hypertension, not hypo

[SOC]

My orthostatic hypotension (not hyper) was immediate upon standing. After a few seconds, I'd normalize. There were also a few times when, after standing still for awhile, I'd start to get nauseous as if I was going to pass out. Simply moving would normalize things.

But it sounds like your system responds by compensating with higher and higher BP and HR to keep supplying your brain - maybe the amount of blood pooling in your legs steadily increases? Do you get steadily increasing edema?

A person who is hanging from a rope attached to a safety belt will pass out rather quickly, simply because they cannot take the pressure of their whole weight being borne by the midsection. So elaborate harnesses were invented instead, in which case the suspended person will pass out after 10-20 minutes or so - because the legs being suspended don't return the blood up through the veins so well. That's true in normal, healthy persons.

No, I don't get edema, but my leg muscles tighten intensely and I can't relax them -- when standing without moving, that is. If I move, the BP/HR still go up, but the muscles don't get so tight. I'm guessing that the tight leg muscles are my body's way of preventing blood pooling and edema. Just a guess, though.

In the early years, I didn't have NHM or POTS to any noticeable degree, but my BP ran low. I also had a few events like you mentioned in your first paragraph. The POTS and orthostatic hypertension developed later -- maybe 7 or 8 years in.

 

[SOC]

If you think subsets, I am more of just totally uncontrollable sleep, severe pain, occasional dizziness and vertigo (no change in blood pressure during spells) and never ending hormone fluctuations. I have never had an episode of POTS or NMH.

How do you know about the hormone fluctuations? Are there tests? I wonder about the dynamics of my endocrine system.

Having NMH and/or POTS or not having them seems to me, from just reading on the forum, as one of the big divides between us. Of course there are plenty of other things, but this stands out to me.

I wonder if that might be a stages of the illness thing. I don't think I had any OI issues in the first 5 years or so. That might just be me, though.

 

[August59]

How do you know about the hormone fluctuations? Are there tests? I wonder about the dynamics of my endocrine system.

Yes - My testosterone and thyroid is checked every 6 months. My cortisol, DHEA and 17 o'progesterone(?) is checked by my intergrative physician usually yearly with saliva test (ASI) from Doctors Data. It is a pretty good test for adrenal function and if you want to check the rthym of your cortisol it has to be saliva. My cortisol is more than likely my sleep problem culprit as my 8am is low and goes up to top of normal range by 12pm and stays there all the way through the 12am, so it must crash somewhere through the night. This of course is exactly opposite of what it is suppose to do.

I wonder if that might be a stages of the illness thing. I don't think I had any OI issues in the first 5 years or so. That might just be me, though.

I'm at my almost 8 year mark now with the disease and so far I have made it to that phase, but yes there is no doubt in my mind about some of the usually less minor phases I run in and out of and the period of time spent in the is completely random.

One of the other subsets I'm in is that since I have been sick with ME/CFS I have not had one single other ailment. No colds, no strep throat, no tonsilitis and no sinus infections. I used to get a fever blister about once per year, but I have not had a one since I came down with this disease. I have never even ran a fever since I became ill

I've had pretty high EBV IgG titres for all three of the antibody phase and moderately high HHV-6 levels. I was negative for CMV and Lyme.

Trying to type in between quotes surely did not work!! Oh well. Live and learn

 

[Sherlock]

One of the other subsets I'm in is that since I have been sick with ME/CFS I have not had one single other ailment. No colds, no strep throat, no tonsilitis and no sinus infections. I used to get a fever blister about once per year, but I have not had a one since I came down with this disease. I have never even ran a fever since I became ill

That's interesting - overly revved up immune system at work.

I haven't had the wiped out, feeling poisoned fatigue ever since I've shifted into the histamine related symptoms - as I type now with burning eyes.

 

[Sherlock]

I'm guessing that the tight leg muscles are my body's way of preventing blood pooling and edema. Just a guess, though.

Sounds exactly right. What's your exercise been like in that time?

 

[SOC]

I'm at my almost 8 year mark now with the disease and so far I have made it to that phase, but yes there is no doubt in my mind about some of the usually less minor phases I run in and out of and the period of time spent in the is completely random.

One of the other subsets I'm in is that since I have been sick with ME/CFS I have not had one single other ailment. No colds, no strep throat, no tonsilitis and no sinus infections. I used to get a fever blister about once per year, but I have not had a one since I came down with this disease. I have never even ran a fever since I became ill

I've had pretty high EBV IgG titres for all three of the antibody phase and moderately high HHV-6 levels. I was negative for CMV and Lyme.

Trying to type in between quotes surely did not work!! Oh well. Live and learn

Sounds like you have a revved up immune system. I wonder if that's a subset or a stage. There's a lot we won't know until we get a lot more research done on this illness.

I was high EBV and HHV-6 and negative for CMV and Lyme, too. I was in the poorly functioning immune stage of my illness before those were diagnosed and treated. FWIW, I had a big improvement (still far from well, though) and daughter went into remission after aggressive treatment for HHV-6 and EBV.

 

[SOC]

Sounds exactly right. What's your exercise been like in that time?

I can't exercise for diddly-squat at the moment. I get over my AT just walking from one room to another in my house. I do have a few lying down exercises I can manage and I'm hoping to improve my anaerobic energy metabolism with some exercise. Aerobic exercise of even the most basic type appears to be out of the question. It's like my aerobic metabolism is almost entirely broken. The whole exercise intolerance thing is driving me bananas now that I don't feel sick all the time.

 

[August59]

No, I don't get edema, but my leg muscles tighten intensely and I can't relax them -- when standing without moving, that is. If I move, the BP/HR still go up, but the muscles don't get so tight. I'm guessing that the tight leg muscles are my body's way of preventing blood pooling and edema. Just a guess, though.

In the early years, I didn't have NHM or POTS to any noticeable degree, but my BP ran low. I also had a few events like you mentioned in your first paragraph. The POTS and orthostatic hypertension developed later -- maybe 7 or 8 years in.

When you mentioned blood pooling, it was kind of like a slap upside the head. One of my very first symptoms (maybe or maybe not) that started occuring, not long after I became sick, was when sitting or standing still for just a short period of time was my feet would turn black or a very deep purple. Heart doctor, Vascular doctor or the Mayo Clinic could not tell me why I was having what they eventually diagnosed as peripheral cyanosis. They "believed" it was from a combination of mild edema and vascular constriction in the capillaries. Every diagnostic test performed was normal, but the thumb impression indicated slow perfussion. I can also tell that there is something going on by just going out to maybe the grocery store and when I get home my and take off shoes my socks are very damp, my feet are very damp and also my feet are very red and hot. It seems to validate that there is low blod flow in the capillaries which is the only way feet can cool when wearing shoes.

 

[taniaaust1]

I've read that ME can be progessive as well. As mine is progressing and as I get slowly worse I wonder if there is any evidence that this progress can halt - or even improve? I have got my head around how things are going and I am mostly at peace with it - but I can't help hoping it doesn't have to be this way.

Possibly it can improve .. maybe it all depends on what damage its done thou??

I thou was completely bedridden for 9mths and housebound for years..and had a complete remission from that for a while.. no glands swelling up, headaches gone, high fevers gone, no post exertional malaise or tiredness (i did a long marathon in my remission).. all my symptoms went away as the ME/CFS got better.

Back then I dont know if I had POTS and autonomic BP issues thou, so may not have had, .. i wonder at what point one would know damage is being done which one couldnt recover from?

(I also recovered from symptom complex in which the ME was looking like parkisons disease.. I dont get constant tremors etc anymore).

So maybe we can all recover from a heck of a lot?? not sure if things like leaky heart valves caused by possibly the ME thou are recoverable ??

 

[taniaaust1]

You probably are aware of the terms hypertensive urgency and hypertensive emergency - relating to BPs over certain levels, and the emergency being distinguished by certain symptoms. E.g., anyone experiencing visual disturbances should get to an ER. Or pain in the head, etc.

I do sometimes get visual disturbances (blurred vision) when I have hypertension episodes. (i also break out in a sweat). I also get a lot of pressure in my head with my OI.

Hard for me to be able to say what would be a hypertensive emergency in my case (seeing my dystolic regularly goes up to 138..that is in the severe hypertension range). I have to sit down or lay down anyway when the BP goes too high as things just get too bad to keep remain standing (i start shaking too). The BP issue fixes when I get of of my feet.

 

[Shell]

Thank you Tania, that's a little ray of hope. I'm not as fussed about my heart valve as it's been leaky and murmering away to itself since I was born.
I can hope that the progress for me will at least stop.fingers crossed.

 

[Sherlock]

when I get home my and take off shoes my socks are very damp, my feet are very damp and also my feet are very red and hot. It seems to validate that there is low blod flow in the capillaries which is the only way feet can cool when wearing shoes.

Hi, August. That sounds to me more like vasodilation of the arteries instead. Now that you metion it, I remember at times my feet getting bright red from a hot shower.

 

[Sherlock]

I do sometimes get visual disturbances (blurred vision) when I have hypertension episodes. (i also break out in a sweat). I also get a lot of pressure in my head with my OI.

Hard for me to be able to say what would be a hypertensive emergency in my case (seeing my dystolic regularly goes up to 138..that is in the severe hypertension range). I have to sit down or lay down anyway when the BP goes too high as things just get too bad to keep remain standing (i start shaking too). The BP issue fixes when I get of of my feet.

Well, very high pressure will damage the smallest vessels first - that's why eyes are mentioned as a classic sign of a crisis. Kidney damage will occur unnoticed. The worst danger is from stroke - super severe headache being a sign of a bleeding stroke, plus the usual stroke signs such as in speech (and often the person themselves thinks they are speaking normally).

If you get a blood pressure reading of 180 or higher on top or 110 or higher on the bottom, and are having any symptoms of possible organ damage (chest pain, shortness of breath, back pain, numbness/weakness, change in vision, difficulty speaking) do not wait to see if your pressure comes down on its own. Seek emergency medical assistance immediately. If you can't access the emergency medical services (EMS), have someone drive you to the hospital right away.

http://www.heart.org/HEARTORG/Condi...re/Hypertensive-Crisis_UCM_301782_Article.jsp

Didn't your doc warn you about that?

IIRC the ER treatment is nitroprusside given IV. They have to be careful not to drop the BP too quickly. But in less critical cases. sublingual nitroglycerin is given. Do you have any on hand? Maybe for a person who is far from a hospital.

The shaking I'd guess is the body's recognition that a very bad thing is happening and subsequent adrenalin release. Have you had a CT to look for accumulated infarcts?

 

[Sherlock]

I have high blood pressure and severe neurally mediated hypotension that can cause major bp crashes.

Offhand, I'd wonder if the NMH is a hard diagnosis, or just one of exclusion given by docs who aren't familiar with the possibility of a histaminergic origin.

On my reading list, a free full text on the related POTS:
http://hyper.ahajournals.org/content/45/3/385.full
"Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders"

A circulating vasodilator could produce reflex sympathetic activation, presenting clinically as “hyperadrenergic” POTS.

 

[alex3619]

Hi Sherlock, what differentiates POTS from NMH, in my understanding under current views, is that POTS has tachycardia to maintain blood pressure, and NMH has bradycardia where blood pressure can just freefall. They might be the same thing, but POTS has an additional mechanism. I don't really understand the science of this - but I don't think anyone one else has. Personally I suspect it stems from a range of vasoactive reactions. In the case of ME I think vasoactive responses in the gut can cause it. If gut blood vessels open up (or indeed if they do anywhere else) beyond a certain amount, it can trigger a sudden lowering of whole body blood pressure. Histamines are only a few of the very large number of chemicals that can be mediating this, but may be critical is some patients. Bye, Alex

 

[SOC]

I've read that ME can be progessive as well. As mine is progressing and as I get slowly worse I wonder if there is any evidence that this progress can halt - or even improve? I have got my head around how things are going and I am mostly at peace with it - but I can't help hoping it doesn't have to be this way.

I think the downward decline can be stopped or significantly slowed with sufficient rest. The difficulty is the amount of rest needed. For example, I was going downhill even though I was resting a lot.... or so I thought. Once I had the exercise test and found out my AT, I realized that I was still spending the vast majority of my day above my AT. My body didn't have a hope of recovering, or even maintaining at the level I was using energy. I had to reduce to about 10% of what I previously doing before I stopped the downwards trend.

I am much better than I was at my worst, although I'm still significantly impaired, and I see the possibility of further improvement. My daughter, who was at the point of having to drop out of college, is now in remission. We are not the only ones who have had some improvement, rather than a continuous decline. But I don't think it happens by itself, it takes careful management and good treatment to get improvement.

 

[taniaaust1]

But it sounds like your system responds by compensating with higher and higher BP and HR to keep supplying your brain - maybe the amount of blood pooling in your legs steadily increases? Do you get steadily increasing edema?

or body compensation by putting out higher and higher nor adrenaline (or adrenaline) to keep increasing the heart rate or BP. (this could cause also a lot of anxiety to happen in a person).

There are tests to see if one has high nonadrenaline eg catecholamine transmitter testing (my 24hr urine levels are often extremely high), so which can give clues to what is going on.

 

[Sherlock]

Hi Sherlock, what differentiates POTS from NMH, in my understanding under current views, is that POTS has tachycardia to maintain blood pressure,

Hi, Alex, I would say that increased rate does not increase pressure, but can increase blood flow volume to try and keep enough oxygen going to the brain. People with POTS apparently don't manage to get their pressure to the brain normalized, so their tachycardia goes on and on. In my particular case, I do get flow to the brain normalized in a few seconds. But in those seconds, I'd almost always get an error from an auto BP monitor.

 

[alex3619]

Hi Sherlock, the reason I say it increases blood pressure is that without tachycardia the bp can crash to zero - no heart activity at all. That happened to me. Bye, Alex

 

[Sherlock]

or body compensation by putting out higher and higher nor adrenaline (or adrenaline) to keep increasing the heart rate or BP. (this could cause also a lot of anxiety to happen in a person).

There are tests to see if one has high nonadrenaline eg catecholamine transmitter testing (my 24hr urine levels are often extremely high), so which can give clues to what is going on.

There is a thread on "what Tx would you get if money were no object". I'd opt instead for unlimited testing, since I've had no tests.

I'm trying to remember if in my worst days of orthostatic hypotension (which weren't recent), if I'd have that sense of alarm or anxiety during spells. I don't think that I did. So while I've always generally been a hot reactor, that seems not true in that particular type of instance. I wonder why.