Heart Rate 240!!!???? My 14 Y/o Daughter!

[btmartin97]

Hello. New here. My daughter (14 y/o) has MCAD & OI at the least but it's looking more & more like POTS (actually, can someone explain the difference between POTS & OI?). After 2 yrs, we finally found an autoimmune specialist who will see her. Saw him Thursday & he ordered a whole array of tests.

Anyway, we've battled tachycardia mostly. Her blood pressure typically drops some but not hugely (until yesterday). She doesn't really have much tingling in her hands & feet. There have been some scary heart rates but yesterday was the worst:

92hr…90/62bp lying

143hr…78/57bp sitting

!!!! 240hr…54/27bp standing 2 minutes!!!!!

This scared the crap out of me! Got her stabilized enough to go to ER and she had labs drawn (slightly askew) & an MRI (normal). Has anyone ever had this happen? We're still in the hospital, hoping to catch the tachycardia on an EKG (wants to rule out an electrical conduction issue).

Obviously, I'm trying to figure out why this happened. Towards the end of last week she had a little bug (sore throat, etc) and her tachycardia (and overall feeling) has progressively worsened. She rarely ever catches viruses but when she does, they hit her hard.

I would appreciate any advice or info y'all can share. Things have been pretty manageable up to this point but now, who knows? She needs to just be a kid and I'm afraid to let her out of my sight.

Oh! Meds:

Allegra D - 1 tab BID

Florinef - 0.1 mg - 2 tabs BID

Midodrine - 5mg - 1 tab TID

Zantac - 150 mg - 2 tabs BID, I just restarted her on this the night before the 240 hr, thinking maybe it's a Mast Cell issue.

We have so many unanswered questions. What type of POTS? Did the MCAD cause her POTS? Why have her overall symptoms gradually worsened over the past 2 yrs, even with the meds? Is this episode what's referred to as a POTS "flare"? Or a MCAD flare that culminated in this event (seems to me more POTS than MCAD because no hives or anaphylaxis)? What testing should be done while we're in the hospital? Please, Please, please help! Thank you in advance. God bless you all

Hugs,

Tonya

[Noreen]

{{{Tonya}}}

I wish I could help in some way but I can only offer support and prayers.

Sending positive energy your way for strength and the proper MDs to help your daughter.

noreen

[btmartin97]

Thank you, Noreen! I appreciate your prayers very much. My continued prayer is for her healing & the docs to have discernment..and for me to keep my redheaded Irish temper in check! Lol I'm really hoping we'll get some answers with this new Autoimmune doc.

Thanks so much for your support & prayers.

[Victoria]

Hi Tonya. I'm a newbie myself, so I don't have much to offer except that my HR can get that high, and any kind of virus or other illness will exacerbate a very wild ride for me. Offering up prayers and gentle hugs.

Victoria

Edited March 15, 2011 by Rachel
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[giftcreations123]

Hi

Sorry your going through this...

You mentioned Allegra D...many of us here have problems taking that D part of the medication which has the ephedrine in it. For me, my heart rate is insane after taking that.. I take the plain Allegra.

just a thought...

Not that its cause of everything ..

hope all goes well

[sue1234]

Hope the doctors can help!! I definitely can't take any kind of decongestant, either.

As a side note, you mention any illness makes her so much worse. With the already low b/p, it wouldn't hurt for them to check her adrenals to make sure they are working adequately. I know people with low cortisol go into a "crisis" when they get sick.

[lieze]

I'm afraid this advice might not be helpful but if you look at the side effects of meds like Zantac also you will see that they do affect the heart.

With Pots I have become fearful of taking any meds at all-our systems are just ultra sensitive to everything.

[btmartin97]

Thanks so much for your replies!

She takes Allegra D for the MCAD. Prior to adding the "D", she had horrible nausea from drainage. Since she's been on it (long before any POTS symptoms), she rarely has a tummyache. So I'm reluctant to change it, but if we have to...

The Zantac was added after her heart rate was really climbing..in an effort to stabilize..but it didn't work, unfortunately.

Doc is putting her on an (heart) event monitor because she seems to have stabilzed now. Thank God!

Also, she should be starting her period any minute now..so could it be possible that the virus plus pms just caused a system overload? It's so odd..literally almost like a volcano erupting..a build up, explosion, and now she feels better. Weak, tired, but definitely better. Such a mystery.

[MomtoGiuliana]

I hope the heart monitor helps answer some questions. Younger people can sustain higher heart rates, but that is still very high.

Did she get fluids (IV) at the ER? That may have helped stabilize her.

Many of us feel our worst right before our period.

OI is an umbrella term for several disorders that are characterized by symptoms associated with positional changes -- POTS is a specific syndrome that is defined as a heartrate that increases by at least 30 bpm from sitting to standing.

Glad she is feeling better!

[btmartin97]

She did get IV fluids in the ER, so that very well could have done the trick. Interestingly, (20/20 hindsight) this morning while she was on the EKG, she said the really high heart rate wasn't going to happen. She went on to explain that prior to that episode, she felt like she was in a daze or a fog...not like her occasional cognitive "fog" but more like in a tunnel. This was while she was still horizontal, before she stood up. So there WAS a warning! That is a relief to me. My worry has been sending her to school, etc.

So OI is a blanket term, basically and POTS is more definitive. That makes sense. It almost sounds like OI is pre-diagnosis & POTS is post, or could be anyway. Anyway, the docs are saying this really looks like POTS. Ok, but what type?

Thanks for all the support & info...you guys are awesome!!

[MomtoGiuliana]

You may or may not be able to find out what kind of POTS. Also there's not agreement among specialists on definitions of different types. However, certainly there are some causes of POTS that should be investigated, such as EDS, since these causes could perhaps be addressed, and/or w/o treatment may cause other problems. Also there may be triggers for her that could be identified and eliminated that would help ease symptoms.

In my case, I do not have a diagnosis beyond POTS and my specialist has discouraged any further testing as he does not think it will further illuminate treatment approach.

[issie]

The first thing that stood out to me was the Allegra D also. It is a decongestant and can dehydrate you. Us POTS people stay dehydrated - it's like our bodies don't take the fluids into the cells properly. So this could have made things worse and over time she could have gotten more sensitive. The only allergy med I can take is Claritin - all the others are too strong. And as for the H2 blocker - the only one I can use is Tagament. So, try differnt brands. Some of these will cause the heart to race.

Just a side note. When your blood pressure drops so low - your heart speeds up to bring your blood pressure up. That is probably what was going on with the high pulse - but it wouldn't hurt to check the meds too.

Edited March 15, 2011 by Rachel
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[btmartin97]

Lord, I completely agree about checking the meds. The problem has been that we're seeing several different docs who have prescribed different meds. How I would LOVE to gather them all in the same room!! But now that she's in with an Autoimmune doc, hopefully we can get things straightened out. I'm praying.

I appreciate everyone's input. I'm taking notes & writing down questions. I just wish there was more of me to go around..

Edited March 15, 2011 by Rachel
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