Interesting dr's appt

[Mom2four85]

I went to see my new pcp this morning - very nice office and she really listened to what I had to say about pain, managing symptoms etc.

She asked why they have me on a BB and Midodrine and I had no answer because none of my dr's have given me a solid answer in almost 20 months...She's sending me to a new cardiologist & EP and doing bloodwork, EMG, xrays etc for all of my symptoms.

Funny thing is my bp was 145/115 when it normally stays around 90/60 or lower; anyone else have this happen with NCS/OI? now I have a new symptom! high bp grrr I'm tired of this and want off the roller coaster ride hehehehe

hopefully with new dr's and tests I may get some help and relief..she at least gave me some pain meds so hopefully my back and neck will feel better and might be the cause of the high bp; today since it's cooler my pain lvl is only a 6 but the past week it's been solid 8 or 9...

[Mom2four85]

thanks for the info - I was surprised to read one of the CC dr's say that about white coat syndrome; I really didn't think it meant anything until beema36 asked me about it.

I'm going to go and read the link you have now - I try absorb anything about bp =) and my goodness the new things I learn.

Your question is the same as mine and the reason I'm not on meds for it..I want my own cardiologist to check me out over a period of time and then I'll say ok to HBP meds not just after 1 reading - or hey go even 1 step further; find out why my bp is high now...

my bp was a little high at that particular time,  but 90/60 is normal for me and any change in position can make it plummet. Say I do get a HBP med, then it will even lower and I'm in the fainting merry go round even more often - no thank you.

[Heiferly]

Ugh, forgot to say ... congrats on your new doc and glad she's really listening to you!!  I hope this works out well for you.    :-)

[Heiferly]

Lisa,

Thanks for that insight on white coat hypertension!!  I had never heard that or looked at it that way, but it's an excellent insight and makes complete sense now that you say it.  I can definitely see situations where this would apply (and of course, like anything else, some situations that might be the few exceptions).

A quick skim of some of the most recent publications on WCH seems to indicate that the verdict is still out on whether to treat in frank cases of WCH rather than just monitor for the development of hypertension:

http://scholar.google.com/scholar?hl=en&q=white+coat+hypertension&btnG=Search&as_sdt=0%2C36&as_ylo=2008&as_vis=0

However, at least some of the material I read seemed to indicate a trend toward limiting the definition of WCH to blood pressures of systolic 130 or lower, to preclude the risk of not treating cases at higher risk.  Which is in keeping with what you posted above re: the higher risk of higher BPs.  So the sum total of the message may be that with a WCH as high as 140s or more systolic, (whether or not it is technically still called "white coat hypertension at that point by definition), the treatment protocol at this point is to treat due to the outcomes of the research which have shown increased risk.

My question (perhaps stupidly?) then would be what is the plan for those who have labile pressures and see both highs and lows?  Is the intent to treat the highs to mediate the cardiovascular risks and to leave the patient to suffer the consequences of exacerbated symptoms of more severe lows??  Maybe I'm just confused here, but how do you treat both in the same patient?  I mean, I know we have a few here with this issue and it's been discussed before, but I still just don't "get it" I guess.  I'm also feeling extra foggy today ... so this probably isn't the best time for me to be trying to sort this stuff out in my head.  :-p

At any rate, thanks so much Lisa for posting that!!  You learn something new every day!!

[Mom2four85]

sorry I haven't responded it's been one of those weeks =)

I've been looking into white coat syndrome and other things such as untreated DD, LVH etc and someone asked about WCS in the expert forum...very interesting topic and answer from the MH dr.

http://www.medhelp.org/posts/Heart-Disease/Hypertension/show/1445465

"In terms of white coat hypertension, we do know that having white coat hypertension is not something to ignore and I actually recommend treating people even with white coat hypertension because getting blood pressures in the 150's at any time are not good."

"The guidelines here in the US for blood pressure are < 140/90 or if you have diabetes or chronic kidney disease < 130/80."

"I go with the literature suggesting white coat hypertension can lead to true hypertension and I think if it is a person who consistently struggles with anxiety, stress, panic attacks, I would treat them."

[beema36]

I have ncs and.OI and have spikes of high bp. Was this high bp in drs office? Mines almost always too high in my electrophysilogists office yet is very low at home and often low in my pcp office. They have decided I definitely have white coat syndrome. Could that be your problem? I hope your pains better soon.
Beema