Anyone Know The Name

[sj75]

i have a friend whos daughter has been diagnosed with ?cardiogenic syncope. When she goes to the toilet she passes out. I remember reading something about this on here a while ago and seemed to recall it having a name. Does anybody have any info on this or know the name so i can let her know??

[dakota]

The Merck Manual says:

"Vagus Nerve Stimulation: Fainting may occur if the vagus nerve, which supplies the neck, chest, and intestine, is stimulated. When stimulated, the vagus nerve slows the heart. Such stimulation also causes nausea and cool, clammy skin. This type of fainting is called vasovagal (vasomotor) syncope. The vagus nerve is stimulated by pain, fear, other distress (such as that due to the sight of blood), vomiting, a large bowel movement, and urination. Fainting during or immediately after urination is called micturition syncope. Rarely, vigorous swallowing causes fainting due to stimulation of the vagus nerve."

[flop]

Hi SJ,

neurocardiogenic syncope (NCS) is a type of fainting caused by over-stimulation of a nerve that controls the heart. Basically the vagal nerve wanders all over the body and can be stimulated in many ways. The vagal nerve when stimulated causes the heart rate to drop. Some people find that vagal stimulation causes the heart to go very very slowly (or pause briefly) and the blood pressure to drop.

Both passing water and opening your bowels can over-stimulate the vagal nerve in susceptible individuals. The first is called post-micturition syncope (more common in older men with enlarged prostates) and the second is defecation syncope (often linked with constipation problems).

I hope your friends daughter can get some good treatment to get her fainting under control.

Flop

[persephone]

I was thinking micturition syncope too. To add to Flop's comment, it's not just older men with enlarged prostates who faint when they wee. I did as well when my treatment wasn't right.

Is your friend in the south of England? If so I have come across a fabulous new cardiologist who has a specialist interest in syncope AND POTS!

PM me for details and I'll send them on to you.

FAR BETTER THAN OXFORD!

[flop]

Ooops, thanks for pointing that out Persephone - I didn't mean that only older men have micturition syncope. When I was in hospital in February after my general anaesthetic I was passing out almost every time I urinated too! (Very embarrassing as I was usually found face down on the bathroom floor with my backside on display to the nurses!).

Flop

[Tachy Phlegming]

http://archinte.highwire.org/cgi/content/a...act/146/12/2377

http://www.medlink.com/medlinkcontent.asp

[juliegee]

Just as an aside. When my son initially became sick (12 y/o), his fainting only occurred during "pooping" and after hot showers. As time passed, this became more frequent. So.....just because it only happens during defecation now, doesn't mean it might not progress. He's DXed with NMH (neurally mediated hypotension) another name for VVS.

I don't mean to be all doom & gloom- just sharing our story.

Julie

[miranda]

Mack's mom , so Is NMH genetic ?

I have NMH , and I worry my daughter might be getting it. She has passed out a few time over the years, once when I was cutting her hair ( she was kneeling on her legs)

and once when she cut her hand.

I can feel it coming on sitting or standing , hate it !

[gertie]

i have a friend whos daughter has been diagnosed with ?cardiogenic syncope. When she goes to the toilet she passes out

Does she pass out everytime or when pain is involved?

[sj75]

thanks so much guys, i will pass that info on, i dont think she is on any meds and is currently onlys under the local general hospitals care, i will suggest that she gets referred to somewhere more specialised.

Are there medications that can help with this?

[juliegee]

Mack's mom , so Is NMH genetic ?

I have NMH , and I worry my daughter might be getting it. She has passed out a few time over the years, once when I was cutting her hair ( she was kneeling on her legs)

and once when she cut her hand.

I can feel it coming on sitting or standing , hate it !

Hey Mirry-

Sorry I missed this until now. NMH may be genetic, based upon WHAT is causing it. In my family, we think we have an underlying connective tissue disease and overly active mast cells as an underlying causes. Yes, both appear to be genetic as many in my family are DXed and /or have symptoms.

How old is your daughter? This tends to rear it's ugly head when the kids hit puberty- something about the enormous growth spurt. Passing out a few times could most definitely be a symptom that should be evaluated by her ped, ideally with a tilt table test.

Some folks have this intermittently, like after being cut, or when watching a scary movie, etc. For my son it is constant. He is always exhausted and lightheaded. Meds control his symptoms, but be does not have normalcy (normal energy) between faints.

I'm sorry you're dealing with this too :-(

Julie

[juliegee]

thanks so much guys, i will pass that info on, i dont think she is on any meds and is currently onlys under the local general hospitals care, i will suggest that she gets referred to somewhere more specialised.

Are there medications that can help with this?

Yes, most docs begin with increased fluid and salt. If that's helpful, but not quite enough- they move on to florinef and thermotabs (salt tablets) to help boost blood volume. This regimen (combined with many other meds) helped my son tremendously.

I hope your friend's daughter can get help. This can be an intermittent thing or very disabling. Finding docs for kids is even harder than for us. Encourage the Mom to join our group on her daughter's behalf.

Hugs-

Julie

[sj75]

i will do , thanks. I know she drinks a lot of water but then is in a vicious circle as when she wees she passes out, apparently she was pretty much out of it for 3 hours last time and when she woke it was because all the water had reached her bladder so it was a bit of a catch 22.

[miranda]

Thanks Julie , my daughter is 12 years old and the fainting started a year ago.

I really hope she has not inherited this. What is connective tissue disease ?

Is this the flexi joints thing ?

[juliegee]

Thanks Julie , my daughter is 12 years old and the fainting started a year ago.

I really hope she has not inherited this. What is connective tissue disease ?

Is this the flexi joints thing ?

Yeah, except if your joints aren't hypermobile, it doesn't totally rule out connective tissue disease. My son is actually the exact opposite- he is VERY tight and has restricted movement. Goggle connective tissue disease to see other symptoms related to it.

Hugs-

Julie

[juliegee]

i will do , thanks. I know she drinks a lot of water but then is in a vicious circle as when she wees she passes out, apparently she was pretty much out of it for 3 hours last time and when she woke it was because all the water had reached her bladder so it was a bit of a catch 22.

I don't understand HOW that is a Catch 22. I think I'm missing something . If this is NMH, increasing fluids is very important. Oh, I think I get what you are saying (duh! ) she passes out when she urinates? Geez, that's still not a reason not to maintain hydration as ultimately increasing blood volume via increased fluid is what will help her. Salt and florinef, help hold that in so that it con be converted to blood and not just peed out. I wonder of her doctors have tried that yet?

Being unconscious for THAT lenghth of time is very alarming. I hope she was evaluated by a physician during or shortly afterwards. This doesn't sound like typical NMH. Usually, after my son lies down (or faints), he regains consciousness. Sometimes, I have to lift or prop his legs up to get more blood to his head quickly.

I'll keep this little girl in my prayers. Out of curiosity, how old is she? This kind of stuff usually comes up at puberty.

Hugs-

Julie

[kayjay]

Has she been checked for Pheochomacytoma? I was misdiagnosed with this kind of tumor. When they are near or on your bladder many people pass out when urinating.

[persephone]

IT sounds much more like a reflex anoxic seizure to me, which is more common in children and can have hallmark features of vasovagal episodes but involves a child feeling sleepy or groogy for SEVERAL HOURS afterwards... the best people on this are STARS at www.stars.org.uk

Get your friend to look them up and read the definitions and stories, see if they sound similar to her daughter.

[miranda]

thanks Julie , my daughter and I both have flexi joints , I mentioned this to the neurologist and she didnt understand any connection to NMH ?

[juliegee]

thanks Julie , my daughter and I both have flexi joints , I mentioned this to the neurologist and she didnt understand any connection to NMH ?

Frustrating! I would advise going to Google Scholar and printing out a few articles that link autonomic dysfunction (NMH) to Ehlers Danlos Syndrome (flexi joints.) Take them to your next appointment. A geneticist is the one, who would make the EDS diagnosis. If this is behind your symptoms, it's a good idea to know as there can (rarely) be serious vascular consequences.

Best of Luck-

Julie

[miranda]

thanks , I will do this and I do not have long to wait cos my appointment is the 17th this month.

[hensor]

Hi, if you are having trouble persuading people of the link between flexibility and PoTS/OH etc then take a look at the info in the publications section of www.hypermobility.org/shop There is an article called 'Autonomic Intelligence' available for download which talks about why the two are linked. Also lots of very useful information on EDS/HMS. It's from a UK charity (HMSA) which I have found absolutely brilliant.

[juliegee]

Hi, if you are having trouble persuading people of the link between flexibility and PoTS/OH etc then take a look at the info in the publications section of www.hypermobility.org/shop There is an article called 'Autonomic Intelligence' available for download which talks about why the two are linked. Also lots of very useful information on EDS/HMS. It's from a UK charity (HMSA) which I have found absolutely brilliant.

That's extremely helpful for so many here. THANK YOU!!!