julieph85

For everyone that has had success with prednisone, I don't understand why none of the doctors try methotrexate. It is a very powerful immuno suppressant and if prednisone works, in theory, it should work as well. You could take it forever with a lot less side effects then prednisone.

I started getting PAC's a few months before my pots started, and then they increased dramatically after the pots. The weird thing about mine is that they come on in spurts. I will have a ton every day for a few months and then for no reason at all they will stop completely for a few months. I believe they occur with pots or IST because of the adrenaline. The cells become super sensitive to the adrenaline and fire inapropriately.

yes, my urine is also around 3100 ml's for 24 hours, pee everything right out, and it is chrystal clear so I doubt i'm getting any benefit from drinking it..

Has anyone on here actually tried it? I know we talk about it a lot. I've contacted his office and requested they send me the info. to apply. I believe I match all his criteria. I'm going to give it a go because if anyone has POTS due to deconditioning it is probably me- mine started at the end of 14 weeks of strict bedrest during my pregnancy. I also can't tolerate beta blockers which I have read is common in POTS caused by deconditioning- because of the reduced stroke volume. So, we'll see. I will let everyone know how it goes!

It sounds like your BP is dropping so your chest is constricting to push blood up to your head. Do you also feel dizzy when it happens? Next time it is happening try taking your BP if you can, although it might read okay if you are having an adrenaline response to increase your bp.... just a thought!

That's wonderful Katie! Let us know how it goes...

Thanks Rissy, I'll do that!

Lol Jangle! They took 12 huge vials from me, I swear they drained me dry!

I'm worried the midodrine is going to make the IST worse. Did he say anything about that?

That's awesome! I'm so glad you are able to get the tests done, it is well worth it. I'm worried though, did you get the approval in writing? I got my EOB from my insurance last week from my trip to mayo- they charged my insurance $8,500.00 and I got less tests then you. I would make sure it is in writing if you haven't already. What did you think of goodman? I love him!

Oh gotcha. All the different pots docs seem to be pretty rigid on their theories, which I can understand

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.

That's great! He did a very similar work up for me a month ago. Good luck issie, did he say why he doesn't support the ang 2 thing?

Hi chaos, I've had both. Results were the same.

Thanks Naomi I will

Hi Katie, I've had it done twice by different docs. The test makes me feel horrible but they say my results are normal

Everytime I raise my voice at my toddlers- like call their name or raise my voice to tell them no, I feel like I'm gonna pass out for a few seconds. Does this happen to anyone else and why?

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.

Increase in BP on standing and/or increased norepinephrine when standing, not a dumb question

Mine was normal and showed no different results then the echo. I had it done to check for clots which was negative

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?

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.pdf Here is some info on IST in general: http://en.m.wikipedia.org/wiki/Inappropriate_sinus_tachycardia The reason I think I may have IST and not pots are: Normal QSART Normal vasalva test Normal deep breathing test Barely abnormal tilt No evidence of hypovolemia or pooling Normal 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.

I have had a CT angiogram done of it, which I believe is even more detailed than the MRI.

Yes that's what I was thinking too guys. Issie I agree with you. Ive had bad generalized anxiety disorder since I was 16 and the only thing that helped me was Wellbutrin which is a SNRI. It is supposed to make anxiety worse but helped me tremendously. In fact, all the ssri's did nothing. Everything in balance!

Sorry you are worried Emma, that wasn't my intention. I just like to keep an open mind about my pots.