Fluctuating blood pressure

[jenshead]

How many of you have drastically fluctuating blood pressure?  Even if it's not related to CM.  Mine was high a couple days ago and low/normal today.  I was not in pain or under stress on the high day...in fact, I was hurting more when it was low.  I've had it change during the same dr visit before.  I've also had it change between arms, but it's not consistently high on a particular side and low on the other.  Has anyone experienced this?

My doctor is starting me on BP meds for the exertion headaches so maybe that will stabilize it.  If not he wants to test my kidney function.  Ugh, can't help but think that the diamox is taking its toll on my kidneys.

[selmaS]

  Zygy answered ur questions pretty well, yes to ur questions [Would POTS be somewhat obvious to the patient?  Would I notice the increase in heart rate on standing, or feel lightheaded? ] Unfortunately many with chiari can also have these symptoms...so, it can be hard to dx when u have both...just getting chiari dx is not easy.

That testing u referred to is basically what is done on the tilt table, except they look to see if the increase rate in movement may make u pass out......

   Let us know what the Dr tells u about those tests : )

   "selma"

[jenshead]

Alright, I'll look for the home test too.  Can't hurt.  I've never been told my pulse is fast but who knows.  I'm tired all the time but constant pain will do that to you.  I had the brown outs when I was younger because I always had very low BP...I don't ever get that anymore.

[zygy2]

I felt prior to surgery that POTS was an issue for me, the biggest thing was that I would have "brown outs" when I would stand and that it seemed my pulse was always too high.  It was not a big concern for my first NS but the NS that I have now confirms that he believes that POTS is a problem for me.  He believes that this is not fixed by surgery and really right now it is worse than ever after being so exhausted from two surgeries in the past month (pseudomenegecel repair and emergency brain surgery).  I am dealing with a very high pulse rate while trying to recover and it is really slowing things down because it makes me so exhausted.  I hope once I get better and start a healthy walking routine again that I will get things under control.  I think like Chiari that lots of Dr's don't really listen to us saying we think we have POTS.  I know on line somewhere they had instructions on how you can do a POTS test at home to see how different the numbers are.  I am sure it varies widely and that there is a large spectrum of how badly people have it but even if it is minor it  is still a pain!  I never did have a tilt table test because I had other reasons to have surgery so it was not a big deal before but after the emergency brain surgery they could not figure out why my pulse would not come down, They are using POTS as the answer.  (still no confirmed tilt table test).  Good luck!

[jenshead]

No, they haven't.  Would POTS be somewhat obvious to the patient?  Would I notice the increase in heart rate on standing, or feel lightheaded?

When I first got sick they tested my BP laying down, sitting, and standing.  I remember thinking the numbers were drastically different and something must be wrong, but the doctor didn't say anything about it at all so I assumed it was normal.  From what I'm reading it sounds like it's not.  I'm going to that dr on Thursday so I will have to ask them.

Thanks

[selmaS]

  Hi..did they do the tilt table test yet to see if u might have a related condition called POTS?
The BP is affected with POTS...so this is something u should look into if u haven't already.

   "selma"