Neurocardiogenic Syncope (This Thing I Have)

So. I have a weird condition. It’s taken 24 years and unquantifiable medical hoopla to figure out, but as of a few months ago, I finally have the real diagnosis:

Neurocardiogenic syncope.

DUN DUN DUNNNNNNN.
 

Since I can't photograph neurocardiongenic syncope, here is a nice picture of German-style chocolate mousse cake instead.


 
 

 

Neurocardiowhatsit?

In simple terms (which comprise my only understanding of the whole mess), neuro-receptors around my heart sometimes (for no apparent reason) send the wrong signals to my brain. These wrong signals tell my brain to dilate my blood vessels in moments when the vessels actually need constricting. The result is a crazy rapid drop in blood pressure, and I pass out. Sometimes I stop breathing, which is great fun.

Most of the time, I regain consciousness right after vomiting. You don’t wanna know more than that. I promise.

The weirdest part of it all (and this is the part no doctors have been able to explain yet) is that I’ll wake up from a dead sleep in time to tell my husband I’m about to pass out. Then I pass out flat on my back without even sitting up in bed.

When I have one of these episodes, I feel weak, sickish, and lethargic for 2-4 weeks afterward. The good news is that none of this stuff is life-threatening — but it sure is dang inconvenient, because until I get over the weaksickishlethargic, I pretty much can’t do anything except watch TV.

The last two times this happened were in January and February of this year, respectively. I didn’t really feel like myself again until May.

The doc who gave me the definitive diagnosis a few months back? He wants to put me on beta blockers (to regulate heartbeat & blood pressure) or on anti-depressants (to up my serotonin levels, which the screwed-up neuro-receptors would appreciate).

I’m not too thrilled about either option. I spent 15 years (ages 14-29) on beta-blockers, and they made me sluggish and tired and pale and flabby. The doc assures me that today’s beta-blockers don’t have such strong side effects, but I am skeptical.

Also, I continued to have plenty of pass-out-stop-breathing-and-vomit episodes while on beta-blockers, so forgive me if I question their effectiveness.

In other news, I’m such a natural-foods, non-toxins hippie these days, I’m not keen on pumping more chemicals into my body. For the same reasons, I don’t like the idea of anti-depressants. If I were clinically depressed and under a psychiatrist’s care, that would be different. It’s true, I used to suffer from Seasonal Affective Disorder, but that has gone away since I got my vitamin D levels up. I understand that the cardiologist doesn’t think I’m depressed…but still, I’m concerned that even if the anti-depressants helped my neuro-receptors, they’d have all sorts of unpleasant side effects. Like the kind that change who you are, and not necessarily for the better. I have no wish to alter my personality with chemicals.

What’s the Because?

I’m not sure why I’m writing about all of this here. I’m not sure why I’m telling y’all any of this…except that it’s a part of me, and this passing-out nonsense happens to me sometimes, and I might reference it on Twitter at some point.

Besides — how am I to know whether or not one of you struggles with this kind of stuff? If my baring my heart (har de har) leads to somebody getting some answers of their own, then I’ve done a good thing by rambling on about this.

Shiny! Now What?

Somebody at the doc’s office botched the process, and they haven’t called me in for a consultation again. I should call them…but for now, I ain’t gonna.

For now, I’m letting my friend and nutritionist Erin fix me up with whole foods and ply me with all sorts of fantabulous supplements to get my amino acids in order. In the past 11 months, I’ve dropped 25lbs., developed regular exercise habits, and learned to prepare (and eat eat eat!) healthy food. The girl who hates cooking has turned into a foodie. I’m still not a fan of elaborate meal prep, but at least I spend quality time with my kitchen utensils.

(Also, we tossed the microwave and got a food processor. Best kitchen move EVER.)

My heart still flutters, and I still see black & white spots sometimes when I stand up. I can never run as far or as long as I want to.

But I’m healthier than I’ve ever been, and I feel good about myself.

That’s good for my heart and great for my soul.

_____________________

Speak up, lovelies. Neurocardiogenic syncope, anyone? What about your own health/fitness/nutrition woes? What about your successes?

Fling this post into the ether of internetted winds, that it might implant itself in a bazillion other consciousnesses and hasten the onset of my world dominion. ...Wait -- did I say that out loud?Buffer this pageDigg thisEmail this to someoneShare on FacebookFlattr the authorTweet about this on TwitterShare on StumbleUponShare on TumblrShare on RedditPin on PinterestShare on LinkedInShare on Google+

19 thoughts on “Neurocardiogenic Syncope (This Thing I Have)

  1. I would get a second opinion on the antidepressants and, if recommended, follow that advice. I can tell you from experience that a very low dose of anti-d’s pretty much saved my life before my condition (different than yours, but one that causes depression/anxiety) was finally diagnosed.

    I can also tell you that in such a small dose, the only thing I noticed was that I felt more “normal.” It was just enough to keep me from bursting into tears for little or no reason without altering my personality in any way. My biggest fear about them was pretty much the same as yours: Would I still be Me? AND if they don’t work for you, you can always ease off of them.

    I dislike taking medications as well, but I’m happy I gave it a shot.

    • Thanks so much for the encouragement, Laurie. And for sharing your own struggles. You’re right, I do need to investigate this further, and I know it. I guess I’m just scared of it — not of the meds themselves…but maybe that going back on meds will make it all too real again? I don’t know.

      At any rate, I recognize that it’s a journey I’m on, and I can’t let myself get stuck forever at one waystation or another. It’s tempting…but I do know it’s a bad idea, too.

  2. Patricia Middleton says:

    With the briefest glimpse at your title and the accompanying photo, I thought the term described your penchant for taking photographs of food. 🙂

  3. Lironah says:

    I’ve never had it so bad I actually faint, but for a long time I was thinking I must have low blood pressure or anemia or something, because standing up would make me dizzy. None of my doctors thought that was the case, though one of them did say my iron was low and put me on supplements, which have helped. I’m going in for a CT scan tomorrow morning to see if my splenomegaly has increased, and get more blood work done. No diagnosis for me yet.

    • Thanks for visiting and commenting, Lironah! I’m sorry for the difficulties you’re dealing with — I know all too well the frustration of trying to find a diagnosis! I hope your CT scan went well and that you’ll get some answers as a result. Blessings!

  4. I was diagnosed with NCS in early 2000’s and took beta blockers until I was pregnant in 2003.

    In 2009, the wheels fell off completely. I was passing out as many as 6 times every day of the week. My parents moved in with us to care for me and the children so that my husband could still work. I’ve seen many doctors of various stripes, going as far as Vanderbilt’s autonomic disorder clinic.

    In October of this year, I got some deeper answers. If you want, you can read about it at http://www.thediseaseisme.blogspot.com. I’m not done with a journey; in fact, I’ve barely begun…again. All the details are too much to push upon your readers, but contact me if you’d like to discuss.

    Amanda

    • Amanda, thank you for sharing this. I had no idea that you suffered from this, too! Of course, back in college, I didn’t know what I had. Back then, we thought it was a heart murmur or Wolff-Parkinson-White Syndrome.

      From what I’ve been reading, I’ve got a fairly mild form of NCS. On a daily basis, I see spots when I stand up. I’d say the irregular heartbeat happens maybe a couple of times a week. Last winter’s passing out episodes were the first time in four years.

      I can’t imagine how awful it would be to have it happen multiple times a day. I am so sorry you’ve had to live with that! I’ll definitely be checking out your blog. It’s good to know at least one of us with this condition has found some answers!

      Blessings on you,
      Courtney

  5. Allison says:

    Good for you for making such intentional, overall wellness oriented lifestyle changes! You go girl.

  6. Judy Dunn says:

    I am so sorry to hear this, Courtney. I had no idea. (Either you hid it well or I haven’t been very observant.) That has to be scary anytime you pass out. While I haven’t experienced what you are going through, I had a period of seizures in my early 20s that finally were attributed to damage from a car accident I had been in. It affected my life drastically (couldn’t even drive). Those kinds of lifestyle disruptions can be very, very tough.

    I’m with Allison. The one positive that I can see is that you’ve made some healthy changes. I laughed at your foodie comments because my daughter couldn’t even boil water and now she cooks all the time and watched all those food network shows. An amazing transformation. : )

    Take care of yourself and thanks for sharing such a personal piece of your life. All my best wishes for your health and happiness.

    • Judy, thanks so much for your kind words and encouragements! You didn’t miss anything, no worries. This is the first time I’ve really discussed it so openly. It’s not the focus of my blog or of another other part of my online life, so I don’t anticipate talking about it much.

      But for now, it’s out, and I’m glad. At the very least, it lets people know why I’m sometimes absent from the intarwebz venues. You’re not kidding when you say this kind of thing disrupts one’s life!

      It’s interesting that your past difficulties stemmed from seizures. We thought I was having seizures when I passed out last winter. Turns out that NCS can cause seizure-like symptoms. So I can relate a little bit to your not-so-fun experience.

      These frail, human bodies we have…. Can’t live with ’em, can’t live without ’em. ; )

      Best wishes to you and yours as well, Judy. Thank you. : )

  7. Rob Adams says:

    Don’t you just love obscure medical conditions? Mine is dermatomyositis, which is a lovely grab-bag auto-immune thingy.

    The minor stuff includes rashes and a penchant for choking. The real fun, though, is the way my immune system thinks my musculature is evil and therefore needs to be destroyed. It used to be fatal, but thankfully modern medicine can hold it back enough to keep me alive, even though I can’t lift my arms above my head.

    I think random out-passing would take me over the edge, though. Be careful, take care, and I pray you’ll be healed.

    • Rob, thanks so much for dropping by to read and comment! And for sharing your struggles — dermatomyositis sounds like it would take me over the edge. You have my sympathies, for certain.

      And yes, there is a great reason to be thankful for modern medicine! I would never discount that. I’d rather try to cure my own ills in natural ways…but I also recognize that there are some things that require stronger measures.

      Thanks so much for your prayers! You have mine as well. : )

  8. Caitlyn Coodey says:

    Just wanted to say thanks for sharing, I’ve had this for seventeen years now and though some of my details are a little different I really appreciate you sharing. It often seems that no one knows what on earth I’m talking about, so its lovely to read about someone else dealing with it. PS I’m also now following you on twitter. #neurocardiogenicsyncope-iansUnite!

    ~Caitlyn

    • Caitlyn, thanks so much for visiting and commenting! I’m glad this post encouraged you. I can relate well to the frustration of trying to talk to others about this and not getting any helpful feedback. It’s kind of a “silent disease,” unless it’s so bad that it’s debilitating. And if it’s not debilitating, people assume you can’t really be sick!

      And thank you for the Twitter follow. I don’t know when I started following you back, but I am following you! ; )

  9. Pamela says:

    hi there, I too suffer from NCS. My problems really began summer of 2011. I am on my 6th round of medication, have been on a beta blocker (second one since this all started) since March however it is causes other issues. my body I feel seems to reject medicine as I only seem to end up with the rare side effects or sever allergic reactions to medications that have never presented issues to other patients my doctors are treating. joy! anyhoo, i am in the process of weaning off the beta blocker and have an appt with a homeopathic doctor next week to hopefully find a more natural way back to health, i was curious as to how you are feeling with your own journey of homeopathic like treatments?

    • Hi Pamela,

      I’m sorry I’ve taken so long to reply. I had a baby in September, so everything blog-related has fallen somewhat by the wayside!

      My cardiologist told me that I can probably get away with continuing no meds if I keep my water and sodium intake high. Pregnancy and breastfeeding required me to up my fluids intake, and that seems to have a very positive effect on my NCS symptoms. And because I need huge amounts of protein, I’ve been eating 5-6 pieces of bacon for breakfast every day. So there’s my increased sodium.

      So at this point, I’m still doing well on no meds. I’ll admit, however, that I’m rather scared to get my cholesterol checked. ; )

      Unfortunately, I have to be off of the homeopathic supplements until I’m done breastfeeding. So I can’t say how much those might or might not have helped by now if I’d continued taking them. I developed a large number of food aversions during pregnancy, so I’m only slowly getting back into eating healthy.

      And you? Did your visit to the homeopathic doctor bring about any good changes? I hope so. Please let me know if you can.

      In the meantime, here’s to a healthier New Year for all of us!

      Courtney

  10. […] reason I don’t enjoy cooking is that it wears me out, and the main reason it wears me out is neurocardiogenic syncope. Even though standing in the kitchen for long periods of time doesn’t make me pass out, it […]

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