Neurocardiogenic Syncope support

I have decided to dedicate this blog mainly to discussions about my condition: Neurocardiogenic Syncope or NCS for short.  I have been on the.worst.episode.of.my.life and the misconceptions and suppositions I'm having to deal with are staggering and not helpful and in some circumstances, are harmful.  I would like to give voice to others who suffer from NCS because not only is the condition so misunderstood, but so are the people who spend most of their time looking and feeling good and healthy and normal.  I just want you to know that you are not alone.

About a week or so ago, I found a group on facebook called Neurocardiogenic Syncope Awareness.  It has become a cyber-Nirvana for me because these people get me, because these people ARE me.  Cue the harp music and angels because this has been a heavenly experience.  One of the women in this group stated that when she had her second tilt table test, she didn't faint and she didn't feel faint until they were lowering her back down to a horizontal position.  I literally got a tear in my eye because I just had my second tilt table test on July 30, 2013 and that was my experience, my exact experience.

When my second tilt table was negative, I felt betrayed.  I spent seventeen years prior to diagnosis being told there was nothing wrong with me.  My EKGs always come back negative.  Up until this last Holter monitor, nothing abnormal showed up there either.  What I heard for seventeen years of my life was, "There's nothing wrong."  So I would work until I dropped, literally.  I have a friend who can tell you he called me from his desk at the office to talk to me about a customer and I told him I wasn't feeling well and then I just went out.  They found me slumped over my desk with the phone still in my hand.  Until I dropped.  So having that second tilt table come back negative, I immediately retreated into the standby of "nothing wrong" and went back to work on August 2, 2013 even though I was having my typical morning fatigue (despite a good night's sleep) and vague icky feeling that precede an episode.  I worked for 3.5 hours and then I had to leave.  I came home and laid on my couch with my feet elevated.  And I have still been countering some doubt until I went to check in with the group on facebook today.  When I read that someone else had that happen to them, I had to post a response.

I had to post to this stranger on facebook because I knew her need to not feel like "there's nothing wrong".  I knew how important it is to have validation that someone else has your same symptoms, your same triggers, your same frustrations.  It was a relief  for me to know I wasn't alone in this experience and I wanted to provide her with this same relief because I know.

I saw a video posted on there to which I am posting a link.  http://abclocal.go.com/ktrk/video?id=9098112 and I have asked people to watch it.  This is on an ABC news station and it states it is due to NCS that this young man had an accident.  And there were tragic results.  The man with NCS survived, but three others didn't.  And this poor guy's heart stops.  He flatlines.  Thankfully, I don't, but now I'm having to wonder if I'm approaching the possibility of having to give up my car or my license because that would mean I'd have to give up some independence, some autonomy.  Ironically, NCS is considered Dysautonomia, kinda like your autonomy is gonna get dysfunctional. (That's not what it means, but that is what it feels like.)  I felt like saying, "Well, at least I'm not as bad as this guy."  And truly, I thank God that my heart doesn't stop for a few seconds, but my heart is dysfunctional.  And it's OK to admit to being frightened that right now, I can't make a sandwich for lunch because I don't have bread and don't have the ability to go two blocks to get some.  And that it's OK to be in tune with my body to know that when I feel like this, I'm more likely to faint so it's OK to recline on my couch with my feet up and not do anything I don't have to do.   It's even OK that it's taken me over an hour to write these few paragraphs out.  It's OK that I'm not doing anything productive right now. I've given myself permission.  Give yourself permission, too.

Ugh!  Heat and allergies.  I usually take a benadryl earlier in the evening to help me sleep through the night until I can take Claritin to get me through the day with the allergies.  As I am starting to write this, it is nearly 3:30 am and I gave up my bedroom for the living room (where the fan is) well over an hour ago after I woke up coughing and remembered that I'd forgotten to take my Benadryl.  Have I talked in a complete circle? Ok, good. We're all on the same page then.

I'm a writer.  I write as a means of catharsis, as a means of coping with whatever may be going on in my life.  And I'm candid and open about what's going on, to the point of TMI sometimes, but that's how I roll.  I keep a diary/journal and have since I was thirteen years old.  I get way more TMI in there, but I write in a couple of different mediums.  I like to think I'm witty, pithy, intelligent in the posts I put on facebook, but I realize there are times when I just come across as whiny.  Lately, I'm coming across as whiny, but I swear it's about trying to purge the whininess from my system.

NCS (neurocardiogenic syncope) is a form of dysautonomia, meaning my nervous system, the vagus nerve in particular is wonky.  And the more I read about my NCS, the more I'm running into walls.  As I stated in my last whine, um blog post, we know I have NCS and we know that pharmacological treatments have been exhausted either because they don't work, worked for a while but stopped working, or exacerbated my symptoms.  And I even went for years without incident, but have fainting since I was 14, pretty much all the way through high school, but even then, two years I fainted at a long parade in which my high school band marched and two years I didn't, one of them being my Senior year and as saxophone section leader, I was glad to get to walk around to check on the rest of my large section.  And people would come up to me and say, "I thought you fainted along the parade route."  And I kept having to repeat myself that I had not.  It turns out one of the Sophomores in my section who also had dark hair had gone down and people just assumed it was me. 

Sorry, I digressed right away from the topic for a moment there.  Since receiving the diagnosis of NCS in July 1999, I've done my best to stay on top of treatment and therapies.  There haven't been any new drugs I've seen.  And there is a very real possibility that this condition will be one where I just have to learn to live with my body (heart) being broken and irreparable.  Some people think this means I'm refusing to deal with my condition or that I'm giving up.  I can assure you, I am dealing with my condition and I'm not giving up.  Sadly, I have to acknowledge that I'm aging and with age comes a break down of the body.  I'm very fond of saying, "I'm too young to feel this old."  I mean it. I'm 45, not 65, and other than diabetes which as far as I know is under control, I'm pretty healthy.  But that doesn't necessarily mean it's so.  And right now, over a month of not being able to drive two blocks to work because I can only work for so many hours sitting upright and then I have to lie down and may have to stay there for hours, I am willing to concede that perhaps my diabetes is not as well controlled as I would like to think it is.  Today I had to go to my doctor's office to have him fill out my short term disability paperwork eleven days after he filled out the same info on FMLA paperwork.  When I stepped on the scale, I noticed I was in a new decade for weight.  I pointed this out to one of the two nurses and she confirmed that I had lost seven pounds.  Seven pounds in eleven days.  I can't possibly be healthy, can I?  There must be something else going on and complicating my NCS with it's additional nefarious presence.  Or, maybe it's that a solid month of eating a lot of pb&j has resulted in dramatic weight loss, except my only exercise is changing positions on the couch from sitting to supine, and not even vigorously.

My doctor had lab work done on me today.  At my insistence and upon the advice of a friend who was kind enough to toss around what if (more like what the hell!) scenarios with me, he is checking my hormone levels because at my age, I might be perimenopausal and my hormones might be messed up to the point where it's impacting my general health.   Awesome.  Or it could be that my glucose is out of whack.  Or it could be that my NCS is just getting worse all on it's own without any additional factors.  The first two would be welcome because if it's hormones, slap a patch on it and it will get better and if it's blood glucose, up the oral meds or get rid of them and go on insulin.  Cause/effect; problem/solution.  Yay!  I love it when my problem has a solution!  However my fear is that it's just the old NCS rearing it's ugly head and medical science still doesn't fully understand the problem which makes finding a solution much harder. 

Last month I had a Holter monitor I had to wear for 48 hours over a weekend.  I was ticked off because the previous five or six times I'd worn the Holter, nothing showed up, nothing, nada, zip, zilch, zero.  I was surprised to get a phone call from my primary care doctor's office telling me it showed Premature Ventricular Contractions and Premature Atrial Contractions.  And I thought, "Yay!  Problem identified."  Doc's office said he would like to start me on Verapamil, but would wait to see what the cardiologist had to say.  So I went online to see what Verapamil was supposed to do for me and I read “Treats high blood pressure.”  I interpret this to mean its intent is to lower blood pressure which would be great if I didn’t already have low blood pressure which tends to make me faint anyway.  And yes it also said it’s used to treat arrhythmias which is definitely what the PVC/PAC issues are considered to be, so perhaps it will work.  I’m willing to try because up until last month, arrhythmia was not ever discussed.  Neither were the terms bradycardia or tachycardia being bandied about.  So my heart is out of step with itself and sometimes beats too slowly and sometimes beats too quickly and previously with my NCS, all that was ever discussed was low blood pressure.  So these are new developments and I hope and pray that these problems have a solution.

 Ugh!  Heat and allergies.  I usually take a benadryl earlier in the evening to help me sleep through the night until I can take Claritin to get me through the day with the allergies.  As I am starting to write this, it is nearly 3:30 am and I gave up my bedroom for the living room (where the fan is) well over an hour ago after I woke up coughing and remembered that I'd forgotten to take my Benadryl.  Have I talked in a complete circle? Ok, good. We're all on the same page then.

I'm a writer.  I write as a means of catharsis, as a means of coping with whatever may be going on in my life.  And I'm candid and open about what's going on, to the point of TMI sometimes, but that's how I roll.  I keep a diary/journal and have since I was thirteen years old.  I get way more TMI in there, but I write in a couple of different mediums.  I like to think I'm witty, pithy, intelligent in the posts I put on facebook, but I realize there are times when I just come across as whiny.  Lately, I'm coming across as whiny, but I swear it's about trying to purge the whininess from my system.

NCS (neurocardiogenic syncope) is a form of dysautonomia, meaning my nervous system, the vagus nerve in particular is wonky.  And the more I read about my NCS, the more I'm running into walls.  As I stated in my last whine, um blog post, we know I have NCS and we know that pharmacological treatments have been exhausted either because they don't work, worked for a while but stopped working, or exacerbated my symptoms.  And I even went for years without incident, but have fainting since I was 14, pretty much all the way through high school, but even then, two years I fainted at a long parade in which my high school band marched and two years I didn't, one of them being my Senior year and as saxophone section leader, I was glad to get to walk around to check on the rest of my large section.  And people would come up to me and say, "I thought you fainted along the parade route."  And I kept having to repeat myself that I had not.  It turns out one of the Sophomores in my section who also had dark hair had gone down and people just assumed it was me. 

Sorry, I digressed right away from the topic for a moment there.  Since receiving the diagnosis of NCS in July 1999, I've done my best to stay on top of treatment and therapies.  There haven't been any new drugs I've seen.  And there is a very real possibility that this condition will be one where I just have to learn to live with my body (heart) being broken and irreparable.  Some people think this means I'm refusing to deal with my condition or that I'm giving up.  I can assure you, I am dealing with my condition and I'm not giving up.  Sadly, I have to acknowledge that I'm aging and with age comes a break down of the body.  I'm very fond of saying, "I'm too young to feel this old."  I mean it. I'm 45, not 65, and other than diabetes which as far as I know is under control, I'm pretty healthy.  But that doesn't necessarily mean it's so.  And right now, over a month of not being able to drive two blocks to work because I can only work for so many hours sitting upright and then I have to lie down and may have to stay there for hours, I am willing to concede that perhaps my diabetes is not as well controlled as I would like to think it is.  Today I had to go to my doctor's office to have him fill out my short term disability paperwork eleven days after he filled out the same info on FMLA paperwork.  When I stepped on the scale, I noticed I was in a new decade for weight.  I pointed this out to one of the two nurses and she confirmed that I had lost seven pounds.  Seven pounds in eleven days.  I can't possibly be healthy, can I?  There must be something else going on and complicating my NCS with it's additional nefarious presence.  Or, maybe it's that a solid month of eating a lot of pb&j has resulted in dramatic weight loss, except my only exercise is changing positions on the couch from sitting to supine, and not even vigorously.

My doctor had lab work done on me today.  At my insistence and upon the advice of a friend who was kind enough to toss around what if (more like what the hell!) scenarios with me, he is checking my hormone levels because at my age, I might be perimenopausal and my hormones might be messed up to the point where it's impacting my general health.   Awesome.  Or it could be that my glucose is out of whack.  Or it could be that my NCS is just getting worse all on it's own without any additional factors.  The first two would be welcome because if it's hormones, slap a patch on it and it will get better and if it's blood glucose, up the oral meds or get rid of them and go on insulin.  Cause/effect; problem/solution.  Yay!  I love it when my problem has a solution!  However my fear is that it's just the old NCS rearing it's ugly head and medical science still doesn't fully understand the problem which makes finding a solution much harder. 

Last month I had a Holter monitor I had to wear for 48 hours over a weekend.  I was ticked off because the previous five or six times I'd warn the Holter, nothing showed up, nothing, nada, zip, zilch, zero.  I was surprised to get a phone call from my primary care doctor's office telling me it showed Premature Ventricular Contractions and Premature Atrial Contractions.  And I thought, "Yay!  Problem identified."  Doc's office said he would like to start me on Verapamil, but would wait to see what the cardiologist had to say.  So I went online to see what Verapamil was supposed to do for me and I read “Treats high blood pressure.”  I interpret this to mean its intent is to lower blood pressure which would be great if I didn’t already have low blood pressure which tends to make me faint anyway.  And yes it also said it’s used to treat arrhythmias which is definitely what the PVC/PAC issues are considered to be, so perhaps it will work.  I’m willing to try because up until last month, arrhythmia was not ever discussed.  Neither were the terms bradycardia or tachycardia being bandied about.  So my heart is out of step with itself and sometimes beats too slowly and sometimes beats too quickly and previously with my NCS, all that was ever discussed was low blood pressure.  So these are new developments and I hope and pray that these problems have a solution.

But what if they’re solutionless problems?   What if this is a matter of faith and I’m only to know there is a problem but not know a solution while I shuffle around this mortal coil?  What’s going to happen to the single lady who lives alone with her cats?  (Yeah, cliché, I know.)  Will anyone take her in if she is unable to work at a job to earn a living?  (My cats refuse to get a paper route to help out with expenses but still insist on being fed.)  Would I be able to get SSI Disability if I have a solutionless problem condition?  Because unless you have this or POTS (Positional Orthostatic Tachycardic Syndrom), I look like a slacker who expects people to feed her grapes and pay her for the privilege.  And I used to think I wouldn’t mind being independently wealthy and just sit around doing nothing.  Let me tell you, after a month of doing just that, I’m stir crazy.  I would like to go out and do stuff.  I would like to feel up to finally unpacking around here after I came to the conclusion that buying a house would be a really bad idea because, I can’t stress this enough, I really don’t think I should live alone.  And even if I could live alone, having a house means having a yard I’d need to keep up and with heat being a trigger for my fainting, I wouldn’t be able to do much and I really, really wanted a garden so I could grow my own vegetables.  Pipe dream and I finally had to put the fantasy aside and deal with reality.  I just made this decision a few months ago after I had some huge vet bills to pay for my sick cat, who really needs to get a job and help out around here. 

Now the living room and kitchen areas need to finish getting unpacked, but I don’t have the energy to stand to do it.  I don’t have the stamina to sift through and figure out where it needs to go.  But I can sit on the couch and play mindless games on facebook, but even that’s getting old.  I had hoped to join a choir at one of the local Catholic churches around Lansing, but the other day, I was singing (trying to) and I sounded like Peter Brady and I got tired, from singing.  What.The.Hell???  I warn people coming by to visit that that area looks like an episode of Hoarders.  But if you look at my bedroom and the front hall and the bathroom and even the kitchen itself, all is well.  I unpacked my kitchen first thing because I love cooking and baking so I would need that stuff first.  And my bedroom looked like a war zone for a while but I did get that put together just last month, the beginning of last month. So here’s the timeline: moved in October 2012, various issues around apartment and maintenance not being addressed well so considered taking my bonus and/or tax return to put down payment on house, discover bonus is nowhere near the size I was expecting (none of ours were where I work), cat gets sick and needs abscess drained draining my savings along with it, decide it would be a bad idea to buy a house and try to live in it on my own, decide to stay in apartment and finish unpacking, get bedroom unpacked, finish unpacking books (I have three bookcases and they’re all full), start passing out before my periods instead of in conjunction with them, episodes lasting longer, FMLA leave of absence due to not being able to physically perform the demands of my job which consist of sitting in a chair and talking to people on the phone.  Yep, I’m whiny and yep, I think it’s merited.