Why does my Blood pressure hike with doctor.... adrenaline problem?

[Nin]

My blood pressure when I test at home is on the low side and then with doctors it's higher. They're not seeing the true me. I don't know if it's a adrenaline problem with me but my HR goes through the roof and blood pressure goes from 105/58 at home to 130/78 with doc. Doc said about putting me on ivabradine but I'm worried it's going to drop my blood pressure. 

I had a tilt table test today and my heart went sky high and had 3 siezures through the test which was like 40 mins standing. My heart again at home don't usually go this high, so I don't know why my body reacted like this as before I went in I wasn't really that nervous. I hadn't had my daily fix of coffee (which seems to help) less water and walked to appointment which done me in beforehand. Do don't know if this triggered something inside. I have siezures at home but when I do too much on my feet, I had a siezure really quick with the ttt...so wondering if its a adrenaline thing like a fight or flight reaction my body felt having this test??

 

[KaciCrochets]

I don't have answers, but the same thing happens to me. My bp at home is around 125/78 but at the clinic it's 155/98. The nurses always seem concerned but the doctor never mentions it. I specifically emailed my clinic about it and the nurse forwarded the message off to my doctor but I haven't heard anything since. I"m definitely adrenaline sensitive but I don't know if that's causing the spikes or what. Seizures are outside the realm of my experience but I would hope you would be referred to a good neurologist after what happened during your TTT.

[Sushi]

19 hours ago, Nin said:

My blood pressure when I test at home is on the low side and then with doctors it's higher.

It is called “white coat syndrome!” Most doctors take it into account but if yours doesn’t, take your home BP machine with you to appointments and ask your doctor to scroll through the memory. My BP is always higher at a doctor’s office than at home too.

Having seizures during your tilt table test must’ve been really distressing! But again, even though you didn’t feel nervous, some part of your brain knew that you were being observed and tested, plus being dehydrated. All that is enough to make you more symptomatic. Plus during the tilt table test you have to stand without moving at all so you would never replicate standing for 40 minutes without moving in your normal environment. My tilt table test results were exceptionally screwy during the “long stand” part of the test.

[Nin]

8 hours ago, KaciCrochets said:

Seizures are outside the realm of my experience but I would hope you would be referred to a good neurologist after what happened during your TTT.

I've seen a neurologist before the ttt and she knew then I was having siezures and not once said it could be pots related. I think siezures are more of a uncommon symptom of pots and most neurologist and cardiologist are not aware of this. 

[Nin]

8 hours ago, KaciCrochets said:

I don't have answers, but the same thing happens to me. My bp at home is around 125/78 but at the clinic it's 155/98. The nurses always seem concerned but the doctor never mentions it. I specifically emailed my clinic about it and the nurse forwarded the message off to my doctor but I haven't heard anything since. I"m definitely adrenaline sensitive but I don't know if that's causing the spikes or what. Seizures are outside the realm of my experience but I would hope you would be referred to a good neurologist after what happened during your TTT.

 

3 hours ago, Sushi said:

It is called “white coat syndrome!” Most doctors take it into account but if yours doesn’t, take your home BP machine with you to appointments and ask your doctor to scroll through the memory. My BP is always higher at a doctor’s office than at home too.

Having seizures during your tilt table test must’ve been really distressing! But again, even though you didn’t feel nervous, some part of your brain knew that you were being observed and tested, plus being dehydrated. All that is enough to make you more symptomatic. Plus during the tilt table test you have to stand without moving at all so you would never replicate standing for 40 minutes without moving in your normal environment. My tilt table test results were exceptionally screwy during the “long stand” part of the test.

Yes it must be white coat syndrome! I'm taking my own readings for 3 mornings to email over so he can see, as the medication ivabradine might not be suitable.

It was distressing as it happened 3 times and I thought please just put me back down now. Yes true I suppose being dehydrated made me worse as by that time on a normal day I would have had 2 coffee's and 2 pints of water by then. I really hope ivabradine works and I can start walking again.

[Pistol]

1 hour ago, Nin said:

I've seen a neurologist before the ttt and she knew then I was having siezures and not once said it could be pots related. I think siezures are more of a uncommon symptom of pots and most neurologist and cardiologist are not aware of this. 

@Nin - I too have seizures from HPOTS, this was even caught on long-term EEG at an epilepsy monitoring unit by a neurologist. HR and BP go up ( due to sympathetic overcompensation causing sudden and severe vasodilation ) and in about 2-3 seconds I have what looks like a grand mal seizure. this is due to complete loss of circulation to the brain. I used to get them really often but since proper treatment, especially frequent scheduled Saline infusions, I barely get them any longer. Some docs call them convulsive syncope, others call it anoxic seizures or autonomic reflex seizures. For a while I took seizure meds, before they diagnosed them as autonomic seizures, but - of course - they did nothing. And yes - the vast majority of physicians do not know about them. Even after diagnosis by the most renowned dysautonomia specialist in the US docs look at me as if I am a space monkey - they have never heard of such a thing. And when they witness them they just shake their heads in utter disbelief. --- I am sorry you also are experiencing them but I found great relief once I met others that have them. It made me feel less of a freak!!!! I hope your doctors will educate themselves and find the right treatment for you 😉

[Nin]

1 hour ago, Pistol said:

@Nin - I too have seizures from HPOTS, this was even caught on long-term EEG at an epilepsy monitoring unit by a neurologist. HR and BP go up ( due to sympathetic overcompensation causing sudden and severe vasodilation ) and in about 2-3 seconds I have what looks like a grand mal seizure. this is due to complete loss of circulation to the brain. I used to get them really often but since proper treatment, especially frequent scheduled Saline infusions, I barely get them any longer. Some docs call them convulsive syncope, others call it anoxic seizures or autonomic reflex seizures. For a while I took seizure meds, before they diagnosed them as autonomic seizures, but - of course - they did nothing. And yes - the vast majority of physicians do not know about them. Even after diagnosis by the most renowned dysautonomia specialist in the US docs look at me as if I am a space monkey - they have never heard of such a thing. And when they witness them they just shake their heads in utter disbelief. --- I am sorry you also are experiencing them but I found great relief once I met others that have them. It made me feel less of a freak!!!! I hope your doctors will educate themselves and find the right treatment for you 😉

See this is the worrying thing like you said even renowned specialist don't understand this and then I'm worried I won't get the right treatment to sort this. I can't see how ivabradine alone will work...but I might be wrong.

[Pistol]

@Nin - to clarify my message: my autonomic specialist understands these seizures and sees them at times in his autonomic clinic. But even after HE diagnosed me with HPOTS as the reason for these seizures - other physicians such as cardiologists or ER doctors have never heard of them. If you find a knowledgeable specialist ( I am not sure what country you reside in but there are a few good ones internationally ) he/she would be familiar with these and should be able to have treatment suggestions. Having said that - treatment for HPOTS is usually hit-and-miss, more of a " try and rule out " concept that can take a long time. As to the Ivabradine - try it and see. I had to kiss a lot of frogs before we found the right meds. 

[Nin]

12 hours ago, Pistol said:

@Nin - to clarify my message: my autonomic specialist understands these seizures and sees them at times in his autonomic clinic. But even after HE diagnosed me with HPOTS as the reason for these seizures - other physicians such as cardiologists or ER doctors have never heard of them. If you find a knowledgeable specialist ( I am not sure what country you reside in but there are a few good ones internationally ) he/she would be familiar with these and should be able to have treatment suggestions. Having said that - treatment for HPOTS is usually hit-and-miss, more of a " try and rule out " concept that can take a long time. As to the Ivabradine - try it and see. I had to kiss a lot of frogs before we found the right meds. 

Ah right yes cardiologist etc are usually the ones who don't know a lot. I seen a specialist in pots and he didn't explain anything to me or give any advice. Everything I have learnt has been off here.