Help: Blood pressure TOO HIGH...

[CBS]

Beta Blockers and Ace inhibitors

Shane...I'm wondering...do you or your doc think the metoprolol caused or contributed to your wild swings, strokes, etc.? Was it mainly helpful for rapid heartbeats, but not BP?

Danny,

The metoprolol (beta blocker) had absolutely nothing to do with the TIA's. I was on a very low dose (50 mg/day related to another issue effecting the heart that had recently been diagnosed) at the time the TIA's began. Metoprolol reduces my HR does nearly nothing to impact my BP (probably has a very minor effect from lowering HR).

The TIA's and retinopathy, etc. were all due to BP and they ceased/reversed very quickly once we got my BP under control with the lisinopril (I was measuring my waking BP everyday and about 10 days after starting the lisinopril I woke up and had a reading of 120/75 - at the time the systolic was typically around 160ish apon waking). The TIA's stopped that day and six weeks later my retinas were nearly healed.

Since starting on the lisinopril I have had some swings in HR but not BP. Why I needed 150 mg one day to keep my HR at 70 BPM and then the next day 150mg causes lopressor (metoprolol) over dose and my HR drops to 35-40 BPM is a mystery. My docs think its just part of the whole autonomic damage/dysfunction that arises from viral infection and I adjust my metoprolol accordingly.

Best of Luck,

Shane

 

[glenp]

Other meds?

Could any meds that you are on be causing it? When I went to cardiologist mine was so high that he wanted me on some meds right then, I declined and weaned myself off of effexor, next time I went in my bp was 77/44 -he thought his machine was malfunctioning. I bought my own cuff so can monitor myself now, it is now creeping back up. I didn't realize magnesium helps, I take a scoop of "magnesium glycinate" don't like to overdo it. I think it is a very good idea to get your own cuff so you can monitor yourself.

glen

 

[Wayne]

Freeze-Dried Calcium Magnesium

Recently my HR just dropped significantly overnight (70 BPM to 35-40 BMP). We had to reduce my metoprolol back to 25 mg a day. We have no idea why the 150 mg was suddenly way too much but I now monitor my HR and BP daily.

Shane

Hi Shane,

I've had a ridiculously low HR for most of my life. Resting rate would sometimes be as low as the low 30s, but usually around 40 or so. More recently it's usually in the 50s. I used to think this low rate was a good thing, and reflected a really good cardiovascular capacity. I've since realized that it was probably low as a result of neurological aspects of my ME/CFS. I've rarely heard of others having a HR as low as you mention. I can certainly relate to it.

Hi Dan,

Sorry to hear about your dilemma. I might just make a quick mention of a freeze-dried calcium-magnesium powder I take. It works well for me because it gets absorbed into my muscles within minutes. I was wondering if means a lot of it doesn't go through the GI tract and perhaps avoid the D that you seem to be prone to. The company that distributes this powder is called "A to B Calm".

Good luck at your doctor's appointments (these are some of the most stressful things I do). And good luck in finding a good solution for yourself. BTW, I was reading about transdermal magnesium on Carter Burke's thread, and feel I will likely give this a try at some point. My motto: Leave no stone unturned. Lots of stones with not much underneath them however.

Wayne

 

[CBS]

Low HR

Hi Shane,

I've had a ridiculously low HR for most of my life. Resting rate would sometimes be as low as the low 30s, but usually around 40 or so. More recently it's usually in the 50s. I used to think this low rate was a good thing, and reflected a really good cardiovascular capacity. I've since realized that it was probably low as a result of neurological aspects of my ME/CFS. I've rarely heard of others having a HR as low as you mention. I can certainly relate to it.

Wayne

Hi Wayne,

Before CFS I used to compete in long distance cycling and bike touring. Two hundred miles a day was not unheard of. I was still wearing my cycling shorts after a 60 mile weekend ride when I noticed a very large lymph nodes, 24 hours before my initial infectious episode started with a very high fever. I had a resting HR of 45-50 back then and it was a good thing.

My doc and I recently joked that there was no way that a high level of fitness was causing my low HR (more erratic than low) today.

 

[susan]

stress eraser gadget

Hi Danny,
I bought a stress eraser to help lower my heart rate and BP but I did not like it. It taught me a breathing pattern but it ended up stressing me as when I failed at it I stressed more....(.you had to make little mountains) Another woman and I agreed upon this so stopped it. Now I just put the breathing CD on that I posted on this forum and I do that.

 

[liverock]

Hi Liverock,

Thanks for posting your information. Interesting idea about the hormonal changes and aldosterone.

For the CoQ10 - can you tell us what dose you were on, and for the transdermal magnesium - were you using magnesium sulfate or magnesium chloride?

Thanks,

Maxine

Hi Maxine,

The magnesium oil I tried was Magnesium Chloride from bronzeagenutrition which is said to be a very highly absorbable type of Magnesium Chloride obtained from under the North Sea.

http://www.bronzeagenutrition.com/product.php?id=13

I also tried using magnesium sulphate in my bathwater as well, but neither did very much for my BP.

The CoQ10 dosage I used was 400mg per day softgels which I still take BTW as it strengthens the heart.

I think its particularly important that CoQ10 is taken in the softgel, as its better absorbed when taken with the oil in the softgel.

 

[Victoria]

Brilliant suggestion L......

It would be interesting to know what your blood pressure is at different times during the day. Have you thought about purchasing a monitor for yourself?

I've had quite a few over the years and an expensive one is unnecessary. My favorite is an old fashioned mercury sphygmo made for one person ($25). Many of the less expensive digital ones work fine, at least for a few years usually. I didn't find that the expensive ones worked any better.

My BP has become extremely labile over the last few years. It's a good idea to keep a log if you can at different times of the day. I don't mean you should obsess over it by any means, but it would be interesting to give you an idea if more is going on than meets the eye. It would be nice to have a log when you go to see your doctor.

As far as BP meds go, there are a gazillion and everyone seems to react differently. Unfortunately it seems you just have to try them, and you're likely to be subject to whatever is your doc's favorite of the day

Brilliant suggestion.

I had to buy a BP machine some years ago & at that time, on regular daily reads over a period of 4 months, it was always stress (work) or eating too much or some other weird reason.

Fortunately I was able to claim 80% on my Private Health Insurance (on a letter from my GP saying I needed one). 80% refund on $175 made it worth buying the latest digital one at that time. I've got another up todate BP machine last year - same 80% back.

I am currently on Avapro HRT 300. 2 years ago Amlodopine was prescribed at well. But my ankles became so swollen (like a sprained ankle) I eventually couldn't walk or tie up my walking shoe laces, so this was discontinued & now it's only the Avapro HCT 300. (orginally started on Avapro 15O - just half & tab, & built it up over some weeks as I am sensitive to most drugs in some way or another).

But with some practice, I found a deep breathing exercise for 5 minutes drops mine up to 40 points (in a quite room at home - doesn't work in my stressful job).

To be honest, I think MY high BP would mostly rectify itself with leaving this job & getting more peace & relaxation in my weekday.

(I do take pure Salmon oil capsules, & various other supplements, but this deep breathing exercise works almost every time at home).

I've also cut out all dramas & action movies on the TV. I discovered watching tense dramas raised my BP at the end of the viewing time .

But do invest in a BP machine & take your pressure morning, noon & night & record your pulse rate & exactly what you were doing around that time (eg stressed going to a new Dr or test?).

A particularly severe bout of pain also raises my BP.

High BP is a silent killer - most people don't know that have it.

Normal should be about 120/80 (with a pulse of 60-70). An older person might have 140/80. Mine has been as high as 220/110 during a Thallium heart test - Geez, I thought I was going to die that day.

I might have 160/80 at the Dr's office - it's called "white coat syndrome". My Cardiologist took it at the beginning of a check up & at the end. It was markedly lower by the time we had finished talking at the end of the consultation.

But with practice I can get 160/80 down to 120/80 (or even 110/80), sith some relaxation & deep breathing exercises.

Low BP can also be an issue, but everyone is different.

 

[Hysterical Woman]

Liverock

Hi Maxine,

The magnesium oil I tried was Magnesium Chloride from bronzeagenutrition which is said to be a very highly absorbable type of Magnesium Chloride obtained from under the North Sea.

http://www.bronzeagenutrition.com/product.php?id=13

I also tried using magnesium sulphate in my bathwater as well, but neither did very much for my BP.

The CoQ10 dosage I used was 400mg per day softgels which I still take BTW as it strengthens the heart.

I think its particularly important that CoQ10 is taken in the softgel, as its better absorbed when taken with the oil in the softgel.

Hi Liverock,

Thanks for providing information about what you have taken - it helps everybody when you share your experiences. The bronze age magnesium chloride looks great - a shame that it didn't help your blood pressure. The help I got for my blood pressure was actually from magnesium glycinate tablets. The magnesium oil I use does help to relax my muscles even more and helps me sleep but I don't know if it is helping decrease my blood pressure even more. I used to check my pressure at the grocery and drug stores, but both have removed their machines. There seems to be a lot of that - stores removing their blood pressure machines - at least around here. Anyone else have that problem?

And thanks for the tip about the softgel CoQ10 - good information.

Take care,

Maxine

 

[liverock]

Also thanks to liverock and ComeBackShane for your info, stories, and suggestions. I'll look into the ace inhibitors later today. Also...liverock, I too am wondering what type of magnesium was in the transdermal product you used...?

I too have that diabetes insipidus...for decades actually...so perhaps an "ACE" drug would be more appropriate?


Dan

Danny,

People with diabetes insipidus usually have low potassium and high sodium electrolyte levels which can cause high BP. It probably would be better having this checked first as using an ACE inhibitor would just be masking the cause of the high BP.

ACE inhibitors are basically strong anti-inflammatories and Tumor Necrosis Factor(TNF) inhibitors, which in most cases means that for some reason these inflammatory cytokines have shot up and this raises the BP.

http://www.sciencedirect.com/scienc...serid=10&md5=a80b9e9aa3fd190e9494531bb909f658

In my case there is no mystery about this as it came on after a period when I felt almost 'normal'

I have found these are the most dangerous periods for me, because after long periods of fatigue to suddenly feel 'I'm Back!', causes me to lose all sense of pacing and the need for supplementation etc.

I foolishly decided to try to help a plumber friend with the installation of a new kitchen, which eventually needless to say, dumped me back to square one with the added high BP as a bonus.

Whether the high BP is caused by lack of pacing or is hormonal, I think we have to face the fact that our hearts have taken a beating with the original onset of CFS and subsequently. Peckerman et al conclusively showed that PWC's have a lowered heart output and we need to bear this in mind.

Dr Cheney had his heart transplant due to high BP over many years. I think its something we should all be checking regularly ourselves and not just at the doctors office.


.

 

[CBS]

Diabetes Insipidus

Danny,

People with diabetes insipidus usually have low potassium and high sodium electrolyte levels which can cause high BP. It probably would be better having this checked first as using an ACE inhibitor would just be masking the cause of the high BP.

I just posted a detailed description of my experience with/thoughts on DI here it is in its entirety:

Hi Everyone,

I have florid Diabetes Insipidus (DI). For about four years my urinary output was very erratic. We measured output for other reasons and my volume was always either 1500-1800 ml or 3500-4500 ml. This was always a matter of curiosity but my docs never went much further than that.

In the fall of 2008 things started to change dramatically. My episodes of frequent high volume output became more frequent (4-5 days a week up from maybe 1-2 a week) a week and would last longer (6-7 hours instead of 2-3 hours).

DI which can develop over a course of years often results in a large bladder. Your urinary volume will be in the 600-1200 ml per void range. Average for someone with normal output is roughly 300-400 ml. and somewhere around 3-5 times a day.

When things hit their worst (before finally being diagnosed and starting on DDAVP/desmopressin) I had a week where my output was 7 GALLONS a day!

Diagnosis is much more complicated than just vasopressin or ADH levels (they are the same thing). Vasopressin levels can be suppressed to ZERO by over consumption of water (a potentially dangerous state). In order to Dx DI you'll need to be seen by a doctor that knows how to conduct a water depreivation test and has extensive experience with DI. Endocrinologists with experience in pituitary (posterior) and hypothalamic function are strong candidates but neurologists specializing in traumatic brain injury are also well versed as many cases arise from auto accidents (a quick for and aft movement of the brain can damage the pituitary stalk - no functioning stalk and no pit to release the vasopressin).

If you take desmopressin or DDAVP (a nasal form - also available as an injectable) and can't pee - STOP TAKING IT and lower your H20 consumption for a day. Desmo and DDAVP wear off in about 12 hours (I know - I've missed doses, most recently last week and I turned into a fountain at a movie - so much for making the effort to get out for an evening). This is called washing out. If you have florid DI (and you'll know it), getting caught without your meds can be a bit stressful but the first thing to do is to replace the fluids you're losing with water - up to a liter per hour (and get to you rmeds ASAP). I have back-up meds in both cars and at my in-laws.

Do I think that most people with CFS have full blown DI? Nope, at least not in its florid form. As a couple posts have noted, treating for DI when it isn't present can be life threatening (fluid buildup and water intoxication leading to burst cells in the brain). No doctor who knows what they are doing is going to give out meds for DI without a strong warning and careful urinary analysis (primarily sodium levels - too dilute and you're over medicating or don't need it). I had my electrolytes checked daily for two weeks and then once a month, now once every three months. Every several months I deliberately stop taking my meds (on a day when I know I am not going anywhere) and I wash out on purpose. This gives me a good sense of whether or not I'm at the right dose (and even if I still need the meds). 25% of DI cases are idiopathic (no identifiable cause). Rarely, DI can spontaneously resolve.

Do I wonder if many people with CFS have fluid imbalance issues? Absolutely. Is this a mild form of early DI? I wonder. Would I recommend treating this with desmopressin? Only very rarely. Increase your fluid intake.

I do wonder if much of the hypotension associated with CFS is actually caused or made worse by low levels of ADH (very mild DI) and resultatnt low blood volume? Absolutely! For years I managed this with increased levels of H20 but only when I was thirsty (which was often). An interesting feature of DI is that people often crave COLD drinks. I was filling my glass with ice even in the winter. I almost never wanted anything that was warm. I'd be out for dinner and have 8-9 refills. I didn't have to pee as often as you might think. On ultrasound we found that my bladder was huge (over 1.5 liters). It was so big that the tech couldn't find it (it was like trying to read the writing on a billboard while standing 2 feet away).

So what would I do if I had CFS and thought that I had DI? There are signs. Asking for 2 collection jugs when doing a 24-hour urine sample is reason for suspicion but in my case the output was highly variable for years. POTS is also reason to wonder (my POTS cleared up entirely after treating the DI). Low blood volume when uncompensated leads to hypertension. When the low volume gets to a critical level, your BP may actually jump or become erratic (your body is trying to squeeze the circulatory system down so that the four liters of blood you have is adequate to circulate in your five liter vascular system - pressure is required for adequate blood flow, lack of pressure is called shock). Your HR can also become erratic as your system tries to move the lower blood volume around your body more quickly. This can cause some mildly lower blood ox levels (80% versus 95%). Also, for years I had very dry cracked and bleeding fingers and feet. It was worse in the winter but I still could not go without socks in the summer. Also very dry lips. These cleared up almost immediately once I was properly hydrated (before being Dx and treated I thought I was taking in enough fluid but in retrospect I wasn't).

Another sign that DI is an issue is the effect of an IV. Several times before being diagnosed I had gone to the ER because I just could not sit up without profound dizziness and my HR/BP were erratic. They'd scratch their heads and then say "you look a bit dehydrated and your lips are dry so lets give you an IV." One to two liters later I'd feel a thousand times better, my BP and HR was down and I could walk out of the ER without feeling like I was going to faint. Go figure. Lastly, the ER repeatedly checked by hematocrit level as a measure of dehydration. It was always normal and so I was told that I could not be dehydrated. I don't know why but hematocrit levels as an indirect measure of hydration were entirely inaccurate for me (high levels would have meant that I was dehydrated).

This is a really tough diagnosis and endocrinologists/neurologists are very cautious about giving this diagnosis. Tons of questions about symptoms and history as well as a lot of tests.

Know that there is a form of DI that is caused by compulsive water consumption (Psychogenic DI or polydipsia) and that is going to be the doctors' first thought. Do not go into see your doc and insist this is what you have. Do not focus on all of the minor details and do not get upset if the seems to be skeptical at first (We should all be good at this by now). May I suggest focusing on being dehydrated and having to pee a lot.

A proper water deprivation test involves an overnight stay as an inpatient. They will monitor you very closely, including restricted fluid intake, urinary output ("ins and outs"), body weight, electrolytes and anything else (including making sure you don't drink from the bathroom faucet) that seems key.

The may give you a very small dose of desmopressin to see if it impacts your pattern of urinary output.

From my personal experience, mild or intermittent cases are nearly impossible to diagnose. In these cases, a water deprivation test is very unlikely to be positive.The good news is that in these cases, increased H20 consumption should be enough to provide significant relief (Dr. Klimas stressed the importance of fluid intake in her PANDORA talk - "If I have 5 liters of blood volume, CFS patients have 4.") Some docs will treat mild and intermittent cases with increased fluid intake and electrolyte monitoring.

I strongly suspect that mild DI will be found to underlie a significant portion of the CFS patients with POTS. My advice is to drink lots of h20. Keep tabs of how frequently you have to urinate and the volume (high frequency and low volume is not likely to be DI), and be prepared to talk with your doc about this in a calm matter. For what it is worth, a low dose of desmopressin is 0.1 mg twice a day. Average does is 0.3 to 0.5 mg a day (divided into two doses - once before bed - so you don't wake up having to pee - another sign that DI might be an issue - and once around mid-day).

My docs think that my DI was caused by viral encephalitis and a posterior pituitary cyst which has recently increased in size. My Di made other autonomic issues difficult to diagnose but after getting the DI under control we found that I still had autonomic (GI and HR/BP) issues beyond the DI that needed to be treated separately. Getting the DI under control was key to having a clear picture of all that was going on.

Good luck and feel free to ask any questions.

Shane

 

[Dreambirdie]

and for the transdermal magnesium - were you using magnesium sulfate or magnesium chloride?

Thanks,

Maxine

It was magnesium chloride.

 

[Hysterical Woman]

Thanks Dreambirdie

It was magnesium chloride.

Was it in a cream, magnesium "oil", or magnesium "gel"?

 

[Dreambirdie]

Was it in a cream, magnesium "oil", or magnesium "gel"?

I used both the oil and the gel.

 

[Hysterical Woman]

Thank You....

 

[susan]

DI

Comebackshane,
Thanks so much for your long detailed explanation of DI. I have a friend who is struggling with this at the moment and her GP knows nothing about this. I will show her this article.

Thanks
Susan

 

[dannybex]

Danny,

People with diabetes insipidus usually have low potassium and high sodium electrolyte levels which can cause high BP. It probably would be better having this checked first as using an ACE inhibitor would just be masking the cause of the high BP.

ACE inhibitors are basically strong anti-inflammatories and Tumor Necrosis Factor(TNF) inhibitors, which in most cases means that for some reason these inflammatory cytokines have shot up and this raises the BP.

http://www.sciencedirect.com/scienc...serid=10&md5=a80b9e9aa3fd190e9494531bb909f658

In my case there is no mystery about this as it came on after a period when I felt almost 'normal'

I have found these are the most dangerous periods for me, because after long periods of fatigue to suddenly feel 'I'm Back!', causes me to lose all sense of pacing and the need for supplementation etc.

I foolishly decided to try to help a plumber friend with the installation of a new kitchen, which eventually needless to say, dumped me back to square one with the added high BP as a bonus.

Whether the high BP is caused by lack of pacing or is hormonal, I think we have to face the fact that our hearts have taken a beating with the original onset of CFS and subsequently. Peckerman et al conclusively showed that PWC's have a lowered heart output and we need to bear this in mind.

Dr Cheney had his heart transplant due to high BP over many years. I think its something we should all be checking regularly ourselves and not just at the doctors office.


.

Hi Liverock,

Interesting you should mention yours came on during a period of when you felt 'almost normal'. I was feeling 'better' in November...wasn't so cold, was able to do a little more...but in hindsight, perhaps I was warmer overall, because my BP was increasing, diet was too 'heating', too fatty. And then by Dec 3, eyes/sinsuses, etc., very dried out (face had been dry for months)........and here we are.

(I can also totally relate to the sense that one doesn't need to pace oneself when they're feeling better...when we should of course be doing just that. I've been overdoing it for years...would love to rest more, but can't always, as I do everything for myself...at least 95% of the time.)

I've had a few hair mineral analysis' done...and each time my potassium is high, and my sodium very low. So I'm guessing that means I'm getting rid of (or not holding on to) potassium, and retaining sodium? Just guessing, but I know that standard blood tests in the past have shown that everything's "okay". Except that bad cholesterol was getting too high.

Anyway, I'll mention this all to the doc today, thanks.

Interesting info I turned up last night about vitamin d deficiency and high blood pressure -- quite a few studies on the vitamindcouncil site. Apparently it works like a natural ace inhibitor, if my rotten brain servers me correctly.

THANKS TO ALL FOR THEIR SUGGESTIONS AND INPUT, I'm very humbled and appreciative...but I've got to stop now, and make lunch (early for me) as I have the appt at 2:15.

Best regards,

Dan

p.s. I should note too, that I'm very skinny: 6' 2", and about 160-162 lbs. Anyone else with weird/high BP and thin?

 

[Dreambirdie]

Hey Dan--

I just had another thought. Watch out!

My TCM guy, who works a lot with CFS and MCS and other chronic infectious diseases once told me that HEAVY METALS can cause high BP, along with a myriad of other symptoms. This goes along with some of experiences I have read on the B12 thread, regarding healing the methylation block, which according to Rich can cause the release of heavy metals.

You might want to check and see if you are toxic with the heavy metals. I did a poop test for them, which I was able to order myself through these guys:http://www.detoxamin.com/catalog/index.php?main_page=product_info&cPath=8&products_id=75

I had MEGA amounts of THALLIUM show up, which was released during my experimentation with Freddd's protocol. It gave me palpitations and arrhythmia, tho no high BP.

Check it out.

 

[Dreambirdie]

wow.... How did all the RED happen on this thread.

Is that through sheer effort or some gimmick that selects the words that you want highlighted in red for you?

 

[dannybex]

BP update...

I finally made it to the docs yesterday. Naturally was tensed up at the appt, as despite my best efforts, some little voice inside me was sure the BP would be even higher. Fortunately it was a little lower...158/80 when the nurse checked it, and then 20 minutes later when the doc checked it, it was 148/88.

So, still too high, but a definite improvement over 170/89. And I guess it suggests in part that it is stress related, but also probably diet related. My bad cholesterol was too high when last checked (a year and a half ago already!), and the good cholesterol was too low. So will be working on ways to balance that, as I had stopped some EFA's in the last 6+ months.

I have to go in early tomorrow morning (ugh) for a fasting blood draw to recheck cholesterol, etc., and also vitamin D. I've been bad about taking any lately, maybe 1,000iu's twice a week(?) and we certainly don't get much here in Seattle, even in the summer.

I want to thank everyone for their kind replies, and the amount of helpful information -- certainly shows we're all different and all have different causes for various symptoms. (Thanks Dreambirdie for the info on heavy metals...that may be a factor...I was taking the b12 off and on, and was on high coq10, until Saturday).

Also thanks again to Shane for the diabetes insipidus info. I can't imagine I drink that much water, or lose that much, and certainly can't stand cold water, so hopefully that's not the issue.

Thanks so much,

Dan

 

[glenp]

Double Whammy

I think that if your cholestol is off, it might be wise not to leave it as long. Apparently my cholestrol is ok. I was checking my pressure regulary and got it down, then noticed my rate was up, it was 195, I got so scared I stopped checking it. I also need to get back at it. I do take a baby aspirin every day. I wonder what Dr. Cheney was doing about his blood pressure when it was up for 10 years? I noticed someone said hbp can cause dry eyes, I hadnt realized that, I didn't realize that there were any signs. It is very important that we keep track OURSELVES. I was on effexor when my bp first went up, when I weaned off my bp went back down to low.

glen