Dysautonomia (Autonomic Dysfunction) Community
so so so very scared and sick right now...
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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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so so so very scared and sick right now...

I am a 22 year old female and 15 weeks pregnant. Since I was about 10 weeks, I would get these dizzy spells, nasuea, panicky feelings, hot and out of breath upon standing...It was mild then but over the last week its been progressively worse..my bp would spike...one time got as high as 160/110! This is upon standing...I also get tachycardic when I stand. My bp laying will be 110/65, sitting 122/75, standing usually 130/90 to 145/100. My heart rate laying will be 75-80 BPM and once i stand it will be 95-130 bpm! When I get out of the shower, my heart beats like 145 BPM. Again, once I lay down these issues are resolved 100%. Ive seen six doctors these last 2 weeks as it has gotten worse. Sunday was when i got that 169/105 reading at the grocery store and blurred vision so I headed over to the ER. Got there, did an ekg,blood work and checked for Preeclampsia and HELLP syndrome. Everything absolutely fine cause of course once I lay im fine and all tests were good. Doc told me it was anxiety and told me to follow up with my OB. Tuesday I saw my OB and again my bp was 150/105. She freaked and gave me a referral to go down stairs to the ER. Well once I got to the ER, it started dropping a little to 140/90 and again i had an ekg, blood test, etc. Laying down it dropped every half hour lower and lower to 118/65 at the lowest. Doc again sent me home with an anxiety diagnosis. I started getting more suspicious, cause I know the difference between anxiety and something being not right. I made an appointment to see my regular MD in hopes of getting some kind of treatment. Well the MD told me she doesnt see anything wrong. ugh, im so frusturated! I have gotten sicker and sicker these last two days and I cant stop crying because what I feel is very real. ive done my research and im thinking i could possibly have hyperPOTS or orthostatic hypertension..IDK, thats why Im here...docs wont help me and i feel horrible. I want to be able to do regular things again.. All opinions welcomed. Thanks..
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4703993_tn?1379771988
Ok.. you have a bit of a complicated situation since you are pregnant... but it sounds like it may be a form of dysautonamia - possibly POTS.  The only sure way to tell if it is POTS is by taking a tilt table test (usually done by an electrophysiologist or specialized cardiologist)... but you can not have a tilt table while pregnant.. it is too dangerous for the baby.  I would go see an electrophysiologist anyways or a cardiologist that knows a lot about POTS.  Get there opinion and they can work with your OBGYN to help manage there symptoms.  After you give birth and get clearance from your OBGYN I would go for a tilt table test and get to the bottom of whats going on... For now I would say to get an at home blood pressure machine so you can keep track of your pressure and heart rate..

Best of luck
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875426_tn?1325532016
It definitely sounds like you are having an orthostatic intolerance problem right now.  I imagine with the added blood flow (which you have much more of in your body while pregnant), the stress on your heart is considerably more than it was before you were pregnant.

Some advice:
Get a shower chair and if you still want to enjoy hot water and can without getting light headed sitting, then just slate extra time for your time in the bathroom and stay seated with your towel for several minutes after your shower to try to give your body time to adjust before attempting to stand.  But even better (though not necessarily always more enjoyable), take showers while sitting that are warm (or a little cool if the weather is hot) but do not use hot water.

Secondly,  ask your doctor not only if they would do orthostatic blood pressure and pulse rates on you (pick an appointment time where you are more likely to have the worst symptoms), but also if you could get your norepinephrine tested first lying down and next, after you've been standing for awhile like they do as one of the criteria for a P.O.T.S. diagnosis.  

If your lying down norepinephrine number is normal and your standing number is over 600, if they know enough about P.O.T.S., they should get a clue (along with your lying down versus standing blood pressure numbers and with pulse going up over thirty beats per minute) that unless you are having a major panic attack every time you stand up, you most likely have P.O.T.S..

Watch your diet- if you're like me, heavy meals or high sugar content (and sometimes I think it's certain other things I eat) can make symptoms worse after eating, so do small, frequent meals, watch out for sugar, and give yourself time to sit down with your feet up on a recliner while digesting if you find your heart racing after standing up from a meal.

I hope you will feel better soon and have a healthy baby!  I've read that sometimes P.O.T.S. goes into remission and I hope that happens for you!
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Avatar_f_tn
Thank you everyone. I also quit remeron and Xanax before pregnancy. Maybe that could be causing this as well? I'm on a beta blocker called labetalol after my 3 day hospital stay last week, feeling about 90% better with it :)
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875426_tn?1325532016
I do wonder if going off the medication could have triggered something for you.  I was given labetalol for awhile as a precaution prior to a surgery when my primary care doctor wasn't sure whether or not I might have a pheochromocytoma (turned out I didn't and I did go off it I think shortly after the surgery).  I'm glad it's helping you!
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Avatar_f_tn
update: I delivered a healthy baby boy but still have this stupid issue. Im gonna see the cardiologist tomorrow. Anything I should tell them? I wonder if theres something I can bring that tells them about hyperpots..
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