ME/CFS and HIGH blood pressure

[Valentijn]

Your heart rate is rising by 30-40 bpm when standing, so it looks like POTS is likely. It looks like the rise is more extreme when you've been standing longer.

At one point (07:30 PM 113/88 95 standing, making supper), your blood pressure is lower than at any other time except one, and your pulse pressure (difference between systolic and diastolic) has narrowed to 25. Pulse pressure is abnormally low if it's less than 25% of the systolic value, therefore yours should have been over 28. You're also a bit low after your walk to the mailbox. So Neurally Mediated Hypotension also seems possible.

NMH is most noticeable after standing upright and very still (not shifting or fidgeting) for 10+ minutes prior to checking your BP. If your BP monitor gives an error message at that point and you aren't moving at all, it's probably because your pulse pressure is too weak for the monitor to detect your pulse consistently. Mine craps out at about 18-20 pulse pressure.

 

[jimells]

Valentijn, thanks for the analysis. I've been trying to get a tilt table for two years. I never really suspected NMH before.

I took readings most of the night, since I couldn't sleep until 2 AM then woke up with a migraine at 5:30 AM. At night there were a number of readings around 115/75 HR 55. To my limited understanding, this doesn't seem consistent with hypertension. I've read a number of times that the highest BP is supposed to be around 6 AM. At that time I measured 112/73 HR 61.

I have noticed low pulse pressure pretty often, and sometimes the machine shows an error, which I have always wondered about. Now I know. Thanks.

I've decided to try the atenolol at 1/4 the prescribed dosage, since there seems to be support for the idea that it might help POTS and migraines. This is the 3rd beta blocker I've been prescribed over the years. If I can't tolerate this one, maybe they will figure out I need to try something different??

Maybe these readings will prod the doctor into taking my problems seriously, at least to the point of ordering 'official' readings from an automatic monitor.

 

[Valentijn]

Maybe these readings will prod the doctor into taking my problems seriously, at least to the point of ordering 'official' readings from an automatic monitor.

Unless the doc is a cardiologist, be prepared for him/her to have no idea about POTS or NMH. A lot of docs seem to think that the only blood pressure problems involve hypertension Might not hurt to print out the CDC or NIH pages explaining the diagnostic criteria for them.

http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm
http://www.nhlbi.nih.gov/health/health-topics/topics/hyp/causes.html

Unfortunately I can't find anything from the CDC or NIH mentioning narrow pulse pressure, but at least the above link mentions blood pressure dropping. It just doesn't specify that the systolic is dropping while the diastolic stays the same, thereby narrowing the pulse pressure.

 

[ahimsa]

Link to the Johns Hopkins document on Orthostatic Intolerance

Hi jimells,

Here's a link to another document, by Dr. Rowe from Johns Hopkins University, describing Orthostatic Intolerance (includes POTS and NMH):

http://www.cfids.org/webinar/cfsinfo2010.pdf (PDF file)

I've posted this on other threads before but haven't seen it posted on this thread. This document does not address high or spiking blood pressure (which is how this thread started) or the different types of POTS. However, it might answer some of your questions. For example, it talks about the issues with blood pooling (blood not getting to the right places, as you said in your post). And it discusses some of the prescriptions that are used to treat this (e.g., beta blockers such as atenolol).

As others have mentioned, it's unlikely that any doctor you visit will know anything about Orthostatic Intolerance (OI). I saw two different specialists during the last couple of years (sleep specialist and a GI specialist). Both of them had not only had never heard of OI but also neither of them even glanced at this handout when I gave them a copy (and I only printed out the first 10-11 pages, not the longer appendix parts).

Even my cardiologist, who does know about OI, and who has been treating me for NMH since 1995, admits that his knowledge is limited and that he does not specialize in this field (autonomic dysfunction). Most of his patients have completely different problems. In fact, I'll bet I'm the only patient he has with OI.

OI is very complex and can be difficult to treat. One patient may do really well with a combination of drugs along with extra salt/water intake while another may see no improvement at all, or have side effects from the drugs. And doctors are still trying to figure out all the different types of OI and agree on terminology.

I do wish you the best of luck! I hope you find something, even if it is only avoiding those activities which aggravate your symptoms, that helps you.

 

[jimells]

I've been on the atenolol a few days now. The first day I took 1/4 the prescribed dose, or about 6 mgs. A few hours later I couldn't stay awake, felt pretty bad. My BP was 89/68, that's hypertension?

I called the pharmacist to see if they have anything smaller than 25 mg, they don't. The pharmacist said maybe I should call the Emergency Room. Will they actually talk to people on the phone? Seems unlikely. In the old days I would've called the doctor's office, the answering service would've picked up, and the doctor would've called back in a few minutes. But that was the old days.

Anyway, the 25 mg pill is tiny, but I managed to split it in quarters, then into eighths.
The tiny dose seems to be helping me some. Sometimes I can work in the kitchen and my pulse stays in the 70's, so that's a step in the right direction.

 

[taniaaust1]

sallysblooms, love the tiara!

My pulse is all over the place, especially on a day like today, recovering from doctor-induced PEM. I have had a BP monitor for years, and recently bought a HR monitor. It's a very cool device. I have the alarm set for 50 and 90. Sometimes the pulse goes below 50 supine. On days like yesterday and today I can't even roll over on the couch without the alarm going off. On a few occasions the pulse will go from 55 supine to 105 standing, instantly, for a brief time.

I've a sporadic BP/pulse log going back to 2005, about the time I first started getting really sick. I show it to all the doctors, who studiously ignore it. Since I'm fighting with the new doc over whether I have hypertension or not, I did some research and found out about 24 hr automatic BP monitors. A great idea, even I would accept whatever might come out of the machine. Of course, that would mean more fighting with the gatekeepers to get the monitor.

So I'm doing a poor man's 24 hr BP monitor. (everything I do is, by definition, 'poor mans')No, I won't wake myself up to take a pill, errr, take my BP, so some readings are missing:

08:00 AM 118/76 61 supine
08:30 AM 119/86 82 standing
09:00 AM 129/88 94 standing
09:30 AM 131/87 66 supine
10:00 AM 123/78 65 supine
10:30 AM 121/80 57 supine
11:00 AM 125/83 61 supine
11:30 AM 130/95 81 standing
12:00 PM 134/92 62 sitting
12:30 PM 134/86 64 sitting
01:00 PM 138/97 64 sitting
01:30 PM 125/96 98 standing for 1/2 hr, walk to mailbox
02:00 PM 128/95 70 supine
02:30 PM 131/88 71 supine
03:00 PM 126/86 74 supine
03:30 PM 123/77 67 supine

3:30 pm to 6:30 pm dozing on and off

06:30 PM 108/72 62 supine
07:00 PM 121/85 107 standing, been up for a few minutes
07:30 PM 113/88 95 standing, making supper
08:00 PM 145/88 80 sitting
08:30 PM 138/93 83 sitting

I will mail this to the doctor tomorrow. Will she look at it, will it mean something to her? To me it means I better just stay on the couch, all the time. Ugggh.

I've been trying to get a tilt table test for POTS for TWO YEARS. The doctors just blow me off, I call it 'The Aroostook County Brushoff', they don't say yes, they don't say no. They don't even say why it might not be appropriate. And they wonder why I'm a 'difficult patient'.

"High blood pressure is anything above 140/90 mm/Hg" (quote from wikipedia).

I personally dont think by those readings you have that you could be said to have actual hypertension with just those occassional higher readings you are getting.. If your doctor keeps insisting ask for 24 hr BP monitoring done. That will probably show it at readings even lower then the ones you have there.

It's always high at a doctors office. Just calling a doctor causes it to shoot up.

They call that issue with the BP going up just at doctors "white coat syndrome" http://en.wikipedia.org/wiki/White_coat_hypertension

"The debate and conflicting ideas revolve around whether or not it would be feasible to treat white coat hypertension, as there still is no conclusive evidence that a temporary rise in blood pressure during office visits has an adverse effect on health.

In fact, many cross sectional studies have shown that "target-organ damage (as exemplified by left ventricular hypertrophy) is less in white-coat hypertensive [patients] than in sustained hypertensive [patients] even after the allowance has been made for differences in clinic pressure".[6] Many believe that patients with "white coat" hypertension do not require even very small doses of antihypertensive therapy as it may result in hypotension, but must still be careful as patients may show signs of vascular changes and may eventually develop hypertension."

 

[Caleb]

The best ways to control the blood pressure are:
The use of high quantity of the water
Daily exercise
Use the vegetables in your life

 

[Sallysblooms]

The best ways to control the blood pressure are:
The use of high quantity of the water
Daily exercise
Use the vegetables in your life

Yes, you have to do all the right things, but many with POTS or other problems have a hard time. When the Autonomic Nervous System is dysfunctional the BP goes up and down.

 

[jimells]

"In fact, many cross sectional studies have shown that "target-organ damage (as exemplified by left ventricular hypertrophy) is less in white-coat hypertensive [patients] than in sustained hypertensive [patients] "

This appears to be the case for me. The echocardiogram showed no abnormalities.


I don't quite understand what vegatables have to do with hypertension, or water either. The diuretics that doctors like to prescribe cause fluid loss. They gave my mom the gout.

My BP goes all over the place, like in the chart above. But the doctors just ignore that.

Sallysblooms, your crown keeps growing. I hope its size is in inverse proportion to your POTS. What do you use to control it? The tiny-dose atenolol is working pretty good for me, as long as I stay away from the doctor.

 

[Sallysblooms]

Diuretics with POTS can be awful, tried a tiny peice of one pill before we knew what was wrong (POTS). I was so dizzy I couldn't move for 9 hours.

Jimells, I have to take Benicar for the BP, it got so high with POTS. Otherwise, it is all good stuff, supplements! I am much better, especially my CFS! If it weren't for POTS I would be able to do everything I want.

I tried Atenolol, it made me cough and cough. Had to stop.

ALA is fab for me, amazing for the nerves. I take so many supplements, hard to list.

 

[ramakentesh]

A large subset of POTs patients have orthostatic hypertension - not true hypertension, only on orthostatic challenge. these patients still seem to have cerebral hypoperfusion - perhaps form cerebral vasospasm.

 

[Marky90]

I have high blood pressure when standing atm and i am at loss of what to do. Just got home from a 45 min walk and was feeling bad and disoriented at the end, and rightly as i was thinking my BP was 148/113. Which is a hypertensive crisis lol? My diastolig seem to often go over 100 when standing, sometimes in the 90s only. Its normal when sitting and lying.. Is this so dangerous that i should go on medication? im 24 years old and healthy so it would be bad luck to have a stroke or heart attack..Ive noticed i feel better on alcohol, maybe because it dilates the blood vessels..

edit: after lying 15 minutes - 108/62 lol, then after 30 106/74.. weird stuff

 

[xks201]

Diuretics with POTS can be awful, tried a tiny peice of one pill before we knew what was wrong (POTS). I was so dizzy I couldn't move for 9 hours.

Jimells, I have to take Benicar for the BP, it got so high with POTS. Otherwise, it is all good stuff, supplements! I am much better, especially my CFS! If it weren't for POTS I would be able to do everything I want.

I tried Atenolol, it made me cough and cough. Had to stop.

ALA is fab for me, amazing for the nerves. I take so many supplements, hard to list.

Does the benicar make you even more tired ?

 

[Noah GB]

I have high blood pressure when standing atm and i am at loss of what to do. Just got home from a 45 min walk and was feeling bad and disoriented at the end, and rightly as i was thinking my BP was 148/113. Which is a hypertensive crisis lol? My diastolig seem to often go over 100 when standing, sometimes in the 90s only. Its normal when sitting and lying.. Is this so dangerous that i should go on medication? im 24 years old and healthy so it would be bad luck to have a stroke or heart attack..Ive noticed i feel better on alcohol, maybe because it dilates the blood vessels..

edit: after lying 15 minutes - 108/62 lol, then after 30 106/74.. weird stuff

My BP is almost always around 130-140/110-120 when I'm standing and pulse is between 85-110 bpm. I too feel better on alcohol, but when I measure my BP it's no different. Could it be we're just numbing our senses?

My resting (supine) values are 93/63 57 by the way.

 

[*GG*]

My BP is almost always around 130-140/110-120 when I'm standing and pulse is between 85-110 bpm. I too feel better on alcohol, but when I measure my BP it's no different. Could it be we're just numbing our senses?

My resting (supine) values are 93/63 57 by the way.

Read recently that high BP can be caused by sleep apnea, had a Dr appt yesterday and mentioned this to my Dr. She said it is true, and that once I have an appt again for my sleep apnea, my machine died over a year ago, and started to realize that the 2 might be connected.

So looks like I might need a machine again, although I was waking up with the mask off in the morning, and I hadn't done that for years. So was thinking my body realized that I didn't need it anymore. I was heavier when I first started on it, lost weight, and have put some back on recently! So might need a machine again until I lose some weight?

GG

 

[Noah GB]

Read recently that high BP can be caused by sleep apnea, had a Dr appt yesterday and mentioned this to my Dr. She said it is true, and that once I have an appt again for my sleep apnea, my machine died over a year ago, and started to realize that the 2 might be connected.

So looks like I might need a machine again, although I was waking up with the mask off in the morning, and I hadn't done that for years. So was thinking my body realized that I didn't need it anymore. I was heavier when I first started on it, lost weight, and have put some back on recently! So might need a machine again until I lose some weight?

GG

How did you find out about your sleep apnea? I sleep lightly and wake up easily. However, magnesium seems to help me sleep soundly. Can't remember waking up the past couple of days.

 

[*GG*]

How did you find out about your sleep apnea? I sleep lightly and wake up easily. However, magnesium seems to help me sleep soundly. Can't remember waking up the past couple of days.

I have had sleep studies done in the past, 2 of them. The first one found little REM sleep, not sure what else. The 2nd one I had done determined I have sleep apnea. that was in 2009, think they might have a cheaper way of determining this now, but will find out in early March.

GG

 

[alex3619]

For those who might read this thread, I figured out late last year that a good number of my symptoms, including neuropathy, are most probably caused or exacerbated by high blood pressure medication. I spent ten years swapping my blood pressure meds, and have tried every general variety except diuretics. They ALL cause major problems. When I was in hospital a couple of years ago I had major problems that I figured out were from a blood thinner they had me on. It seems that any medication that messes with my vascular system (and adrenaline can trigger a post-adrenaline OI issue) is a major problem. Given that I cannot do rigorous exercise due to ME, I have no great mechanisms for lowering blood pressure left.

Severe OI and high blood pressure are a combination that confuses most doctors. The last one I saw just didn't want to know and fobbed me off. GIven that he did give me my meds refil I let that go ... he was not a trust inspiring doctor anyway.

Given the latest research from Griffith University's NCNED team, I wonder if many of us have one or more genetic abnormalities related to the vascular system. They found consistent snp differences between ME and healthy controls, in the muscarinic receptors.

 

[Noah GB]

I have had sleep studies done in the past, 2 of them. The first one found little REM sleep, not sure what else. The 2nd one I had done determined I have sleep apnea. that was in 2009, think they might have a cheaper way of determining this now, but will find out in early March.

GG

I don't recall waking up notably much recently. Could sleep apnea be present without one noticing?

 

[Noah GB]

For those who might read this thread, I figured out late last year that a good number of my symptoms, including neuropathy, are most probably caused or exacerbated by high blood pressure medication. I spent ten years swapping my blood pressure meds, and have tried every general variety except diuretics. They ALL cause major problems. When I was in hospital a couple of years ago I had major problems that I figured out were from a blood thinner they had me on. It seems that any medication that messes with my vascular system (and adrenaline can trigger a post-adrenaline OI issue) is a major problem. Given that I cannot do rigorous exercise due to ME, I have no great mechanisms for lowering blood pressure left.

Severe OI and high blood pressure are a combination that confuses most doctors. The last one I saw just didn't want to know and fobbed me off. GIven that he did give me my meds refil I let that go ... he was not a trust inspiring doctor anyway.

Given the latest research from Griffith University's NCNED team, I wonder if many of us have one or more genetic abnormalities related to the vascular system. They found consistent snp differences between ME and healthy controls, in the muscarinic receptors.

Which medication are you currently on for ortostatic hypertension? My main concern is OI with diastolic pressure being >100 when upright in addition to POTS.