julieph85 Posted February 15, 2012 Report Share Posted February 15, 2012 I was initially thought to have IST instead of POTS. Then another doctor said it was pots. Now I'm sort of leaning back towards IST. I found an interesting article about a possible cause of IST as autoimmune. Maybe this is somehow related to pots since the two conditions are so close they are barely indistinguishable. http://mitacs-arrhythmias.idlab.dal.ca/pub_pdf/inappropriate_2006.pdfHere is some info on IST in general:http://en.m.wikipedia.org/wiki/Inappropriate_sinus_tachycardiaThe reason I think I may have IST and not pots are:Normal QSARTNormal vasalva testNormal deep breathing testBarely abnormal tiltNo evidence of hypovolemia or poolingNormal standing norepinephrine levels however I present as hyperandrenergic because my only symptoms are a hyper response to normal release of adrenaline (this is theorized as a mechanism in IST)Also, I cannot tolerate beta blockers. There is a large group of IST patients that have the same reaction. Quote Link to comment Share on other sites More sharing options...
goodnuff77 Posted February 15, 2012 Report Share Posted February 15, 2012 In the early day's of my illness this was my 1st dianosis. Then they tried an ablation and evrything went bad for me after that. Now it's being said the worsening of my symptoms could be connected with the ablation. So becareful if Dr's suggest the ablation for the IST. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 15, 2012 Author Report Share Posted February 15, 2012 Hi thanks for your response! I agree, I wouldn't try the ablation since I'm not sure of its pots or IST. I'm sorry you had a bad outcome from the ablation. I have heard of that in others as well. Do you also present as hyperandrenergic only? Quote Link to comment Share on other sites More sharing options...
goodnuff77 Posted February 15, 2012 Report Share Posted February 15, 2012 May be a dumb question but what do you mean hyperandrenergic only? Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 15, 2012 Author Report Share Posted February 15, 2012 Increase in BP on standing and/or increased norepinephrine when standing, not a dumb question Quote Link to comment Share on other sites More sharing options...
goodnuff77 Posted February 15, 2012 Report Share Posted February 15, 2012 I have hypotension so when standing my bp raises slightly then starts to drop as heartrate climbs. Sorry just started getting into a little research. I'm frustrated with the lack of help from meds and treatments. But I'm having problems with all the medical terms. Quote Link to comment Share on other sites More sharing options...
issie Posted February 15, 2012 Report Share Posted February 15, 2012 I have hypotension so when standing my bp raises slightly then starts to drop as heartrate climbs. Sorry just started getting into a little research. I'm frustrated with the lack of help from meds and treatments. But I'm having problems with all the medical terms.We've all been in a learning curve. Keep reading - one day you'll understand what is being said. Make yourself read it even if it sounds like greek and look up words you don't know the meaning of - like on wiki. That's what we've all had to do. Your not hyperPOTS - with your blood pressures dropping with standing. More likely OI orthostatic intolerant. Unless it raises really high. The heart rate always rises to bring up the blood pressure when it drops - that is normal. Even for us with high bp's we have the drops in our bp's. So, we also have the rise in pulse rates - but, it is from higher levels of bp and those drops may only drop us into a normal range - but, the results are the same. Keep reading.Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 15, 2012 Report Share Posted February 15, 2012 Hmm, interesting. Out of curiosity, how abnormal was the tilt and why do you think the other Dr. thought POTS? Quote Link to comment Share on other sites More sharing options...
issie Posted February 15, 2012 Report Share Posted February 15, 2012 Interesting articles Julie. Have you posed this question to your doctors? Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 15, 2012 Author Report Share Posted February 15, 2012 Dr goodman was pots all the way, but all the doctors here say not pots or it is IST. I see dr abdallah in VA on Friday so we'll see what he thinks. Naomi- on tilt my Bp goes up slightly and my HR goes up, but only initially. After about 10 seconds it drops back into the 90's and my Bp returns to normal. For the rest of the tilt I feel fine unless I try to talk- then it triggers the same hyper response. Also my resting pulse is high. Prior to illness my pulse was in the 60's. Now it almost never gets below 80's, even laying down. That is more typical of IST. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 15, 2012 Report Share Posted February 15, 2012 I don't know if POTS requires a sustained elevated heartrate with standing or if an initial jump counts too. I can understand why you're questioing this. Have heard good things about Dr. Abdallah on here. Let us know what he thinks. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 15, 2012 Author Report Share Posted February 15, 2012 Thanks Naomi I will Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 15, 2012 Report Share Posted February 15, 2012 As far as the normal results on your autonomic reflex screening tests, I remember the cardio at Cleveland Clinic saying that more than 50% of people with POTS have those normal results. Just means that autnomic neuropathy isn't the cause of your POTS symptoms, according to her.Have you had a cardio TTT or just the neuro 10 minute one? Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 15, 2012 Author Report Share Posted February 15, 2012 Hi chaos, I've had both. Results were the same. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 15, 2012 Report Share Posted February 15, 2012 Chaos - is the 10 minute neuro type no good? This is the only kind I've had. What's the difference between this and the one you're talking about and is there value in getting a longer one? I think I've read it should be at least 20 minutes, but my guy doesn't do this for whatever reason. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 15, 2012 Report Share Posted February 15, 2012 I think Blair Grubb was publishing a doco soon talking about the same antibodies found in IST being present in some Hyper patients. Im actually identical to you in that I have normal NE levels, but increased BP and HR on standing plus increased MSNA (nerve firing rate). So I guess I am also hyperadrenergic but I have a cormorbid autoimmune disease that funnily enough is in total remission while my pots is making life hard! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 15, 2012 Report Share Posted February 15, 2012 I know personally that my POTS has to be autoimmune for a variety fo reasons, the strongest being that i get flares of one or the other, never both. Quote Link to comment Share on other sites More sharing options...
issie Posted February 15, 2012 Report Share Posted February 15, 2012 I know personally that my POTS has to be autoimmune for a variety fo reasons, the strongest being that i get flares of one or the other, never both.I think allot of us have autoimmune issues compounding the problems. I have vitiligo and alopecia and low IGG levels - but, I don't think that's the whole picture. I can say for certain the trial of steroids isn't something I'm planning on doing again any time soon. The benefit didn't last long enough and in some ways made things worse. (Hard to explain.) I think we have to go deeper and figure out the root cause. All these things are the results of something deeper. Probably, the best we can do is discover the best band-aid - because, I'm not sure we're going to ever totally figure out the cause. It's too complex, with too many affected systems and components. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 16, 2012 Report Share Posted February 16, 2012 Chaos - is the 10 minute neuro type no good? This is the only kind I've had. What's the difference between this and the one you're talking about and is there value in getting a longer one? I think I've read it should be at least 20 minutes, but my guy doesn't do this for whatever reason.I think they just show different things. Not that the neuro one isn't "good". The neuro at Mayo I see explained it that he doesn't care about finding syncope etc. He's looking more for a pattern with the BP/HR that indicates a neuropathic pattern vs a hyper pattern etc. The cardios do longer ones (up to 45 minutes was what mine did both locally and at cleveland clinic). They're looking more for sycope etc. On my first TTT, while I met POTS criteria I also had the NMH show up but not until 37 minutes into the test.(Lasted so long because I was cheating and flexing muscles, wiggling toes etc to counteract how bad I was feeling.LOL) Also on the ones I did at CC, they found the POTS criteria but then also there is a condition called "delayed accentuated tachycardia" where you may or may not show POTS criteria in the first 10 minutes but may have the tachy show up after that time limit. That's why I was asking Julieph85 if she'd had the cardiac version. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 16, 2012 Author Report Share Posted February 16, 2012 Rama, I totally agree. And as you know, my pots presents pretty much identical to yours and we have very similar rheumatic diseases. Im really thinking there is something to the beta receptor antibodies. Also, since I've had pots my RA has been the best it's been ever. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 16, 2012 Report Share Posted February 16, 2012 Thanks for the explanation Chaos. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 16, 2012 Report Share Posted February 16, 2012 Naomi- was going to send a PM but can't find you on the members list. Where am I missing you? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 16, 2012 Report Share Posted February 16, 2012 I don't know - I know I'm a member.... I'll PM you and then you can respond. Quote Link to comment Share on other sites More sharing options...
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