ME/CFS and HIGH blood pressure

[meadowlark]

Hello all:

I posted a query at the end of another thread [Are these symptoms POTS or just ME] that went unanswered--for the good reason that the thread had wound down by the time I came along with a postscript. But I'd like to repeat the text here, due to a surprising visit to my doctor.

"[I assume I have orthostatic intolerance because] I can't stand or walk for more than three minutes without becoming lightheaded, dizzy, and almost fainting. Lifting my feet is like hauling cement blocks, and I feel like I need to gasp in order to breathe. Going outside alone is certainly not safe.

I've also found that my arms hang very heavy when I am standing .... my hands, like my feet, feel like they weigh a hundred pounds, my wrists ache, and lifting my arms twelve inches in the air (to, say, take a book from a shelf) exacerbates all the symptoms. It's as though my arms feel "faint." Has anyone else felt this in their arms along with other POTS symptoms?

Usually, the arms react after I've trudged around the apartment or stood for a few minutes to wash some dishes. For several days this week, though, I find that after waking (in other words, I've had no exercise for five hours or so, and haven't stood up for even a second), simply holding a book as I sit (tilted) in bed causes the arm symptoms listed above, followed by fatigue throughout my body and the need to gasp. During this, my body feels as though it is swollen up (in fact, there's no swelling) and I have the sensation of being hugely pumped up, like on overinflated balloon. The sensation is a bit as though I would "bang" like a balloon does and disappear if someone pricked me with a pin. I am forced to lie still, with my arms completely limp and my hands holding nothing, for five or six hours to recover.

Does this sort of feeling ring true for anyone? If so, does it sound POTS-related, or is it just completely off the wall?"

These symptoms were very acute for the week after I made this post. On Friday, I saw my doctor, she immediately took my blood pressure, which was at 189/112. Very high, and not what I expected.

Next week I am having the usual EKG and blood tests, but I'm stumped and a little scared. Not that I think I'm going to have a heart attack while I lie here ... but it seems so strange. Other than being forced into a mostly sedentary life for 18 months, I have none of the lifestyle risks for high blood pressure, and my ME/CFS suggests that blood pressure would be normal and drop low, not soar into the danger zone.

Has anyone ever heard of someone with ME/CFS with high blood pressure?

Thanks.

 

[Lynne B]

Hi, Meadowlark, yes, plenty of us have high blood pressure. there are other threads where it's discussed - can't think what they're called at the moment. the key thing is to have a stress echocardiograph - where you're moving at the time. I was all wired up while walking on a treadmill. Mine showed reactive high blood pressure very quickly after starting up. I spent a lot of last summer with swollen feet and legs, sitting with my feet up on something, anything. At night, my heart beat pounded in my right ear - a bit scary. I'm now on a low dose Karvezide (irbesartan 150mg hydrochlorothiazide 12.5mg. That's a diuretic, I think, to reduce the swelling. And I take half a Tenormin (atenolol 50mg) twice a day for the high blood pressure. That works quite well but does nothing for the oxidative stress I get when moving around too much or climbing anything like stairs or a hill. There are very interesting new suggested explanations for that in the research carried out in the new studies by the Drs. Light and Shapiro.
cheers, Lynne B

 

[alex3619]

Hi meadowlark, high blood pressure is not uncommon in ME/CFS but I do think it is rare for those with POTS. It is not that rare if you have OI however. Despite high blood pressure I can still pass out walking up stairs, although it only happens if I have let myself become too exhausted.

In my case I also have borderline haemochromatosis, a high iron disorder. I only have one minor gene for it, but over time it is accumulating and I will have to have it treated. As my iron rises so does my blood pressure. They could be related. Once I correct my iron levels (later this year maybe) I can observe what happens to blood pressure.

My ME/CFS doc routinely sees many patients with high blood pressure. It is not uncommon. It is rarely discussed because POTS is a little more dramatic. From the Light's recent research, it is possible there are two types of ME/CFS - those with POTS and those without POTS, although they showed some overlap which may confuse things. In other words, this may be more about two kinds of responses, and it may be possible to have both kinds at once.

Bye
Alex

 

[taniaaust1]

Hi meadowlark are you a long termer? There are several of us at PR who has high BP issues due to ME/CFS, so maybe a couple of the others will respond too.

This is an area which people need to be far more aware about as even most ME/CFS specialists dont seem to be, as far as high BP goes (Ive actually heard of one ME/CFS specialist saying a person cant have ME/CFS if they have high BP.. he's got it wrong thou!).

You are probably aware that with ME/CFS most have low blood pressure (in fact 86% of us get low BP http://wwcoco.com/cfids/bernesx.html ).

Thing is as all of us know, ME/CFS symptom complex can change and for many of us long termers are presenting differently to what we did in the early years with this illness eg my ME going from being low BP to being very high at times is just one of the changes. This BP shift is usually due to the BP being "dysregulated". This is caused by issues with the sympathetic/ autonomic nervous system.

So you need to work out if you do have true high BP or if its dysregulated BP with it spiking up real high at times. (mine goes up to 156/138 when im upright and on my feet but is low when Im asleep 80/58). 24hr BP monitoring with record being kept on what exactly you are doing each time its high, may be needed to work it out.
........

Im going to disagree with what Alex said (not often do I get to disagree with Alex ). I dont think it is rare with POTS. Those with POTS often have BP issues going on of VARIOUS kinds including some of us with POTS and dysregulated high BP. Those I know on this site, myself included with this rare high BP issue, also do have POTS. (actually i havent yet met anyone at this site who has it who hasnt got the POTS too).
ME/CFS specialist Dr David Bell talks about this kind of BP issue with ME/CFS.

Those who get the high dysregulated BP have an autonomic nervous system issue.. and POTS is an autonomic issue too.

* Many who have this dysregulated BP issue going on are actually unaware they have it. I only found out throu 24hr hoilter monitoring and high BP hardly ever shows up for me when Im sitting down and of cause most doctors take BP when people are laying or sitting, (thou I did go throu a stage where it was slightly up for about 1 year before that symptom shifted to only be very highly spiking at times). Most havent had 24 hr monitoring so could have it and not know. (I get about one BP spike per day)

I dont know if I get it just when Im standing or if i get it when Im moving too. (I was standing still both times this has been picked up extremely high.. I dont know if it also occurs when Im moving thou I assume it must as the raise happened over a couple of hrs with each reading being higher then the last and I couldnt have been standing still that long).

 

[meadowlark]

Many thanks, Lynne and Alex. I had searched the site for high blood pressure and not come up with anything ... but my brains have been fried since I saw the doctor, so possibly I did something wrong in the search. I'm also having a hard time grasping the Light study, and will read it on a brighter day. Next week I'll pass all the info on to my doctor--who is very sympathetic, but knows nothing about this illness.

Thank you both; I was feeling just a little bit panicked and embarrassed by my cluelessness.

 

[alex3619]

Im going to disagree with what Alex said (not often do I get to disagree with Alex ). I dont think it is rare with POTS.

Hi Tania , I think its good we can disagree amicably. Nobody knows everything, and especially for ME or CFS. If we knew it all, we would all be cured. Every day I learn something on PR. You could very well be right about high BP and POTS - it might be more common than I have thought up to now. I have just never heard of many cases, nor heard a specialist or ME/CFS doc talk about it. This might be a good thing to make a poll for, find out how many with POTS or OI or no OI have high low or normal BP, at least on PR. Bye, Alex

 

[meadowlark]

Hi taniaust1: How did I miss your message? I am more tired than I thought.

I'm not as much a longtimer as some. Daily migraines, fevers and sweats that began in 1983 seem to have been the first signs of a slow onset case; I was formally diagnosed in 2000 by the head of the infectious diseases unit at Sunnybrook Hospital in Toronto. At that point, I also had rapid weight loss, PME, vertigo, blackouts, and swollen lymph nodes. Orthostatic intolerance kicked in a few years later, as well as seizures. I was without a computer for years (not by choice) so I got to PR just before the WPI study was published.

My blood pressure is always normal when I arrive and sit in the doctor's office, and drops very slightly if I stand for ten minutes. So I was shocked at this last result, which was taken while sitting. It did occur to me that my BP might be spiking; for the past five or six hours, I haven't felt like a swollen balloon, the swelling in my ankles is gone, and the inner agitation and need to gasp are gone. As for changing symptoms -- yes, I've gone through cycles since 1983, but not in the sense of presenting differently. Rather, it's simply that the symptoms wax and wane (except the [expletive deleted] migraines--they haven't quit for twenty years.) Right before I became mostly bedbound, with all symptoms going full blast (18 months ago) I had a four-month remission.

Somehow I had picked up the impression that when BP is an issue for ME/CFS, it is always low, not high. I hope my reading would have eventually taught me differently. My inability to grasp it all quickly is incredibly frustrating; I used to make my living in publishing, and my skill with words and thoughts was what paid the rent. Now it wouldn't buy me a subway token.

Luckily, since posting, I've been able to find the threads about high BP by using some of the terms used in the replies. So I'll try to learn it "slow but sure."

 

[alex3619]

It did occur to me that my BP might be spiking; for the past five or six hours, I haven't felt like a swollen balloon, the swelling in my ankles is gone, and the inner agitation and need to gasp are gone.

Hi meadowlark, the last two doctors visits my BP was high, despite being on medication. That first time it was very high (not as high as yours, but almost) and my swelling in my feet had disappeared. I had had that swelling for many months.

There was a medical student there when I commented on my swelling who could not find swelling. He then found my BP was high. I think this is connected. If swelling suddenly goes away, then it could mean BP is spiking.

Bye
Alex

 

[Sallysblooms]

You can have high, low or normal BP with POTS. It is mostly about the tachycardia and of course the Autonomic dysfunction. Tachycardia sets us apart. Low BP is separate. Mine was really high when my POTS began. I take Benicar. A lower dose now that it is normal now! YAY!

If you do have POTS be VERY wary of diurectics. I didn't know at first and a doc. tried it, even a TINY dose had me so dizzy and ill, I couldn't move for 10 hours. NEVER again will I take a diuretic.

 

[ahimsa]

Has anyone ever heard of someone with ME/CFS with high blood pressure?

I don't have this problem but I have read about it. Here's one section of a page describing different types of POTS:

Pathophysiology and symptoms

Understanding of POTS pathophysiology remains incomplete. The central finding is upright tachycardia with symptoms of orthostatic intolerance, although hypotension (in children) or hypertension (in adults) as well as resting tachycardia may also be present.

(see - http://emedicine.medscape.com/article/902155-overview#aw2aab6b6 )

I'm not able to give more details (lots of medical jargon on that page) but I think I remember at least one forum member posting here that he/she had POTS and had wild swings in blood pressure. I think there was a newsletter long ago by a ME/CFS doctor (Dr. Cheney? Dr. Bell) that talked about this, too.

Not sure how common it is but it does happen.

 

[taniaaust1]

The online page by Dr David Bell which was the best one on all this, the link hasnt been working for a long time now, so there is only his stuff now online which has just brief mention of high BP in CFS eg http://aboutmecfs.org.violet.arvixe.com/Trt/TrtOIBellTest.aspx
........

OnDr Bells page no longer available, one thing on that which I thought was very interesting was he talked about a ME/CFS patient of his coming into his office with a life threatening high BP reading to which he immediately had him lie down and he gave him right away by IV a bag of saline. As the patient had POTS and with that hypovolemia (low blood volume) and the body gets the high BP spike due to the low blood volume (the high BP is the way the body is trying to fix the low volume issue).. hence his treatment was boost the blood volume with the IV to fix the high BP.

(this would be going against what most doctors would think due to this condition being so not known about).

 

[meadowlark]

Hi Tania: that certainly chimes with my layman's reasoning, as I was wondering if spikes or permanent high BP are the body's way of overcompensating for low blood volume or circulation difficulties. Man, I wish I had a doctor with some ME/CFS knowledge.

 

[taniaaust1]

I came across something new (not specifally article for CFS but one for orthostatic hypertension .. they reacon its cause of blood pooling (I also have high catecholamine level)

"Orthostatic hypotension is commonly encountered and its physiology has been well characterized, but there are few reports of orthostatic hypertension.
In one group of 181 patients with orthostatic hypertension, defined as an orthostatic rise in diastolic BP above 90 mm Hg with supine diastolic BP below 90 mm Hg, 12 were studied; their orthostatic hypertension was related to excessive venous pooling, which resulted in decreased cardiac output followed by an excessive rise in plasma catecholamines, leading to vasoconstriction. " http://hyper.ahajournals.org/content/28/1/42.full "

 

[alex3619]

In one group of 181 patients with orthostatic hypertension, defined as an orthostatic rise in diastolic BP above 90 mm Hg with supine diastolic BP below 90 mm Hg, 12 were studied; their orthostatic hypertension was related to excessive venous pooling, which resulted in decreased cardiac output followed by an excessive rise in plasma catecholamines, leading to vasoconstriction. " http://hyper.ahajournals.org/content/28/1/42.full "

Hi Tania, thank you for this information, its very interesting. Bye, Alex

 

[Wonko]

Very interesting seems that whist I dont quite meet the criteria for POTS (tho I'm very close) I easily meet the proposed criteria for orthostatic hypertension (from the above paper) - now I just have to figure out what to do with this information.

 

[meadowlark]

Wow. I'll be taking all this info to my doctor late Friday.

To those of you who've been having spikes, can I ask how long they last? Several weeks? Several days?

 

[Sallysblooms]

Thankfully, my spikes are not long lasting now. I had high bp constantly for a several years when POTS started, then I got a med that helped and also getting help for POTS was key.

I had a high spike today after getting ready for a hosp. procedure all day before. I had not been able to drink all night. So dehydration, stress and not sleeping as much since I had to go to the hosp. early this morning ALLLLL triggered my POTS and high BP much worse. BP is better now. 114/74, 113 heart rate...

 

[August59]

Mine is quite often in the 160/110 range, but majority of the time it is 145/95.

 

[meadowlark]

Mine was 189/112 last Friday, and I was feeling extremely peculiar that day in exactly the same way I had for the previous week. Since the symptoms have decreased very gradually since then, I'm assuming my bp stayed in that very high zone for almost two weeks. (A lot of assumptions, I grant you.) But spiking as high as I did, even for one day, seems unusual for someone not having a heart attack. Today is the first day I've felt close to "normal" -- or rather, "normal" for ME/CFS--and have no swelling. I see the doctor again tomorrow, and I'm pretty sure that meds and a home blood pressure machine lie in my future.

Thank you, everyone, for all the information.

 

[Sallysblooms]

Do you have a bp monitor Meadowlark?