Do Any Of You Have Normal Bp?

[HopefulLady]

Ok looking back at my charts and medical records I don't have low blood pressure drops at least they have never caught it during any visits. Mine are either normal or high with the highest reading being 160/100 this was caught in the ER when I had an episode. I was using the restroom I stood up and felt faint. When I got back to my bed I told the nurse I was having symptoms she hooked me up to the monitors and my heart rate was 170 and my blood pressure was 160/100. This was just from standing up after using the restroom. I obviously felt like crap. My question is with POTS can you still have it without a dramatic drop in blood pressure? Usually when I have these attacks my Bloop pressure is high not low.

[lieze]

Ugh my blood pressures are generally too low.

In the beginning I was dropping out of the blue to like 70/40 and I would feel really crappy and then I'd pump out "whatever" and it would usually take it up to 100/60? or so and then I'd usually be okay for a while.

I feel really good right now and just took it and it's only 86/49?

So now I'm worried-drinking Gatorade.

Lately though I've had a couple episodes where my bp's shoot up but the highest I've seen is 130/80 which is very high for me. I felt like crap-had a headache etc etc. It ended up coming down though within an hour.

I feel best when my bp is around 106/70

[Tammy]

Mine does that same thing. It will go high during an adrenaline surge and than will drop down, to a bit lower than normal and then reset itselt. So for an hour or so, it may be 160/100 during the surge and than will drop really low, like 85/50, and than over hours/day it will go to my typical 107/67. Not fun, but that's the cycle it seems to have.

[HopefulLady]

The lowest mine has have been was 90/64 ... it is normally around 110/75 unless I am having a spell and then it's high. Although I have never monitored it at home. So I guess I don't know if it's ever gotten too low. But the times I have felt bad like I was going to faint with tachycardia my blood pressure is always elevated.

[carinara]

i experience the same thing you do. My BP is almost always on elevated. I dont have big dropps in BP either (never caught one). My normal BP range in during the day is around 140/100. In the mornings before i get up its a little lower. If i get an episode it can get as high as 180/130. Even if i feel iam going to black out, my BP is elevated. I have been to 2 different POTS specialists and they both said, that there are POTS patients who deal with that but that most POTS patients deal with low BP.

[HopefulLady]

i experience the same thing you do. My BP is almost always on elevated. I dont have big dropps in BP either (never caught one). My normal BP range in during the day is around 140/100. In the mornings before i get up its a little lower. If i get an episode it can get as high as 180/130. Even if i feel iam going to black out, my BP is elevated. I have been to 2 different POTS specialists and they both said, that there are POTS patients who deal with that but that most POTS patients deal with low BP.

Yeah that's basically what happens with me either my BP is normal or it's high. I did read somewhere that in order to be diagnosed with pots your bp does not have to fall and that many pot's patients have little if any drop in BP at all. And some have increases. I was just wondering if their was anyone here who had normal BP or High BP at the time of flare ups. My blood pressure is all over the place but I have never had a low reading.

[firewatcher]

I'm one of the hypertensive ones. My BP is normally around 100/70 while sitting, but once I stand up it will go to 98/80 (which is called a narrow pulse pressure) and my BP will climb from there. I've had one 173/149 reading when I was super dizzy. We are the constrictors of the group. In response to standing, every vessel squeezes and keeps squeezing and it just raises our BP.

[peppermint patty]

I don't know what I am. All I know is that I feel ok when my bp is 99/67 and when

I am very ill it spikes to 175/153 (like last night). I have been diagnosed with NCS and

recently with partial seizures, but nobody is telling me why my blood pressure is spiking.

I didn't even know I was having seizures...is this why my blood pressure spikes?

Who knows? Just more crazy stuff....

[arizona girl]

Me too! I go up when standing but I drop when I'm supine. I'd say I'm a swinger! On my TTT I went up up, progressively got more painful, then after about 30 min I started getting the symptoms I get in real life before I collapse. Ears get stuffed, can't hear, start ringing, dizzy, sweaty, clammy, nauseu, can't see. On ttt bp/hr spiked then sudden drop. Once it starts it is very fast. That time I actually passed out. In life I'm fine one second, then I'm sliding to the ground kissing the dirt and I can't get back up. I'm just lucky I'm a slider, and I get down fast, before I actually pass out. After the tilt I also know I better sit my butt down if I get too high and reset, or I will have an episode.

Interesting there was a poll a few weeks ago where someone asked does your BP go up, down or stay the same. About 40% of us went up and 30% went down, only a few stayed the same. I was surprised to see that more of us went up.

I think from my recent catecholamine test (adrenaline), those of us that go up have a surge in norepinephrine as a back up system to get the blood/oxygen to the brain. It is an over reaction though cause it doesn't stop and we eventually can't take the higher levels then the body triggers the drop to get us to reset. Perhaps those that go down don't have the ability to do an adrenaline surge, so they drop right on standing and get all those awful episode symptoms. If that is what all you hypo's experience every day, my heart goes out to you. I have a lot of pain and headaches, but the nausea during an episode is the worst.

Since starting plasmaphersis though I've had improvements in this area. I'm not getting as high or low, so the swings are closer together. My tachy though at times is more noticeable then when my bp was high with it. The doc added six more weeks of it and a low dose of an immune dampening med cellcept. My neuro believes my cause of pots is autoimmune. We will see to soon to know, if it's going to work.

[mvdula]

M bp generally goes up too. When I take it sitting it is usually normal, like 110/75, maybe a bit lower - have seen it 90/60 maybe at the lowest.

My TTT looked like this (condensed version)...and I was very nervous the whole time:

Supine:

108/78 hr70-80

Tilted:

133/77 hr90s (2mins)

142/86 hr80s-90s (8mins)

114/70 hr90s-110(13mins)

127/69 hr100s (16mins)...

115/70 hr 100-110 (20mins)then, Iso.....

135/65 hr100-130 (22mins)

110/63 hr 140s (26mins)

114/62 hr140s-150s (30mins)

These are a sample - in order of the 30 readings they took each minute of the 30 minutes.Yes, I know they did not records super-exact hrs, but my hr basically kept going up (tho it bounced around), but my bp basically bounced back & forth between normal & a little high. You can tell the last 3 readings I wrote were part of the 10mins after the Iso (sorry, I can't spell it), after which I felt the much faster hr and very pounding heartbeats - not fun. BUT, I did not feel ill and never came close to passing out. Dizziness is not a symptoms for me, nor is passing out. When I have had episodes, and have taken my bp/hr, they are both high - I remember bp readings like 140/95....and they seem to stay that way during the episode, so I can't sleep etc. Like they are stuck.

However, my catecholamine test was normal....and I don't have problems standing (except for too long maybe), just w/ exertion and heat. Wish I understood all these mechanisms better.

[HopefulLady]

M bp generally goes up too. When I take it sitting it is usually normal, like 110/75, maybe a bit lower - have seen it 90/60 maybe at the lowest.

My TTT looked like this (condensed version)...and I was very nervous the whole time:

Supine:

108/78 hr70-80

Tilted:

133/77 hr90s (2mins)

142/86 hr80s-90s (8mins)

114/70 hr90s-110(13mins)

127/69 hr100s (16mins)...

115/70 hr 100-110 (20mins)then, Iso.....

135/65 hr100-130 (22mins)

110/63 hr 140s (26mins)

114/62 hr140s-150s (30mins)

These are a sample - in order of the 30 readings they took each minute of the 30 minutes.Yes, I know they did not records super-exact hrs, but my hr basically kept going up (tho it bounced around), but my bp basically bounced back & forth between normal & a little high. You can tell the last 3 readings I wrote were part of the 10mins after the Iso (sorry, I can't spell it), after which I felt the much faster hr and very pounding heartbeats - not fun. BUT, I did not feel ill and never came close to passing out. Dizziness is not a symptoms for me, nor is passing out. When I have had episodes, and have taken my bp/hr, they are both high - I remember bp readings like 140/95....and they seem to stay that way during the episode, so I can't sleep etc. Like they are stuck.

However, my catecholamine test was normal....and I don't have problems standing (except for too long maybe), just w/ exertion and heat. Wish I understood all these mechanisms better.

My catecholamine was normal too!! See your numbers look like mine I haven't had my official TTT which is this tuesday. But I have a heart rate monitor (sport's watch) .. I can track my heart rate laying down it's usually low 60's-70's Sitting high 80's 90's .. Standing 130 and up. And my blood pressure can be 110/70 all the way up to 160/100. This is what I have seen anyway throughout the years I have been dealing with this monster. Usually dizziness and High BP is apparent when I am having these flare ups and they scare the living day lights out of me because I have the flushing feeling the Gi issues and feeling faint all at one time. I am not a fainter either I have never fainted but I have felt faint many times. Laying down and ice cold water seems to do the trick to bring me out of it. Thank you for posting your TTT results it's interesting to see. Seems like the longer you are on your feet the higher your heart rate goes.

Also heat is a major problem for me it will make me sick I try to keep cool at all times. I hate the heat LOL

[Birdlady]

The heat is absolutely debilitating for me, but my BP tends to be lowish. During my tilt test though it did not drop until after they gave me nitro. I still don't know exactly which "type" of POTS I have!

[ramakentesh]

In most POTS patients there is not a serious reduction in overall blood pressure and in adults often an increase. Its the cerebral blood flow or its velocity that seems to be the problem (which is not measured by normal BP checks).

[MomtoGiuliana]

During flare-ups my bp elevates. It also tends to be higher in the AM. BUT, typically my sitting bp is 110/70 or lower, and it also tends to drop a little when I stand.

[Maxine]

Only when I go to the doctor----lol.

On a serious note, it's normal at times, but sometimes it even gets high, and I usually feel worse when it's high.

I think this is when I'm having an ANS crash-----------not necessarily a long term crash, but it's usually when I have pushed my body too far, or after some kind of medical procedure that has stressed my body. I think it's my BP over shooting to compensate for the stress, but my tired body isn't able to handle it very well-------this making me feel worse then I do when it's real low.

When I went ot one appt. to check my cardiac loop recorder that has since been removed, I had a very nice Male RN that I love. So, I was in a much more relaxed state, and this enabled me to have my usual BP response without the "nurse ratchet", or white coat response..........it was 80/70-----only 10 points pulse pressure. I took 10 copies of this, and show it to any new physician.

Maxine :0)

[Christy_D]

When this whole thing started for my son he was very in shape and athletic so his resting heart rate was upper 50's low 60's, with a lower bp 110/80. Now that he is so deconditioned his resting heart rate is in the 80's and his blood pressure has gone up. When he stands up, his blood pressure goes way up. He goes from about 110/80 to 150/100. I guess that is why he isn't a fainter.

[lissy]

My B/P is usually low it ranges from 105-80 top #

80-50 bottom#

I feel worse if its 105/80 ,it has gotten to 125/85 and I felt pressure in my head ???

All the doctors say its so low but it seems like I have to keep it below normal to feel the best maybe its been low so long it wouldn't be good for it to be normal...

Lissy

[Kujiforo]

My blood pressure bottoms out much of the time and fluctuates between normal and low during each day.

Usually around 70/50 when I am having my worst episodes.

I've never had high blood pressure. I can usually tell when I am about to have an episode because my ear buzzes and/or pops denoting low blood pressure.

I have not been diagnosed with any form of dysautonomia, but most doctors have suggested this, so I am to be tested soon, given my array of symptoms.

[Detrick7]

I am very glad this topic was raised! I was diagnosed with NCS less than a year ago. I had a ttt, but never saw what my heart rate or bp did during the test. I didn't faint, but had a few "episodes". I have actually only fainted twice, and fall occassionally, but most episodes are light headed, arm twitching, vision blurred, etc. etc.

I bought a blood pressure monitor and heart rate watch. I expected that my blood pressure would be low all the time, but it is not. Either normal or high (usually the top number is the high one, 130-140).

The question I have is my cardiologist has put me on midodrine. which raises your blood pressure. I am even to the max dose (10 mg 3x daily). Does this make sense? I have never actually taken my blood pressure during an episode, but have shortly after, always normal or slightly high. Maybe my blood pressure does drop during the actual episode and that is why I am on midodrine. I mentioned to the doctor that I was worried my blood pressure would be too high on the midodrine, but he didn't seemed concerned.

Side note, I started excercising about 4 months ago, gradual at first, but really picked it up the past 3 months. Good news, lost about 30 pounds (down to high school weight) and in best shape of my life since a teenager. Bad news, my episodes have greatly increased, not when working out but usually the rest of the day. That was the main reason I am up to my max dosage of midodrine. I was afraid cardiologist would tell me to stop working out or dial it back, but he was very supportive and said he thinks increased episodes maybe temporary.

I don't know, this whole NCS thing (I might have POTS too not sure) is confusing to me sometimes. Should I try to alter my life to cut down on episodes, lay down and take it easy, or say screw you to NCS and do everything I want even if it causes me more episodes? I tried taking it easy when first diagnosed, and actually cut down on the episodes. But, eatting a high salt diet and not being as active didn't seem right to me either. So I started working out, am in great shape now but fall going up stairs, get bad arm twitches when lifting arms (even slightly sometimes), weak knees, light headed, etc. etc. Which is better? I guess being in shape and more episodes, but on the days when it is a pain to just take dishes out of cupboards or walk up stairs without falling I don't know. At this point I am just going to keep pushing myself and hope it doesn't get worse. Don't get me wrong I love being in better shape, I was just really hoping it would make my episodes better not worse. My cardiologist still thinks it might "go away", but I am 31 and as far as I can remember have had this since about 15 years old.

Thanks for listening to me vent. Any comments on midodrine or anything else would be appreciated. No side effects besides head tingle which I don't mind. I was originally put on Citalopram, but had sexual side effects so was switched to midodrine.

[sandymbme]

Mine is always low, my usual is 110/80 or so. But when I am having bad flares, it can drop to as low as 60/30. (Which is awful! And scary!) Have been really sick with some kind of viral thing the last couple of weeks and my bp has been consistently low, typically 90/60. Yesterday at my doc's office it got down to 80/50, and I am still trying to recover.

Sandy