Vasovagal Neurocardiogenic Syncope

[Victoria]

My husband and son are both being treated for narcolepsy. The sleep study doc said our son inherited it from his dad because there is a familial component to N.

Hubby complained of dizzy spells a while back, and guess what? He got a TTT. He fainted, the cardio diagnosed him with Vasovagal Neurocardiogenic Syncope, handed him a script and said these should stop the fainting. Problem is (or the good thing is), the only time he fainted was during the TTT.

Our son also experiences lightheadedness, migraines, chest pain, palpitations, weakness. . . .

What exactly is Vasovagal Neurocardiogenic Syncope? I know now it is a form of autonomic dysfunction, I know what each term means, but what exactly is it when the terms are combined? From what I've read it sounds like a misnomer? Can anyone define this for me?

Does anyone have knowledge of Autonomic Dysfunction and Narcolepsy as a combined entity?

Sorry for burning up the forums so much. I have more questions than answers and between the three of us we are a family in medical crisis.

[songcanary]

My understanding is that neurocardiogenic syncope is the sudden drop of BP with the associated symptoms of dizziness, weakness, nausea etc. In contrast, the gradual drop of BP is called orthostatic hypotension, which is what I have. I don't know much about narcolepsy, sorry. I do have a dear friend with it and she functions very well with meds.

[potsgirl]

I also have pretty severe orthostatic hypotension, but my BP drops like a rock when I get up from laying down. My TTT helped verify this, but I am a fainter. I don't know if the speed of the drop has any meaning, except that if your BP drops slowly, you probably wouldn't pass out.

Song Canary, how long does it take your BP to drop?

Victoria, I'm sorry you have this additional burden to carry. What meds did the doctor give your husband? I do think Song Canary is right that vasovagal neurocardiogenic syncope is associated with a too rapid decline/associated symptoms of having the BP drop too quickly. Do you know that his BP started and ended at?

My best,

Jana

[Tuesday]

Neurocardiogenic Syncope just means that your body does not react properly to gravity. Blood vessels dilate when they should constrict, so blood doesn't get pumped back up to the brain the way it should and BP goes down instead of up. Neurocardiogenic means it is not caused by problems with your heart or blood vessels, but the wrong signals being sent to them by your nervous system.

Lots of healthy people experience vasovagal syncope under certain conditions - stress, heat, fatigue, etc. but people with NCS can experience it without any of the usual triggers.

[songcanary]

Potsgirl,

I was not given a copy of the actual TTT, just the summary, so I don't know how long it took. But I did finish the full 45 minutes and I was not symptomatic. It surprised me and I mentioned it to the tech. She said, Oh don't worry, you had changes!

[Libby]

I was diagnosed with NCS without ever having fainted outside of the TTT, too. I've been diagnosed with orthostatic hypotension as well, so I can give you my take on what's going on.

The difference between the two as far as I understand it is timing and severity of bp drop.

Without midodrine, when I stand up (especially from laying down) my bp drops immediately - I get dizzy and my vision blacks out, but I've never passed out. It's happened for so long that I've just gotten used to walking around my room blind for that time. After a minute or so, my bp stabilizes and my vision clears.

The NCS, in contrast, happens between 10-30 minutes of standing and it's a much more severe drop in bp. But a few minutes before it happens, I feel nauseous and crabby and overheated. All I want to do is sit down. So I either do sit down, or I do something (a lot of the time unconsciously) to get the blood moving out of my legs and back to my brain. Fidget, bounce in place, pace etc., preventing a faint.

I look at NCS like a reset button. If the brain's O2 supply gets diminished - like when you stand up and gravity pulls the blood downwards - it tries to to compensate automatically. Tightens leg veins, speeds up heart rate etc. For some people, that's not enough. The brain is still oxygen deprived. NCS happens when the brain reaches a point where nothing it's doing is really going to make up for the oxygen deficit and the body is ignoring/not hearing the "SIT DOWN NOW!!" cues it's sending.

The pull of gravity on the blood, which increases when you stand as opposed to sit, is the major issue here. So the brain figures that if you're not going to listen and sit down on your own it will take the control out of your hands and MAKE you sit down (er fall down). And it either dilates your blood vessels (dropping your bp), drops your heart rate or a combination of both, depriving itself of oxygen to the point where it CAN'T function and you can't choose to stay standing. You go down, eliminating the pesky gravity problem, and your brain gets all the blood it could want.

The fainting response is actually beneficial. It's what you hit on your way down that the real problem.

[Victoria]

Thanks songcanary. I'm glad your good friend does so well with the meds, hearing that encourages me. We haven't been so lucky. Both guys have had to change meds and dosages frequently to keep afloat. I keep hoping the doc will find the perfect dose of the perfect drug.

[Victoria]

Jana, I'm sorry to hear you're a fainter. Yuck and ouch. Hubby is currently taking Dexedrine and our son is taking Ritalin plus Clomipramine (for the cataplexy).

I don't remember where his BP started and ended and we don't have a copy of the medical records. Hubby's HR is really slow at around 50 BPM (he's not athletic), but his BP is normal.

Thanks so much for the kind words.

[Victoria]

Thank you, Tuesday and Libby.

Libby, that was an excellent description. Thanks!

[juliegee]

Oh Victoria, your son gets it from both sides. So does mine. My husband has very loose connective tissue, a history of faints, and was VERY fatigued throughout college. Vasovagal neurocardiogenic syncope is another name for neurally mediated hypotension/NMH. It is closely related to POTS and many of the same symptoms and meds are used for both.

How old is your son now? My son got very sick at age 12- when puberty and a huge growth spurt kicked in. The good news is that you can get him timely help knowing as much as you do.

[Libby]

I'm glad it helped! Trying to figure out what's happening, what's normal and what's not, can drive you crazy.

There's so much about dysautonomia that's easier to pick up on with hindsight. I went in for my TTT b/c I was blacking out immediately upon standing. I thought the test would be a waste of my time, honestly, because I thought all of my symptoms came and went in the first minute or two. I never had connected the nausea and irritability I had while shopping/walking; I assumed they were due to low blood sugar. I'd sit down, have a drink and a snack and feel 100% better so I brushed it off. It didn't even occur to me (until after the TTT) that maybe it was the sitting and not the snacking that was actually helping.

It might be worth it for your hubby to be on the look out for any symptom he felt during the TTT cropping up in his day to day life, even if he's already attributed it to some 'normal' cause (like low blood sugar ).

I'm so sorry both you and your husband are being hit with this stuff, especially at the same time. And your son. Poor kid, having a genetic double whammy. Has he had a TTT?

[Victoria]

Julie,

Thanks so much. I suspected it came from both lines in our son's case. Thus the many off the wall type of queries I've posted. So odd that we unwittingly pair up into a relationship with someone who has a disorder so similar to our own. Your hubby sounds very much like mine sans the connective tissue issues (that's my bag). He also had quite the difficult time throughout college, was booted halfway through, but returned and graduated.

My son is 14 and like your son, worsened just prior to puberty. He still gets bad during his growth spurts. He was erroneously diagnosed and treated for Autism from age 4 through 10 but it turns out it was the Narcolepsy/Cataplexy all along. He didn't ever have Autism, he was simply too exhausted to speak or interact with anyone. What a change in him once N & C were diagnosed and treatment began! It was truly like an awakening or rebirth talk about a miracle and enormous relief! He's just a regular chatty and social young man now with some big bumps in the road from N and Cataplexy. I'm sad about all of his lost years, but sooooo thankful. We do have a leg up with the knowledge we have now.

Blessings to you and your family.