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JuneFlower

Tilt Test-Useful??

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Well seeing a specialist-the tilt table test was a bust. Daughter in so much pain that her pressure actually went up a bit but was never as low as her normal. Usually when she stands-her pressure goes to the basement. Dr offered to rpt in 2 days. Is it worth it??

June

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June:

What did her heart rate do during the TTT? (My daughter's blood pressure is never affected by her standing up - but her heart rate soars).

Pam

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Was it a full 45 minute test or a 10 minute test? Both of mine were full 45 minute tests and we learned quite a bit about what my body does. On my 2nd test I had a sudden severe dip in bp at 35 minutes. We never would have caught that on one of the shorter tests.

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They had to stop about 8-10 min in due to difficulty breathing and chest pain. I wasn't looking at her pulse. Was worried about the b/p being so high for her. And the fact that the test was not reflecting her normal values. The dr said we could repeat it in 2 days. But I just don't know now. There are do many things attached to her. It's a scary room. She gets anxious and I'm afraid the same thing will happen again. The dr didn't seem interested in her history or normal BP. Will meet with her tmw officially.

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Now that she knows what to expect maybe she won't be so anxious the next time--hopefully.

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JuneFlower,

I don't know if this will help your daughter if she does have another ttt, but, I went in with the mindset that I hoped the test made me sick....that it showed them all the crazy things my body does and that it would give them the information that they needed to start a decent treatment plan. I knew I was going to feel miserable and decided ahead of time I was going to tough it out for my greater good. It is an unpleasant feeling and I know she's an adolescent so choosing that frame of mind may not be as easy for her but it might be an approach she can focus on. I went in with a raging migraine and had to be put in a wheelchair while we were checking in because I almost collapsed. The test made me feel terrible. But, I came out with answers and that made it worth it. And this helped me focus for my second test too.

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I agree with Katybug, Ive done the same thing. And my last TTT was after months of medication and therapy to just be able to sit upright for a couple hours, albeit symptomatic, but halfway conscious, so the results of that test still confirmed POTS, but it also showed the stuff I deal with everyday (out of control HR, BP having a mind of its own, physical issues, pain, etc). I'm sorry she's having a hard time with this, but sometimes you gotta do it to get answers you need and deserve.

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Yeah I kinda want to redo it but I don't know if the appt is available now. Plus I might have to changes flight. But this is our only chance to do this. I've read conflicting reports on how important the tilt test is. Her cardiologist disagrees with it. He says it does not add any info. But I don't know how educated he is. Ya know? He admits to being out of his element. Thanks everyone.

June

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I think it would be good to redo the test, because Potsies can be so different on different days, hopefully if this is her second time she will be less anxious about it. I know sometimes you can get more anxious the first time you have a test because you have no idea what to expect. It must be really hard for her going through all the testing etc at such a young age. I really hope that everything goes well and you can find great help for her.

Best Wishes,

Lyla

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Lyla-thank you. It is hard for her. She is scared to begin with and the room looked like it was out of young Frankenstein. Can't blame her being upset but the pain was what threw off the test.

June

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Ok so saw both drs today. They are so awesome . Feel so much better . Did not repeat tilt as her pressure was high in office today so maybe that's just a new change.

Got treatment stuff to give to local drs. Just praying someone at home will order what they want.

June

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Hi June,

My son originally had low bp when it all started and now he has high bp. Things change up and symptoms cycle around, My daughter has always had low bp.

Glad you had a good visit and hopefully are able to find help at home.

Christy

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Christy- yeah not sure if it was rebound from stopping the beta blocker or if vets blocker is now not needed.

Drs were a bit worried about her high pressure and wanted her to be checked if it happens again. Ugh. Always something.

June

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Ok so have the total diagnosis and recommendations for my daughter from the dysautonomia clinic. I am so happy. They mentioned she probably has a Mitochondrial Disorder. They recommended 4 supplements. Is anyone familiar with this cause of POTS?

They also changed stuff and made other good recommendations. Finally someone is suggesting Florinef. I hope it helps. Very scared local doctors will not follow through on these suggestions. Anyone have any tips about that?

June

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I emailed many doctors (hematologists) with the specifics of my son's issues and diagnosis when I needed someone local to help treat him for his MCAS. I found emailing the doctors directly was best rather than talk to the nurse and have her relay the info and probably get it wrong. One doctor emailed me back saying she would ask her colleagues and help find me the right fit. She did find us a good doctor willing to treat my son based on the recommendations of an out of state doctor more versed in MCAS. It saved a lot of time rather than making an appointment and going through doctor after after doctor.

I first googled the type of doctor I was looking for in my city, and it came up with a long list of hematologists(one hospital in particular that contained their email addresses). Hope this info helps.

Christy

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Therre is only one specialist in ny area in POTS and he won't see my daughter. I will sit down with the pediatrician and the neurologist and cardiologist to get someone to order stuff. Some of it is specialized, so certain drs may feel uncomfortable. This whole thing is a real nightmare. I am so stressed.

June

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Glad you got answers June, I hope you'll find the right doctors to work with so that you're daughter will get her life back.

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yes Christy, thank you. I just need a neurologist, a cardiologist and a regular dr for her. Sigh. I left msg with the neurologist but I am going to sit down with the pediatrician for advice and help. I don't know if anyone will order the DHE.

June

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My son went through a weekend of DHE through an IV a couple of years ago. He felt a little better with it, although it may have been the IV Saline that perked him up. Since it might have helped, his neurologist then prescribed DHE shots that were daily. After two weeks we decided it wasn't helping him. My son's local neurologist was the one who prescribed it for him thinking he was having silent migraines. It is apparently old school migraine treatment.

What are they prescribing it to your daughter for? Hopefully it is helpful.

Christy

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