Poll on blood pressure

[MeSci]

Keeping this as simple as possible, but discussion would be welcome.

 

[Sushi]

@MeSci
Simple is good, but may miss some key factors. Like those whose blood pressure is normal when lying or sitting but drops significantly when standing.

Sushi

 

[Countrygirl]

I don't know if other long-timers have experienced a change in the pattern of their blood pressure. For about 30 years of ME my BP was very low. Sometimes I could not even sit up in bed without blacking out and my BP would read about 60/50. Then suddenly the pattern changed and it shot up and I now have quite severe hypertension with readings sometimes of about 225/120 plus.

Three times when it has shot up rapidly I have experienced stroke-like attacks that have resulted in my admittance to hospital followed by three months severe ME relapse. These attacks have caused some permanent damage.

I do recall reading about two years ago that some Australian research suggested that the illness impacts on our brain's ability to respond to and control sudden increases in BP.

At the same time that my BP changed from very low to very high I....................now how I can I phrase this in a ladylike way??? ..................................okay...........I can't..........I stopped ........er.......peeing for England, which had been a constant feature of the illness. I guess by retaining fluid my blood volume increased and my BP shot skyward. Is this a common feature of long-term ME?

C.G.

 

[MeSci]

@MeSci
Simple is good, but may miss some key factors. Like those whose blood pressure is normal when lying or sitting but drops significantly when standing.

Sushi

Yeah, I know. I'm tired at the moment so couldn't think clearly enough to figure out other options to list.

 

[MeSci]

I don't know if other long-timers have experienced a change in the pattern of their blood pressure. For about 30 years of ME my BP was very low. Sometimes I could not even sit up in bed without blacking out and my BP would read about 60/50. Then suddenly the pattern changed and it shot up and I now have quite severe hypertension with readings sometimes of about 225/120 plus.

Yikes! That's even higher than mine was found to be from a routine check (I'd gone to the GP for dermatitis). Mine was about 200/100.

Three times when it has shot up rapidly I have experienced stroke-like attacks that have resulted in my admittance to hospital followed by three months severe ME relapse. These attacks have caused some permanent damage.

I do recall reading about two years ago that some Australian research suggested that the illness impacts on our brain's ability to respond to and control sudden increases in BP.

At the same time that my BP changed from very low to very high I....................now I can I phrase this in a ladylike way??? ..................................okay...........I can't..........I stopped ........er.......peeing for England, which had been a constant feature of the illness. I guess by retaining fluid my blood volume increased and my BP shot skyward. Is this a common feature of long-term ME?

C.G.

I'm still peeing for...Cornwall? But my BP is still highish. It varies a lot but seems generally better overall (I am on ACE inhibitors). Although I have had a couple of brief periods of having normal BP without my meds - I think for about a month first time, more like a day the second time.

One thing that is absurdly high is pulse pressure (the difference between systole and diastole).

 

[nells49]

@MeSci
Simple is good, but may miss some key factors. Like those whose blood pressure is normal when lying or sitting but drops significantly when standing.

Sushi

Good point thanks.

 

[Leopardtail]

Keeping this as simple as possible, but discussion would be welcome.

I have 'low normal' when my blood pressure should be raised coupled with OI. Answered as 'hypotension'

 

[Little Bluestem]

Well, I guess I don't know. Maybe I should monitor it for a while.

I was going to put 'normal'. It was fairly normal when I monitored it for over a month, over a year ago. I just now took it and it is 92/72.

It was low most of my life, as was my Mother's. I did not experience any hypotension symptoms until I got ME. I was definitely having low blood volume problems for a while. I thought I had that under control now. Maybe I am just back to my 'normal' low blood pressure.

 

[MeSci]

I'm still peeing for...Cornwall? But my BP is still highish. It varies a lot but seems generally better overall (I am on ACE inhibitors). Although I have had a couple of brief periods of having normal BP without my meds - I think for about a month first time, more like a day the second time.

Replying to myself - I was also polyuric before high BP was diagnosed, I think.

So I think my high BP is more likely due to autonomic/neuromuscular factors than to blood volume, and maybe due to electrolyte deficiency caused by electrolyte loss in urine (solute diuresis). This can cause muscles to contract excessively, including those in blood vessel walls. This paper appears relevant, especially in light of many people reporting low magnesium levels and/or improvement on taking magnesium.

Here's an extract (ignore the odd spellings of 'concentration' - I think this is the Spanish spelling):

A reduction in the extracellular Mg++ concentracion can produce hypertension

Alterations in extracellular K+ or Na+ concentracions over physiological ranges, in the face of a Mg++ deficit, can exacerbate the coronary vasospasm noted with reduction in only extracellular Mg++.

 

[MeSci]

I'm starting to wonder whether the hypo/hyper dichotomy could be an indicator of subgroups?

 

[Valentijn]

I was going to put 'normal'. It was fairly normal when I monitored it for over a month, over a year ago. I just now took it and it is 92/72

That's a very low pulse pressure. It's possible that even when your systolic and diastolic values each look fairly normal, they are actually too close together. It basically causes the same symptoms as hypotension.

I don't have hypotension, but I do have low pulse pressure. So I selected the "hypotension" option

 

[golden]

^^^ oh. Last time i checked some time ago now i had low pulse pressure sometimes as low as 8.

It also depends on whether i am lying down or standing up.

 

[Little Bluestem]

I decided to check my blood pressure the next morning. It was normal (115/67).

The pajama top I was wearing was thicker then the shirt I had been wearing the night before. I wondered if I had tightened the cuff more to compensate for that. I took it again with the cuff looser and it was low (97/70).

I did it tighter again and it was similar to the first (113/71). So then I really tightened the cuff and it was higher (128/68). It appears that how tight the cuff is effects the systolic reading.

 

[DeGenesis]

I have hypertension... and OI at the same time.

 

[ukxmrv]

I don't know if other long-timers have experienced a change in the pattern of their blood pressure.

I guess by retaining fluid my blood volume increased and my BP shot skyward. Is this a common feature of long-term ME?

C.G.

Not for me, C.G.

30 years later my resting BP is still very low and I am still peeing for England sadly. The water retention has been a feature all through this for me. If I drink a lot of fluid my stomach swishes as I walk and my body swells up. So I've got both the water retention and the peeing.

What used to happen though in the first 20 years was that it varied with hormones and there would be times each month when the peeing increased and I would lose weight for a few days as some of the water went. That happens less and less now.

I have POTs but my resting BP is still very low.

 

[taniaaust1]

@MeSci
Simple is good, but may miss some key factors. Like those whose blood pressure is normal when lying or sitting but drops significantly when standing.

Sushi

Unfortuantely as Sushi points out, there are those of us here who do not fit this survey to be able to answer it. eg In my case. At night when asleep.. I have low BP or normal. When Im just laying and not asleep, my BP is normal. When Im upright standing or doing things standing.. I have hypertension. Sitting for me varies between normal and having hypertension depending on how long Ive been sitting for.

I dont have a commonest or closest, its just extremely variable.

 

[taniaaust1]

I don't know if other long-timers have experienced a change in the pattern of their blood pressure. For about 30 years of ME my BP was very low. Sometimes I could not even sit up in bed without blacking out and my BP would read about 60/50. Then suddenly the pattern changed and it shot up and I now have quite severe hypertension with readings sometimes of about 225/120 plus.

Three times when it has shot up rapidly I have experienced stroke-like attacks that have resulted in my admittance to hospital followed by three months severe ME relapse. These attacks have caused some permanent damage.

I do recall reading about two years ago that some Australian research suggested that the illness impacts on our brain's ability to respond to and control sudden increases in BP.

At the same time that my BP changed from very low to very high I....................now how I can I phrase this in a ladylike way??? ..................................okay...........I can't..........I stopped ........er.......peeing for England, which had been a constant feature of the illness. I guess by retaining fluid my blood volume increased and my BP shot skyward. Is this a common feature of long-term ME?

C.G.

Hi C.G. Our ME is alike in this way. I had low BP too all my life and also during my early ME years eg 80/60 or 80/55 was my normal BP.. if I got up too quick, I'd fall over.

This thou changed after I'd had this illness for 10 years or so and now I get high BP when upright. Recently at the hospital in one minute of standing it was up over 190 (I had to sit at that point, it would of gone up higher if I'd keep standing).

I went throu a stage in between these two things of where my BP was up all the time when upright with my dystolic commonly at near 100. (my dystolic can get up to 136 eg 170/136)

scary hearing about your strokes. Im think Im getting close to having those at times (esp since I also have MTHFR mutation so puts me more at risk).

I havent noticed this kind of BP issue in those who havent had the illness so long eg those who have had it less then 8-10 years. So I suspect its a later stage thing.

 

[taniaaust1]

I'm starting to wonder whether the hypo/hyper dichotomy could be an indicator of subgroups?

Ive been both. I think its more common the hypo during earlier ME years and the hyper for the long termers.

 

[taniaaust1]

I decided to check my blood pressure the next morning. It was normal (115/67).

The pajama top I was wearing was thicker then the shirt I had been wearing the night before. I wondered if I had tightened the cuff more to compensate for that. I took it again with the cuff looser and it was low (97/70).

I did it tighter again and it was similar to the first (113/71). So then I really tightened the cuff and it was higher (128/68). It appears that how tight the cuff is effects the systolic reading.

Yeah, how tight one has cuff does affect BP readings and one needs to make sure one is putting it on correctly for correct readings. Its why I hate it when some nurses do it who dont seem to realise when they have a cuff on too loose, Ive had some use too big cuffs to the point its almost falling off!, my arm is the smaller size, wrong cuff size can lead to wrong readings too. . It shouldnt be loose, it shouldnt be tight (it should be firm/snug). If you arent sure how it should be, get your pharmacy to show you.

Also you are supposed to wait a couple of minutes after doing a reading to allow your vessels to get back to normal state before doing another reading.

I saw one study which showed many nurses take patients BP wrong. (I was shocked at how many).

 

[MeSci]

I decided to check my blood pressure the next morning. It was normal (115/67).

The pajama top I was wearing was thicker then the shirt I had been wearing the night before. I wondered if I had tightened the cuff more to compensate for that. I took it again with the cuff looser and it was low (97/70).

I did it tighter again and it was similar to the first (113/71). So then I really tightened the cuff and it was higher (128/68). It appears that how tight the cuff is effects the systolic reading.

My wrist monitor (which calibrates well with the arm one that the docs use) tightens itself so presumably has a set tightness. It always feels about the same.

I cannot forget a hospital nurse pretending to take my bp with an uninflated cuff. (I have read that it is not uncommon for staff to make up bp readings, maybe to save time or because their monitor isn't working. I definitely had the latter happen with a paramedic, as they had put 2 bp readings on their report but their monitor hadn't been working: "Dead", as one of them had said, and he didn't mean me. )

But this nurse spent several minutes faffing about with her monitor before writing down a reading, despite my telling her that it was loose.