Dysautonomia (Autonomic Dysfunction) Community
Does this sound familiar? Kind of lost!
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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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Does this sound familiar? Kind of lost!

Hi, I'm a 29 year old female experiencing a lot of crazy symptoms, new here and wanted to get some feedback.

I'll try to summarize. This has been happening on and off since 2006.

Last year, I stated to get some pretty high tachycardia, went to see a cardiologist, who waved it off as anxiety.
Most recent EKG and 48 hr. holter monitor indicate sinus rhythm 56 bpm (asleep) up to 166 bpm with ST-T wave changes. This heart racing is happening 41% of time. About the amount of time that I am out of bed.

I have had a positive ANA 1:160 speckled and homogenous pattern (anyone else on this forum have a positive ANA w/ Autonomic Dysfunction?)

My symptoms are:

Urgent bowel and unpleasant/frequent trips to the washroom (consistent)
120 -160 bpm daily Tachycardia (heart racing upon standing / mostly normal when laying down / consistent)
Head / ear pressure
tingling / numbness / flutters in extremities
fatigue
weakness
etc...

I do feel as though there are changes in my blood pressure, and have observed these changes at various emergency departments / doctor's office, but I do know that blood pressure can fluctuate. However, I have seen mine at 130/90 and 64/46! My consistent range is around 120/70 (sometimes a little bit lower).

The only other thing that they've found is that I have a liver hemangioma that appeared over the last year (3.4 cm). Maybe not related. Also, I have a high neutrophil / low lymphocyte count, but this might also not be related.

Can anyone tell me if they experience any of these symptoms, too?

I also wondered if it was at all common or possible to test positive on an ANA with  Autonomic Dysfunction?

Thanks a lot for your attention :)
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3 Comments Post a Comment
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171927_tn?1294027323
Hi Meagan,

I'm still in the waiting stages. I see a GI/Internist on Wednesday. I have not been diagnosed with anything yet. In the past, it has all been attributed to stress. I'll try and look in to the possibility of getting a blood pressure / heart monitor. That's good advice. I have not fainted yet, but it has definitely been uncomfortable.

Does your heart rate go that fast? How dangerous is this and what can I do to minimize the chances of something bad happening? Just stay in bed?

The positive ANA can apparently mean a lot of different things. Lupus being one of them.
I really do need to see a rheumatologist and hoping that I can get a referral really soon!

Thanks for the link, I'll take a look. Really appreciate your answering me.
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171927_tn?1294027323
Also wanted to ask what causes the numbness / tingling? Do you know?
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171927_tn?1294027323
HI Meagan, I wanted to update you :) I saw the internist last week. He has ordered an ENA panel, which could give me some answers re: the possibility of lupus. In the meanwhile, I had the first of a bad episode the other night, which resulted in an ambulance trip to the ER. It was a near fainting episode. The paramedics tested my sugar and it was fine, and by the time they got there, my BP was normal: 120/80. However, I did notice that my BP dropped while I was at the hospital to 105/53, so I bought a blood pressure / heart monitor. I used it for the last two days (until it broke, haha, getting it exchanged tomorrow). Anyway, I was measuring my BP and it fluctuates from 120/77 to 97/63 and the lowest reading I got (when waking up) was 84/45. It mostly stays around 105/65 (approx). Do you think this is normal? I haven't noticed a huge drop when I stand up, but there's definitely fluctuation there. Maybe the amount of fluctuation is normal? When is BP too low or dangerous? I have been  to the ER so many times since October, so if I can avoid visiting there if I don't have to, I'll be happier about things. Is there an absolute emergency danger zone when it comes to BP? I will definitely keep you posted and thanks for all of your advice so far. The health care system is so slow where I am.
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