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A Request For Information... Please


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hello to all,

is there any logic to POTS... my POTS seems to morph overnight... a cascade of varied and

contradicting symptoms... one moment i am whining about tachycardia and the next i am carrying

on about bradycardia...

a new, worrisome and exhausting issue...

does anyone suffer from supine bradycardia/ hypotension?

my HR now plummets (40's) when i attempt to lie down... i feel clammy, weak and lightheaded

when this occurs. the act of lying down triggers the bradycardia... HR gradually falls after just a

few minutes...

i am craving a good night's sleep... a night of restorative sleep... note:i do not take any medications

that would cause bradycardia.

am headed to cleveland in july, appointment with dr.fouad... will discuss the supine bradycardia/hypotension

but in the interim... your thoughts...

cleveland is a costly endeavor, for us, on so many levels ... but i feel that there

are no alternatives... we are hopeful and cautiously optimistic...

--how to 'maximize' my 'cleveland experience'?

--what can i expect?

--feedback re: dr. fouad?

as always, thank you for any advice or insights.

with healthful wishes to all,

cordelia

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I can't give you a whole lot of advice about your supine bradycardia but I have seen Dr. Fouad. She is very knowledgeable and should be a great help to you. She does a lot of diagnostic testing and research but I do not know how she is on follow up. Cleveland Clinic has a hotel just across the street from it that is pretty reasonable. The concierge at the clinic can also be helpful; call them and find out if they can coordinate your stay so that any tests Dr. Fouad runs can be scheduled during the visit. You want to try to avoid a wait between your initial appointment and any tests. Also they can find out how long until the results are available so you can decide if you need to wait in Cleveland for the results.

I experienced bradycardia years ago where it would go down to around 42. The doctors weren't concerned but they did not try to explain what was going on either. It is good you are going to Dr. Fouad to get an expert's opinion.

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Cordelia,

I do have supine bradycardia/hypotension--without meds. It was first noted on my 24 hour holter monitor. However, I don't feel symptomatic or worse when it happens. My supine BP is usually 90's/50's and my HR is 45-55 bpm. My docs don't want me on a BB at night because of it. Try tilting the head of your bed or propping yourself up on a pillow-chair or pillows and see if it helps.

You NEED your sleep!

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I also have bradycardia, but I have it whether I'm standing or sitting. I have a history of dilated cardiomyopathy which was diagnosed 3 years ago, and due to the bradycardia, had a pacemaker put in. I was diagnosed with severe orthostatic hypotension about 2 years ago. Do you have a cardiologist? You may want to go and have some cardiac tests done. Good luck to you!

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No it seems to be a pretty confusing and constantly changing situation for many of us unfortunately.

How's this for a weird one:

When i go on holidays my symptoms nearly entirely disappear. My blood pressure remains high when I stand by my symptoms are prettymuch gone. However, on returning home I always experience a sudden relapse of severe symptoms that slowly improve to my usual 20% symptoms... weird as... And ive looked into and though about all sort of theories.

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I sometimes get bradycardia laying down. I an on beta blockers and sometimes they get my hr low...so standing it is normal but then lying down it plummets to like 50...sometimes lower. I never know how to balance it out...I have to take beta blockers for my tachycardia but then sometimes laying down my hr gets too low.

Just my experience...good luck.

Erika

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good day,

am very grateful for your comments and input. thank you all...

will report back re: cleveland and dr. fouad.

with my best,

cordelia

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