Dysautonomia/POTS/Neurocardiogenic Syncope
 

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. :grouphug:

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!!

Well, they did the initial referral for the research program in October (I think) of last year and I had the appointment scheduled for January 22nd. However, once they started looking at my records and medications more, they decided I was not a good candidate for the research program and told me they would rather I come for a clinic visit. By this time it was already early January. So when they called to schedule the appointment, the first available appointment was October of this year!! I was so disappointed because I had already waited so long and I was ready to go! But then they went ahead and put me on the 'call list' in the event there was a cancellation. Thankfully, they had a cancellation not long after they made my appointment and they were able to move me up to March.

If I were you, I would try to get your referral going ASAP. It usually takes several months to get in at Vandy or any other facility like it. I would also really consider getting another physician involved if your's is not returning your calls promptly. That is just not good!

I know you are frustrated, I can't even begin to imagine. Do you not have any family or friends who could help you with your financial situation?? What state do you live in (you don't have to answer if you don't want to)??? Can you get any kind of government assistance??

Check out those sites I listed before. There are a lot of people who are in your exact situation and can give you a lot of advice. They come from all different states and there are lists of providers who have lots of experience with our condition and maybe someone can help you find a good provider near you who can help you until you can get into Vandy or a similar facility.

Good luck and let me know what I can do to help. :grouphug:

{{HUGS}}

I never thought of compression stockings but... I have bilateral frozen shoulders and suspected myasthenia gravis... my arms are so weak that I cannot even get on regular panty hose! I tried once to go to a party and it was a pathetic failure...
I get regular stress tests and EKGs and echocardiograms and halters on demand... but the TTT, no, but based on all this, I think I will push for it. A friend of mine who has been uncannily similar has had it and also passed out so I have been afraid.
So tired of doctors. Thanks for the sites. I will check them out. I am registered already at one as one of my cushing's buddies already told me about it a while ago. Thanks.

hello I have dysautonomia which includes malignant neurocardiogenic sycope and POTS
 

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.

I asked the cardiologist for a TTT and she said...NO. She said it would be positive. So why bother. LOL...
I do wear compression stockings from time to time but I am weak (some neuromuscular thing) and have a hard time getting them on - plus I have to wear above the knee ones... dang, they are hard.
I missed your post! Sorry...

pots syndrome
 

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

Hi wow i cant tell you guys how happy iam to have found neurotalk Im 17 and have been recently diagosed with neurocardiogenic syncope like you guys but nothing has worked for me im on florinef labeltol and have tried other medications midodrine and zoloft i also have compression stalking that dont work lol but im very interested in starting a chat!:)

Hi all, I had a tilt table test on Tuesday, 10-27-09 and passed out. Thus, I have Dysautonomia. What kind remains to be see.

Looking forward to having other people here to talk about this disease. I am worn out from battling it. But I am hoping that the docs can find some effective meds soon and I get some relief.

Keep this thread going--this is a difficult disease to live with and some of the cardiac problems can cause sudden death--nothing to mess with.

HUGS
lifesaver

Question
 

Hey There,
I am 27 and have had POTS for many years and it has been quite debilitating. I have been out to Cleveland Clinic after years of being told it was "just stress" finally have some answers, but not much in the way of follow up. I also had nuclear tests, tilts, etc ... all revealing similar results to yours. I have low blood volume and low red blood cell counts, but after 2 months the Dr. has not addressed these results, just increased my beta blocker, I have no follow up visits scheduled, and that appears to be the only way I will get answers. My insurance has changed so it's not an option at this point. I have a 2 year old son that I need to be healthy for so I'm on here searching for answers. My iron levels are generally fine, so the red blood cell count thing (anemia) seems to be attributed to something else ...my PCP is not helpful either.

I was wondering what they have you doing to increase red blood cell levels and what their explanation for you is. Are they telling you are anemic but in some other "non-iron" related way? I am on a high salt diet, support stockings, etc. Knowing what they are doing to help you would be wonderful to hear. Since I have very similar findings and not alot of advice :)
Take Care!

Hi
 

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?

Learning Life's Lessons while having NCS
 

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...

Yes I do!
 

Hi there, Yes I have had this disorder since the 4th grade and was diagnosed 2 years ago with a tilt table test. What are you doing for your disorder as far as treatment?? Mine has been manageable on my own, but now I am in nursing clinicals in the hospitals and it has happened a few times. Meeting with my doctor this week to discuss meds.

Hannah

I was diagnosed with POTS in 2007, and I too was diagnosed after having an eating disorder. I was told at the clinic I was at that my orthostatic hypotention and my sinus tachycardia was because I wasn't drinking enough, so after they made me drink 4 gatoraids a day, and a blood test, they realized that I wasn't dehydrated. Upon my discharge I followed up with a cardiologist and was finally diagnosed. I was placed on Midodrine and it helped a bit, I was then diagnosed with AVNRT and had an ablation. The ablation helped at first a lot, but, now I feel like it's all coming back again. :( My heart surgeon said that it was very unlikely that my AVNRT could come back, but I'm super confused as to why after 6 months of my POTS symptoms being awesome, they are starting to come back again. I can't stand up for a long time, and I have had to go back to using the bracing harness on my service dog. (for a while, he only needed to do tasks related to finding someone if I fainted, or retrieving objects, especially dropped objects so I wouldn't have to bend over and risk fainting...) But yeah, very stressed, as since the ablation, the Midodrine doesn't work as well.

pots
 

I have no idea! Im 33 years old I have never had any symptoms or major illnesses. One day at work (june 7 th) started to feel dizzy, got real hot, chest palpitating, fingers and hand got numb. I thought i was having a heart attack.Then i passed out for only a min though. I work in a hospital so they took me to ER. They sent me home said i was fine. Next day ended up in ER again, and again they sent me home i was fine. For three days i laid and did nothing. I then decided im living my life. Went shopping with my husband, not a good idea. I almost passed out again, I had to lay on the ground. Later that night i must have pushed myself. I thought i was gonna dye. My heart was pounding.


I called 911, they admitted. I stayed 3 days. Failed tilt table test in 2 mins. They put me on Florinef for a week, no success. Today is day 11 on Atenolol (beta blocker), kinda scary b/c my bp is low to begin w/ 95/65. It get down to 85/58at times. It did lower my heart rate from 115 standing to 85-90. However, it did not solve my problem. I still get the chest and throat tightness, dizzy and lightheadedness, brain fog and confusion all w/ standing only. Im fine laying and ok for the most part sitting. I just cant have my legs hanging. No symptoms until my legs are in a standing position. Does it take awhile for the beta blockers to work? Or maybe i need to try Midodrine (a vasoconstrictor) blood could be pooling in my legs. Did you try Midorine before. I feel like im not getting blood to my head and tht would explain my symptoms.

I am so completely confused and sad. 3 weeks is a long time for me to sit and do nothing. I went from full time job, part time school, being a mom and wife--------to sitting and doing nothing. Where is the cure, research, help? Sorry had to vent.
They think POTS