Hi, I am new here and I am wondering if there is anyone here who has Dysautonomia/POTS/Neurocardiogenic Syncope? It is somewhat rare but I know that I saw someone who had posted about it before I signed up. I would be interested in getting some discussions going with with any others who may have it here.

Thanks!

Hello
I myself do not have POTS, but I am the caregiver for my husband who does.

Hi FireWife, I believe I have seen you either on NDRF or DINET. I go by JOY over there.

Nice to see you. Have you met others here with this disease?

im new to the site and have been diagnosed with NCS as of 3 weeks ago, but have been suffering for 18 ths.

Hi Krissie. I'm sorry, I didn't totally understand your post. Did you mean 18 months or 18 years? I know a lot of people with these conditions sometimes go many, many years without a diagnosis. I was diagnosed last year after having pericarditis in July. I went to a cardiologist after the acute phase of the pericarditis. I was continuing to have symptoms of rapid heart rate, low blood pressure, chest pain and difficulty breathing upon standing. She diagnosed me almost immediately. She then sent me for a TTT and it was also positive.

But after learning about more of the symptoms of this horrible illness, I honestly believe I have had it for many years, I just didn't know what it was. My doctors also believe the pericarditis exacerbated the illness and made me a lot worse. I now pass out very often. I have passed out over 30 times since September of last year. Since my doctors here only know a little about the illness and even less about how to treat it, I was referred to Vanderbilt University Medical Center this past March for further testing and evaluation. Dr. Raj was the doctor who saw me there. He says that syncope in POTS patients is somewhat abnormal but not unheard of. While I was there, I had a test to check for low blood volume and for low red blood cells. Both of them came back positive....meaning that my blood volume and red blood cell count is moderately to severely low. So now he is working with my local PCP and cardiologist to find a plan to help get some of these things back close to where they should be.

It has been a long road so far and I am far from been well but I am blessed to have a team of doctors who are working together to help me.

If you don't mind, would you share what your experience has been??

Great to me you!

I am suspected of having this. My blood pressure is low and drops when I stand but I can't get my cardiologist to send me for a tilt table test so I just do the poor man's test.

But I have no adrenals, cannot control salt, take salt and florinef like there is no tomorrow as it is... Feel like crud when the BP cannot get to the 100's.

I like the high salt diet though... the receptionist there shakes her head when the cardiogist told me to eat more potato chipsfor the salt! Wheat thins with cheddar cheese just melted for a few seconds in the microwave - for my health... hah!

Hi my name is gillyann,i read your story and wanted to reply as i too have severe low red blood cells and plasma..i am bedridden because of it due to pots syndrome..i am on fludrocortisone 0.2mg and have just started on epo injections 10,000 units for the red blood cells..you have been the only person that i have read to have low blood volume and just wanted to ask has anything helped you i have been bedridden for 5 years now

I know that the first message wasn't for me but I wanted to say things about my life and share what I know about fainting. The first time that I remember fainting I was 8 years old (I am in my early 30s now). I just had a birthday party and had come home from the party and was opening my gifts. I used a pair of scissors to cut something and accidentally cut my finger. I went to the bathroom and the blood was coming out fast from my finger. I called my Aunt and she took care of my finger and dragged me to a chair in which I fainted.

Since then, I have fainted a numerous amount of times. It wasn't until I fainted in front of a boyfriend that I learned fainting wasn't normal. So, it took about a year after that to find out what I had. I have Neurocardiogenic Syncope or NCS. I had a tilt table test done. My bp dropped to 60/28. The doctors first put me on Metropolol which made my hair fall out. They always wanted to give me Meclizine for the dizziness. I finally found a great doctor in Brooklyn, NY at Lutheran Medical Center named Dr. Ngo. She had me see another cardiologist after finding an AV block when I was sleeping to see if I needed a pacemaker. I did an EPS study to check my heart and I never felt it beat that fast, plus they said my heart was healthy. So now I take a medication called Midodrine. I asked the pharmacist how high should my bp be when taking it and how high is too high. She said 140/90 is the highest it should be. So, we shall see how well this med works for me. So far so good...

I do not have POTS we do not think but they believe it is neurocardiogenic syncope. Still trying to figure out how to live with this. How is your husband?

Hello. I have been diagnosed with dysautonomia about 1998 had fainted occasionally since the age of 7 yrs old chalked it up to stress but then got anorexia which damages the vagus nerve more and was fainted almost everyday sometimes 3-4 times a day. They said it was due to the anorexia and if I gained weight I would be fine. I went to treatment for the ED but kicked out since they thought I was cheating because i was fainting all the time still. Came home got sent to a cardiologist had a tilt table test and was diagnosed with neurocardiogenic syncope with bad bradicardia had to get a pacemaker in 99 then I stopped fainting for 2 months and it returned but not as often then the tachacardias showed up but only like 180 bpm at rest but when it hit 260 at rest the had to do an ablation so I still faint and may need another ablation. I am part of dreams and if you go to youtube POTS go to Sarah the marine who has had a bad case and she explains it very well. The vegus nerve does so much for the body everything seems to go out of whack like gastroparesis where your stomach is parlized. What helps me most is myspace and facebook because the have groups and people who understand. You cannot believe some of the ER doc etc that accuse you of faking when it is a fainting thing unbelievable esp when I have a tramatic brain injury from a faint down a flight of stairs. I am new here but came across it trying to find good articles to explain it to my friends who don't get it esp the tiredness after a faint etc.