blobbydodger Posted March 11, 2014 Report Share Posted March 11, 2014 I am due a tilt table test next month for Pots but I have just found out my blood pressure goes very high too when standing so I'm curious now as to whether it can still be pots. Any advice appreciated. Quote Link to comment Share on other sites More sharing options...
blobbydodger Posted March 11, 2014 Author Report Share Posted March 11, 2014 Just took my blood pressure and it was 111/61 with a heart rate of 62 lying down and standing it was 146/91 with a heart rate if 107 Quote Link to comment Share on other sites More sharing options...
IceLizard Posted March 11, 2014 Report Share Posted March 11, 2014 Yes, it is a variant of POTS. It is called orthostatic hypertension and I have this sometimes as well. I have found a good article on it: http://www.medscape.com/viewarticle/543590_2Best wishes! Quote Link to comment Share on other sites More sharing options...
blobbydodger Posted March 11, 2014 Author Report Share Posted March 11, 2014 Thank you so much I will have a look at the article now:) Quote Link to comment Share on other sites More sharing options...
kayjay Posted March 11, 2014 Report Share Posted March 11, 2014 Yes. My adrenals dump "fight or flight" hormones to counteract the fall in blood pressure. We are a bit less common but the adrenalin will give you high Bp readings. I have hyper pots.The good news for you is that a beta blocker may be very helpful. Quote Link to comment Share on other sites More sharing options...
kayjay Posted March 11, 2014 Report Share Posted March 11, 2014 My diagnoses include hyperadenergic Pots and Orthostatic intolerance. from Mayo clinic. My blood pressure is normal while seated but raises as a compensatory response. Hope that is helpful. Has a pheochromacytoma been ruled out? Quote Link to comment Share on other sites More sharing options...
blobbydodger Posted March 11, 2014 Author Report Share Posted March 11, 2014 Hi kJay thankyou i haven't actually seen my POTS specialist yet i am waiting to visit a POTS clinic here in the UK, but i haven't got an appointment until April at which time i have been told i will be having the ttt and an Echo amongst other things. Parden my ignorance but what is a pheochromacytoma? Quote Link to comment Share on other sites More sharing options...
kayjay Posted March 11, 2014 Report Share Posted March 11, 2014 It's an adrenal gland tumor that causes many of the same symptoms as hyper pots. It's pretty rare but fixable. I've not heard of anyone being tested for hyper pots during a tilt table test. Its done separately. Most pots patients do not have hyper pots. Quote Link to comment Share on other sites More sharing options...
kayjay Posted March 11, 2014 Report Share Posted March 11, 2014 My blood pressure numbers almost aways go up when I stand. Quote Link to comment Share on other sites More sharing options...
blobbydodger Posted March 11, 2014 Author Report Share Posted March 11, 2014 Thankyou for the additional information I also have an appointment with a Neuro in two weeks about having daily headaches and weird sensations which have been happening for months, i wonder if i should mention pheochromacytoma to him......do you think a neuro would know about one? Quote Link to comment Share on other sites More sharing options...
kayjay Posted March 11, 2014 Report Share Posted March 11, 2014 Hyper pots is pretty uncommon but pheos are rare. I just mentioned it because any hyper pots person with episodic high blood press that I know of had adrenal tumors ruled out. I think headaches are common for pots but I had pretty horrible headaches. Quote Link to comment Share on other sites More sharing options...
krystal Posted March 11, 2014 Report Share Posted March 11, 2014 I was tested for hyperpots during my tilt test, and was told it was common practice. They drew blood to check for my catecholamines first while laying down and then after the table was tilted. Two birds, one stone.Cheers,K Quote Link to comment Share on other sites More sharing options...
krystal Posted March 11, 2014 Report Share Posted March 11, 2014 an endocrinologist will check you for a pheo Quote Link to comment Share on other sites More sharing options...
blobbydodger Posted March 11, 2014 Author Report Share Posted March 11, 2014 Thankyou Krystal. I hate feeling like this, i am new to this site and admit i know very little about POTS in general but i do know is i have felt awful for years if not decades. I also know the only time i felt good was when i broke a bone and was given tramadol which is an SNRI as well as a pain killer....most of my symptoms just went away. I read somewhere that bupropion is also an SRNI and given to some POTSIES so i wonder if it may help?. I have tried an SSRI called Lustral (citrilopram) from my GP and it didn't help me at all like the Tramadol. Quote Link to comment Share on other sites More sharing options...
kayjay Posted March 11, 2014 Report Share Posted March 11, 2014 Anyone would have a high stress response during a tilt table I would think. I had mine at mayo. Where were you tested Krystal? Quote Link to comment Share on other sites More sharing options...
krystal Posted March 11, 2014 Report Share Posted March 11, 2014 @ blobbydodger - your welcome, I don't know much about this either, so I don't know about tramadol or lustral@ kJay, I tested negative for hyperpots. My norepi levels were normal but low, so I was told that I didn't meet the hyperpots criteria. My blood press doesn't increase when I stand, only my heart rate does Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 12, 2014 Report Share Posted March 12, 2014 My Pots doc said interestingly that SNRI s can be helpful with Pots symptoms and that SSRI's can actually make pots symptoms worse. I didn't do well on either of them. Quote Link to comment Share on other sites More sharing options...
Becia Posted March 12, 2014 Report Share Posted March 12, 2014 my bp started out on the low side when I was diagnosed, and now is nothing but high high high! I'm due for another TTT next week for Cleveland Clinic, and am required to stop my meds two days prior to the test, so i'm very curious if it will go back down low. I've been doing orthostatics the past few weeks, and I've had many error out moments when I'm trying to do the standing one. Quote Link to comment Share on other sites More sharing options...
lfreem02 Posted March 12, 2014 Report Share Posted March 12, 2014 My doctors knew that I had some form of Dysautonomia, but didn't understand why compression stockings, Midodrine, and Fludrocortisone made my symptoms a lot worse. I finally went to an ANS specialist out of state, and he said that my blood pressure increases, not decreases, and that I needed to lower it. So, I have been taking a beta blocker, SSRI, and Klonopin, which has helped. I still deal with symptoms daily, but it is better. The tilt table test indicated that my vagus nerve was being triggered, but the stress test is what showed that my blood pressure goes up to 200/100 without medication. Many doctors are familiar with orthostatic hypotension, but not hypertension. Quote Link to comment Share on other sites More sharing options...
krystal Posted March 12, 2014 Report Share Posted March 12, 2014 @lfreem02: my doctor wants me to take klonapin, how does it help you? I read a lot of bad stuff about it and I'm scared to try it :/ Quote Link to comment Share on other sites More sharing options...
lfreem02 Posted March 13, 2014 Report Share Posted March 13, 2014 krystal: I am taking a low dose at night before I go to bed. My doctor wanted me to start taking it to calm my nervous system and brain, and to help me sleep better. I went off of it for about a week, and started having a scary episode that had finally stopped. I was having an issue with feeling like my brain was shutting off, and I may lose consciousness. An EEG showed that I have some abnormal activity on the left side of my brain, but not bad enough to be a seizure. Once I went back on the medication, the episodes stopped again. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 12, 2015 Report Share Posted May 12, 2015 Hyperadrenergic responses can happen in all forms of pots sometimes as a compensatory response sometimes as the actual problem Quote Link to comment Share on other sites More sharing options...
angelloz Posted May 12, 2015 Report Share Posted May 12, 2015 Ramakentesh, I have a question about the compensatory response that you mentioned. I understand when I have OI ...I get warm, a bit nauseous, darkening vision, etc...have to lie down fluids etc... however, my most horrible spells begin with weakness, like I am trying to walk through water and a feeling like my body is shutting down. I sort of collapse. When checked at the hospital blood pressure can be quite high. One time during a spell I urinated out tons of water. Can the compensatory response come on very quickly?? It has only happened a few times but very unnerving. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 12, 2015 Report Share Posted May 12, 2015 I was diagnosed as adrenergic POTS. I can't remember what my resting b/p was before the TTT, but my usual would have been around 115/72. During my TTT, my b/p went up to 170/110. That's how I got the label. Quote Link to comment Share on other sites More sharing options...
Goschi Posted May 12, 2015 Report Share Posted May 12, 2015 Same here - my normal BP is 120/80. Being upright for to long, it can reach 165/115. Originally, docs were quite puzzled, but now they interprete it as a kind of "hyperadrenergic state" which I get into, as my body tries (but fails) to compensate for the blood circulation irregularities. Sounds very logical Quote Link to comment Share on other sites More sharing options...
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