misstraci Posted November 19, 2012 Report Share Posted November 19, 2012 I normally have low BP, my highest normal for my body has ever been 110/70ish well here recently it's been really high or what I consider really high. 130/90 range. The only reason I even know it's been high is because I've felt weird/lightheaded/chest tightness and decided to check with my BP cuff, to my surprise (because I was expecting to see a really low pressure) it has been high!!! I'm really concerned of course, because it's new to me, it feels uncomfortable and I think high BP is more dangerous than low.Have you ever experienced this or is high BP your normal? I tried looking up what might be causing it. I'm super tiny, so, it's not my weight. I don't eat terribly, maybe hereditary. Not sure what else could be causing this, do you know?It said something about an adrenal issue, Anyone? Quote Link to comment Share on other sites More sharing options...
joyagh Posted November 19, 2012 Report Share Posted November 19, 2012 funny you should post this today. I've been realizing that my problem is high BP. I always had super low BP too. normal was 90-110/60-70. But when I was pregnant at first it went down to 60/40 and by 6 months it went up to 150/85 and since my DD was born it's been all over the place. If I'm upright it's around 125-130/75-80. This is high for me and I feel tachy when it's this high. Lying down it goes to 90/50 and I get tons of palps if I'm not on BB's.I know doc's think anything under 140/90 is normal, BUT NOT FOR ME!!!!I just upped my BB dose and my tachy got even better and my BP is now back down around 100/60. normal for me. and I feel more normal than I have in years.So I think with me it's adrenaline/NE that causes my tachy and high BP. I don't have any clue about my blood volume but I feel like it would have to be ok to have high bp. Quote Link to comment Share on other sites More sharing options...
imre Posted November 19, 2012 Report Share Posted November 19, 2012 Do you salt load? I have been having high blood pressure lately as well 134/84 range and stopped eating so much salt it should help a little bit. Although there are benefits of eating salt and drinking fluids with pots. Just make sure you drink a lot. Otherwise, not sure. My doctor said this could be a good sign. That my autonomic nervous system is trying to rebalance. Hopefully that is the case although I am skeptical. Quote Link to comment Share on other sites More sharing options...
lumpchp Posted November 19, 2012 Report Share Posted November 19, 2012 I've always been low too, but since after I had my son, all the dysautonomia symptoms came out, and what happens is I'll have a pots episode,(bp drops, hr increase on standing) then later after I recover, my bp goes really high sitting down. my cardiologist says it's not common with dysautonomia to have the orthostatic hypotension and concurrent supine hypertension, and it's difficult to treat. Is yours high after an episode, or more random? Are you checking sitting and standing? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 19, 2012 Report Share Posted November 19, 2012 I also never had high bp. However I developed high bp during my pregnancy. Post partum this continued. And since then my bp can go high, during times I also feel POTS-y. A beta blocker helps bring it down, as does taking more fluid, for some reason. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted November 19, 2012 Report Share Posted November 19, 2012 I had a bunch of spikes in BP ever since I started my current med regimen including florinef, fluid and salt loading. Highest I ever recorded 160/115 - uncomfortable to say the least, but my dr didn't seem concerned about it, particularly since my BP isn't consistently elevated - my norm is around 100/70.Also, sometimes an episode of chest pain might be accompanied by a higher than norm - for me - BP. I am unsure which triggers which though, orif there is a correlation whatsoever. Fwiw I read that pain (depending on intensity) could lead to temporary increases in BP of 30-40 mmHg. If the adrenal issue you're referring to is a pheochromocytoma, there have been several posts on that (you might want to look them up). The BP in case of a pheo (which is supposed to be a very rare condition) is much higher, and accompanied by other symptoms like flushing, tachy, headaches and profuse sweating. You can ask your dr to run some simple tests to rule that out if you really suspect that it might be the case with you - plasma free metanephrines, and/or 24 h urine catecholamines. Are you on any meds that might play a role? Salt and fluid loading? Sometimes even stress might be the problem...Best,Alex Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 19, 2012 Report Share Posted November 19, 2012 This gets posted quite frequently - and by the way those BP measurements arent even close to dangerous.In NET deficiency it is suggested that while central ANS activity is decreased (stomach pooling, dizziness, cerebral autoregulation) peripheral transduction is incrased, increasing peripheral resistance and causing postural hypertension.In forms of POTS caused my volume regulatory problems (most commonly ang II catabolism) there is also postural hypertension.Blood pressure is often almost meaningless in POTS. You can have low and feel fine, or have high and feel dizzy. They dont correlate. Quote Link to comment Share on other sites More sharing options...
misstraci Posted November 19, 2012 Author Report Share Posted November 19, 2012 Joy, That's funny I posted and you were thinking the same thing. I hate when people use "normal" because we're all different and so are our "normals". I'm glad your BB are helping some. Maybe I could look into that as well.Imre, I don't salt load. I'm actually hesitant to do it for the high BP reasons (well prior to what I have going on right now). When it was super low, I was scared to over do it, so, I used it on food generously but never measured out the grams per day or salt tabs or anything. That would be awesome if the nervous system was trying to even itself out, yours or mine, maybe that is slightly true; I hope so!!!Lump, Sorry about your BP fluctuations. I've checked both sitting and standing and both are elevated right now.Alex, those numbers (160/115) would send me into a panic attack for sure! It is very uncomfortable. I wasn't aware of the pain and BP spike, that is interesting. And yes, I think the adrenal thing I was thinking of was the pheo. I do not salt load and am currently on no medications. A few weeks ago I was put on gabbapentin (neurotonin) and I took it three days and got really high blood pressure from it, ironically. I had woke up and felt like I couldn't even stand or see straight I was so dizzy and my chest felt funny, I thought for sure my BP was crazy low but it was the oppostie.Rama, Thanks, I know it's not dangerous levels but it feels uncomfortable and I think that is what scares me. If you see this again, can you explain to me your second sentence? What is NET? It's good to know that BP is almost meaningless in POTS but I need to tell my mind that because it gets freaked out!Thank you everyone for responding. Quote Link to comment Share on other sites More sharing options...
Sheila1366 Posted November 19, 2012 Report Share Posted November 19, 2012 Mine goes from low to high all the time, ever since diagnosed with dysautonomia. Was 158/88 Friday when I was at my pain dr. and heaartrate was 104. pain was pretty bad that day too thanks to gastroparesis. Pain tend to send my BP up. Trying a new pain patch BuTran. Got a whole new set of symptoms now, maybe med. related. Feel awful. Quote Link to comment Share on other sites More sharing options...
misstraci Posted November 19, 2012 Author Report Share Posted November 19, 2012 Sheila, I'm so sorry to hear about the pain and the new symptoms. I know, or have read, you have been dealing with a lot and feeling terribly lately. I hope things begin to improve for you soon!!! Hope the new patch levels out and gives you some relief Quote Link to comment Share on other sites More sharing options...
Leigh8 Posted November 19, 2012 Report Share Posted November 19, 2012 misstraci, what medications do you take? could meds be the reason? Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted November 20, 2012 Report Share Posted November 20, 2012 Was just going to ask the same. I got taken off Midodrine because my bp became really high (among other things). some people respond to steroids with high blood pressure too. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 20, 2012 Report Share Posted November 20, 2012 In pots you can have high BP overall but still reduced cerebral blood flow. Quote Link to comment Share on other sites More sharing options...
KevInChester1 Posted December 21, 2012 Report Share Posted December 21, 2012 My blood pressure occasionally drops but it mainly it seems high. I can stand up and walk into the kitchen (about 7 steps) and end up with a racing heart. When I feel bad I check my blood pressure and find it's often 140+ over 100+ - just now I felt awful and checked, 144/112 with a pulse of 128!I think it's too much nor-epinephrine which is borne out by how much worse I feel on any medication that changes this (SNRI type ones). This has always been the case, I try to keep fit and eat well. I can walk for up to 20 miles in one session (though have only done that a few times) typically my walks go on for 5 miles or so a time. I can't jog though as although my heart races with walking, with jogging it just goes off the scale. Quote Link to comment Share on other sites More sharing options...
Foggy01 Posted December 21, 2012 Report Share Posted December 21, 2012 God I know that fright you can get when you see how high it is. Was 140/90 for me a lot of times. Just borderline on high. Quote Link to comment Share on other sites More sharing options...
KevInChester1 Posted December 21, 2012 Report Share Posted December 21, 2012 Yeah, what I need to do is go to the Doctors and then say to them I'm going to stand up and walk down the corridor and back so they can test my blood pressure. They normally test when sitting and it's usually pretty good then!What confuses me is I have symptoms of Ehlers-Danlos - hyperflexible (especially my elbows/shoulders) and stretchy skin. My Doctor said that my elbows were making him sick when I showed him!!! (laughing as he said it). Didn't think Ehlers-Danlos was compatible with high blood pressure. Also decided to try Lysine/Arginine. Both together in same amount do little (cancelling each other out), Lysine on its own makes me even more tired, and Arginine gives me chest pain!Been sitting for a few minutes 140/84/87 now. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 22, 2012 Report Share Posted December 22, 2012 ive got the highest reading I am aware of so far - 190/100! Quote Link to comment Share on other sites More sharing options...
issie Posted December 22, 2012 Report Share Posted December 22, 2012 I for sure have EDS and high bp's. As for Arginine - I found it did the same thing to me. I've posted on another post about this.Issie Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted December 22, 2012 Report Share Posted December 22, 2012 I too have high bp especially during episodes. A low salt diet usually helps. Quote Link to comment Share on other sites More sharing options...
anna Posted December 22, 2012 Report Share Posted December 22, 2012 Yep highs of 210/110 but then sitting or supine it swings to lows of 90/60 and very oddly my highest BP's were when I was on a very low salt diet!! Quote Link to comment Share on other sites More sharing options...
Relax86 Posted December 22, 2012 Report Share Posted December 22, 2012 My BP has stabilized back to my norm....my HR improved as a result. Still get tachy flares in the middle of the night. Also about an hour into sleeping I wake up tachy and can feel my neck pulsating. Carotid doppler neg. Generally about 85% better but plateaued at this time; HOWEVER this is my flare season so I'm hoping that if I can get thru Jan/Feb then I might see some more improvement in what has been my worst flare ever. Quote Link to comment Share on other sites More sharing options...
Angela Posted December 23, 2012 Report Share Posted December 23, 2012 173/123 what is it with the 3's? and it's always usually around mid afternoon. in the a.m. and late at night 104/56 is my lowest Quote Link to comment Share on other sites More sharing options...
Traceyf Posted December 23, 2012 Report Share Posted December 23, 2012 lying down 130/75 HR 55-60standing ......my highest is 175/100 HR 99Recent treadmill test 170/90 standing....while on treadmill 3 minutes only.....210/130...HR 140 . needless to say, test was stopped there...doctor recently raised atenolo dose,,, now blood pressure still high...but Heart rate never higher than 65 no matter what,...and while lying down its 47.Im newly diagnosed...and 4 months into this...I am so depressed and feel helpless. Quote Link to comment Share on other sites More sharing options...
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