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OI with high BP?

Sidereal

Senior Member
Messages
4,856
When my ME was at its worst a few years ago, I frequently experienced such episodes of autonomic instability. I went to the ER three times in the space of six months but gave up after that because no diagnosis or treatment was ever offered. No one even figured out I had POTS even though my pulse would be normal while lying down and then shoot up immediately when I sat up in hospital bed. Pheochromocytoma was ruled out but that's it, you're on your own. At least they didn't try to tell me I was having a panic attack. I suppose I should be thankful for small mercies. :rolleyes:

During those severe years my usual BP was 80/60, pulse 80-ish when lying down and 140-160 when standing, depending on time of day. On top of this I would get these adrenergic storms some of you have described where my BP would suddenly go up by 100 points to like 180/110 and stay there for a few hours. I used a beta blocker for a year to deal with this but of course it worsened my regular BP and took away what little energy and functionality I had. I stopped it eventually as my ME improved and these episodes have not returned.

I think in my case it was a combination of overexertion and an enteroviral infection that was causing these wild autonomic problems. At the time I was in denial about my true level of functioning and still trying to do things around the house when in actuality I was bedridden and this trivial activity was keeping me in permanent PEM.

These days my BP hovers around 90/60-110/70. When I stand my diastolic rises and pulse pressure narrows. I have hypovolemia and POTS. I don't take any meds.
 

Forbin

Senior Member
Messages
966
It appears that there is is evidence that persistent viral infection can cause hypertension.

There was a 2009 study out of Beth Israel Deaconess Medical Center at Harvard Medical School that showed that cytomegalovirus (CMV) infection was a potential cause of hypertension. These findings were initially made in mice. http://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1000427

In 2012, a relationship between high CMV antibody titers and hypertension was found in men aged 24-39.
"This association supports the hypothesis that common CMV infection and/or an immune response to CMV may lead to impaired vascular function at a young age."
http://www.ncbi.nlm.nih.gov/pubmed/22236008

This from the Harvard Gazette...
“Viruses have the ability to turn on human genes, and in this case, the CMV virus is enhancing expression of renin, an enzyme directly involved in causing high blood pressure,” says Crumpacker [author of the 2009 paper].
. . .
In their final experiments, the researchers demonstrated that the protein angiotensin 11 was also increased in response to infection with CMV. “Increased expression of both renin and angiotensin 11 are important factors in hypertension in humans,” says Crumpacker. “What our study seems to indicate is that a persistent viral infection in the vessels’ endothelial cells is leading to increased expression of inflammatory cytokines, rennin, and angiotensin 11, which are leading to increased blood pressure.”
http://news.harvard.edu/gazette/story/2009/05/common-virus-could-cause-high-blood-pressure//
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
High blood pressure with OI and ME is fairly common. OI is about loss of bp control, and a decline in bp. In POTS this is compensated for by rapidly rising pulse rate. Other OI patients have other responses, which can include bradycardia (the opposite of tachycardia).

I have high blood pressure and OI. When rested my high bp seems to prevent severe OI episodes, but when exhausted I can pass out on standing or walking up more than about three steps.

In a number of places recently we have debated on what to use to treat high bp in ME. Its not as easy as most because of our abnormal vascular regulation and low blood volume. We are also often mineral depleted. So ACE inhibitors and diuretics may be problematic. That leaves, I think, calcium channel blockers and nitro drugs.

I have never investigated orthostatic hypertension.

My beta blocker nebivolol seems to be working quite well, and well tolerated. My resting pulse is rather low on it (sometimes as low as 54-55), diastolic pressure is well-controlled, systolic more variable - sometimes still high.

I don't have obvious OI or POTS - just very occasional lightheadness or dizziness, which isn't problematic.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
I wondered if anyone else is experiencing malignant hypertension after many years of hypotension as a result of ME

In 2007 I experienced a hypertensive crisis and an ice-pick headache. It literally felt like an ice pick jammed into my left temple - over and over - for two days. At the time I had recently given up full time work. The doctor had prescribed Cymbalta only a few weeks before the crisis. I asked the doctor is Cymbalta could cause the severe reaction. He insisted Cymbalta could not cause this, but when I checked the literature, it is reported as a supposedly "rare" reaction. I immediately cut way back on the Cymbalta and the ice-pick headache quit, in spite of the doctor's pronouncements.

Your story is shocking and disturbing. I fail to understand how so many medical personnel can be so callous and cruel when a person is in such obvious severe distress.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Your story is shocking and disturbing. I fail to understand how so many medical personnel can be so callous and cruel when a person is in such obvious severe distress.

They just don't believe ME exists and they automatically dismiss the patient with contempt even when they develop a new condition. I frankly never want to be admitted to hospital again. One person I know with ME who attends the hospital told me that her consultant confided in her that he does believe the illness is genuine, but dares not let his colleagues know that he considers it to be a physical condition as he would lose their respect. He said he attempts to surreptitiously protect patients from the harm imposed on them by his colleagues.
 
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jimells

Senior Member
Messages
2,009
Location
northern Maine
“Viruses have the ability to turn on human genes, and in this case, the CMV virus is enhancing expression of renin, an enzyme directly involved in causing high blood pressure,” says Crumpacker [author of the 2009 paper].

Well, we'll definitely have to keep this under wraps. We can't be treating patients for a few months with antivirals when we could be selling them anti-hypertensives for the rest of their miserable lives...
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
They just don't believe ME exists and they automatically dismiss the patient with contempt even when they develop a new condition. I frankly never want to be admitted to hospital again. One person I know with ME who attends the hospital told me that her consultant confided in her that he does believe the illness is genuine, but dares not let his colleagues know that he considers it to be a physical condition as he would lost their respect. He said he attempts to surreptitiously protect patients from the harm imposed on them by his colleagues.

After my hospital admission with severe hyponatraemia, which turns out to be almost-certainly an ACE inhibitor side-effect, and was repeatedly dismissed (even sent home initially, having to be rushed back the same day), repeatedly falsely accused, and given inappropriate treatment, I asked my friends never to take me to hospital again.

Then, after discharge, suffering continuing dismissal, accusations, insult, cessation of an essential prescription without warning, discussion or explanation, false statements about my medical records, and rudeness, from GPs, I was left with no choice but to switch to another practice further away - despite having no car.

The current one is better - at least he listens, and acknowledges that I don't really want to be there (some GPs seem to think you just go to see them because you have nothing better to do). Could still be a lot better, and I avoid referring to ME.
 
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jimells

Senior Member
Messages
2,009
Location
northern Maine
One person I know with ME who attends the hospital told me that her consultant confided in her that he does believe the illness is genuine, but dares not let his colleagues know that he considers it to be a physical condition as he would lost their respect. He said he attempts to surreptitiously protect patients from the harm imposed on them by his colleagues.

What a coward!
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
After my hospital admission with severe hyponatraemia, which turns out to be almost-certainly to an ACE inhibitor, and was repeatedly dismissed (even sent home initially, having to be rushed back the same day), repeatedly falsely accused, and given inappropriate treatment, I asked my friends never to take me to hospital again.

Then, after discharge, suffering continuing dismissal, accusations, insult, cessation of an essential prescription without warning, discussion or explanation, false statements about my medical records, and rudeness, from GPs, I was left with no choice but to switch to another practice further away - despite having no car.

The current one is better - at least he listens, and acknowledges that I don't really want to be there (some GPs seem to think you just go to see them because you have nothing better to do). Could still be a lot better, and I avoid referring to ME.


We live close to each other, so our doctors breathe the same air and probably attend the same post grad programmes. I am sorry that you have been treated so disgracefully, but your story is so familiar. We could actually be discussing the same hospital.;) You are one side of the Tamar, and I am the other, so maybe not.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
We live close to each other, so our doctors breathe the same air and probably attend the same post grad programmes. I am sorry that you have been treated so disgracefully, but your story is so familiar. We could actually be discussing the same hospital.;) You are one side of the Tamar, and I am the other, so maybe not.

It might be the same hospital...
 

Debbie23

Senior Member
Messages
137
I've never had a tilt table test done, never been offered and given that it can apparently promote a crash in some patients I'm not sure I want to ask for one but I've been trying to do the 'poor man's version' at home. It's difficult because I can barely stand at all as a severe patient but I do notice that even standing for a minute, my maximum limit of tolerance for standing, that after testing again my BP goes up. I wondered if this is OI in my case? I fit the symptoms elsewhere, get dizzy when I stand etc. and this goes back way before I was in wheelchair and bed bound. Sorry to post here, I didn't want to start a new thread for this because it seems to fit here, I was just curious to see if anyone thought this looks like OI based on my readings, I'm pretty sure I've got that because the symptoms fit, but curious to see what other people think about my BP readings.

Today sat upright in bed 127/64 pulse 91

Standing for a minute my maximum before I need to Sit down 148/88 pulse 87, monitor also gave me the arrhythmia warning, I think that's the right term, apologies if not!

The rest are taken from the last few months. supine for ten minutes in bed or sat quietly propped up in bed the second are taken after standing for my absolute limit around a minute give or take.

Supine;

119/79 pulse 103

Standing for a minute;

151/94 pulse 108

Supine:

126/81 pulse 84

Standing for a minute;
151/73 pulse 113

Sitting

124/69 pulse 80

Standing 153/75 pulse 93
 
Messages
15,786
@Debbie23 - Very weird. Your heart rate goes up a bit, but so does your blood pressure and pulse pressure, which should be a pretty healthy and normal response. Maybe you're one of the high norepinephrine types ... have you ever had blood catecholamines tested?

A supine heart rate of 103 is worrisome, but at other times it's 84. Were you laying in different positions - on your side versus your back, or a different side, or tilted at a different angle? I have a "good" side where my heart rate and oxygen saturation are normal, but oxygen drops and heart rate rises if I'm on my other side or my back or my stomach, or if I sit up and lean back at all.
 

Debbie23

Senior Member
Messages
137
@Debbie23 - Very weird. Your heart rate goes up a bit, but so does your blood pressure and pulse pressure, which should be a pretty healthy and normal response. Maybe you're one of the high norepinephrine types ... have you ever had blood catecholamines tested?

A supine heart rate of 103 is worrisome, but at other times it's 84. Were you laying in different positions - on your side versus your back, or a different side, or tilted at a different angle? I have a "good" side where my heart rate and oxygen saturation are normal, but oxygen drops and heart rate rises if I'm on my other side or my back or my stomach, or if I sit up and lean back at all.
No, just laying down. I used to get pounding heart beat and surging heart rate when laying flat. I had to sleep propped up a bit because my heart was just thumping and thumping and feeling like it was fluttering. For some reason at the minute that's a lot better right now.

Those reading were at a time when I was forced to exert a bit more when I was having higher pulse but I have noticed that my pulse tends to be quite fast, especially if I've had a bigger day like needing to transfer a lot more, my pulse and BP tend to stay higher and elevated. That equation for AT puts me at around 115bpm puts me at or around that and I've noticed I'm often not far off it even when all I've done is transfer etc. I'm on propranolol and I've noticed I get a lot less palpitations, racing pounding heart etc. When I actually remember to take it, so maybe that helps! Like now it's 119/80 and 85 bpm at upright in bed. And that's after having coffee which I think elevate both. So I'm wondering if my higher heart rate at that time, even when laying supine was to due to being more active overall. Various life events had happened that were unavoidable, not unpleasant just unavoidable, which meant pacing went right out the window.

I can however remember struggling to stand upright, getting dizzy. Needing to lean on the wall at school, I used to get palpations and pass out at school with 'heart attack pains' chest pain, arms going dead etc. I also couldn't stand upright following being in a hot bath and needing to lay on the floor of the bathroom before I could actually manage to move to get dry and dressed, while my heart pounded etc. before I became bedbound so I don't think it's caused by being bedbound. Ive never been tested in that way so it may be worth pursuing that. I get the impression froM my experiments that if I were able to stand longer my BP and pulse would continue to climb. Even now I get the breathlessness, suddenly intense headache and pallor if I've been forced to move to quickly or to often in a short time.

I can also remember when I needed to transfer a lot in a very short space of time my gp chose that moment to test my BP. She didn't tell me what the numbers were but she was visibly shocked and said it was 'off the scale'. I also used to go, and still go clammy sometimes when needing to transfer a lot and if I've had a big day after being in my wheelchair the car etc. and then transfer back to bed I start trembling violently and can't stop for sometime, getting my legs up helps as well. A lot of the symptoms fit for OI on the surface I just didn't see how it works with my BP readings in practice. It seems more like orthostatic hypertension but I dint know enough to be sure.

Thanks for the reply!
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
I found this old thread on Google when trying to find help. So here I am again! So just for the record, in case this doesn't pan out well for me..............the .next few days are a tad risky I am told.

I was interested to read my old posts as I had forgotten about them.

Here is my update:

After two weeks indoors feeling too unwell to do much, I decided that I should ignore how I felt as the sun was shining and I thought a short walk was a good idea. It would give me chance to soak up some vitamin D too.

Now I live in the semi-sticks so I thought it would be pleasant to hop into a field and walk towards the next country lane which wouldn't be far. I had only walked a short distance into the field and was becoming the focus of attention of a number of ewes when I experienced a sudden sharp pain in my chest. It felt like 'stitch' but I have never had it to the left of my sternum before. I thought if I just breathed very shallowly and walked on it would, like most things, just come to pass. Well, it didn't. Fortunately, I decided that I had better turn round and, passing the inquisitive sheep, I headed back across the field towards the lane that takes me home. My legs started to give way, I became cold and very clammy, felt nauseous and very light headed. The pain continued. Then it was obvious what had happened: some wretch had sucked the oxygen out of the air. I felt rather ill and I had to inch my way along a low wall towards my home. I really didn't think I was going to make it and was nearly at the point of having to lie on the pavement and crawl home. Not fun!

After about 18 hours on the sofa, I felt no better. By mid afternoon I was in an ambulance (much against my will) and on my way to A&E and was fortunate to be followed by a distant neighbour in her car. I was seen quickly, the staff were lovely and I was wired up to the mains from every available section of my body with all dignity stripped from me, had a lot of blood sucked out and my heart X-rayed.. All was going well..sort of............when my neighbour who was sitting beside my bed said to the doctor..............'she's got ME you know' Clang! The doctor advised me to keep quiet about it and said although it didn't exist and was just a name for a mental health problem, his colleagues would be less kind about it than he would be. He even apologised to me about their attitude. He then asked me how I came to be given such a ridiculous :confused: diagnosis. I explained to him I had been given it when admitted to a nursing home and gave him my typical ME symptoms. He looked surprised and said I had been misdiagnosed. I understand that I should never have been given that label as I have obviously have a 'real' illness.:ill: Oh, and ME doesn't cause BP problems, just depression. He was so nice about it and I wasn't at the top of my bounce so couldn't really discuss it, but did my best to enlighten him to some extent. I wasn't going to completely sink without trace and was determined to wave our flag to the bitter end.

Anyway, the chest pain unfortunately is cardiac in origin. The verdict is that malignant hypertension and the rapid hikes in BP especially when on my feet and the tachycardia has proven too much for the heart and it is now in a poorly state. Many hours later my BP was finally down to 200/100 thank goodness. However, I do feel decidedly unwell, cannot walk many feet across the room and am too breathless to talk for more than a few minutes.

The moral of the tale is that this episode followed taking a double dose of ramipril on my doctor's instructions. I then recall that something similar happened before when I increased the dose, but it wasn't as bad as this by a long way.

Prof Pinching warned me before he retired that to take BP medications might only serve to exacerbate the rapid and damaging BP hikes as it is caused , in his words as far as I can recall, by an over-compensatory reaction. It looks as though he might be right.

I have just ordered some Mukta Varti and hope that will do the trick, even if it does remind me of dried elephant's dung.

Must crash again...................:)
 
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Chrisb

Senior Member
Messages
1,051
@Countrygirl

Sorry to hear of your recent experience and hoping you make a speedy recovery.

Your experience with the Ramipril does not surprise. I took myself off it after a short while, to the disapproval of my doctor, fearing some cardiac event.

At least it sounds as though you are in better hands this time.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Prof Pinching warned me before he retired that to take BP medications might only serve to exacerbate the rapid and damaging BP hikes as it is caused , in his words as far as I can recall, by an over-compensatory reaction. It looks as though he might be right.

I have just ordered some Mukta Varti and hope that will do the trick, even if it does remind me of dried elephant's dung.

Must crash again...................:)
Where did you order it from? I am not getting much benefit yet from my third BP medication, and would rather take something natural. Let us know how you get on. I'm very sorry to hear of your bad experiences.