Scary Low Pulse Pressure

[SickOfSickness]

I read something Dr David Bell wrote. "If the pulse pressure drops below 18, it is abnormal and blood would not circulate in the brain well. We routinely see in our patients with CFS blood pressures of 90/80, thus a pulse pressure of 10. The current record holder is a young woman with CFS whose pulse pressure fell to 6 mmHg before she passed out."

 

[Sushi]

I read something Dr David Bell wrote. "If the pulse pressure drops below 18, it is abnormal and blood would not circulate in the brain well. We routinely see in our patients with CFS blood pressures of 90/80, thus a pulse pressure of 10. The current record holder is a young woman with CFS whose pulse pressure fell to 6 mmHg before she passed out."

Record holder, I love it! Maybe we should have our own Guinness Book of Records.

Think a pulse pressure of 6 will make headlines? Not a chance, she "only" passed out, didn't die. I have had docs not believe that I had a pulse pressure of 8 even when I showed them the recorded data from a TTT. "Must have been a mistake," was the response.

Sushi

 

[taniaaust1]

my own pulse pressure difference.. Ive seen quite a few times as low as 7. It wouldnt at all be surprised if that was the cause of some of my passouts rather then them all just be due to my POTS. My monitor thou I got one now which wont error out where most monitors do (80% of home monitors error out of me most of the time if Im taking my BP in the morning when first getting up.. Ive had 4 which would never work in that situation.. erroring out 8-9 times straight, 2 of those were ones I'd borrowed from others, completely reliable thou for their BPs).

So I really had to seek out a monitor which could handle my BP and heart (top of range $130 it may of been more), I think thou this one still errors out when Im getting below 7 (I get the irregular heart beat symbol A LOT and it is cause my heart has gone erratic due to me standing).

(One time I wondered if my BP for a few seconds had reversed. my neck vein was sucking in strongly with heart beats which was very noticable, I wasnt taking my pulse at the time, I didnt have a monitor on at the time so who knows what was going on on that occassion.. what else could cause like a sucking back flow in a large vein or artery??.. main one in neck. When that started happening, I wondered for a moment if I was about to drop dead.. I didnt faint thou, it was only haywire like that for 2-3 seconds.. would I have died if it hadnt stopped the vein sucking in as if my blood was being sent the other way?? had a major hole opened up in my heart???? anyway.. another mystery symptom and its only ever happened to me once)

Sushi.. Ive had nurses/doctors blame monitors too.. the thing is I see the same results on several different monitors (hospital monitors also error out on me a lot). And unfortunately they will just take and take results (sometimes with them ending up trying to get my BP on 3 different monitors), till they see a result they like and then put that result down in ones hospital notes. Its complete biased towards our BP issues.

I remember the time one of my specialists saw my BP jump from a healthy normal BP up to 170 within a minute of me standing (he checked this over and over to make sure it was correct). Orthostatic hypertension, something I'd been telling him for years I was having issues with but he'd ignored (he didnt take my BP standing till he'd been seeing me for 3-4 years and this had been the first time he had). The shock look on his face when he realised what he was seeing was right (unfortunately that ones had a stroke so I couldnt go back to him and the specialist he sent me too when he saw this happen, wouldnt believe things so Im still stuck with no dr monitoring this).

My BP issues are on par with Dr David Bells worst ME patients but unfortunately I have no doctor dealing with this.. Im told it isnt possilble to have these results (I even took Dr David Bells article on these issues in ME/CFS to my appointment with the professor, only to have the professor say that Dr David Bells stuff must be wrong as it isnt possible).

 

[Little Bluestem]

My BP issues are on par with Dr David Bells worst ME patients but unfortunately I have no doctor dealing with this.. Im told it isnt possilble to have these results (I even took Dr David Bells article on these issues in ME/CFS to my appointment with the professor, only to have the professor say that Dr David Bells stuff must be wrong as it isnt possible).

Let me guess - this guy must have PhD is SHITS (Sticking Head In The Sand).

 

[Sparrowhawk]

I read something Dr David Bell wrote. "If the pulse pressure drops below 18, it is abnormal and blood would not circulate in the brain well. We routinely see in our patients with CFS blood pressures of 90/80, thus a pulse pressure of 10. The current record holder is a young woman with CFS whose pulse pressure fell to 6 mmHg before she passed out."

I just went and read the relevant Dr. Bell article. Pretty phenomenal about the reduced blood volume. Not sure how that is measured but along with NK cells looks like a viable bio marker to me.

 

[SickOfSickness]

I just went and read the relevant Dr. Bell article. Pretty phenomenal about the reduced blood volume. Not sure how that is measured but along with NK cells looks like a viable bio marker to me.

Article link if anyone wants it. http://www.prohealth.com/library/showarticle.cfm?libid=16797

He has specific numbers in there. e.g. Abnormal is at least 10 points drop in one of the numbers.

It has some other related papers referenced.

 

[taniaaust1]

Let me guess - this guy must have PhD is SHITS (Sticking Head In The Sand).

Little Bluestem.. this professor who said that to me is actualy the professor at one of my states biggest hospitals. (the hospital.. it was either the Royal Adelaide Hospital or Flinders Medical Centre..I cant remember which now.. actually had gotten rid of its tilt table due to it never being used so I couldnt have tilt table testing.. something which dont surprise me having an professor like that dealing with patients who have autonomic issues). it was actually a female professor

...

Here's a question for people which Ive never seen any info on.. Is narrowing of the pulse pressure treatable in some way?

 

[Sushi]

Here's a question for people which Ive never seen any info on.. Is narrowing of the pulse pressure treatable in some way?

I don't think it is directly treatable but as treatments for dysautonomia, hypovolemia and ME/CFS bring improvements, pulse pressure should improve too.

Sushi

 

[Valentijn]

Here's a question for people which Ive never seen any info on.. Is narrowing of the pulse pressure treatable in some way?

Yes, mine responds quite well to an NRI, Strattera.

 

[Scott Brown]

I raised this Low Pulse Pressure in a 2012 thread & didn't know this one existed. My wife's PP is still very low, and I wonder if this IS a marker for all ME sufferers? (a POLL would be nice).

 

[Valentijn]

Yes, mine responds quite well to an NRI, Strattera.

To followup on myself, my pulse pressure also improves quite a lot on Yohimbe, which is available without a prescription in a lot of countries. It also helps a lot with constipation and muscle twitching (magnesium issues?) for some reason.

 

[Marky90]

Okay so i just bought a blood pressure monitor, cause my gut feeling just said that when i feel bad it must be related to faulty circulation. Well after standing up, and completely still, my pulse pressure dropped to 24 and i felt like passing out. When i tried some more, i just got error. When i sat down my next reading was 170/113! Then 2 min after: 125-94..

This experience left me quite shaky tbh
And it fully explains what i have thought to be anxiety attacks

 

[taniaaust1]

Okay so i just bought a blood pressure monitor, cause my gut feeling just said that when i feel bad it must be related to faulty circulation. Well after standing up, and completely still, my pulse pressure dropped to 24 and i felt like passing out. When i tried some more, i just got error. When i sat down my next reading was 170/113! Then 2 min after: 125-94..

This experience left me quite shaky tbh
And it fully explains what i have thought to be anxiety attacks

That's the kind of things which happen when my BP gets taken.

Most monitors cant handle at all taking readings from me, they error out. I had to buy or try several before I ended up buying like top of the range, very expensive one which can handle what my BP does.

You heart probably went erratic which I find is a big cause of monitors to error (so try checking your pulse with your finger next time its erroring out, you may find beat skipping) and your BP probably went up higher as it usually starts coming down fast once we sit (thou not always).

My BP is now going up to nearly 200 at times after 1 min of standing.. dangerously high (its getting worst and worst with time and with ME decline). I suggest a trial of clonidine to see if it helps stop the BP spikes (which puts you at risk of heart issue). I take a quarter of a tablet but need to raise it up.. it can lower adrenaline without worsening low BP if you also get ditches as most of us do too.

"And it fully explains what i have thought to be anxiety attacks"

Yeah, you are getting nor-adrenaline rushes with this as its that which spikes the BP up with this kind of dysautonomia. The drug I mentioned helps keep BP from spiking by helping stop the adrenaline spiking.

 

[Marky90]

That's the kind of things which happen when my BP gets taken.

Most monitors cant handle at all taking readings from me, they error out. I had to buy or try several before I ended up buying like top of the range, very expensive one which can handle what my BP does.

You heart probably went erratic which I find is a big cause of monitors to error (so try checking your pulse with your finger next time its erroring out, you may find beat skipping) and your BP probably went up higher as it usually starts coming down fast once we sit (thou not always).

My BP is now going up to nearly 200 at times after 1 min of standing.. dangerously high (its getting worst and worst with time and with ME decline). I suggest a trial of clonidine to see if it helps stop the BP spikes (which puts you at risk of heart issue). I take a quarter of a tablet but need to raise it up.. it can lower adrenaline without worsening low BP if you also get ditches as most of us do too.

"And it fully explains what i have thought to be anxiety attacks"

Yeah, you are getting nor-adrenaline rushes with this as its that which spikes the BP up with this kind of dysautonomia. The drug I mentioned helps keep BP from spiking by helping stop the adrenaline spiking.

Wicked. I literally couldnt imagine this finding in my wildest dreams. But it makes perfect sense: My red blood cell amount is elevated, indicating that not enough oxygen is reaching the cells, so the body compensates for this with high blood pressure (probs due to endhothelial dysfunction..)

I will definitiely try some meds for this.

But in that context a question: if the blood pressure spike is the bodys response to dysfunction, wont treating the response be futile?

 

[taniaaust1]

Wicked. I literally couldnt imagine this finding in my wildest dreams. But it makes perfect sense: My red blood cell amount is elevated, indicating that not enough oxygen is reaching the cells, so the body compensates for this with high blood pressure (probs due to endhothelial dysfunction..)

I will definitiely try some meds for this.

But in that context a question: if the blood pressure spike is the bodys response to dysfunction, wont treating the response be futile?

You still need to treat the reason why its doing this eg low blood volume. You could fix the BP hypertension spikes with drugs (badly swinging BP with it high spiking can put you at risk of heart failure) but you will still have issues dizziness, passouts, headaches, brain issues ..whatever symptoms you get due to low blood volume.

Things like adrenaline and nor adrenaline can be tested. Thou I have had one test within range with those (I must of stayed off my feet that day), the rest havent been (often too weird for labs to believe my results, its sad when ME results are being dismissed as the labs cant believe the readings are correct. I used to have the same issue when my BP was being taken, the BP monitors would be blamed!).

I got made to do that nor-adrenaline test over and over, I think it was done 3 times by 2 different labs before their was an acceptable result for them).
.............

The dysautonomia issues in ME/CFS should be far more studied as this is an area which can help prove this illness isnt "psychological" to the world. As far as the othostatic hypertension issue in ME/CFS which I believe affects about 30% of us, I dont think there has even ever been a ME/CFS study done on it. Are those who have this got a much higher death risk???

I think probably. Ive met on dysautonomia sites, two non ME/CFS people with the same kind of BP dysfunction as what I have with the ME but they were healthy in other ways except due to what this BP dysfunction did to them ie both these people told me they had heart failure due to it. (one was in last stage(s) and they were both young.

One in mid? 50s I think other younger (late 30s?).. I cant fully remember now but they werent at all old (one was my age or younger then me at the time, this is years back, Im 43 now) and communicating with these two shocked me.

They both said their heart failure had developed cause they hadnt been able to find a doctor to treat the very high swinging BP so went untreated for many years and then it was too late, hearts were damaged. They were both deeply concerned about me.

Anyway, this is just one high risk ME subgroup which needs good studies done in.

 

[Marky90]

You still need to treat the reason why its doing this eg low blood volume. You could fix the BP hypertension spikes with drugs (badly swinging BP with it high spiking can put you at risk of heart failure) but you will still have issues dizziness, passouts, headaches, brain issues ..whatever symptoms you get due to low blood volume.

Things like adrenaline and nor adrenaline can be tested. Thou I have had one test within range with those (I must of stayed off my feet that day), the rest havent been (often too weird for labs to believe my results, its sad when ME results are being dismissed as the labs cant believe the readings are correct. I used to have the same issue when my BP was being taken, the BP monitors would be blamed!).

I got made to do that nor-adrenaline test over and over, I think it was done 3 times by 2 different labs before their was an acceptable result for them).
.............

The dysautonomia issues in ME/CFS should be far more studied as this is an area which can help prove this illness isnt "psychological" to the world. As far as the othostatic hypertension issue in ME/CFS which I believe affects about 30% of us, I dont think there has even ever been a ME/CFS study done on it. Are those who have this got a much higher death risk???

I think probably. Ive met on dysautonomia sites, two non ME/CFS people with the same kind of BP dysfunction as what I have with the ME but they were healthy in other ways except due to what this BP dysfunction did to them ie both these people told me they had heart failure due to it. (one was in last stage(s) and they were both young.

One in mid? 50s I think other younger (late 30s?).. I cant fully remember now but they werent at all old (one was my age or younger then me at the time, this is years back, Im 43 now) and communicating with these two shocked me.

They both said their heart failure had developed cause they hadnt been able to find a doctor to treat the very high swinging BP so went untreated for many years and then it was too late, hearts were damaged. They were both deeply concerned about me.

Anyway, this is just one high risk ME subgroup which needs good studies done in.

Ok you officially freaked me outP

But i thank you for that, i need to get it tested. I reckon we can dodge dying by meeting the problems with treatment. I checked my heart last year, and it was fine. Now ive been ill for 2 months ish, and ive been lying for the most time, and my BP is fine then. So I dont think it can have done too much damage (plus im only 24..). Ive tested myself a bit more, and the spikes are a bit less drastic than i thought: 130-90. More after exercise probably.

I would also stress that the two dysautonomia-people youre talking about probably have a different underlying pathophysiology. That being said, im aware of ME/CFS suffereres dying of heart complications.

 

[Valentijn]

Yeah, you are getting nor-adrenaline rushes with this as its that which spikes the BP up with this kind of dysautonomia. The drug I mentioned helps keep BP from spiking by helping stop the adrenaline spiking.

With low pulse pressure, I think low noradrenaline is more likely than high ... or do you get the low pulse pressure ever with your high noradrenaline issues?

At any rate, I agree that it could be a good idea for @Marky90 to get blood levels of dopamine, epinephrine, and norepinephrine tested (usually as a catecholamine panel) to see what's going on, since it could give some very good indications for treatments and for what to avoid.

 

[taniaaust1]

With low pulse pressure, I think low noradrenaline is more likely than high ... or do you get the low pulse pressure ever with your high noradrenaline issues?

ummm you making me think as I havent seen a low pulse pressure in my readings for a while (when my BP was low, it occured all the time but when my BP started to swing, it was only there then occassionally). I wonder if back when I was getting that if my noradrenaline was high or not. The things going on in my body change around a lot.

eg I had even one normal adrenaline reading.. 3 so abnormal they were dismissed by different labs as "must be an error" and one they accepted that was high.

My BP issues and POTS are shifting around all the time too. Ive even had my dystolic down to 0 according to a hospital record I recently saw. They couldnt get my dystolic on thier monitor at all! Im crazy BP stuff here. My dystolic readings vary from 0 to 138 .... and my systolic vary from 80 something to 197.

So whether at any moment I get a narrowing of the pulse pressure who knows what my nor adrenaline could be doing.

Its usually thou high noradrenaline which causes high BP spikes in us.

 

[charlie1]

My BP swings from crazy low to plain low alot. I never get high blood pressure yet have had pulse pressures that vary from 7 to 73. (87/80 and 121/48 respectivily). My lowest ever blood pressure was 72/ 44 . I took pics of the recordings to prove it to the endocrinologist and neurologist but the prescribed midodrine caused bradycardia and Mestinon didn't help much to raise the BP (although it did help with the dysautonomia symptoms for a few months.) Preliminary cardiac workup was normal (EKG, Echo) so autonomic dysfunction was blamed. (TTT'ing showed POTS in 2012).

 

[charlie1]

I woke up today with bp 87/50 pulse 64. Now @ 5pm my bp is 115/43 pulse 62. So right now a pp of 72. which has me feeling much better than the low blood pressure feeling (or the time I had pp of 7 .... 87/80)

I have chronic low blood pressure and every once in awhile my systolic will get towards normal but my diastolic will be very low. Anybody know if that's an indication of a certain heart condition (the fact that it's occasional makes me feel better.