such as my supposed "epilepsy". Really?). Anyone know what kind of doctor I should look for? I don't even have a primary care. Thanks!