I have Orthostatic diastolic Hypertension in which my BP goes up sky high at least twice a day but no doctor is treating me for this. This problem got picked up during a medical study and i was told to just tell my doctor about it (the ones who were doing the study, couldnt be bothered doing a letter to my doctor :( ) but my doctor wouldnt believe me when i told him about it and just how high my BP during the day when standing may go.
I've also since the medical study in which picked it up (24 hour holter monitor).. taken my own BP using a home monitor and was getting the same kind of high results. So my very high BP when upright is real.
Im wondering if anyone else here has this severely?? My BP goes both low and extremely high. How is this usualy treated? Should i be being treated? Is it dangerous? At what point is it dangerous? (im worried that one day it may go too high and kill me).
(on top of that ive got POTS..previously diagnosed by another doctor then i have now. My currently doctor when i told him just said he didnt know what it was and didnt wish to reseach it. I know how to deal with the POTS but have concerns about the other issue i just mentioned).
I have been diagnosed with NCS. I am on 4 bp Meds for blood pressure. Mine ranges in a day from 100/60 to 170/90. Of course if I stand long it goes very low and I pass out. Its always high at Dr. My Dr says high bks.pressure even just in Dr office needs treatment. Ru on any Meds at all? Could u keep a lot of bld pressures for a week for your Dr and take it in for him to see how it is doing? Maybe that would help.
My BP goes from 80/60 or 90/52 right up to 176/138 .. hence the "diastolic" part of my diagnoses. The specialist said its the biggest BP range he's ever seen someones doing. (that was before he just dismissed me and not suggestig me do anything about it).
and im still in my 30s hence my concern and questions of when does these things get dangerous..
Yes you can have a dx of orthostatic hypotension and have co-concurrent hypertension.
Some people only have the hypertension when they lay down. Others have a reactive hypertension that comes with stress like going to the dr. or being upset about something or it just happens. I was once on three BP meds and then started having episodes of low BP. At the worst of it, I would have flares of high like 190/150 and lows as low as 64/50. I felt like my head was constantly expanding and contracting with the pressure changes...We reiviewed my meds and found two that were contributing to heart arrhythmias and I went off those which did help. My doctor also wanted to give me a short acting BP med to use when needed but I started having fewer of the high BP's and lower BP in general so I started weanign off my BP meds. Because of some high BP still I am on a small amt of BP meds.
As for danger, I was told the changes in BP are the reason several small strokes showed up on my MRI. I think you should see a doctor who has extra training in BP, perhaps a nephrologist, and make sure there are not extenuating reasons for the BP changes. The kidneys also have a lot to do with BP regulation. In my case the kidneys were ok but my doctors did check that out first. My dx. is pure autonomic failiure. I am still on a tiny bit of BP meds to keep the higher number lower.
Over time I am having fewer of the high BP and those are lower now. Most of the spikes are like 145/95 instead of the 195/150. If I had continued to have them, and they were predictable, like the same time every day or when I go in to see a new dr., I could have opted to take a shorter acting BP med at hose times. For sure it is hard to treat the combined low and high BP. My understanding is that about 50% of people with PAF have co-concurrent hypertension, particularly when they lay down. . I did in the beginning when I lay down but my BP when I lay down now is not hypertensive. I have had the gamete with BP changes.
One of the hallmarks of this disorder is that BP becomes highly reactive. I mean I never used to have white coat syndrome but now it is rather dramatic. I can physically feel very calm but have these spikes in BP. Your doctors should not be surprised by this.
Perhaps you could find a doctor versed in autonomic dysfunction, even if you have to travel to see them. Some of the other posters here have recently talked about this white coat syndrome.
Knightschild I hope u will see another Dr. Another me story:) 9 yrs ago my disatolic ran high like that and my Dr blew me off until one day I ended up with diastolic heart failure. I ended up.at that point with.a cardiologist and they got it under control hence the 4 bp Meds. Mtgartner has a good point u need kidneys checked. I was sent to a nephrologist and had a real scan etc. I am guessing those r ok from your ranges.but they should be checked. A bp that high should never be ignored. Let us know what u find out.
my issue isnt pure autonomic failure (i researched that when i first found out i had this issue). My BP goes the opposite way to that. It goes extremely low when im laying down, and goes extremely high (eg orthostatic hypertension) when im standing.. where as pure autonomic failure from what i understand goes the other way.
i dont have white coat syndrome as im always usually good (or in prehypertension kind of reading) at doctors, due to them not taking my BP when im standing.
ive been told my issue cant be called true hypertension either.. due to the low BP at night while in bed.
Are i the only one at this site with this kind of BP issue??
. "Most of the spikes are like 145/95" ithat's my quite normal standing and often sitting BP level (when it isnt spiking)
Does your BP raise when standing? I've been know to pass out for between 3-5 mins (that is how long a friend said i was out for). It concerns me hearing that you had a heart attack from this kind of stuff.
My doctor isnt at all worried about what my bp is doing, as he wont believe me when i tell him and he wont check himself with me upright and standing... and he also ignored my 24hr hoilter results as he couldnt believe my BP was varying so much.
So its no good taking results to him as when i do.. he wont believe it.
it's frustrating that i have big issues (thou no where near as bad with my passouts) and never had been able to get doctor to pay attention (as they only test it when im sitting and that doesnt show the big issue i have with it).
Im able to deal with my POTS quite well nowdays and only have near passouts now in certain situations eg warm, been sitting for a while and then stand and just after a meal. That combination one third of time will make me almost pass out, it will collapse me onto the floor.
To avoid POTS symptoms.. i drink up to 7 litres.. (28 cups) per day if i need to be on my feet. Most of the time thou i only need to drink about 4 litres (16 cups) if i need to go out and do something. Its annoying as it means while out, I need to constantly drink and need to be going to the toilet every half an hr or less. but anyway.. i can go out now without symptoms as that does control it.
(when im home all day sitting.. i can get away with only needing to drink 8 cups per day without having symptoms come in).
My bp goes up when I stand then after 2 to 4 min starts dropping fast. That's when I faint usually. I didn't have a heart attack I got dyastolic heart failure from high dyastolic pressures. High bp always needs treatment according to my cardiologist. Drinking lots helps me also
ive never seen mine drop when im standing even when monitoring it for 20 mins standing .. no idea what happens when i faint, if im fainting cause it's gone too high? (my head will go foggy and get a head pressure just before and i can loose sight), or dropping? (but i dont understand why ive never caught a drop while standing while monitoring) ..or if its something my heart does which can cause the complete faint.
A while ago.. a doctor sent me to heart clinic as i was getting chest pains at times.. and they did a heap of tests (unfortunnately didnt do tilt table.. as that would of showed the POTS, that shows up easily with monitoring) but they did a short exercise stress test, heart ultrasound, EEG (while laying!) etc but those are the tests which show nothing as they didnt involve me just standing.
so i got given an all clear and now doctor wont believe the BP stuff.
Could it be high but drop when u faint? I will.explain what I was told. Let's say u have bp of 180/100. Then your bp rapidly drops to 150/80 both my cardiologist and ep say that can cause a faint even tho technically your bp is still high. Also maybe u have an arrthymia? Has anyone taken your bp or pulse during or right after u faint? That info could be helpful. I would find a different Dr. Hypertension in any form should be evaluated and taken seriously
First, have you had a tilt table test, and if so, what did your BP do on upright tilt? (If you were given only vague results by your doctor—e.g., you "failed" the test—then you need to go to the medical records office and ask for the actual complete results from the test including the actual tracings ... EVERYTHING ... so you can see for yourself, moment by moment, what happened during the test. You may even want to take the records to another cardiologists for a second opinion. These tests are misread with disturbing frequency because subtypes of dysautonomia can be tricky to distinguish from one another for docs not experienced in doing so.)
Secondly, a holter monitor records ECG (aka. EKG), not blood pressures. Ambulatory blood pressure monitoring is what you would need to get done to show your doc what your BP is doing over a couple of days at home. It's to blood pressure what the holter monitor test is to heart rhythm. So if you haven't had that test, you may want to pursue that, especially if your doc isn't believing the readings you bring in from your own personal home monitoring.
Lastly, and perhaps more importantly than anything else, if you have a doctor who seems unwilling to work with you and distrusting of what you report to him/her, the most important thing you can do for yourself at this point might be to get a second opinion or just scrap it and find another doctor entirely. You deserve the best level of care possible.
Let us know if you have any questions about the tests I've described or anything else. The tilt table test is by far the most important, particularly as you point out your symptoms are orthostatic. There are other autonomic tests that you may want to pursue depending on the outcome of tilt table testing. If you do have tilt results already and can describe them specifically, I may be able to suggest further autonomic tests that could possibly be of help that you might want to ask your doctors about.
I have the same issues with my BP. When I am laying my bp is low, when I am sitting it ususally levels out and then when I stand it goes high. I have had really high readings up to approx 254/200.
My docs have never taken this seriously as when they re - check and I am sitting etc it stabilises! On my tilts it has always shot up high, on my exercise tests they have stated that I have an abnormal bp response to exercise and 24 hr monitoringhas shown high overshoots - which were 'overlooked' as my heart rate was 'erratic'!
I have recently undergone some autonomic testing and am awaiting the official results but my bp increased on the 2 tilts they done to. On the last one I had it shot really high and they were once again discussing a Pheochromocytoma.
If I get any answers on this issue I will let you know x
Update to my post which I did over a year ago. Till now.. I hadnt been able to get doctors to listen.
A few days ago, my specialist when I went in there about my condition once again, planning to beg and plead for him to listen to me about it.. amazingly he'd heard a professor the day before, talking about POTS and autonomic dysfunction on the radio.
So thank God he knows about POTS now. Hearing what he had.. He then wanted to see what my pulse and heart rate was like when standing and lying. I had good normal readings while sitting. A slight drop on laying (but still good) and then I stood.
My BP did go instantly up and he took it again after one minute and it was 170/120. We stopped the test at this point as I went dizzy. My heart beats were happening very variable strengths and my pulse was varying between 80 and 11 beats per minute (as it was missing beats). (so this time I didnt show any POTS).
This was the first time too in which Ive seen my BP go up so high so fast (usually it takes a little while of standing to do that.. not 1 minute). Usually too i get POTS too first but that didnt happen so that is new this response like this.
I hadnt actually taken my BP in a year (as it was just so concerning when no doctors were listening to me about it), so I assume my condition may of changed in that time and todays readings were not a one of thing in this kind of manner.
Possibly its changed so much maybe I cant get POTS anymore as maybe the BP going up high first will stop the POTS, as the BP is going to make me dizzy and need to sit before the POTS may be able to come in?
Anyone else here have issues with low BP when laying and high BP on standing? (this way rather then the other way around).
My specialist seemed quite shocked to see what he did see happen to my BP and immediately has refered me to go and see a Professor who specialises in BP next month.
I forgot to add.. I still havent been able to get any tilt table testing done yet. So hopefully that will be arranged when I see the Professor. (not sure how that will go, kind of scary seeing Im about to pass out in a minute of standing and how my heart and BP acting like that so quick. Im scared my heart may stop with that.
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