Anyone with NCS that has seizures?

[octobermom0103]

My daughter's (age 7) bp and heart rate drop so fast and so low that she ends up having seizures/convulsions from the lack of oxygen.  She had a back to back episode in front of her doctor once that resulted in a heart rate of only 10 bpm and no bp registered.  She was originally diagnosed with epilepsy because of the seizures but I was convinced it was heart related and took her to Children's Hospital Boston for a second opinion.  They did long term monitoring/VEEG over a two day period in December 2010 and were able to tell us that it definitely was not epilepsy or irregular heart rate but they did see "marked bradycardia" and diagnosed her with NCS. We are seeing a new cardiologist in a couple of weeks and have so many questions/concerns.  We have been controlling the attacks with lots of salt and gatorade but her weight has dropped as a result of having to drink so much and is now underweight (her BMI percentile is only 3.94 she was in the 11 percentile before this).  So we are going to look at the meds option.  I'm concerned since I have yet to find anyone that has seizures from this or someone with a very low resting hr (hers in only 49 but she is very athletic and the drs say this is ok).  Thanks for any input or advice!

OM

[tkimber]

I'm so sorry to hear of your daughter's issues.  I wanted to tell you that when I was about 9 or 10, I was blacking out often in school.  They did find something wrong with the brain waves at the time and called it petite epilepsy. I, to this day, am not sure they had it right.  Anyhow, these episodes continued throughout my life as a young girl.  I did ok, but got sick often, but nothing that slowed me down too much.  When I was 28 or so, my heart rate and blood pressure dropped very low so went to the emergency room-while in the hospital, I went into grand mal seizures.  Several of them.  It was terrible and quite frightening, but the next day I walked out of there as if nothing ever happened.  I do get the severe drops in blood pressure and heart rate still, but have never had the seizures ever again.  I am now 47 and have just been diagnosed with autonomic neuropathy with an occassional autonomic crisis.  I was told the seizures were secondary to the low blood pressure and low heart rate.  I don't know if that helps, but I am hoping that you can find a good doctor to help you.  This is so terrible when this stuff happens to our children.  And I wanted to say, I have found a lot of help in neurologists too.  I'm sure the girls have already told you that, they are so amazing with all of their information.  
Good luck and good health to you
Tkimber

[Jade1930]

My son has also has seizures. After EEGs, VEEGS and other tests, the doctors have not been able to find out why. He has them when he is coming out of a fainting episode but also will have absence seizures out of the blue. Those are hard to keep track of. They have concluded that it is part of POTS and we keep him on anti-seizure medication. We weaned him off for a couple of months to do additional testing but had to put him back on because he could not function (bad grades, no energy to do his favorite things, etc.).

He also has tachycardia and bradycardia. He is athletic and has an average resting rate is between 45-50. He currently takes mediation for his SVT's that doesn't lower his HR.

Nick has a hard time keeping weight on but we keep him supplied with tons of salty snacks. He has to eat every couple of hours. His school has been great about accommodating him. And the biggest help to him is his morning coffee. If he doesn't have it, he is foggy all day.

Hope that helps!

[Heiferly]

Our bodies have different metabolic needs when we are asleep.  Our core temperature, blood pressure, heart rate, respiration rate ... all of these things are on that "circadian rhythm" (along with many, many other internal levels/functions) and are at rates/levels overnight while we are sleeping that just wouldn't ... well ... "work" if we were awake.  Our brain is engaged in entirely different processes (the different stages of sleep from light sleep through dream or REM sleep on down to the deep stages of sleep, all of which have their own functions), our body is basically engaged in its minimal/basic functions, and you are in "restoration mode."  

Another thing to remember is that heart rate and blood pressure do not tell the whole story, especially when you're talking about something as complex as cerebral perfusion (a significant reduction thereof being the trigger for a faint).  Oxygen perfusion of our tissues can be viewed dynamically through a of a number of factors:  heart rate, systolic pressure, diastolic pressure, pulse pressure (i.e. systolic - diastolic BP = pulse pressure), stroke volume, cardiac output, ejection fraction ... the circulatory system is, that is to say, not nearly so simple as our home BP cuffs make it out to be!  Moreover, the blood pressure you measure at your upper arm is not *necessarily* the same pressure at which the blood is flowing through your cerebral vessels; this has been estimated/documented through mean cerebral artery velocity studies and transcranial doppler.  All of the jargon here is irrelevant.  The bottom line is that our BP cuffs are an imperfect tool that only give us part of the picture.  Trust the symptoms first and foremost, and the cuff second.  It is A tool in our toolbox, but it is only one of many and it is far from infallible.

Dr. Grubb is probably the best place to dig in and start gaining a fundamental understanding of the circulatory system's role in syncope.  I hope you like his book!

[octobermom0103]

Thanks for the replies.  I know her "normal" base hr is about 86 and anything below 70 results in ringing of the ears and dizziness and fainting/seizure.  Often at night while lying in bed she will start to have an episode with a hr rate in the low 60s but can stop it from progressing by laying flat and putting her feet up (this happened while we were in the hospital).  This is where I get confused.  If 60 is too low while lying down, then how can 49 be ok while sleeping?  The entire night her hr hovered right around 49 and they had to turn off the heart rate alarm because it just wouldn't stop.  Normal hr for her age is 80 - 120. She is a sound sleeper and seems fine in the morning - full of energy and ready to go.

Thanks for the book recommendations - I've seen the titles before while researching but hesitated to buy them.  I'll certainly get them now!

[Heiferly]

To add just a bit to halbashes' excellent comment, there several of us here with "convulsive syncope" (that's the name some experts give to the non-epileptic seizures associated with syncope that you're describing ... you may want to read "The Fainting Phenomenon" by Dr. Blair Grubb, it explains this and much more).  Not only that, but as I've learned in more technical texts than the one I just mentioned (i.e. actual medical textbooks on autonomic dysfunction, whereas "The Fainting Phenomenon" is suitable for laypeople), ANY person with syncope would EVENTUALLY go into anoxic "seizures"/convulsions were you to hold them upright to prevent the blood from returning to the head as the body is trying to get to happen by fainting/falling horizontal.  It is the failure of restoration of sufficient cerebral perfusion levels that causes this phenomenon of convulsive syncope.

When this occurs, you can lessen the length of these episodes by "helping" the blood to return to your daughter's head as rapidly/easily as possible.  While many people's instinct when a person passes out/falls is to want to put a cushion/pillow under the person's head, you don't want the head elevated at all if possible (of course cushion the head if it's on a hard surface and the convulsions are causing it to bang on the surface, though).  You DO want to elevate her feet.  My caregivers will either hold mine HIGH up in the air with their hands or prop them up on a chair if they will stay (which is to say, you want them propped up higher than just a pillow or two).

Here's a link to the book I mentioned:

http://www.amazon.com/Fainting-Phenomenon-Understanding-People-Faint/dp/1405148411/ref=sr_1_1?ie=UTF8&s=books&qid=1299551214&sr=1-1

Let us know about further questions you have,
Best,
-Heiferly.

[halbashes]

Patients with Neurocardiogenic Syncope, and other forms of Dysautonomia can have both seizures, and seizure-like episodes associated with fainting.  In my experience, it is relatively common to be misdiagnosed with another condition, (usually Epilepsy, or Anxiety), prior to being correctly diagnosed with any form of Dysautonomia.  My own diagnosis took approximately two years, and I was first labeled as having Epilepsy as well.

Many consider a normal heart rate to be between seventy and seventy-five, but that is merely the average heart rate.  There are many people out of that range, and quite healthy.  Patients with disorders of the Autonomic Nervous System can have particularly peculiar heart rates though.  So, is her heart rate normal?  It certainly isn't normal whenever she is experiencing symptoms.

I would recommend testing both her heart rate, and blood pressure on the daily bases to learn a baseline.  Record this information for her doctor, as well as symptoms.  Additional recordings whenever she isn't feeling well will help you to determine at which point her heart rate is too low.

For example, if she feels well when her reading is sixty-eight, but unwell when her reading is forty-nine.  This provides you with information.  For any state of altered consciousness, (fainting, seizure, confusion, lathery, etc.), test her again.  Not during a seizure, but after she is settled, providing she is calm, and not combative.  A reading that is again below the point she had felt well, proves that this low of a heart rate is simply too low for her.

Lastly, I would recommend taking her to see a Pediatric Cardiologist at an academic teaching hospital.  Specialists at these hospitals are usually the most up-to-date on the latest medical research, and also the most opened to working with complex disorders.

Autonomic Dysfunction & Dysautonomia Index Page
http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction--Dysautonomia-Index-Page/show/857?cid=196

Childhood Dysautonomia
http://www.medhelp.org/health_pages/Neurological-Disorders/Childhood-Dysautonomia/show/942?cid=196