Ckitz Posted November 5, 2013 Report Share Posted November 5, 2013 Hi everybody . I am an 59 year old woman, who has been ill since childhood, but only got diagnoised recently, after taking a tilt table test. I have experienced severe "attacks", as I call them...which can land me in the hospital sometimes, most of my life. I was funtional til about the age of 35, after which fatique became more and more of an issue. At the age of 40, I had severe cognitive problems and had to stop working. Not fun when you are a single Mom with two children. Then, pain and assorted other issues became worse, and I was diagnoised with CFS and FMS, and autoimmune issues. I couldn't find out why I had random falls flat onto my face, and no one could explain my "attacks". No doctor ever suggested I go to a cardologist, til now. I finally took the tilt table test and was diagnoised with Neurocardiogenic syncope. The discription of Neurocardiogenic syncope seems extremely inadiquite. Basically, says that it is just fainting ( not that fainting is no big deal)and the person is otherwise fine. I didn't even realise that my falls were fainting! And as far as my attacks...they were so horrible ( unbearable chest pain, pale, sweating, slurred speach, severe cramps, at times, and vomiting and diarreah....lasting up to an hour! And very sick for days afterward. Though I may have passed out while on the floor, the last thing I thought it was is a fainting spell! Don't understand this. I get sick standing, but usually lay down before passing out....so fainting is not an issue. When I read about P.O.T.S, and dysautonomia, I recognise all the different things I deal with.... Do I have the wrong diagnosis? I would greatly appreciate any thoughts on this. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 5, 2013 Report Share Posted November 5, 2013 Neurocardiogenic syncope is a form of dysautonomia. I know it's confusing. Dysautonomia is a larger heading and then has 'subgroups' that describe how the dysautonomia affects your cardiac system. It sounds like you have the NCS version per your diagnosis, whereby your blood pressure crashes causing fainting. That doesn't mean there are not other symptoms of dysautonomia you experience, it just describes how your cardiac system is affected. I hope that helps clarify how this craziness works. Many newly diagnosed people are confused by this. To read more about this, there is a good explanation on the main homepage of Dinet. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Ckitz Posted November 5, 2013 Author Report Share Posted November 5, 2013 Katybug....thankyou so much for replying. It definately is confusing. I will continue reading more on this... Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted November 6, 2013 Report Share Posted November 6, 2013 Welcome to the forum I'm sure you will find lots of helpful information here! It sounds like you've been through a lot to this point!! This is a link to a fairly detailed overview of NCS that someone else posted awhile back. http://livingwithncs.wordpress.com/2011/05/13/what-is-ncs-the-who-what-why-where-when-and-hows/Some of the info on the web about it does make it seem like its a no-big-deal condition, but that certainly hasn't been my experience either! Quote Link to comment Share on other sites More sharing options...
corina Posted November 6, 2013 Report Share Posted November 6, 2013 HI Ckitz, welcome to the forum. I'm sorry you have so much going on. Hope you will find answers and some comfort here! Quote Link to comment Share on other sites More sharing options...
valiz Posted November 7, 2013 Report Share Posted November 7, 2013 My story is much like yours. I am 62 years old but had fainting episodes as young as 10 years old. Then in my twenties I feel like I went into remission for about 15 years. Then my symptoms of fatigue, insomnia, easily overstimulated, IBS, dizziness, tachy and ER visits that were much like a TIA but involved my whole body. I couldn't talk, bear weight, had not an ounce of strength, dizzy, nausea and vomiting and sometimes very low BS. It wasn't until 4 years ago after a hospitalization that a Nephrologist of all things, thought I might have POTS. He referred me to Johns Hopkins for the TTT. I have both POTS and NMH (same as NCS). I read Dr. Grubb's book and he states that in older persons the episodes of NMH can be very similar to a TIA. I hope you can get some answers. Having NMH is not "just an inconvenience"but is Quality of Life altering for me. Quote Link to comment Share on other sites More sharing options...
Ckitz Posted November 8, 2013 Author Report Share Posted November 8, 2013 Thanks SO much for all your support, and suggestions for reading. Very helpful! I need to read Dr Grubs book. Valiz, I am also happy to hear from someone around my age with a similar story. I think the hardest thing all these years was having such a life altering illness, and also incredibly tramatic attacks, in which I felt I was dying...and being treated dismissively by doctors. Neurologists were the worse. It is a tough road to travel with no understanding or support. I am still in shock that I finally can put all the puzzle pieces togeather....and have a name for why my life has been so challeging. It is sad it took so long, but I am at peace now, knowing what is wrong with me.Thanks again everybody Quote Link to comment Share on other sites More sharing options...
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