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desperately seeking an answer!!!
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desperately seeking an answer!!!

Where do I even begin!!  I am a 23 y.o female, 4'11 105 pounds and do not smoke or drink.  For the past few years I have been a mystery to all of the doctors I have seen. It all started with dizziness, mostly when standing.  I have had a few syncopal episodes but far more presyncopal episodes (daily)  My resting heartrate is usually between 110-120, and goes up considerably with anytype of movement.  I become short of breath, and have severe palpitations. I get an overwhelming feeling of my "heartbeat" very often, and have a "vibration" over my right carotid artery that becomes more intense when my symptoms become worse. I consider it a bruit, my old cardiologist did an ultrasound and said that it was just thicker than usual.  I often have a deep discomfort in my chest, almost like a heavviness. the only structural problem with my heart that has been diagnosed is mitral valve prolapse, which should not be the cause of all of my problems.  I had an implantable loop recorder placed a little over a year ago and all its shown is severe sinus tach. I was once a competitive cheerleader, but now  I can no longer exercise(its been about 2 years)  I am easily fatigued, which makes my job as a nurse very difficult.  My hands and feet are often ice cold and achy, although my capillary refill is pretty normal.  Exercise stress test with pulse up to 205 before they stopped me and also showed shortened PR intervals, which is also seen on EKG.  I have had every test in the book done, the last being an EP study, which failed to induce any abnormal rhythms, needless to say that was very upsetting to me. Ive tried betexalol, and flourinef, both of which only made me feel worse.  The doctor put me on midodrine 5mg TID after the EP study and i have not had any improvements. He has basically diagnosed me with inappropriate sinus tachycardia, or POTS (they seem to be pretty interchangeable) although I feel like it may be something more than that due to the fact that NOTHING has worked to correct my symptoms.  I feel like I may have left out some valueable information, so If you need to know anything else to help put this puzzle together please let me know. I am desperately seeking answers and any response will be greatly appreciated!!
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Avatar_f_tn
I left out that I do believe I have orthostatic hypotension, my blood pressre sitting was 120/80 pulse 110, when I stood BP 80/60 and pulse 140
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968809_tn?1288660510
What about the tilt table test? Isn't that supposed to be used to eveluate othostatic hypotension?
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969031_tn?1247609194
Hi miss nursesassy. I am 19 yr old and i have the exact same symptoms as you do. I read your post and i was like omg this is me, I could see myself writing the same post. My doctor has given me treatment with atenenol and drinking lotsss of water, but still i feel fatigued all day and heartrate is still up. Let me know what works for you.

-Soni
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690060_tn?1247845341
Hi. Did you start off with a virus cold? I've had a similar story: fit, then a virus cold (which had a particular affinity for the ears). Then vascular problems, SOB, tiredness, probable myocarditis, postural tachycardia, etc. A beta blocker did nothing for me, either.

I'm practically cured now, after lots of efforet (including exercise, and also taking Mg) but the orthostatic hypotension remains, along with elevated DBP. I find a very strong connection with a persistent virus, likely just a plain adenovirus that got into various systems.

You find similar stories from Karinosa and mickey1313, e.g.
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690060_tn?1247845341
and btw, do you have a Fx of autoimmunity?

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Avatar_f_tn
i don't ever remember not getting dizzy/lightheaded, therefore I don't believe it started with a virus or anything.  I have also had a few episodes of kidney stones, currently having multiple stones in both kidneys and they found some cyst on my ovaries sooo i'm wondering if any of this can be tied in in any way?? this is sooo frustrating!
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Avatar_m_tn
Regarding virus prior to dysautonomia symptoms:  My daughter (15) has had severe symptoms (dizziness, feeling faint, tachycardia when standing) for about a month.  I have been desperately searching for help for her.

A couple days ago, I remembered the cold at the end of Sept.  She has ALWAYS had sinusitus after colds, but not this time (apparently?).  I asked the Dr. to consider a course of antibiotics (Septra).  It's only been a couple of days, but she is up and around again.  My fingers are crossed.

Subtle signs of chronic infection have been missed by the docs:  low lymphocytes, low-grade fever (only very occasionally), wearing more sweatshirts, blankets (she usually feels HOT in all weather).  Her normal body temp. generally runs LOW (97ish), (but docs do not acknowledge this), so 100.3 is pretty high for her.

For her whole life, sinusitis has knocked her flat.  She has allergy history, and typically misses 25 days of school per year.  I am now thinking the connection is that the dysautonomia makes typical infections far more symptomatic.

Other symptoms:  Small Fiber Neuropathy (hands and feet numb/painful).
Heat intolerance.  Postural Tachycardia --  BUT, not always hypotension.  Often, blood pressure stays the same or goes up.  Florinef gave her hypertension after 3 days, so d.c.'d.  Now, she is supposed to try Toprol, XL beta blocker.

We are also continuing blood tests, etc.. to rule out many other conditions, including Adrenal dysfunction, food allergies.
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