Does This Sound Like It Could Be Because Of Pots?

[Joann]

I know I have mentioned numerous times, my problem with stairs and bending. Well, I avoid stairs except for porch(2 steps) religiously.

Today, I was on the escalator and thinking a million things and not paying attention to what I was doing (its my birthday this week and I was using my $10 coupon to treat myself to a new something)) and at the top of the escalator I realized I was walking up them and feeling awful. Now I am not sure if I just walked those last 4 steps or many more but,,,. I felt bad ,my neck on both sides was throbbing, and felt my pulse going crazy. I left the store trying to stay calm, and by the time I was home my bp wasn't awful but it was 143/92 pulse rate 92. Earlier that day it was 118/80 90. My left temple was throbbing and left upper jaw hurt.

I decided to slowly walk the block, because sometimes my bp goes down and I feel better. I even talked to a neighbor, but felt worse now it was 153/94 100. My left side above hip is hurting, the spots mentioned above, some nausea and occasionally I get these sharp pin prick pains, located between hip and private area. When I sit down my bp goes down a little 120/90 81. After a while I get cold and whole body shivers. and feel really tired.

My daughter came home and she was upset and of course, made me more upset and I got some pain in my middle stomach along with the rest.

I then went and slowly walked the block again, and talked to a friend on the phone. My bp did go down to normal. But going up stairs to house and bending to fill dogs water bowl and all those pains began again. Each time I get up my bp is going up. So far the top number has stayed below 150 and the diastolic has stayed below 100, heart rate is not going up that high it is staying between 80 and 100. I have had the jumps up to about 140, but not lately. Just the bp jumps, even on my two bp medications. And I feel awful when it goes up.

I know the numbers do not sound bad, but in past they can escalate to 180/116 and often when I have this happen it continues to get bad for days and often to where I can't get out of bed. That is why I keep getting up to walk, I am afraid if I lay down I won't be able to get up again. Last Thanksgiving I went down some stairs and by the end of the night, I couldn't even sit up in bed without feeling like I was dying and my bp going up really really high.

Could dysautonomia cause this, or something else. I have been told my heart is healthy. I wonder sometimes if maybe some vascular problem with small veins/arteries that are not being addressed.

Sorry about how long this is, but I really get scared when this happens. If this just happens with a few steps what would happen with more? Every doctor I have seen,does not want to talk about this.

[Kellysavedbygrace]

Yes. Sounds very common for autonomic dysfunction. Erratic BP and HR are classic signs of this. All of the symptoms you mention including the pain in the left jaw are symptoms I experience regularly. I am sorry. What you are experiencing is so hard to make sense of and it is easy to think, "I'm gonna die" Because that is what it often feels like. During these times I often tell myself, "It's going to be ok. This is just Dysautonomia. I need to lie down and eventually this will pass.".

I tend to be on the low BP side instead of high, but have had several disconcerting episodes where I have High BPs like you mentioned. The real test is, does your HR come down when you lie down. If it is POTS the HR should come back to baseline, or at least close, when supine.

[Joann]

Kelly,

My heart rate and bp go down some when I lay down. When I have these flares it goes down some with laying down but doesn't go to my normal low.

I was at my worst last year and looking back, I was doing poorly and then had gone up 2 flights of stairs. I felt terrible right after climbing them, but I think that was the start of a scary time.3 days later I ended up in ER my BP was up to 170/106. Of course, I was stabilized and told to see my doctor. I ended up in ER two more times that week (once by ambulance) and it got to the point I couldn't even sit up without my bp 180/116. Laying down it was lower but was still high 140/95 or so. I think the stairs are what triggered this.

My heart rate does go up at times, but often it is not that high, the bp is the bigger problem. Sometimes the heart rate stays normal, while the bp is high, the diastolic has a tendency to be worse.

I am so sorry you are experiencing this regularly. The last few months I still have flares but, I think the medication has helped some (still not sure its the right kind) and avoidance of known triggers has helped me some. But it is so easy to forget that you can't go up some stairs when you are feeling okay, or not to pick up that bag of potatoes! I am glad that I am having some times where I am pain free and actually able to eat pretty normal (avoiding triggers of course). Its been 18 months and I still haven't gotten a firm diagnosis.