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Neurocardiogenic Syncope


Jacquie802
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So, today I went to see the neurologist and I had to get a copy of my records to give my new cardiologist. (Well, the cardio isn't new but he is the old one I used to go to and I am going back to him, since I am not a big fan of the cardio I have now or his assistants... :blink: ) Anyhow the neuro thinks my ear probs are def making things worse so I go Monday to get the rest of my ear tests done. The one ear test I got done shows that I have balance disturbance (fell 3 times during the tests). So, as I am reading what the neuro has in his notes it says he suspects I have neurocardiogenic syncope. I'm confused becuase during the last TTT I had I didn't pass out but I also didnt stop taking my Toprol. Hmm I am just soo very confused! Advice is welcome!!!!!! Thanks guys!

*Also my neuro suggested support hose??? I declined. Does anyone here use them and do they really help? Not to offend anyone but I think I'd feel silly wearing them, I have heard of the elderly using them but not younger ppl.

Jacquie

Edited by Jacquie802
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Yes, support hose really help. Also, you don't need to pass out in order to get an NCS dx. If you have questions about why your doctor thinks you have it, you should ask him/her directly. Nina

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I am young too and i dont wear them for that reason. (well not that reason alone)

Of course if i thought it would make a huge difference i would wear them. We could always wear long pants to hide them? Its just so hot in sydney in summer that i think id faint from heat. Gah you cant win can yu heh.

Are they expensive?

Jacquie maybe we should try them just to see if it helps, every little thing counts doesnt it. Does it help if you just wear them at night?

Sorry im not too crash hot on understanding the medical NCS stuff so i cant be any help to you there.

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i second nina's comment re: the NCS diagnosis. i've "found" some things in my records after the fact as well over the years..

re: the support hose, ithere have been a number of former discussions so you may want to do a search but here's my two cents. i apologize if some of it comes across as harsh.

first, they really can help. they don't help everyone but compared to meds are pretty darn non-invasive, can be removed right away, etc. etc. like evie proposed, every little bit helps.

second, they are usually covered by insurance under DME (durable medical equipment) if prescribed by a physician and gotten through a preferred provider. the number covered by an insurer yearly is generally a bit skimpy but some are generally covered at the normal % (i.e. you may have to pay ten or twenty percent copay, etc....generally then 20-30 dollars a pair as the good ones that insurance will cover are approx. $90-130 retail). they're cheaper online but no insurance coverage so actually more out-of-pocket. and they are NOT all created equal (which doesn't mean more expensive is always better, just that they aren't all the same)

last but not least, i have a really hard time understanding not trying something that might help solely b/c of concerns about looks or stereotypes of only old people wearing them, etc. etc. i definitely "get" the concern and have had many a concern about what others think, etc. but i guess i've had to get over it b/c trying to live as much of a normal life as possible is more important to me. i'm only 26 and have had the hose since i was 22. without them i probably wouldn't have made it across the stage at my college graduation. amongst other things. there are many types that honestly don't look any different than regular hose. they come in all colors and with or without toes. i realize that a lot of us young 'uns don't wear "normal" hose regularly either but i can guarantee that i haven't lost any friends, dates, social life due to my hose. i have lost a lot of all of the above and more b/c of not being able to function. i have decided to wear pants or skirts rather than shorts at times to not showcase my hose and i have gotten questions, mostly when i wear the toeless kind with sandels (which then make them more obvious but make my toes happier :) ) but honestly no one cares. i was a bit self-conscious at first but honestly that's the least of my problems now. the hose still help me some but unfortunately i can't wear them as much as i'd like b/c of issues with skin rashes, temperature control, and difficulty putting them on when my pins&needles in my hands is really bad. but with using a wheelchair now for almost everything out of my apartment, as much time as i spend not functioning at all, and the fact that i have had spine surgery & countless hospital stays related to black-outs, not trying/using something that might help and is incredibly unlikely to hurt (i.e. like meds, etc) isn't a consideration. i'm probably just sounding old here & i realize that i've been dealing with this mess of stuff for longer than some (though not as long as many others), and yes, OF COURSE i wish that i didn't have any need for DME supplies at all, but when i weigh the options....i'd wear a full body cast or even cut my arms off if it meant i could have a more normal life.

okay, off my soapbox.

:blink: melissa

p.s. evie, wearing them at night generally isn't recommended. either alone or in combination. docs have told me i don't have to worry if i fall asleep with them on but usually they're contrindicated for nighttime. i do find that i have better sensation in my toes (i.e. i can feel them) when i wear my TEDS stockings from post-surgery hospital visits at night though. these have MUCH less compression. they don't do anything for my body overall, just make my toes happier.

and yes, heat can definitely be a barrier in wearing the hose...i wear them though still if i'm going to be inside in air mostly which is usually as i really can't tolerate the heat much period. and if you're headed to boston though you'll be spending a lot of time in the cold anyway!

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Hi Melissa, I understand where you are coming from, but I don't even have the money or any health insurance to pay for them either :) . I am always hot, even in the winter I barely ever wear a coat, so I don't think they would do me much good anyhow. I told my neuro that I'd drink lots of water like I am now and he agreed with that. If I thought they'd help me I would give them a shot, but considering the price of them I prob won't anyhow. Also, you did not come across as harsh, I like hearing everyone's opinions!!! B)

Jacquie

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Support hose have helped me some, I just wear really fun knee high sock over them, I make the best of it, plus if you where pants no one will ever notice. I would talk to your doctor about the rest and see what we things. I wish you the best of luck!

Amy

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