Why have i never heard of low/narrow pulse pressure before?

[xebex]

It seems that narrow pulse pressure is something that could be common in ME and /or OI and should be measured and tracked more?

I've never quite fit the criteria of POTs, I mean yes sometimes i do have POTS symptoms and lately i've had a standing HR of arounds 110-20 but i don't feel dizzy or faint and i don't have a blood pressure drop so i don't have OH either but my blood pressure is low/normal most of the time, and i will have a crash if i stand up for longer that 30minutes non stop (down to 2 mins on a bad day), it seems to be some kind of delayed OI and with it comes sleepiness and cognitive decline and mood swings aswell as flulike PEM the next day.

Anyway i have been monitoring my blood pressure this last week and noticed that my systolic and diastolic are very close which gives me a narrow pulse pressure, I looked it up (google diagnoses lol) and NORMAL is 40 - today mine is 12!! so - that's apparently heart failure or shock! WTF? does anyone else have this? is it really heart failure?

Thanks

 

[WantedAlive]

@xebex A pulse pressure of 12 is extremely low! Anything below 25% of systolic is considered abnormal, but levels like yours is probably only normally seen in a trauma ward. There has been much discussion of short left ventricular stroke volume in ME, insufficient preload and of course low blood volume, which would all contribute to low pulse pressure. What was your systolic/diastolic to get a pulse pressure of 12?

My pulse pressure is typically at the bottom end of normal, and I usually measure with diastolic hypertension with a normal to sometimes high systolic. My diastolic is always around 89-90, and my blood pressure monitor always alerts out of normal range, and that's just sitting in a wheelchair all day. My systolic ranges between 120-130, so when at 120 I'm right on the 25% pulse pressure limit for normal. I don't really suffer POTS or OI symptoms either but my heart measures might say otherwise.

I do notice that when standing after a 30min hot bath (I can't for long), my heart rate shoots up over 135bpm. After 20-30min in a hot bath I find I can restore some skin flushing in my lower limbs that are always usually cold to touch and pale even when my central body sweats. After a hot bath though that changes but I feel that there's not enough blood to go around and my heart rate goes through the roof with just the slightest exertion, standing or getting dressed is utterly exhausting until I cool off again. I must remember to take my BP next time I take a bath.

There could be some relevance to thermogenesis to pulse pressure. I think this all links up with the hypermetabolism and non-shivering thermogenesis in ME that presents as an elevated resting energy expenditure (REE). I generally sleep better after a hot bath, maybe it lowers my REE and I waste less energy during sleeping. An elevated REE is usually associated with higher sympathetic drive and I guess may result in a narrowed pulse pressure on addition to the other issues.

 

[xebex]

Thanks for your detailed reply! Here is today’s blood pressure, it does this quite a bit but is not like it all the time, I definitely feel very out of breath when this happens.

I have also attached a more “normal for me” image of my monitor. But then even on my more normal readings the pulse pressure is around 20.

 

[xebex]

Sorry posted the wrong image this is the one that shows 12

 

[Sushi]

Anyway i have been monitoring my blood pressure this last week and noticed that my systolic and diastolic are very close which gives me a narrow pulse pressure, I looked it up (google diagnoses lol) and NORMAL is 40 - today mine is 12!! so - that's apparently heart failure or shock! WTF? does anyone else have this? is it really heart failure?

I think a lot of us with significant levels of dysautonomia have low pulse pressure...at least some of the time. My record was 8! during a Tilt Table Test. I felt like crap x 2! Low pulse pressure happening for me while the autonomic system was being stressed gives me the impression that perhaps that is what usually triggers low pulse pressure in ME/CFS patients--a stressed autonomic nervous system. It is not a "normal" type of heart failure as it seems to be transient. I regularly see a cardiologist and don't have any signs of heart failure with cardiac testing. But, I do get very low pulse pressure if I stand for a prolonged time--my systolic will drop and my diastolic will go up.

 

[xebex]

I think a lot of us with significant levels of dysautonomia have low pulse pressure...at least some of the time. My record was 8! during a Tilt Table Test. I felt like crap x 2! Low pulse pressure happening for me while the autonomic system was being stressed gives me the impression that perhaps that is what usually triggers low pulse pressure in ME/CFS patients--a stressed autonomic nervous system. It is not a "normal" type of heart failure as it seems to be transient. I regularly see a cardiologist and don't have any signs of heart failure with cardiac testing. But, I do get very low pulse pressure if I stand for a prolonged time--my systolic will drop and my diastolic will go up.

Interesting thank you! so maybe what’s happening when I stand up for a long time is not raised HR or drop in blood pressure but a narrowing of the pulse pressure, I’ll have to track it and see if thats true. And yes I don’t think it’s “true” heart failure but maybe some signals get confused or something like a kind of neurological heart failure or something.

 

[Sushi]

something like a kind of neurological heart failure or something.

My particular type of dysautonomia is called neurally mediated hypotension--for lack of a better term!

 

[xebex]

Yes I’ve looked into it but I don’t seem to have an obvious blood pressure drop though there is obviously something going on with it as it’s always low and sometimes it does go low low and sometimes I do have high HR and sometimes I get this narrow pulse pressure! maybe if I did a proper tilt test it would be picked up. It seems I have something I between POTs and NMH. I think it’s an 8 hour drive for me to get a test so it’s just been out of the realm of possibility for me so far.

 

[Judee]

Have you tried mutaflor? It does affect my bp. It seems like your systolic pressures are too low whereas you diastolic are in range. Both of mine go low but mutaflor raises them nicely.

Anyway, things don't always work the same for everyone but I just wondered.

 

[xebex]

@Judee thanks I’ll look into it! am going to see an internist on Friday so she might have some helpful (but I doubt it) advice too.

 

[Sushi]

Yes I’ve looked into it but I don’t seem to have an obvious blood pressure drop though there is obviously something going on with it as it’s always low and sometimes it does go low low and sometimes I do have high HR and sometimes I get this narrow pulse pressure! maybe if I did a proper tilt test it would be picked up. It seems I have something I between POTs and NMH. I think it’s an 8 hour drive for me to get a test so it’s just been out of the realm of possibility for me so far.

Have you tried the “poor man’s TTT” at home? If you do it for 10- 15 minutes you will get some data though often autonomic irregularities only show up after 30 or more minutes. My worst ones appeared at about 40 minutes. If you do go for a tilt table test it is extremely important that the autonomic specialist who does the test is very experienced in both designing the test and interpreting it as it needs to be matched beat by beat with a continuous electrocardiogram.

 

[xebex]

yes i've done the poor mans test, sometimes it shows POTS but other times not, but i need a proper one as you describe as it seems my response is delayed. We have specialist clinic in Alberta but because i'm in BC (on the border) i'm not allowed to attend, and i can't access anywhere in vancouver a its a 12 hour drive- the one 8 hours away i'm not sure would be fully knowledgeble enough. I'm hoping i can get some kind of special refferal to the Calgary clinic.

 

[xebex]

went to see internist today, she's not concerned about my low pulse pressure, she says it's normal for people with low systolic pressure, so i don't really know what that means but anywya, she was fairly helpful and thinks I should be assessed for a spinal fluid leak. We had so much to talk about with my back issue causing orthostatic intolerance that i wasn't really able to talk about all the others stuff but for now i'll assume my back injury is causing pretty much everything.

 

[sometexan84]

You have to make sure that the monitor is aligned w/ your heart. Like parallel to it.

 

[xebex]

You have to make sure that the monitor is aligned w/ your heart. Like parallel to it.

Thanks I’ll try that and see if the numbers change.

 

[Carovee]

Hi!
I have just realized EXACTLY the same thing. I often get an error message on my BP monitor when doing standing up readings (and my arm is supported and elevated at the level of my heart) and I've wondered for ages about it. I posted some pictures to a Facebook dysautonomia site, and someone immediately pointed out how narrow my pulse pressure is. Often it's in the neighbourhood of 12mmHg standing, but it is always normal lying down. I also always have bradycardia lying down. I have been diagnosed with hEDS and POTS (that happened in Hamilton with a tilt table test). My systolic regularly drops substantially.

I'm in BC Canada as well!!!
What are your measurements like when you're lying down? Do you see blood pooling in your feet? (I do)
Attaching some normal for me lying down and some normal for me standing.
Super curious to find out whatever you learn.

 

[Jyoti]

Yes I’ve looked into it but I don’t seem to have an obvious blood pressure drop though there is obviously something going on with it as it’s always low and sometimes it does go low low and sometimes I do have high HR and sometimes I get this narrow pulse pressure! maybe if I did a proper tilt test it would be picked up. It seems I have something I between POTs and NMH. I think it’s an 8 hour drive for me to get a test so it’s just been out of the realm of possibility for me so far.

I've been baffled and curious for a long time--is it POTS? Is it NMH? Tachycardia with falling blood pressure. Hmmm. I had a bunch of autonomic testing today, including a very good TTT and guess what? It is not one, but both.

My systolic regularly drops substantially.

So you have POTS, but your systolic drops when upright?

if I stand for a prolonged time--my systolic will drop and my diastolic will go up.

Same here. But...you don't have POTS, do you @Sushi? You don't have the tachycardia?

i will have a crash if i stand up for longer that 30minutes

--@xebex--I think a TTT is supposed to last about 45 minutes if you want to pick up NMH. POTS shows up in the first ten, as I am sure you know. I had a 20 minute tilt ordered by someone who didn't really know what they were doing. I had to go get another, longer, because the suspicion was NMH. So if you crash after 30 minutes, that could point to a significant drop in BP as well as pulse pressure.

 

[Sushi]

Same here. But...you don't have POTS, do you @Sushi? You don't have the tachycardia?

Right, I don’t have POTS—no tachy.

-I think a TTT is supposed to last about 45 minutes if you want to pick up NMH. POTS shows up in the first ten, as I am sure you know. I had a 20 minute tilt ordered by someone who didn't really know what they were doing. I had to go get another, longer, because the suspicion was NMH. So if you crash after 30 minutes, that could point to a significant drop in BP as well as pulse pressure.

Yep, many types of dysautonomia don’t show up until after 30 minutes—then all hell can break loose. In my TTT I had a short tilt (20 min), several other types of autonomic testing and then a long tilt. I had to stop it after about 40 minutes as I felt ghastly with a pulse pressure of 88/80.

 

[Jyoti]

I had to stop it after about 40 minutes as I felt ghastly with a pulse pressure of 88/80.

YIKES. Yeah...that would make anyone feel ghastly.
Mine today got stopped at 16 minutes. The doctor promised me the full 45!!! I haven't seen numbers yet, but I did see the graph and my BP was in a nose dive. He said he had all the info he needed that quickly. And I still feel pretty ghastly 9 hours later. But glad for the info, to be sure.

 

[Sushi]

YIKES. Yeah...that would make anyone feel ghastly.
Mine today got stopped at 16 minutes. The doctor promised me the full 45!!! I haven't seen numbers yet, but I did see the graph and my BP was in a nose dive. He said he had all the info he needed that quickly. And I still feel pretty ghastly 9 hours later. But glad for the info, to be sure.

Take care—a TTT can require serious recovery.