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So I saw the cardiologist yesterday. He said the stabby pains I was having in my chest were not my heart. They did an ECG and it was fine. Still dont know why my chest is so uncomfortable though...Mostly sore, like a bruise that gets worse if I walk around, bend over or put pressure on it.

My cardio still thinks all my problems go back to the neurocariogenic syncope. I told him I dont usually pass out anymore, I just get all the other symptoms until something too much happens and then I can pass out. I thought the NCS was the actual passing out..but??

Anyway, he thinks that when I start getting orthostatic my breathing gets weird and then I somehow manage to hyperventilate...so he mentioned hyperventilation syndrome.

I am not sure how you hyperventilate w/o knowing it, but?? I know I breath really fast and shallow normally and when I start to feel bad I breath either faster or slower/deeper. I mentioned that sometimes I dont think I am breathing...like it has gone to shallow or something and that he thinks then when I 'remind myself to breath' I am actually taking in extra breaths...thus crashing my co2 levels. He had me purposefully hyperventilate for a minute in the office and I felt pretty icky..room got dark, got that vibraty feeling all over and my face tingled. Not big time tingles, but more vibraty tingles.

He did not think he needed to run any tests. And wanted to start me on a beta blocker. I asked him about doing a tilt table test and he thought that it was not needed...He stressed how I would hate it...my heart would stop...I would pass out.... (like I have not fainted before?? all alone??? Heck, in a hospital...no biggie.) In the end we scheduled a tilt table test and a heart echo (just to cross all our T's and dot our I's, he said) for April 6th.

I am not crazy about forcing myself to passout on a tilt table but I still think it might provide usefull info now or later, and if it doesn't then it doesn't.

I felt kind of silly to press for the tilt table, but if nothing else it will 'confirm for me' my diagnosis.

BTW he said that I don't have pots from my description...He said that I have had what I have all my life and that POTS is something you only get as an adult.

But I guess the tilt table will tell.....

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You don't necessarily pass out on the TTT. Everyone is different.

I also disagree that POTS is something only adults get. I do believe it can be trickier to diagnosis in children and teens because their heart rates are often high anyway but clearly there are many of us on this board who've had symptoms most if not all our lives.

I'm glad you were able to push for what you needed though and hope you get to feeling better soon!

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I have the same type of stabby pains, as well as pain where it feels like I have a broken rib (and I have difficulty breathing because my chest hurts so much when it expands). I've never had any type of chest pain that was heart related though, just POTS related I guess. So, you're not alone.

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Hi, I'm glad you pushed for the TTT. Then your doc can see exactly what's going on...I did not pass out on any of my TTT. My heart rate shot up and my bp went very low, but I never passed out. What did your doc mean your heart would stop???? I don't understand that one.

Jacquie

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honestly? scare tactics...I dont think he really thought doing a tilt table test would be useful...He kept describing how I would pass out and how people would rather have open heart surgery than go thru a tilt table test...

Like I have never fainted before??? I know exactly what to expect...

i dunno

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Yeah, I'd rather faint in a hospital...that's the best place for it to happen!

Jacquie

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Having a TTT doesn't necessarily mean your heart would stop--in rare cases, though, it can, which is why they do the test in the hospital.

Also, be sure to get a copy of the TTT report for yourself. It's important to keep your medical records, and if you ever need to be seen by a new doctor, the TTT is considered one of the better ways to diagnose autonomic problems. Granted, your doctor may have done the 'poor man's tilt' in the office, by having you lie down, then stand up for various periods of time, but if you go to another doctor/new doctor, the TTT is likely to be taken more seriously.

Lastly, your doctor is quite incorrect about POTS only developing in adults. I've had it my entire life, and as far as I know, I didn't pop out full grown. :( although, there is some debate if I'm full grown yet :) (uh, yeah, I'm 4 foot 11 inches... any growing I do now tends to be sideways, not longways gosh darn it!).

Nina

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MM is totally right about getting a copy for yourself. the first TTT i did was positive for NCS. years later when i was feeling bad again (POTS start up) the doctor didn't seem to have the record and i had to have another one done. for me, TTT are pretty yucky, i usually end up puking and passing out and feeling pretty cruddy for the rest of the day. and then did push pretty hard for me to get moving afterward, they had more pts to test. so it wasn't exactly pleasant.......

but at the second TTT, one of the nurses jammed her shoe into my shin (!) and told me "don't pass out" "keep your eyes open and don't pass out" her shoe in my shin HURT! and i was too out of it to tell her to STOP or get her name. and my husband wasn't allowed to go in with me that time. i suggest you have someone else there with you when they do the test and advocate/bodyguard for you. while i'm sure my second reading was probably a fluke of ppl not knowing how to do a TTT properly....just protect yourself so the reading you get is a good one. the second one i had was "inconclusive" (wonder why HA HA) but Dr. Grubb said it was POTS.

i think of the TTT as the Iron Maiden Torture Test. But i have to admit, without that first one, i'd never have gotten better or know about the wonderful world of dysautonomia. :(

and i agree, the doc that said you can only get it in childhood is WRONG---you can be born with it, have it w/ severe trauma, have it with a baby or have it after a bout with a virus. good luck! and let us know how it goes!

love and light,

lulu :)

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I did pass out after 20 mins on the tilt table test, and although it is scary, you must focus on the information your cardiologist can get from the test and that if your going to pass out..the best place is the hospital. Easier said than done, i do suppose! :( It is also good to hear that your pains are not heart related, although I'm sure you would like to know where they are coming from I'm sure. I get this sharp pains in my side and I actually can't breathe for the few seconds that it happens, but then it goes away?!? Pots im sure, seens to be the reason for all my crazy symptoms.

Hope you get rid of that terrible pain soon dear!

Nicole

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Thanks guys...I was satarting to doubt myself. He said this would be a 'big I told you so', in that it would not give him any new info...but you know in all the years I have been sick and in and out of hospitals...From the age of 6 years old....They have only done two orthostatic bp's on me. (when I was little this stuff was not taken seriously at all)....They did one when I was 11 and then my main doc did one on me a month ago ...My cardio has NEVER DONE ONE. He did an EKG and than talked to me...

I was thinking I would do ithe tilt test alone...and somehow get from the hospital to a cab to a hotel...but I am so unstable after a bad faint that I think I may need someone. My cardio says that people tend to faint less after the test...but I dont beleive it...at least not for me...Once I go down that road, I go for a while...

Problem is ithe hospital that does the test is two hours away from my house. I may ask my dad to come up...If my husband comes then there will be a 5 year old in toe...and that will definately be too much for me, i think.

Yea, I fully expect to be puking my brains out...

He seemed taken back that I was not worried about it after all his talking...but honestly...A faint in a hospital is like so much better than a faint, alone on a bathroom floor. So...

p.s. that ache in my chest is now a dull ache and only really bothers me when I lay down or compress my chest for whatever reason. It is just to the left of center on my chest.... THere is a definate sore spot. If I push it, which I rarely do, it hurts like heck for a while afterwards. I personally think it is a cartilage issue?? but i dunno... I would like an answer though. If I lay down and then get into any number of position it pinches...

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When I went for my test, I was told I was required to bring someone to drive me home. Nina

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you should definitely have someone with you after the test. it wracked havoc on my body for several days the first time i had one....the second time i was already in such bad shape that it was a bit less noticeable B)

hope all goes well & you get some answers....good job sticking with what you felt was best with the doc.

:D melissa

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I Passed out cold 7 min into the test..... felt like crap for days afterward.

The stabbing pains in my chest were explained to me. I get 2 types. One type kinda starts in the center of my chest, my throat gets tight, I get real aware of my breathing, sometimes it radiates up my neck and down my arm. It was caught on an echo, myright ventricle is sort of caving in on itself to pull the blood through my body with a drop in bp.

The second it like jabs in my ribs, it coinsides (sp) (cant spell ya'll know that) with a drop in my o2 saturation , most likely pulmonary.

they both are horrible!

Hope it goes well for you

Janine

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I am glad you are getting a TTT done but INTEPRETATION is everything. You need not faint to get results. My HR raised 55 bpm as soon as I was tilted up..in under a minute. I felt ill, hot, sweaty, panicky, short of breath..all sorts of things DURING the test....then when they raised me down my HR dropped but to normal level.

The dimwit, there for my then cardio said "the test was INCONCLUSIVE and I may just have to make lifestyle 'adjustments'. HELLO!!! I had been disabled 8 years already, I wanted to say. So I was driven home despondent and feeling SO DEPRESSED.

ONLY to later be told in my appt with the cardio I had seen in OFFICE (who had warned me he might not be there for the tilt as my 'insurance' made me go to hospital he only went to once in a blue moon) that the Tilt did INDEED CONFIRM my endocrinologists and my suspicions. So between 2 docs in the same group "read different results".

You need a doc savvy in autonomic problems and orthostatic intolerance to interpret. BUT if you feel ill during the test, that right there is your answer especially if you have HR and BP variances. I never did faint but did everything but throw up!! My vision even went black.

So the test is non invasive and if done properly..the room should be dimly lit and quiet. The idiot cardio that sat in on mine chatted softly non stop to the techs!! He was such a horses rear end...but I am glad the "real doc" knew what was going on.

Yes, yes! Get a copy of your test....

Best of luck to you ...and if you have fainted...this test will be nothing. Fainting isn't for sissies and your docs attitude is really annoying. B)

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oh yea, I have been faining since like age 3.

Getting a good reading will be a challange. Do you think Dr. Grubb or anyone like him would read test results for me?? I have no idea how insurance would work with that though.

Fainting I think is the worst thing imaginable. I hate it and have spend the last 30 years tweeking ways to avoid it...so being unable to do my tricks scares me a little but man fainting in a hosital is WAY less scary than fainting on a downtown street, or a bus, or a bank or in my bathroom all alone or etc. etc. etc. Or fainting just cause I pushed up on an arm to roll over on a BAD day....

His attitude is very annoying to me and he is not up to date on the research, he said that himself...

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