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type of dysautonomia?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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type of dysautonomia?

I have been having different kinds of troubles for months with severe fatigue (I can't seem to do anything for more than 2 or 3 hours without laying down to take a nap), shortness of breath, muscle/joint pain, numbness and tingling in my legs and neck and shoulder pain.  It's really taking a toll on me.  I have had every blood test known to man...it all turns out fine.  My Rheumatologist at the Cleveland Clinic said I have Fibromyalgia and wants me to visit a cardiologist to rule out POTS.  I have been reading some about it.  When my orthostatic pressures were done it turned out like this:
Supine:  bp 110/70 hr 58
Sitting:   bp 106/68 hr 59
Standing:  bp 90/70 hr 71
Once, when I was a young girl I stood up and began walking and totally fainted.  No memory of falling at all.  To this day, I am very careful when I stand.  When I stand if I notice that "blacking out" feeling, I stand still and wait for it to pass.  With POTS wouldn't my heart rate skyrocket upon standing?  Would my bp drop significantly lower?  Are there other kinds of dysautonomias that resemble my results?  Heart ultrasound was good and so was EKG.  Hoping someone can help...I'm stumped and sick of being sick.
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875426_tn?1325532016
You are having what is called orthostatic hypotension.  Do you drink plenty of fluids each day?  This is one of the first things the doctor would want to know if they encountered numbers such as yours.  They also might push IV fluids on you.  

I have a relative who typically did not have a big rise in pulse at home, but started having major problems and low blood pressure readings.  A tilt table test actually did have a heart rate rise equal to a diagnosis of P.O.T.S., which the nurse checked with someone and said she had.  But she was also diagnosed with N.C.S. (neurocardiogenic syncope), which is a different form of dysautonomia, though she says she was conscious the whole time.  Her blood pressure dropped dangerously low during the tilt table test and everything went black.  

She is now taking two types of medication to try to get some help with symptoms.  She also had a diagnosis of fibromyalgia a long time prior to getting holter monitor testing and tilt table testing.

I have P.O.T.S. and my blood pressure can actually spike with standing and my pulse can rise dramatically, even when not on the tilt table test.

So, the cardiologist who is an electrophysiologist can check for more than P.O.T.S., they can also check for N.C.S. with a tilt table test.  They may want to order a holter monitor test, where the EKG readings would run for much longer than the short EKG they do in the office to get a better idea of what your heart is doing.  The numbers you gave have two of them that would be slightly slow compared to the normal resting heart rate of 60 to 100.  They could find out if your heart rate is going even lower than that at times with the holter monitor.
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Avatar_m_tn
Thank you so much for your reply!  I did do a 24 hour holter monitor last week but haven't heart and results.  I am scheduled for a tilt table test on the 11th.  I don't believe the cardiologist I am seeing is an electrophysiologist...will that make a difference?  I did report once to the PA at my cardiologist ofc that my pulse will sometimes go down to 50.  She just said, "Well, that means you are really healthy!"  I don't feel healthy...
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875426_tn?1325532016
The PA spoke out of turn.  If you were an athletic sort of person, say a jogger, a rate of 50 could mean you had a healthy heart, but that's not you.  

If they know how to conduct a tilt table test that cardiologist should be well versed in electrophysiology, so it should be okay... except I have some concern that the cardiologist you mention has a PA that would make that comment she did.  You might see if the cardiologist agrees with the PA and if they do, if it were me, I'd be looking for another cardiologist.

You might also want to make sure there will be at least two people in the room for your test.  We were quite upset when my sibling only had one nurse in there and the blood pressure was allowed to go dangerously low- think the nurse was busy charting at the time.   When mine was done, there were two nurses plus I think the doctor was there- at least he was when I woke up from my faint.

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Avatar_m_tn
Your heart-rates don't indicate POTS, however you should still be tested for it. It's great that you're following up with doctors for this, as we can't diagnose conditions over the internet. LivingInHope is correct that you're likely experiencing Orthostatic Hypotension, as can be seen by the blood pressures you posted. Drink plenty of fluids. I recommend drinks like Gatorade with electrolytes in them. You may also want to increase you salt intake. Check with your doctor before increasing your salt intake to make sure he/she is okay with it. You may need medication to control this.

Best of luck!
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Avatar_m_tn
Thank you.  I had my tilt table test done today.  Wasn't what I expected.  They laid me back for about 45 min or so, gave me an IV (just for fluids), propped me up to standing for 20 minutes and it was over.  I didn't faint.  My bp stayed pretty consistent...laying down it was about 98/62 and standing 103/70 but my pulse went from the low sixties to about 92.  (Just from what I could see on the monitor).  Doc came in and said all looked well.  During the test I had nausea and dizziness but that was all.  The nurse said they almost never do that test.  There were two people in the room.  Is that the way it should be done?  I thought I would be tilted a little bit more...lol!  It seemed kind of silly.  But they said if I had a problem, I would have fainted.
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Avatar_m_tn
Yes, that's how the TTT goes, at least mine. I was lying down for about 30-45 minutes, then they tilted me up not quite 90 degrees, but almost. Actually, not everyone with POTS faints. I was diagnosed by my doctor with POTS on the spot during the TTT and I never fainted. Just was dizzy like you were. My heart-rate was around 70-80 bpm laying down and was 130-150 bpm tilted up. I fluctuated between the ranges given. They only kept me tilted up 5 minutes or so and Dx'd it right then and there and immediately added Midodrine to my meds.
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Avatar_m_tn
If you're really symptomatic still, you can wear compression garments above the knees (like biker pants) and that may help lower the amount of fluctuations between your HR laying, sitting, to standing.
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Avatar_m_tn
Thank you!  I don't think I met the criteria for POTS because my heart rate did go up 30 points but not in the first 10 minutes.
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Avatar_m_tn
Got it. Makes sense now. That first 10 minutes makes the difference as to whether someone gets Dx'd with POTS or not. Anyway, I wish you the best of luck with everything.
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875426_tn?1325532016
There were two parts to my test- the second part, they gave me nitroglycerine and tilted me again, which induced the faint.  I was diagnosed with P.O.T.S., but not N.C.S..  I think it's right to have at least two people in the room- I'm glad they had two, even though it looks like it wouldn't have been an issue for you like it was my relative.

It looks like you weren't having your orthostatic hypotension during the test... but if you are still having that happen, I hope they keep looking for the underlying cause so you can treat it, even if it's something as simple as increasing fluid intake.  And as to your heart rates, did you get the results back on your holter monitor?
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