Dysautonomia (Autonomic Dysfunction) Community
does this sound familiar to anyone...???
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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does this sound familiar to anyone...???

my son has also been diagnosed with ncs. he didn't get the tilt table test however they did insert a loop recorder in his chest for over a year. this detected that his heartbeat was going really low he did have episodes where his heart would beat too fast and then go too low. in august he had an episode where his heart actually stopped beating for 16 seconds. he is on a beta blocker and water retainer tomorrow he will stop the water retainer and start on sudafed 3 times a day. i've never heard of this and am curious to see how it works. this is our last hope if this doesn't work they are looking at putting a pacemaker in. his symptoms started 4 years ago...they include loss of color fainting throwing up stomach pain sweating clamy skin incoherent...it just depends some "episodes" aren't bad and some are. he can have one every month or go 6 months without one. i want the tilt table test but i'm guessing since the monitor picked up his heart not beating and monitored his heart for one half years the doctors have a pretty good idea that he has ncs. we were told when an episode comes on to lay him flat on his back asap. he also has a hard time regulating his blood pressure when this happens. we were told lots of water and/or gatorade and lots of salt we get blood work ever so often to make sure his electrolytes aren't being thrown off. also we are to watch the heat and heat index. anyways i don't know anyone else with this condition and am looking for some insight and maybe advice from others who have or have children with ncs
thank you
ginger

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492869_tn?1285022533
Is he being seen by a Dysautonomia Specialist?  With record of his heart pausing for up to sixteen seconds, a pacemaker may very well be a good option for him.  Depending on the exact mechanism of his fainting episodes, (determined by a Tilt Table Test), it may eliminate some of his fainting episodes.

I wouldn't expect it to eliminate the fainting episodes entirely though.  It could, but it won't necessarily because his blood pressure could still crash.  It really depends on exactly what his body is doing during these episodes.  Here is a list of Dysautonomia Specialists:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
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881165_tn?1265988188
I'm so sorry you're going through this!  I've had my heart stop twice from lack of blood, but both times were during tilt tests, so the situation was more controlled.  It really is important to have a thorough tilt test with lots of monitoring (EKG, blood flow, catecholamine levels) run with the test.  There are many different ways that the body can stop functioning in this process.  I imagine this is probably complicated by the fact that your son is still growing.  Beta-blockers made my problem worse, because they can lower BP and also lower pulse.  Salt retention helped a little bit.  If your son likes canned soup, it's a great source of sodium.  In my case, Sudafed helped short term, but then my heart started racing.  It might work great for your son, though.  Have your doctors mentioned ProAmatine (midodrine, a vasoconstrictor) or Mestinon (helps muscles contract)?  ProAmatine is a very common drug to try with NCS, and Mestinon is becoming more so.  Has your son seen a neurologist?  Sometimes a clear neurological cause can be found for this and treated.  I really wish you the best!
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963651_tn?1247532514
thank you  both so much! from what i understand the sudafed works as a sort of vasoconstrictor. haden has seen a neurologist and had many test run but everything came back normal. we are trying to up his salt intake and i will have to try the canned soup. he isn't a big fan of just salt.  thank you both for the information. it is so nice to know others with this same diagnoses...it sure helps alot.
ginger
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881165_tn?1265988188
Was he tested for Small Fiber Neuropathy?  I just found out this year that this is the cause of my problems.  It doesn't show up on EMG or most other neurological testing.  It must be diagnosed with a skin biopsy (which is fairly painless), and a lot of neurologists don't seem to know much about it.  It's a type of peripheral neuropathy where the autonomic nerves all over your body get destroyed.  If you look up "Peripheral Neuropathy" in MedHelp's Health Topics, there's a pretty good description of it.  Don't know if this is the case for your son, but I figure you want to explore every possibility :)
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963651_tn?1247532514
i've never heard of this before but i will be asking about it. i am all about exploring every possible avenue when it comes to haden's health. thank you so much! i appreciate this advice so much...
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986162_tn?1297442041
It certainly does sound familiar. I have PAF & NCS and my son has POTS & NCS. Between the two of us we have a lot of experience dealing with weird symptoms. Everyones case is different and must be treated so. I agree with halbashes, your son should see a Dysautonomia Specialist. I have been told my 2 different Cardiologists that a pacemaker would only put money in their pocket and put me through an unnecessary procedure. I would still be passed out on the floor with a pacemaker in me. If the problem is the heart itself then a pacemaker is needed. But if it is from the nerve signals sent to the heart a pacemaker will not help.
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Sounds familiar to me too.  I have NCS as well.  I take a vasoconstricter as well (not sudafed but I have heard that used before).  I only started to use one about a month ago and it really does seem to help.  

My neuro sent me to my normal Cardio for testing and dx and I went and was told to drink gatorade and salt everything I put in my mouth.  I tried it for a couple weeks, BP went really high.  I finaly got a referral to Dr Grubb's office, differerent advice.  Beverly the CNP is really woderful, I saw her instead of waiting 9 months for the 1st avail with Dr Grubb.  I go back in a month for the loop recorder myself.
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492869_tn?1285022533
Though ProAmatine, (Midodrine), can be an excellent drug, it can in rare cases slow the heart rate significantly in Neurocardiogenic Syncope patients.
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492869_tn?1285022533
Which vasoconstrictor are you currently using?  I'm glad it's working well for you!  Good luck with your loop recorder!
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