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friend just diagnosed-did well on TTT.


OCsunshine
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One of my friends has a younger brother that just recently started having problems. He has been passing out in school- very suddenly blacking out. He has been to many doctors and they found out it's not a heart problem like they had suspected, but his treatment now is- taking salt tablets, increased salt diet, and a beta blocker, and they are working successfully... he hasn't blacked out since he went on the salt and BB. The funny thing is- when they put him on the Tilt Table (before the meds), his reaction was okay. He didnt black out or anything.

I am just confused, because I thought salt and BB's (like I am on) are used to treat OI. But does he have OI if he was okay on the Tilt Table? I don't get it...

I wish I had more information on his diagnosis (he is in 11th grade, by the way, he was healthy and an active cross country runner, but now he's not well at all). I am trying to give his sister (my friend) support and info on OI, but then... I don't know if it really is a type of OI because of the TTT?

Am I making any sense?? Any thoughts would be greatly appreciated ... thanks. :P

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It might be that they didn't do the TTT correctly. I had 2 done. The first one lasted 20 minutes and I did really well. The second one lasted for 45 minutes and I failed badly. I have no idea about the length of your friend's TTT, but with me, it certainly made a big difference in the results.

You don't have to faint on the TTT to be diagnosed.

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So you don't have to actually faint for a Dx? Well I guess that makes sense... they have you hooked up to monitors, right, and they watch your b/p and your heart rate?

It's been over 10 years since I had mine done, I just know that I was upright for about 30 seconds before I completely blacked out.

Maybe they only kept him up there for 20 minutes or so and that 'seemed' like a long time. His sister didn't really know. I need to find out more details.

It just seems weird to me that he's on salt and a beta blocker, but when I asked what his diagnosis was, they didn't really say he had one.

I just feel bad for the boy and want to help them out... I don't know what else to advise them, you know...?

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It could be they did the ttt wrong or it could be that even though he didn't pass out he may have experienced other symptoms.

It does sound a bit odd from what you say but I think you are right.....you would have to know more about his symptoms and his test results before being able to help much.

It could be they saw signs of POTS on his test (which would explain why he didn't pass out). Some people have primarily Tachycardia and then suddenly their bp will bottom out causing them to pass out.

I definately would encourage your friend to get a straight answer from the Dr about the reason behind their course of treatment for this boy. They need to know why the Dr prescribed these particular orders and what the Dr is trying to attain by them.

If the salt and increased fluids is working for this boy though then that's good and I would just advise them to keep track of his bp.

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I did fine on my TTT. I was talking and felt alittle out of breath at the end but nothing major happened. I held on a conversation like I was normal. I don't know my exact results but they said my hr and bp were all over the place. I think mine was 30 min. I'm not sure exactly.

I also didn't have an i.v. incase I passed out or something which I thought was weird. Well I never passed out so maybe that's why.

So basically I think if his hr went up 30+ than it's POTS? Don't quote me.

I wish him luck in finding answers.

dayna

Edited by DSM3KIDZ
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TTT is just the best test we have right now--it is not foolproof. As we know symptoms can vary from day to day, for one thing. Also, a TTT is looking for a variety of bp and hr CHANGES from lying down to standing--it is not just to determine whether you pass out or not when you stand. (Also, many people with OI DO NOT pass out. In my case, I was diagnosed with POTS b/c my hr increased by more than 30 bpm from sitting to standing--I have never passed out--at least not since my early 20s.)

B/c the TTT can be inconclusive, people can be diagnosed with OI based on symptoms alone. It sounds like that might be the case for your friend's brother. But it is surely frustrating that his doctor has not named his diagnosis.

If he is on the eastern shore, pm me--I will give you the info for my autonomic dysfunction specialist in Salisbury who is excellent. He has many adolescent patients.

Katherine

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Hi, on my first TTT my heartrate went to 179bpm and my bp shot down very low, I can't remember exactly what it went to. This was all in the 3rd minute I was tilted upright. On the other TTT I had I did fairly okay, but then again I was still on the Toprol. I have only fainted once and it didn't last very long. I get alot of the near syncope episodes, but just never faint, thank goodness.

About the BB and salt. I have been on Toprol for months and my Neuro tried to salt load me with salt tablets (to go along with taking the BB). It didn't do anything for me, but if it had helped I would have def. stayed with it. It's better than taking prescriptions. SO, I say if it works stick to it. I hope your friend's brother finds the answers he's looking for.

Jacquie

Edited by Jacquie802
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There are false positives and false negatives with TTTs--I've had negatives because tests weren't carried out properly. Some places offer sprays and injections or ivs, some add nothing.

Really the TTT just simulates standing up- and if this guy doesn't faint every time he stands, then chances are he won't faint in every tilt test he ever has either.

It's true that you don't need to faint to have OI.

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Guest Belinda

I was told just because you don't pass out doesn't necessarily mean you passed the tilt. I did not pass out but have severe orthostatic dysfunction. Ask your friend for a copy of the measurments they did withh the tilt that in it's self shows quite a bit. The bp and the heart rate deal.

Like I said I didn't pass out but immediatley when going from flat to upright tilt my hearate in less than a minuite jumped from 85-130. And I showed major orthostatic symptoms. I thought and even asked the tech. guy I guess that it meant I didn't have POTS but he said doesn't matter if you pass out or not..it is mostly in the numbers!

So look at it that way. I was also on beta-blopckers which made some of my symptoms actually worse..low bp.

Try and get the results usually they are summarized.

Belinda

P.s. Good Luck to your friend!

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