Looking for some support
 

Hi ya'll! I was (FINALLY) diagnosed with neurocardiogenic syncope about three years ago. It took two and half years of doctors, neurologists, psycologists and cardiologists to actually come to a diagnosis - then when they did have a "name," it seemed that I still wasn't having the proper symptoms - instead of a 20 minute recovery time after a spell, mine might take up to 36 hours. Therefore, the psychiatrists - because, of course, it was all in my head!

Finally, I came across a cardiologist who actually seemed to understand the problem. He is wonderful and he set me up with a pretty good arsenal of meds, which helped reduce my spells but did not completely stop them - I went from spells everyday to spells about 3-4 times a week. And he still couldn't tell me WHY my symptoms were so different. So he referred me to Blair Grubb in Toledo, Ohio.

What a wonderful man! He spent hours with my family and I, explaining the very basics of neurocardiogenic syncope. My long recovery times were NOT psycosymatic, they were byproducts of the types of spells I was having. It seems that when most people have a "spell," it happens very suddenly and they pass out immediately. The brain only experiences loss of oxygen for a very short time and therefore the recovery period is relatively short. I can feel a "spell" coming on for an hour or more and I almost never completely pass out. I experience a number of symptoms as parts of my brain shut down b/c of loss of oxygen - I'm get confused, I'm extremely fatigued, my voice goes down to a whisper no matter how loud I try to talk and I find it very hard to communicate. Once I talked to Dr. Grubb, it all made sense.

Because my regular cardiologist is doing such a good job, Dr. Grubb really didn't have much more to add in the way of treatment. He fiddled with the meds a little but not much at all. However, the explanations and support he gave me and my family were well worth the trip from Florida to Ohio. I've seen him twice now, and plan on making it a yearly trip. I'm not crazy afterall!

The one thing Dr. Blair stressed was having a good support system. My family and friends are great. They recognize a spell coming on usually quicker than I do and lead me to a chair and put my feet up. After all this time though, I try not to talk about the stresses of having syncope at this level. Listening to someone's health problems can get pretty boring after a while if you're not experiencing the same thing.

SOOO - we finally get to the point of this post! I'm looking for contacts who can listen (and give suggestions) or who need someone to listen )and give suggestions), to the everyday facts of life when living with a chronic problem like syncope.

I'm talking about the fatigue, the sweats, having to quit work, trying to manuver the Social Security system, the embarassment of fainting in the supermarket (I fainted in two different Publix Supermarkets, across town from each other, on the same day!); the problems families face because there's only one parent allowed to drive and one kid has karate practice at 6:30 and the other has a softball game at 6:45 - across town;

Although they never say anything, I know my kids get embarassed when they're with me in a public place and I have a spell. My husband has been absolutely wonderful, but I feel like a kid again when I have to ask if he can take me somewhere. And then I feel like I have to hurry through the errand b/c he's waiting.

I could spend another three paragraphs complaining - and I'm sorry if I sound petty, b/c I have so much to be grateful for - so I'll stop here. I guess I just want to hear from people who have gone through the same things and gotten through them alright. God's Blessings on you all.

Hi there,
Good to meet you. Welcome to NeuroTalk. :)

I'm not really sure which specific forum to refer you on to, but others may have some idea. I did just want to post a really excellent informational website for you here though.

http://www.ndrf.org/ParoxymalAutonomicSyncope.htm
Neurally Mediated / Neurocardiogenic Syncope
National Dysautonomia Research Foundation

main site is...

http://www.ndrf.org/index.htm

http://www.ndrf.org/Research_NCS.htm
Neurally-Mediated Syncope Research articles

also there is the NINDS site for info.

http://www.ninds.nih.gov/disorders/d...sautonomia.htm
NINDS Dysautonomia Information Page
There is a section there for Publications, Clinical Trials, Research and News.

You'll find some really wonderful people here and if you need any help finding anything on the site just let us know and someone will help you out.

p.s. you might also like to repost over on the General Health Conditions and Rare Disorders Forum

I aso have neurocardiogenic syncope i have gone to pyscologists and pyschtrist and cardoloigts and regular family doctor Im seventeen i take labetol and florinef and saltpills daily iv taken midodrine which i had terible sideaffects with same as the zoloft. it started in sept the beginging of school stopped for a month when i got meds and now is recently coming back i drink the water take the pills but i still feel i dont have a normal life i cant drive anywhere any more i have to be dependt on everyone which i hate because i use to be a indepent person i use to do karate and was always very healthy. I get through the days by praying i wont passout today sometimes it works sometimes and sometimes it doesnt.

Hello and welcome to Neuro talk, along with those other links there seems to be a few post about neurocardiogenic syncope in the general health and rare disorders forum

http://neurotalk.psychcentral.com/forum2.html

hope this can also help, do not hesitate in posting questions or worries you may have. People here are very helpful and kind. Again welcome to NT

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene:hug:

welcome to neurotalk ... there are lots of friendly and supportive people here so jump right in and start posting ... should you need help, don't hesitate to ask someone ... we are here to help ... again ...
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Hiya
 

Welcome to you! I also found a Doctor who knew how to help me with the spinal issues Ive had for over four years...ironically, he is in Toledo, Ohio at the University Of Toledo Medical Center.

hope you stick around here a good bit...I am newer here, but there are lots of warm friendly, genuine people here.

Hi Miss Just Drea
Did you have both the spinal and the brain MRI? What medicines is your doctor prescribing? I have appt to see if he can give me something to help me walk, I have walker now, but I am not like it, I want to walk again, walk far and good. Are you now able to walk far and good? I am waiting to learn to use this chart here, I keep typing, but I can't find what I type here, then I check my email I am thinking maybe many people here don't read thier email, so will not reply, if you get this in your email, you please email me, and if you feel to tell me what the doctor is doing to help you,,,,,, also,how long have you had MS, and is it affecting your legs that you Miss Just Drea

please Mr Franks Angel
My name is Tashou, and I am trying to find help here, on this site for MS, I see your name here, and am looking to talk to someone with same situation. If you can reply to this mail, I will be so grateful.
Tashou Yamamoto