Just Pots....

[erikainorlando]

I think I really just have POTS. I don't seem to have issues with BP....but I do have a few questions if you all don't mind. I guess first, am I the only one who only seems to really have difficulty with just HR, not BP?

My TTT indicated my hr increased by 70+ bpm...but not real indication of my BP being abnormal. However...my BP is normally kind of low. I am on toprol for my HR but I know they wanted me to periodically check to make sure my BP was still ok...as it can lower the BP even more. My BP this am standing was 82/64....laying down was 102/75. This was before the toprol (altho I take the XL kind and I believe it stays in your system a while. What is considered a low BP? What is NMH?

Thanks so much!!! I have started looking this up online getting confused..and thought you all were a better resource anyway!!

Thanks.

Erika

[bjt22]

Well, your reading fits the definition of orthostatic hypotension. It's just a drop of 20 or more points systolic/10 diastolic upon standing within the first few minutes. Often, those of us with POTS might have more of this kind of drop when treated with beta blockers...the beta blockers lower the heart rate that was just an attempt at compensation for the dropping blood pressure. Even without beta blockers or other meds, this will still happen to many of us.

NMH is just a blood pressure that will gradually drop upon standing. It doesn't have to drop within the first couple of minutes as in the older definition of orthostatic hypotension. What's too low? That's always a question that is up for debate. Generally, too low is when you can't function well with it at that point. Generally, any systolic reading below 90 is considered to be "hypotensive", but any further than that, well, there isn't much in our medical literature providing guidelines.

[erik]

I'm half with you on the BP side... for me it is only an intermittent problem! Plus my numbers don't usually go very low (starting in high-normal BP range and dropping to 110 or so, except on very bad day). However, my pulse will double or more upon standing... (sometimes coming from the 40's). The bradycardia makes the doc shy away from beta-blockers for me.

One weird thing is that I start to white-out in just the 90 systolic range... so it's perhaps some ill-timed blood vessel constriction in the head too (which I've read about in relation to syncope probs). I think passing out is normally below 60/70 or something so I'm a "sensi" in that realm (a little "scrubs" lingo).

I get confused when some say its POTS only when there is NO orthostatic hypotension. Here is an example, from Raj at Vanderbilt (the POTS mecca):

http://www.ipej.org/0602/raj.htm

"Postural tachycardia syndrome (POTS), characterized by orthostatic tachycardia in the absence of orthostatic hypotension..."

... so perhaps Erika is the only one here that actually has true POTS!

[potsgirl]

According to my POTS specialist at Mayo, I don't have "POTS" per se, because their definition includes a 30+ increase in heart rate when standing (from a supine position), without a major BP drop. He tells me I have severe orthostatic hypotension. The cardio I see here, who also does a lot of work with POTS patients and did my TTT, tells me I have POTS due to my HR numbers. Here are my usual numbers:

Supine: BP around 90/64, HR 60 (I have a pacemaker that keeps it at 60 due to bradycardia)

Standing: BP from 60-75/50-60, HR 110-140

My BP falls a lot, but my HR usually at least doubles. I can faint when my numbers are anywhere in the 60s, or sometimes low 70s, depending on the circumstances. I think the purer definition of POTS is the one my Mayo doctor has shown me. Does this help?

Cheers,

jana

[flop]

There are many arguments between doctors on the definition of POTS. Dr Grubb's interpretation is that POTS is purely diagnosed on heart rate increase of 30/min or more. In my understanding BP in POTS can go up, go down or stay the same when upright and all those situations are POTS.

NMH has already been defined by someone above. Often people are diagnosed with POTS and NMH.

Erika your BP readings posted do fit with NMH and I wouldn't say that you don't have issues with BP, most people would feel pretty unwell with a BP of 82/64.

when comparing lying and standing BPs and heart rates it is usual to lie down and relax/rest for a while. Take the lying down measurement first, then stand up and do the standing measurement.

Flop

[kayjay]

Hi- reading your posts. My BP has been as low as 86/44. Is this crazy low? I did feel poorly but I feel worse when my BP is 150/106. I think my is all over the place. I was put on a bb b/c my resting hr was 150+ but now I am cutting the pills in half because my bp has been sooo low I can't begin to function on a full dose. thanks for any info- KayJay

[tinkerbella]

kayjay

what time of day are you high and low?

do you just take a bb and is it er?

you sound like i used to be but i was on hormones

to stop bleeding.

bellamia~

[kayjay]

kayjay

what time of day are you high and low?

do you just take a bb and is it er?

you sound like i used to be but i was on hormones

to stop bleeding.

bellamia~

[kayjay]

Bella- OOps to the above. I don't notice a time of day really, and I am not on hormones although YAZ birth control pill set off my latest severe POTS episode. I took it for irregular bleeding and within 2 weeks was in the hospital... but I am almost glad b/c I got bad enough to get diagnosed. I think my BP is lower in the AM and higher as the day goes on. The trouble is I have children (9 and 10) who are a little fearful b/c this past spring it seemd like I was going to "kick the bucket" (WEIRD expression). Anyway I try to never take my BP when they are around me and... they are always around me. I think I am lower in the Am because that is when I am most likely to "grey out". I did have a ttt and I know that my heart rate got crazy high but they never told me what my BP does. I am sorta wondering how low is too low because I am always stop the beta blocker-

[erikainorlando]

Thanks all! I knew I came to the right place for dys knowledge and experience!!

And Kayjay - yes....i was told to not take the whole bb if my BP went too low...

Thanks again...Erika

[tinkerbella]

Bella- OOps to the above. I don't notice a time of day really, and I am not on hormones although YAZ birth control pill set off my latest severe POTS episode. I took it for irregular bleeding and within 2 weeks was in the hospital... but I am almost glad b/c I got bad enough to get diagnosed. I think my BP is lower in the AM and higher as the day goes on. The trouble is I have children (9 and 10) who are a little fearful b/c this past spring it seemd like I was going to "kick the bucket" (WEIRD expression). Anyway I try to never take my BP when they are around me and... they are always around me. I think I am lower in the Am because that is when I am most likely to "grey out". I did have a ttt and I know that my heart rate got crazy high but they never told me what my BP does. I am sorta wondering how low is too low because I am always stop the beta blocker-

hi, sorry had to grab dinner. i'm low always recently till 2weeks on florinef and i'm can't stand the headaches, nausea, and memory problems.

my docs want me to take my pressures standing and sitting whenever i feel symptoms.

cardio wants me to be at least 140 standing. yes, i did say 140 or ever higher.

then we can add a SLIVER of a bb the last one I haven't tried.

i've been 110 and falling since they took me off birth control pills The strongest ones the put cancer pt. on to stop pre-cancerous cells.

within a week i was in the hospital, put me on another one i had no choice but to weather the storm, as my cardio would not allow surgery

with my vitals so unstable.

i was unable to stand in the am bp would go up mid afternoon crash evening

i was doing near pass outs at night and pass outs

confirned by 24 hour bp monitor over and over again.

last week doctor decided this old heart has been a ticking way too hard for way too long, i had been mis dxed 20 years ago with asthma. i have been taking all the wrong meds, neb treatments, inhalers. i think you get the picture.

i've been low bp sitting and even lower sitting with exertion the hr goes up to 171 and can't catch my breath for 15 mins.

i go in the hospital 2 full days a week for iv hydration.

it's a big help, as it stays in me longer than when I drink it.

i must say if these headaches don't go away i don't know what more the dr can do. as we have run out of options.

i'm on 3 meds for headches now.

i'm allergic to so many meds that i had to get a cortsone shot in my butt yesterday without any numbing agent ( allergic )

I hope with your kids you can teach them that everything is fine, role model that a mom takes care of herself

Kids fear more the unknown.

my almost 5 year old granddaughter is the one who talks to me the most openly with love and care.

We talk about having NO FEAR and then she'll tell me what she thinks is going on and I tell her so she doesn't have to worry.

I resure her that I'm getting the best of care to have more energy to play with her. I also educate her about all the medical equiptment they

use on me and she uses they in her pretend play. She wants to be a doctor one day. I try to take a situation and turn it anound into a learning experience.

I love hearing what is going on in her little mind. It's better she express that she's concerned about me out in the rain wnen it's not salt water.

Who would have known? We are always open my little girl and me!

I hope this was helpful.

Good luck to you.

BellaMia~