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POTS - diagnostic threshold as opposed to just postural hypotension?

I have had a tachycardia for 2 or 3 years which may have been sorted out by fixing the femoral arterio-venous fistula I had  -this was basically overloading my heart with double the normal flow and pressure!! However the cardilogist had been considering POTS - Looking it up I don't think i fit the criteria - increase of 30 bpm etc on standing and after 5 and 10 mins my BP and heart rate seem to correct themselves. I just wondered however - for those people who have been considered as having or have POTS but perhaps have also been told they have 'normal' postural hypotension - is there a diagnostic cut off - and any tips for what might help my low BP without more drugs!! I have increased my salt intake a bit as I have very little normally. Thanks
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Avatar universal
I had a very helpful answer to this from the heart rhythm forum - Quite possibly the massage caused it! Might not do that again!
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Avatar universal
Not quite sure what is happening now, Went back to work - just the odd couple of hours of doing not a lot - and also had a therapeutic massage on Monday afternoon. After which, overnight my BP shot up and keeps doing so at the slightest moving around or concentration on anything and i feel pretty rough -red faced, racing heart, and purple freezing extremities. Don't know what on earth is going on -neither does my GP at moment!!  
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2113262 tn?1346101921
Wow! I have never heard of an accidental fistula, that sounds very scary, I am glad they finally addressed the issue.  

Take care of yourself!
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Avatar universal
Hi I had never come across the term 'fistula' but I the vascular surgeon did explain when they discovered it they make them deliberaltely in dialysis - and No I'm not on dialysis - my kidneys are fine. The fistula was a complete mistake by threading the catheter through my artery in the process of finding the vein! You know those cartoons where blood spurts up in the air - it was kind of like that in the process!  It can happen - but they didn't check properly afterwards to see if a fistula had been caused -hence i have had the 6 years of heart problems -and as usual, being told it's anxiety, stress, me focussing on symptoms too much..etc! The misdiagnosis is in the hands of a solicitor now (and I'm in the UK!)
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1833449 tn?1333849501
DNP47:

As I indicated in another post, I don't believe you have Postural Orthostastic Tachycardia Syndrome.  This is for two reasons: (A) Your tachycardia is no dependent on position; and (2) You have an electrolyte imbalance (potassium).  These are classical signs of an underlying endocrine problem.  I should know, as I had the same symptoms, amongst others.  Do yourself a favor and find good endocrinologist.  
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2113262 tn?1346101921
Im still pregnant, and have been off all my meds for a few weeks. I felt absolutely horrible the first few weeks and had to actually go back on my beta blocker for a while to tapper it off. I had rebound tachycardia and also my BP sky rocketed, so my cardiologist said I was having withdraws from the medication. Who knew you could withdraw off blood pressure medicines?

I think it is very good news that you are still able to exercise. If you in deed have POTS (which I have my doubts, which is a good thing:) but I am no doctor so I guess I am just hoping that you dont have POTS.

Are you on dialysis? I havent seen a fistula in the groin before?

The heart is an irritible organ, it doesnt take much to tick it off so to speak. The overload you are describing may be causing it to be erratic. Hopefully once they get your volumes under control and give your heart a rest it will work itself out. Good luck!
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Avatar universal
You have done well with dealing with your symptoms and pregnancy - Have you had the baby? or still pregnant. Hope it is going well.
Although i haven't had a tilt table test - it would have been on the EP Dr's agenda if he thought it was still an issue - I have taken my BP and HR from supine to standing and then at intervals and my BP doesn't drop enough or my HR increase enough. I have always had poor circulation and purople blotchy legs anyway!! Thing is I have been struggling with my ectopics and tachycardia for 6 years -getting worse in the last 18/12 despite Flecainide, but last Nov it was finally discovered I had a fistula between my femoral vein and artery -from a puncture in my previous op to have a PFO closed. I put the details in another post so won't repeat them all! I think that my heart was struggling so much with the overload from that, and having had the fistula repaired in Jan, my heart is trying to work out what it should do! My BP has probably dropped because it's not under such strain and my tachycardia has more or less gone. It is probably a normal HR increase to exercise now -it's just i'm not used to these new sensations!! I walk the dog for half an hour every day, swim 2 or 3 times a week and though I am still very tired and have to lie down in the afternoons sometimes, I think I may need a few more months to adjust! I'm drinking loads of water - and tea! - anyway as I have lymphodema in my hip from my op so have to massage that twice a day to stop it building up.
Oh well  -I'm going back to work next week as well so I will just have to see what happens next. Take care of yourself.
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2113262 tn?1346101921
I was diagnosed with POTS through a tilt table test. I have atypical POTS, which ***** because I have a rare type of a rare disease. However, I had to stop taking all my medications due to an unexpected pregnancy. My cardiologist has suggested the increase in salt for me also. I actually think its hard to eat as much salt as I'm supposed to.

What I have found that helps a little is I drink about 4 liters of fluid per day. I eliminated all caffeine (except for tea). I also started to eat healthier. My potassium is chronicly low, which causes PVCs/PACs and Afib/Aflutter. I have incorporated a bunch of healthy fruits and vegitables into my diet and I feel much better.

What other POTS symptoms do you have aside from the tachycardia?

The body does normally increase the BP and HR when you go into a standing position (the postural part). This is because your body needs to comensate for the gravity and get the blood pumping back to your heart. Typically the changes in your pressure and rate are temporary and do not cause issues.

With my POTS, I have tachycardia almost constantly, standing and sitting and even laying down. It will get into the 150s-160s from doing absolutely nothing.

I have found some recent studies that say that exercise and diet/increase in fluids can drastically help ones prognosis and quality of life. Make sure you get yourself a EP doc (electrophysiologist) and hopefully they are well versed in POTS, if that is in deed what you have.
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