Thursday, May 31, 2012

Fainting: The Final Frontier ( and Neurally Mediated Syncope)

The final frontier. 
These are the voyages of the vertically impared, set out to reach new heights of embarassment - flashing panties and falling where no one has fallen before. 

(Dooo-do-do-do-duh-duh-dum dhuuuduum!) <----That was Star Trek Next Generation music/refernece for those of you that happen to not be nerds.

So lets talk fainting.  I have been writing furiously for the new Non-Profit I am helping co-found (Dysautonomia International - website coming soon!), and by far the most difficult subject to summarize into a consise, easy to understand format was syncope and NMS (neurally mediated syncope).

So, here is a brief run down on fainting and fainting related dysautonomia disorders.

Syncope = Fainting = Passing out.  This means you have lost consciousness, or have come close and have gotten horizontal in time to prevent the actual faint, otherwise known as "pre-syncope."  This happens because there is not enough blood in your brain.  Many perfectly healthy peeople faint during their life time, and it is a one or two time event - and they have no other health issues causing it or as a result.  Or - it can be a sign of something serious.  There are many types of fainting, the most common being vasovagal, or reflex fainting.
According to the Mayo Clinic (all linked info in this post is from the Mayo Clinic site, I have found it very easy to read and understand):

"Vasovagal syncope (vay-zo-VAY-gul SING-cuh-pee) is the most common cause of fainting. Vasovagal syncope occurs when your body overreacts to triggers, such as the sight of blood or extreme emotional distress. The trigger results in vasovagal syncope — a brief loss of consciousness caused by a sudden drop in your heart rate and blood pressure, which reduces blood flow to your brain.

Vasovagal syncope is usually harmless and requires no treatment. However, you can injure yourself during a vasovagal syncope episode. Also, your doctor may recommend tests to rule out more serious causes of fainting, such as heart disorders."

But - if you faint or come close to fainting regularly, there is something going on.  Recent news stories and the medical community have also focused on the fact that if you faint only once, you should still go to the ER and follow up with your doctor to make sure it is not a sign of something more serious.

According to Mayo:
"Before a faint due to vasovagal syncope, you may experience some of the following:
  • Skin paleness
  • Lightheadednes
  • Tunnel vision — your field of vision is constricted so that you see only what's in front of you
  • Nausea
  • Feeling of warmth
  • A cold, clammy sweat"
Not all fainting is vasovagal.  My fainting/pre-fainting is a bit different, everyone's is - but your specific symptoms before fainting can clue your doctor in as to what is going on, so make sure to write them down after it happens.  Mine include:
  • Feeling the blood leave my head, literally
  • Impending feeling of, "Oh God, oh God, I'm going to die"
  • Legs get weak
  • Face sometimes flushes and gets hot
  • Sweaty hands
  • Pain in feet/legs
  • I start to feel my arms and face go numb, and tingle like they are falling asleep to the extreme - which is weird - but that is my first big clue that I need to be flat RIGHT NOW
  • For the record - I supposedly don't have NMS, just good old POTS, Orthostatic Hypotension, and Autonomic Neuropathy currently of unknown origin.  I have had vasovagal events where my blood pressure and heart rate drop, but I was pregnant, and now that I have a pleasantly empty uterus (and healthy gorgeous baby), my heart rate doesn't plummet.  But my BP will fluctuate and sometimes crash.  I am lucky to have warning - and I can get flat before completely passing out or collapsing.  My upright time is about 2 minutes before it gets bad right now.
If you pass out, or come close, your doctor should recommend a full cardiac work up to rule out structural problems with your heart that can sometimes be fatal.  Some of these tests include:
  • An EKG/ECG - otherwise known as an Electrocardiogram.  This reads the electrical rhythms of your heart, and can find abnormalities.
  • An ECC - or an Echocardiogram.  This is an ultrasound of your heart.  They may even perform a Bubble ECC (I've had one!) to watch the blood flow through your heart as it beats.  This can help detect holes, valve issues, etc...
  • A Tilt Table Test - to see what your blood pressure is doing when you go from laying to standing.  An orthostatic set of vitals (or a "poor man's tilt") may be performned in a doctors office instead. 
  • Exercise stress test. This test studies heart rhythms during exercise. It's usually conducted while you walk or jog on a treadmill. 
  • Blood tests. Your doctor may look for conditions, such as anemia or hypoglycemia, that can cause or contribute to fainting spells.  Also - they can check your blood to make sure you are not having a heart attack (that's an important one!).
So what the heck is Neurally Mediated Syncope (NMS)?

NMS used to be called NCS - or Neurocardiogenic Syncope.  It was renamed because the term is inaccurate - cardiogenic implies heart involvement, when it is actually caused by your nervous system (hense the term neurally mediated) triggering the event. 

In a nutshell - NMS is when you chronically (repeatedly) have vasovagal fainting episodes.  So your heart rate AND blood pressure drop, causing you to faint.  This is thought to be caused by blood pooling in the extremeties.  This is different from POTS and Orthostatic Hypotension.

POTS is an increase in heart rate of 30 beats per minute uppon standing, within 10 minutes, with or without changes in blood pressure.  Remember that POTS is just a syndrome - or collection of symptoms, and something else is causing you to faint.  POTS does not cause you to faint per say, but can make you feel awful in many ways, and very lightheaded.  The Mayo Clinic doesn't even have a section for POTS on it's main website, or any variation of the name, because they tend to focus on the cause.  They do have a podcast and YouTube series about POTS, and resources here

If you are fainting and have been told you "just have POTS," it's time to get a new doctor.   Please see FIND YOUR POTS CAUSE.

Orthostatic Hypotension (OH) is a drop in blood pressure upon standing, without a significant drop in heart rate. Can cause fainting or dizziness, and can be very mild or very severe - or indicating a serious condition.

So, in summary:
NMS is when you faint or come close to fainting because your heart rate and blood pressure drop (probably due to blood pooling in your legs - numerous things can cause that!). Not to be confused with POTS or OH.  You can have both POTS and NMS, or POTS and OH.

All of these conditions require finding out WHY THEY ARE HAPPENING, especially if you are fainting and don't know why.   

Some resources regarding fainting and NMS:

Hope this helps clear up some of the confusion.  Have a great day!


  1. Hi Claire- We are going to the Children's Heart Institute in Reston next week to see Dr. Abdallah. He's going to do the tilt table & ECC since our cardio won't do it. She hasn't fainted or near fainted since she's been on Flourinef. She's also on Mestinon & Cyproheptadine. I called today to see if she needed to stop or decrease meds before testing & they said when I get there the doctor will figure all that out. My only problem is that we are 3 hours away not including stopping every 30 min for potty breaks. I know you are not a doctor, but based on your massive amount of knowledge, & the fact that I can't just drive back the next day- Do you think I should call back to speak to a nurse to see if the meds will affect it?
    Cara Colacchio

    1. Hi Cara!
      I'm so glad you guys are getting these tests done. In my experience and from reading the lit (insert disclaimer about not being a doctor :) - being on medication will definitely change your TTT results. I would call the nurse and get Dr. A's specific instructions - demand to talk to someone on his medical team. I had a usedless TTT while on a beta blocker and florinef years ago, and the meds were doing their job - so it came back negative and normal. I'd hate to see you drive all that way to find out you have to delay or come back.
      My recent TTT required I stop meds for 24 hours, but my doctor just mentioned 5 days off meds being a standard as well. Dr. A is VERY well regarded and knows his stuff, he will direct you correctly - but waiting until you are there to find out IMO is crazy - she'll need at least 24 hours off the florinef and mestinon, not sure about the other med.
      Is there a possibility you can go the day before and stay in a close by hotel so the travel isn't so bad with her off meds?
      Anyways, let me know what they say, I'm interested and I hope you can come up with a plan that works. I know it may be miserable for your daughter, but them seeing the status of her condition will be helpful for treatment in the long run.
      Best of luck! xoxo

    2. I agree double/triple check on the meds as they can obscure what is going on and it'd be horrible for you to waste the trip when you live so far away. Having said that I wouldn't stop any meds without the doctor saying it is necessary. I know first hand that stopping and starting Florinef can be quite unpleasant.

      I've had 4 TTT now and each time it was a 48hr minimum of no meds and then fasting 6-12hrs pre test. Not pleasant but necessary. I'd second Claire's suggestion and see if you can stay somewhere close by the night before. I hope you get the answers you need and it's not too unpleasant for her.

  2. Great work Claire. The information bias is not in NCS/NMH's favour so it's nice to see some out there. The majority of the information seems to be in elderly patients as it is a huge falls risk. Some of the work on postprandial syncope isn't too bad, but it would be nice to see more relating to things like when you go to the loo as a lot of that is outdated or poorly written. My syncope was well controlled for the past few years but has come back with a vengence and I'm back to the testing route, ugh. I'd be happy at this point if I could get back to the longer pre-syncope to give me time to get horizontal, but this 'oh shit!' then straight to collapsing sucks. Especially the passing out whilst sitting on the couch with my feet up. Now that's a barrel load of crap!

    1. Thanks Michelle! Yeah - that passing out while sitting up with legs up is NOT GOOD. I hope you get some answers - there don't seem to be many out there right now. So frustrating. It IS a barrel load of crap!

  3. Cara, I have never heard of a TTT being worthwhile with meds. Most docs certainly don't want them in the patients system so definitely call back and ask for the doc to reply.

  4. By the way, on FB in dysautonomia connection I am usual on as DizzyJeff

    1. Hi Dizzy Jeff! :) I agree, and usually they want you off food and drink that morning as well.

  5. For Cara~
    I don't know if you'll see this, but Dr. Abdallah is our cardio (my daughter + me), as well. When I had my TTT (daughter hasn't had one at this point) I was told to go off all meds and to "eat very lightly" the morning prior (my TTT was in the early afternoon). Call back and ask again - and again! - because you really don't want the results skewed, especially when you live so far away. Hope this helps!

  6. Good info in the above. If you need more individualized attention, check out