ME/CFS and HIGH blood pressure

[meadowlark]

No, I don't have one. ("Blood pressure machine" was my clunky phrasing for bp monitor.) It's obviously a good idea.

 

[taniaaust1]

Ive not much of an idea how long my spikes can last as I dont have a BP monitor (Im going to get one thou at some point) so only know about them by 24 hr monitor and a couple of other times mine has been caught being sky high when I had access to anothers monitor. The day I was wearing the BP monitor... it was raised very high for a couple of hrs.. (with a slow steady raise over that time reaching peak after 2 hrs).

I also went throu months were my BP was a constant borderline hypertension during the day at least I know (as it was high every time I was at doctors but I dont know what it was doing at night during that period....but that what seemed to be consistantly high settled after quite a few months). So just in my own case.. its everywhere. It just does all kinds of things. I dont know if there is any set rules for BP dysregulations when it comes to ME and our symptoms all constantly varying in degree.

 

[meadowlark]

Yes, Tania, as someone on government disability, the cost sure worries me. But I'm trying to take things one worry at a time. I don't have the energy for more.

 

[valentinelynx]

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.

That's a good point. The drug that Lynne B is on is a combo of an ARB (angiotensin receptor blocker, in this case, irbesartan) and a mild diuretic (hydochlorothiazide). Mild diuretics are often used as starting drugs for controlling hypertension, but for CFS/ME patients who likely have low circulating blood volume, diuretics may be counterproductive. I never liked these combo drugs, anyway. They serve 2 purposes: a. to reduce the number of pills a patient has to take, and b. to give the drug companies a way of charging more for a drug that's gone off-patent. However, they make it difficult to adjust the dosage of the individual drugs or to stop one (e.g. for surgery, where diuretics should be avoided the day of the operation). Lynne B might consider asking her physician for a prescription for plain irbesartan, without the hydrochlorothiazide. I'd be wary, as well, if your elevated BP is paroxysmal. That is to say, if you have occasional spikes in your BP, but usually have normal, or low normal BP, then potent antihypertensives like the ARBs or ACE inhibitors (tend to end in 'pril) could make your BP too low much of the time. I see lots of people who are overmedicated with antihypertensives, probably because they tend to show high BPs in the doctor's office.

 

[meadowlark]

Hi Valentine: This is the first time in ten years my doctor has found anything other than normal BP. I think it's likely that I had less severe hypertension many times in that period, but never coinciding with a doctor's visit.

My BP was normal on Friday, but an EKG had revealed a very slow pulse. That doesn't surprise me, as I assume I have a low blood volume. Nevertheless, when I can get to the hospital (next week) I am going to wear a heart monitor for 48 hours.

 

[taniaaust1]

My BP was normal on Friday, but an EKG had revealed a very slow pulse. That doesn't surprise me, as I assume I have a low blood volume. Nevertheless, when I can get to the hospital (next week) I am going to wear a heart monitor for 48 hours.

Are you going to have 48hr or 24hr BP monitoring done too?

My stupid GP would only do 24hr heart monitoring which didnt include the BP thou I told him if he wants to see my issue he needs to include BP in the monitoring. The only time Ive had 24hr heart monitoring which included BP monitoring was during a scienctific study). If you are having 48hr heart monitoring done.. note that isnt how POTS is usually picked up as any increases with that they put down to exercise etc and dont realise when one isnt, so if you are trying to find out if you could have POTS one needs tilt table test or heart monitoring in regards to postural changes rather then standard heart monitoring..

 

[meadowlark]

Hi Tania: It's a Holter Monitor, 48 hours, for electrocardiograph only. I don't think she is trying to use it to investigate orthostatic intolerance. It's just her automatic next step for patients with a slow heartbeat.

 

[GaryK]

Hi Meadowlark,

I wanted to give you some additional info on Catecholamines testing:

The reason to have this checked out by your doctor is this, If your hypertensive and find spiking BP and most important your not responding to normal hypertensive BP medication then they want to look at testing you for Pheochromocytomas and other Neuroendocrine tumors. These tumors are rare and most often benign but may be cancerous. These tumors are very slow growing as well.
These tumors excrete large amounts of catecholamines (Dopamine,Epinephrine,Nor epinephrine) which then cause Symptoms such as; Orthostatic Intolerance, severe head aches, palpitations,sweating,nausea,anxiety,dizziness and tingling in the extremities (Feet, legs, hands and arms).

I am being checked for this now by an Internal Medicine Doctor.

BTW Meadowlark whats interesting about what your saying that had occurred at your latest doctor visit and your BP spike. This has happened to me many times.
One day I had a BP of 170/147 pulse was at 132 bpm.
This same doctor told me that this BP measure was an error...lol I doubt it.
Also I was put on a BP med a few years back called Micardis and that company shipped a free Omron BP monitor. My Doctor told me about this free monitor as well as my Pharmacist.

Here is also a site to see Dr.David Bell's OI hypertensive diastolic case in study: http://www.oiresource.com/tresults.htm

Hope I haven't muddied the waters or given to much info here

take care
GaryK

 

[taniaaust1]

Hi Tania: It's a Holter Monitor, 48 hours, for electrocardiograph only. I don't think she is trying to use it to investigate orthostatic intolerance. It's just her automatic next step for patients with a slow heartbeat.

thanks for clearing me up meadowlark

 

[meadowlark]

Thank you, Gary K! That didn't muddy the waters at all. I am printing out all info for my doctor.

 

[kurt]

I'm another ME patient with high BP and POTS, I don't think this is rare, just a minority presentation of ME. My daughter who has ME also, has low BP and POTS. Seems that the BP is poorly managed, and can go either way in this illness. Interestingly, both of us have nearly identical ME symptoms, similar immune and PEM problems, yet different BP regulation issues. One difference between us is that I am more subject to anxiety problems, but she is more sensitive to pain.

Also, just FYI, I also found diuretics and also calcium channel blockers did not help, in fact made some things worse. But beta blockers have helped me, lowered the BP. Right now I use natural vasodilators with ACE-inhibiting properties, and that seems to help. For example, bioflavonoids, particularly cinnamon, and sometimes raw cacao. But if my BP was as high as some here have posted, I would use a beta blocker, something like propanalol.

 

[OurDayWillCome]

I think I have posted this before, but will again. It is important and treatable.

"Orthostatic hypertension has also been associated with a number of conditions involving some form of autonomic dysfunction. In a recent study of patients with POTS in the context of disordered mast-cell activation, 38% (3/8) were shown to have orthostatic hypertension.19 Interestingly, in this group of patients, the orthostatic hypertension manifested as either a persistent hypertensive response to assumption of an upright posture or as a hypertensive crisis, with BP as high as 240/140, with upright posture. This has not been observed in patients who have POTS but do not have mast-cell activation disorder."

http://www.nature.com/nrneph/journal/v2/n8/full/ncpneph0228.html

Vandy paper on POTS and Mast Cell Disorders:

http://hyper.ahajournals.org/content/45/3/385.full

If you have both problems, Bets Blocker are contraindicated.

 

[taniaaust1]

I think I have posted this before, but will again. It is important and treatable.

"Orthostatic hypertension has also been associated with a number of conditions involving some form of autonomic dysfunction. In a recent study of patients with POTS in the context of disordered mast-cell activation, 38% (3/8) were shown to have orthostatic hypertension.19 Interestingly, in this group of patients, the orthostatic hypertension manifested as either a persistent hypertensive response to assumption of an upright posture or as a hypertensive crisis, with BP as high as 240/140, with upright posture. This has not been observed in patients who have POTS but do not have mast-cell activation disorder."

http://www.nature.com/nrneph/journal/v2/n8/full/ncpneph0228.html

Vandy paper on POTS and Mast Cell Disorders:

http://hyper.ahajournals.org/content/45/3/385.full

If you have both problems, Bets Blocker are contraindicated.

scary as my uncle has a lifethreatening rare mast cell disorder which can be inherited in some cases.

He didnt know he had it till he suddenly found himself with it seriously in his early 50s I think it was. Unfortunately my uncle dont live in the same state as me as the disorder is so rare that there are only about 10 in Australia who have the condition like my uncle so hardly no knowledgable specialists in this country and this disorder can be very very hard to diagnose and diagnoses can be hit or miss with bone marrow biopsies. (that uncle is on the same side of the family as my other relatives who also have ME/CFS).

My uncle has always worried that I may have his disorder thou I did have one blood test for it which was negative.

 

[OurDayWillCome]

Tania... It is not easily found in the blood. One reason is that many are deficient in Tryptase, the Mast Cell mediator most often tested in the blood.

"RESULTS:

In support of our hypothesis, we find that alpha-tryptase deficiency affects 80/274 (29%) of individuals surveyed. The genotype of the alpha-deficient individuals is betabetabetabeta, due to inheritance of four beta genes. The percentage of the population with the mixed genotypes alphaalphabetabeta and alphabetabetabeta is 21% and 50%, respectively. Accounting for all alpha- and beta-alleles at the tandem loci on 16p13.3, overall alpha-allele frequency is only 0.23, with beta-alleles considerably outnumbering alpha as hypothesized. In samples of defined ethnicity, alpha deficiency affects 45% of Caucasians, but a much lower percentage of other backgrounds, including African-Americans and Asians. "

http://www.ncbi.nlm.nih.gov/pubmed/12100045

It is not easy to obtain a diagnosis, as Mast Cell Diseases are supposed to be rare, but if you are interested, you can check out The Mastocytosis Society site for symptoms and tips on how to find care.

 

[taniaaust1]

Tania... It is not easily found in the blood. One reason is that many are deficient in Tryptase, the Mast Cell mediator most often tested in the blood.

"RESULTS:

In support of our hypothesis, we find that alpha-tryptase deficiency affects 80/274 (29%) of individuals surveyed. The genotype of the alpha-deficient individuals is betabetabetabeta, due to inheritance of four beta genes. The percentage of the population with the mixed genotypes alphaalphabetabeta and alphabetabetabeta is 21% and 50%, respectively. Accounting for all alpha- and beta-alleles at the tandem loci on 16p13.3, overall alpha-allele frequency is only 0.23, with beta-alleles considerably outnumbering alpha as hypothesized. In samples of defined ethnicity, alpha deficiency affects 45% of Caucasians, but a much lower percentage of other backgrounds, including African-Americans and Asians. "

http://www.ncbi.nlm.nih.gov/pubmed/12100045

It is not easy to obtain a diagnosis, as Mast Cell Diseases are supposed to be rare, but if you are interested, you can check out The Mastocytosis Society site for symptoms and tips on how to find care.

nods yeah blood tests arent reliable (thou the immunologist/allergist I saw in past said they were and insisted that ruled it out (it was specialist at my states main hospital).. but my uncle had previously told me they arent reliable).. that is why i mentioned bone marrow tests as uncle previously suggested.
Ive also read in the past that one can have Mastocytosis rash biopsied thou its a long time since I got a rash with Dariers sign (I did get one of those rashes once or twice.. which blistered on touch) but I plan if I ever get a rash with dariers sign again , I will be pushing for a biopsy on it. (Ive also had times when I have that thing in which one can do skin writing where skin welts to touch).
Im familiar with the symptoms due to my uncle's Systemic Mastocytosis (the rarest kind)

I rarely get flushing thou did used to always get it when I showered (heat triggered). I did get an slight episode of it again couple of weeks back

yes I probably should check out the Mastocytosis society if they list doctors specializing, thou my own doctor I doubt would refer me to a specialist (I have to fight tooth and nail with him every time I want another referral). I'll try to push on more along this lines at some point (right now Im still pushing to try to get my POTS and dysregulated BP properly recorded as currently doctor wont believe and wont have me do tests which would show it). Probably best just to fly interstate at some point and see my uncles specialist over there.

 

[OurDayWillCome]

Tania... good luck! It seems we all have to travel to obtain diagnoses and good care.

I have never had skin problems except for one episode of head to toe hives. 20-30 % of us don't! As far as the POTS and BP issues you mention, I will just refer you back to the article in Nature. I had a hypertensive crisis, then my BP became labile. However, my BP is now fine since I have been on Mast Cell stabilizers for awhile.

Take care.

 

[jimells]

Very interesting topic. Lots to digest.

I saw a new primary care doc today. Unlike the last one, the new one is all worried about my BP. It's always high at a doctors office. Just calling a doctor causes it to shoot up. At home it's all over the place, usually not sky high.

Anyway, she wants me to take 25 mg Atenolol - this is a low dose? Does it really help prevent migraines? I asked her if it would make the orthostatic intolerance worse. I didn't really get an answer. Instead the nurse came in and checked the BP supine, sitting, and standing. Since my BP was already very high, I'm tense and agitated, this struck me as a waste of time. The 'poor man's tilt table test' didn't show orthostatic hypotension, which I've never seen much evidence of. I think I might have POTS instead.

She told me if I don't get my blood pressure under control, she won't presribe any more Imitrex. If a person wants to see my blood boil, trying to bully me is the best way to do it... Rather than complying with a bully, I'm more likely to throw the BP pills in the trash just to show her I can survive without the Imitrex, just like I did before I had them.

If I understand Cheney's work correctly, won't a lower BP cause less blood to go to other organs, causing other problems, like more fatigue? What kind of choice is that?

 

[Sallysblooms]

Does your heart rate get higher by about 30 beats per minute when you stand? You can get tested for POTS if it does. The Poor Man's Tilt test and others are good. I didn't take the Tilt. WAY to ill with POTS.

I would get a bp machine, sounds like you have one. Also, a good heart rate watch if you think it could be POTS. My BP went high with POTS and so I was put on Attenonol but that made me cough constantly. That can happen. Got off of that and on Benicar. It helped and getting better with my POTS has been the main thing.

There are many awful problems with POTS. Not sure about all of yours. Keep a good log of your BP each day. It is a serious thing for sure.

 

[jimells]

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'.

 

[Sallysblooms]

Thanks. i just stuck it on a picture, ha. I was at my worst with POTS in that picture, UGG!

Anyway, your heart rate doesn't look that high. Of course you can send it to your doc. My hrate goes at least to 125 and more just walking arond the house a bit. It gets up in a few minutes, so I sit down. I have a w.chair I use a lot to keep the rate lower..

Heart rate went to the 130's just because I went to get a package from the front porch today. Five seconds out there. 105 degrees. Heat brings on a bad POTS attack.... Sick for the rest of the day.