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!

sorry addy, it was 18 mths. i was out with my children one afternoon and i started to feel alittle lightheaded. so i went home to lay down. at the time i was 29, owned my own bussiness, had been dating the love of my life for only 6 mths. the lightheadedness and dizziness came about once a week, so i took some vitamins, but didnt help. so i went to the dr and they said i had inner ear infection, went thru 2 series of antibiotics, nothing. after lots of drs and specialists and tests and needles (the worst had to be spinal tap) the only thing i kept getting was. . ."all the tests were normal, this is probably stress, take these antidepressants". so i did, i tried several, made me feel worse. during this time i have gained 40lbs lost my bussiness and had to send my children to their dads, because i cant drive or even get out of the bed without being lightheaded and dizzy, which who would be able to continue a normal life without being able to stand up. so the drs said i was depressed and needed to walk 30+ mins a day, take my meds. i mean every dr said this, 3 gp's and even the specialists. even though i KNEW this was not true, so i tried the walking, i took off around the block, and before i could make it back to my front door, i was blacking out and out of breath, scarey stuff. at this point i was furious, i called my gp and wanted him to set me up with a treadmill test, so that they could see that i couldnt do it, and he said no, i would have to come and see him before he would suggest that. hell no, that was my exact words, i will not spend another dollar for you to tell that you dont know whats wrong with me, i will go about it someother way. so i called my cardiologist, who did a TTT within 3 days of the phone call, and i finally got my answers!! but now we are just figuring out how to fix it. when i got home i called my gp to let him know that i am NOT crazy!! boy was he shocked. anyway, i see that you went to vanderbilt, i have considered that, but i also considered mayo, i want to get this under control, so that i can atleast have a halfway decent life again. i would eat coal at this point!! let me know more about your visit at vanderbilt. i really need to go somewhere to make sure there isnt an underlying cause,, that is slowly taking me under. but i really only have enough in saveings for 1 trip, so i need to make sure its worth it!

Krissy, I am so sorry you have had so much trouble. I have read so much about others experiencing the same kind of issues with their doctors. I know that I have been truly blessed.

To go to Vandy, I believe you have to have your GP, Cardiologist, etc. refer you. They contact Vandy, fill out the extensive forms that are required for the referral and send in all of your records....especially your positive TTT. Then Vandy will decide if you are a candidate for any of their research studies. (In case you don't know, Vandy is a huge research facility for this disease and they accept people for various research studies they have going on.....which are different all the time based on what they happen to be studying. In most cases you go and stay approximately 2 weeks for testing, evaluation and treatment.) If you don't qualify or if you aren't interested in participating in a study, you can just go for a 'clinic visit'. This is where you go for one full day for testing and a visit with one of their doctors. (This is what I did but not because I did not want to be a research participant. I did not qualify because of some of the meds I am on and the fact that my docs and their docs did not feel I could come off of them for the amount of time that would be required.)

My husband and I live in GA, so we drove up the morning of my appointment. I had to be there at 11:15 for the testing they do before you see the doctor. The testing is autonomic function testing (AFT). They do several different tests that include a more elaborate version of the poor man's tilt...meaning they have you hooked up to all the machines but they don't have you on the table. Then you do some breathing tests while they watch your heart rate and blood pressure and then they stick your hand in ice cold water for a couple of minutes and watch your vital signs with that as well. They are pretty easy tests but they give the doctor a lot of info.

Then at 2:15, I met with the doctor. His name is Dr. Satish Raj and he spent over an hour with my husband and me. He took a very thorough history and then he gave me his opinion of my illness. He was still concerned about some things so he asked if I could stay in town overnight and have more testing done the next day. So we did. It was amazing because we were there until after 6:00 pm and he managed to get a couple of very specialized tests scheduled at the last minute so I wouldn't have to come back until my follow-up appointment in June.

The next day, I had a nuclear medicine test called a blood plasma volume test. He ordered this because I am chronically hypovolemic (dehydrated) and that exacerbates my condition. He wanted to find out if I my blood volume is low and it turns out that it is. That answers some of the questions about my low blood pressure and why I pass out so easily. He also did another TTT to see if they could recreate my syncopal episodes. He said it was very unusual for someone with POTS to faint. Usually they have near syncope but not complete syncope. Well, I did pass out during the TTT. They also found out during the testing that I have a very low red blood cell count. That showed up during the nuclear medicine test but it does not show up on normal lab work. So I am very anemic even though normal lab work does not show it. So now, we are working on aggressively treating this as it causes a lot of bad symptoms.

Other than that, he gave me other tips for lifestyle change, most I'd already heard and tried to implement in one way or the other. He also did a few med changes, prescribed waist high compression stockings and suggested that I get into a cardiac rehab program where I can start swimming with assistance. (Hopefully calling it 'cardiac rehab' my insurance will pay for it!)

Now this expert will continue to be involved in my care. My local cardiologist will use him as a resource while managing my care. I have access to him through email, so I can ask him questions whenever I want....he always answers and I follow-up with him in June. He is also very willing to assist me in applying for SSDI. He sent letters to my PCP and Cardiologist explaining my disease, what my treatment plan should be and why I should be on disability. The packet he sent was humongous! I pray it will be enough to help me qualify.

All in all, I was very, very pleased with my experience there and I would highly recommend it to anyone who is seeking help. EVERYONE we came in contact with at that facility was super nice and helpful, from the FREE valet parking attendents all the way to the doctor....everyone went out of their way to be friendly and helpful in any way they could.

So, if you have any specific questions you want to ask, please feel free to. I certainly don't mind answering. I pray you find the help you need.

You really need a TTT! I believe I would find another cardiologist and get a 2nd opinion. What is the harm in getting one (a TTT)? It sounds like he believes you have something going on if he is telling you to eat more salt and has you on Florinef?!? Have you tried compression stockings? Those work great for me, when I can get them on!!

how long did it take for you to get in vandy? im more interested in the clinic visit, not the research program. i have a cardiology appt mon, and will be asking for a referal. how are the meds that they put you on. my main concern is that my cardiologist doesnt know alot about NCS, well mabey he knows a little, but when its YOU that is sick and losing everything, you want the best knowledge and fast, mabey hoping to save at least a little something before i dont even have a bed to sleep in. there are days that i cant even get a phone call in to the nurse at the drs office, and if i could email straight to the dr and get answers, especially when im on meds that are making me sick. i had that problem last week, come to find out 4 days later, when they got around to listening to their answering machine, the BB that i was on was lowering my BP to the point that i hadnt been out of the bed for 2 weeks. ughhhh!!