Irritable Bowel Syndrome and Digestive Health Support Forum banner
1 - 17 of 17 Posts

·
Registered
Joined
·
3,150 Posts
Discussion Starter · #1 ·
Teresa, I moved your post to its own topic, as I thought you might get more replies that way!
 

·
Registered
Joined
·
1 Posts
Hi,My name is Teresa, 28, Portuguese. New here. I have neurocardiogenic syncope for over 3 years and I'm having difficulty dealing with it. Specially, I think, as I can't talk about it. No one seems to understand it so I avoid talking about it. I hope here I can make some progress on this.Hope to hear from you soon.Teresa
 

·
Registered
Joined
·
3,150 Posts
Discussion Starter · #3 ·
I am glad to meet you Teresa! Welcome to the forum!
I also have neurocardiogenic syncope, and am glad to have another member here with the same disorder! I don't know anyone else with it, so it's kind of exciting for me to know that you have it also!Are you on any medication or treatment for it?I am currently taking Innopran XL. Before Innopran, I was on Toprol XL. They are both used to control high blood pressure, but my doctor has me on it to help control the low blood pressure too. (It kinda sorta helps some) I also eat as much salt as I can, and try to stay hydrated.As far as I can tell there's not really any treatment for it that really works. Which is a bummer. I'm so excited you're here!
 

·
Registered
Joined
·
3 Posts
Teresa,I have neurocardiogenic syncope as well. I have had it for about 10 years and although that may be discouraging to you, I am 51 and all of the drs. have told me that it tends to dissapate or go away on it's own in younger patients. Hopefully your struggle will not last as long as mine. I have been on many meds over the years. I continue to look for answers. I have been on disability due to an inability to work. Are you able to work? I would love to return to work and be well enough to do so. I had a pacemaker implanted about 4 years ago due to frequent fainting. I have not given up on finding a cure, but the drs. know so little about it, I feel alone in the search. I believe that a cure is out there and it is up to those of us who are suffering to find it. If we pool our information on what works, it is a start. Things that help me are increased salt intake (at least a teaspoon per day), hydration, regular nonstrenuous exercise, reducing stress as much as possible, faith, meditation, and a determination to keep fighting for answers. How are you dealing with the emotional side of the illness? I have good days and bad days but I think about it daily due to the many restrictions that it has caused in my life.
 

·
Registered
Joined
·
3,150 Posts
Discussion Starter · #5 ·
Wow, Shrink! Welcome aboard!
I am so excited to have one more member with this disorder! I cannot tell you how excited this makes me feel.Some tricks I have learned too:Taking a shower has always been a challenge for me, because the heat and the standing make my BP drop. So what I do now, is take a shower, and then wash my hair separately, afterwards. That has helped a lot, and I rarely have to sit now while bathing.When I feel my BP start to drop (I get very warm, start to sweat, and start to feel a little dizzy) I quickly find a place where I can lay down on the floor, and put my feet in a chair. If I can lay with my feet up for about 30 minutes, I can usually delay the fainting spell for an hour or so_Or, if it's winter, I go outside for as long as I can take it to cool off. That can help delay the fainting spell for me too. Those are the few that popped into my head just now.I am interested to know for both of you, when you first developed the disorder, and had your first fainting episode.I had my very first fainting episode when I was up in the Andes Mountains in South America. I read a very interesting article in my doctor's office that many people are first triggered by being at a high elevation. I thought that was very interesting.I am also on disability for it.Sorry I am rattling on so - I'm just so excited to know 2 other people with the same disorder!!
 

·
Registered
Joined
·
3 Posts
I have fainted since chilhood (then it was only occasionally). The initial serious onset was while riding in my husband's jeep next to the old console-type cell-phones. I kept noticing that my symptoms were worse when riding next to that cell phone (I think it was due to the magnetic charge somehow) and when I went through magnetic doors (such as in supermarkets). I know that sounds strange but one trip to the market sent me straight to the hospital with feelings of faintness and difficulty breathing. My cardiologist had me on a heart card at the time and I used it on the way to the hospital. When he called in my EKG reading, my heart rate had plummeted into the low 30's range. When he arrived at the hospital my rate had escalated to the 180's range assisting him in making my diagnosis. I read on this site that initial symptoms can also be brought on by toxins and traumas. I have been exposed to numerous toxins and I have suffered several psychological traumas. I think the combination of these brought on my disorder. Has anyone tried chelation therapy to rid your body of toxins in an effort to treat this disorder? I also find that support hose help tremendously.
 

·
Registered
Joined
·
3,150 Posts
Discussion Starter · #7 ·
That is very interesting, about the magnetic stuff. I have never tried chelation therapy for anything, so I'm not really sure if it would help or not.I've always wondered about those support hose! I always wondered if they would help me. Maybe I will look into it! Glad to know they help you!
 

·
Registered
Joined
·
3 Posts
I was very reluctant to try the support hose because it made me feel like an "old lady". I love them now and wear them daily. I only wear the ones that come to the knee but the drs have said that the thigh high or pantyhose are better. They can be worn by men or women and they make your legs feel like they are getting a massage all day. Check with your dr about the strength that you need. They can be prescription and paid by insurance.
 

·
Registered
Joined
·
4 Posts
I am 41 and have had neurocardiogenic syncope since age 1 year. I have had 3 pacemakers in last 15 years but my condition is not stabilized and has worsened to where I can no longer work. Has anyone out there been able to get social security disability for neurocardiogenic syncope? I need as much help as I can as to the possibility of getting Social Security Disability for this terrible condition.
 

·
Registered
Joined
·
3,150 Posts
Discussion Starter · #10 ·
Hi Kimberly!Welcome to the board. Yes, you definitely CAN get Social Security Disability for Neurocardiogenic Syncope. I know that, because I did! The process is identical to the process anyone goes through to apply for Disability.Your first step will be to call your local Social Security office, and they will mail a large packet of paper work to you for you to fill out. Filling out so much paper work was exhausting for me, so I got help from friends and family, and a lawyer. It was still a long process, but I made it through, and got my benefits.Please keep us posted!
 

·
Registered
Joined
·
4 Posts
Hi! Thank you for the information about getting Social Security Disability. I did apply and was denied at the first level and then did the Reconsideration and again was denied. I did get an attorney and he told me this was quite common and that we would need to go to the Hearing level. Did that happen for you too or should I be concerned. My doctor's all say it is one of the most malignant cases they have seen and no meds or pacemaker helps. I don't want to be discouraged by the denials but I am. Any information is greatly appreciated.
 

·
Registered
Joined
·
3,150 Posts
Discussion Starter · #12 ·
Well, I'll tell you what my lawyer told me.The first time you apply, you're gauranteed a denial. Next, as you know, comes the reconsideration. He said that about 1% of cases are accepted at this level, just so they can say "no, we don't deny all reconsiderations". (So, basically, at the reconsideration level, you're almost garaunteed another denial.)Then, as you know, comes the hearing. You can't let too much time pass before you take it to the hearing level. If you let too much time pass between steps, you're more likely to get denied. It's at the hearing level that you really get to make your case. And if you've already got a lawyer, they will help you make your case as strong as possible.Even if you were to get denied at the hearing level, you can continue to pursue your case. The key is never to give up. I think that maybe, they say "no", just because they figure you'll give up. But you just have to be persistant. I won my case at the reconsideration level. I consider myself lucky, and I don't think it was because my case was any stronger than anyone else's. I think it just landed on the desk of someone who had the "accepted" stamp in their hand. LOL It really is a craps shoot, but just don't give up!If you're disabled, you deserve your money. You've paid into the system for years, and it is indeed YOUR money.You might enjoy browsing this forum:http://www.fibrohugs.com/forum/index.php?forum=27It is a forum about US Disability Law. Though it is targeted mostly for Fibro patients, the information is the same for all of us. If you browse through the forum, I know you'll find ALL the information you need! That place answered so many of my questions when I was filing my claim. I hope maybe it will help you too!
 

·
Registered
Joined
·
3 Posts
hello my 16 yr old has had this ncs for about a yr now but the doctor wont listen to her because she complains about a spinning sensation had a postitive tilt table but they still wont they tell her it all in her head
 

·
Registered
Joined
·
4 Posts
Has anyone out there with ncs been asked by their physician to try tilt-training where you stand up agains a wall with your feet about 10 inches away for 30 minutes a day. I have had 3 pacemakers and every medication and nothing has helped so this is his final try at a solution. It hasn't helped and I feel like the doctor just won't admit that I have a disability. I am trying to get social security and need my physician to admit he can't cure this or control this condition. If anyone has any information about this tilt-training therapy I would appreciate it.
 

·
Registered
Joined
·
6,019 Posts
quote:Originally posted by M&M:I have never tried chelation therapy for anything, so I'm not really sure if it would help or not.
http://www.sjsu.edu/depts/beethoven/hair/hairtestpc.htmlDr. Walsh, who wrote this overview, did the testing on the lock of Beethoven's hair. Aside from this being just an interesting read, he does run an institute based around chelation and might be a good resource to talk with.The effects of lead poisoning, as listed in the artical, might well be of interest to a lot of us.I had been invited on a trek to Machu Pichu. Given your experience and my own tendancy towards IBS and brain fog, I think I am glad that I turned it down.Mark
 

·
Registered
Joined
·
3,150 Posts
Discussion Starter · #16 ·
Kimberly,My cardiologist did suggest an exercise that is very similar to what you are describing. However, he said for me to actually stand up against the wall, and only for 5 or 10 minutes several times a day, and then gradually for longer periods of time. Just a tiny bit different from what your Dr. said, but pretty much the same thing.I tried it for a few days, but it caused a flare up in my symptoms that was bad enough, I had to stop the exercise completely. I think it actually made my NCS worse.My cardiologist did not see my NCS as a big deal either. He told me if I drank more water, it would go away. (Of course, that did not work - duh!) I don't know why some doctors just don't see the impact that these illnesses can have on us, and our ability to work.Especially with you having had so many pacemakers, and having tried so many meds. I think it's time your doctor admit he can't treat this effectively for you.That kind of stuff makes me so angry!!! When they just can't see how we're effected by the illness. I sure wish you the best, but I'll tell you, I'd like to strangle this idiot!!!
I'll have to look at that link Mark. Sorry you have to miss out on such an amazing trip, but you're right - you may have just saved yourself loads of EXTRA headaches by passing on it!
 

·
Registered
Joined
·
4 Posts
Thank you Teresa. Yes, I agree since I have began trying it I have fainted during the exercise and struck my head. My mother was there with me but she is in her 60's and sickly and she couldn't grab me in time or hold me so that I didn't hurt myself. I am waiting to hear from my doctor as to what he wants me to do now. I have been having worse symptoms since I have been trying the exercise. They don't understand and they do say silly things like eat more salt, drink water, wear the stockings. I've done it all. I have broken ribs falling and I have been off work over a year now. I just need him to give up and say he can't fix it. I think it is an ego thing. I appreciate him trying so hard to help but when is enough enough? Thank you so much.
 
1 - 17 of 17 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top