Bit of help needed! - Dropping bp, heart arrhythmias and fainting

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The weather is REALLY hot here and I can not function. My ME/CFS worsened last year and a whole bunch of cardiac problems emerged (again, but worse). My bp keeps dropping, i'm short of breath when it does and I keep getting heart arrhythmias. Yesterday I managed to just save myself from fainting, but the feeling has not left and today I have spent the day taking it easy. I faint a lot when I get like this.

Does anyone have any tips?. Are we just meant to put up with feeling like we are going to drop dead?.

BTW I see the cardiologist at the end of this month.
 

SOC

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The weather is REALLY hot here and I can not function. My ME/CFS worsened last year and a whole bunch of cardiac problems emerged (again, but worse). My bp keeps dropping, i'm short of breath when it does and I keep getting heart arrhythmias (bradycardia, svt and skipped beats). Yesterday I managed to just save myself from fainting, but the feeling has not left and today I have spent the day taking it easy. I faint a lot when I get like this.

I have a young son that I need to walk to and from the bus stop for school plus look after in general and it's making doing this impossible!!. I don't really have anyone to help out, not everyday anyway.

Does anyone have any tips?. Last night I felt so bad I almost called an ambulance, but what could they do really?. Are we just meant to put up with feeling like we are going to drop dead?.

BTW I see the cardiologist at the end of this month.
My daughter had the same symptoms last summer/fall, especially in the heat and in the morning. She was prescribed Florinef, K-Dur, and compression socks and was told to take her time in the morning so that her body can adjust to being upright. As long as she takes the meds, wears the socks and gets up at least an hour and a half before she leaves home, she has no more problems. :)

HTH
 

glenp

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dysautonomia?

Let us know what the cardiologist says.

I had those symptoms pretty bad about a year ago but they have gotten better

Put compression socks or travel socks on before you get out of bed. I just get up for a few minutes to get tea and take dextroamphetamine and sit upright in bed or semi lieing down. If I got straight up and stayed that way I could pass out.

http://www.cfids.org/webinar/cfsinfo2010.pdf
 

citybug

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I've been in bad shape since it was very hot in July in US. I kept drinking water and some tri-salts, but I forgot to eat more just plain salt. Now am following the heart rate monitor pacing here and on fb. Also for general staying cool I would wear those freezer pak things. maybe cool bath?

With the hr monitorwatch you can see rate go down squating, or lying down for brief periods (and longer when can), walk slowly. Rushing around to get ready is the worst. I'm going to try atenolol. Good sleep makes the rate go down too.
 
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Thanks for the replies :Retro smile:

This drop in bp isn't caused by getting up too quickly or getting up at all, i'm fine then - it isn't POTS. It happens when I go outside into the heat and then doesn't go away when i'm back inside. I don't spend anytime in bed during the day either. I don't want my heart rate to drop as I already get bradycardia which makes fainting worse!. I feel unwell in my heart, which worries me.

Not sure what the answer is!.
 

Sallysblooms

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My POTS began like that. Just be careful. It can start slowly over months. Good luck at the cardio. Most have never heard of POTS. POTS makes the heart feel awful. I was checked out at the cardio to make sure it was nothing else.Heat and stresses of different kinds can bring it on.
 

glenp

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I fogot to mention I have noticed symptoms after some scents or ordors. I hadn't realized how much the scents affected me.
Like Sally says most cardiologists have no idea of it. OI doesnt have to be POTS there are many variances of it

glen
 

SOC

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Thanks for the replies :Retro smile:

This drop in bp isn't caused by getting up too quickly or getting up at all, i'm fine then - it isn't POTS. It happens when I go outside into the heat and then doesn't go away when i'm back inside.
FWIW, my daughter would be sitting in her 8:00 class when out of the blue her BP would drop, her heart would pound, and she'd nearly faint. She'd stagger out of class and lay on the floor in the hall until she could manage to be upright enough to catch the bus back to her dorm. She'd be shot for the rest of the day. It's some form of dysautonomia.

Ditto if it was really hot. She'd feel fine and then out of the blue it would hit. It wasn't because she stood up too fast, or anything like that. It was primarily a low blood volume issue, although she has some dysautonomia. As I understand it, the heat was a problem because the heat would cause vasodilation and she didn't have enough blood volume to keep her blood pressure up to compensate for the vasodilation.

The Florinef and compression socks help maintain her BP so she doesn't faint (or whatever) when her dysautonomia acts up.
 
OI is related to adrenal fatigue. Both are very common in ME/CFS. If your adrenals aren't working right you'll be losing salt and magnesium and/or potassium. A quick and easy thing to try is drinking sea salt dissolved in a glass of water 3 times a day. Whatever amount tastes pleasantly salty is the right amount - something like 1/2 tsp to 1 tsp.

The ultimate solution is to get your adrenals tested and treated. Assuming you don't have Addison's, this is not mainstream medicine, so you'll need a naturopath. Get a 24 hour saliva cortisol test to make sure this is the problem. Then if it is, you would take an adrenal glandular and other supplements to support the adrenals and make up for those electrolyte losses.

There is also a link between a partial methylation block and the adrenals, and problems with chemicals/scents. If you have a partial methylation block it will cause your adrenals to weaken. It will also cause your glutathione levels in the liver to be depleted so that you can no longer detox chemicals, thus the weird reactions to tiny amounts of chemicals that don't bother anyone else.

The treatment is RichVank's methylation protocol, ie the methyl forms of folic acid and B12.

I've been on both treatments the past year or so, and feel these two combined have made the greatest difference for me.

In the past, I did faint from the heat one time and almost fainted many other times. Just with a few months of the aforementioned treatments under my belt, I actually enjoyed last summer's heat for the first time in a decade since being sick.

The adrenal treatment is supposed to take a year to complete. You would continue to take the methylation supplements for your lifetime.
 

sleepy237

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Hi Tulip, I can relate to the arrythmias but i dont kno what brings them on, I had cardio testing last year and everything was normal on basic tests. Like others have said for your blood pressure; support socks/stockings, salt plenty fluids to increase blood volume. I am waiting on some licorice tea being delivered as this can help raise cortisol too. Totally relate to you when you say are we meant to be feel like we are going to drop dead big hugs, I wish you luck with the cardio and hope that you will meet one who has some insight into this disease. I am still not happy despite cardio testiing and want an even monitor for a month to wear, try to catch some of the severe irregularities. I would ask your cardio for one if all other tests are fine. Frome my experience once they see a structurally normal heart they are satisfied with that but this illness goes beyond what "normal" would usually mean. Take it easy, don't over do things in the heat and keep your fluids up hugs ~Sleepy
 

richvank

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Hi, Tuliip.

Orthostatic problems, including OH (orthostatic hypotension) as you have reported, and POTS (postural orthostatic tachycardia syndrome) are common in ME/CFS.

In my view, there are three things that occur in CFS that are likely contributors to the orthostatic problems:

1. The total volume of blood in the body is often lower than normal. This likely results from a "mild" diabetes insipidus (not the same as diabetes mellitus) which is often present in CFS. This in turn is caused by lower than normal secretion of antidiuretic hormone (ADH) by the hypothalamus/pituitary. In my hypothesis, this is caused by glutathione depletion in these organs. The low ADH secretion causes the kidneys to dump too much water from the blood into the urine, and that lowers the total blood volume. People with diabetes insipidus have high 24-hour urine volumes (sometimes much higher than the normal average of 1.5 liters per day), and they have constant thirst. They drink a lot of fluids, but can't keep up with the loss of water into the urine, so they run at lower than normal total blood volume all the time. The osmolality (depends on concentrations of solutes, including the electrolytes) of the blood is higher than normal, and the osmolality (and specific gravity) of the urine is lower than normal.

The low total blood volume causes the venous return of blood to the heart to be lower than normal, and that lowers the stroke volume, since the heart can pump out only what it receives. The cardiac output (the product of the stroke volume and the heart rate) is particularly lowered when standing, because of the additional effect of gravity. Low cardiac output prompts the autonomic nervous system to speed up the heart rate in an effort to raise the cardiac output and deliver more blood when standing, and that constitutes POTS. The low cardiac output can also result in low blood pressure, which constitutes OH. In hot weather, or in taking a warm shower, more of the circulating blood is routed to the skin, in order to help cool the body, and that means that less flow is available for other organs, which exacerbates the problems.

2. Most people who have CFS have dysfunction of the HPA (hypothalamus-pituitary-adrenal) axis. This causes the cortisol output to be abnormal, usually too high in the early part of the illness, and then dropping down to be too low later in the illness. This interacts with the secretion of adrenaline (epinephrine), and noradrenaline (norepinephrine). Among other things, these hormones control the operation of the heart and the circulatory system. This dysfunction may also contribute to POTS and OH. In my hypothesis, this dysfunction is also due to glutathione depletion in the hypothalamus and pituitary. (I might mention, though, that Dr. de Meirleir attributes the hypothalamic dysfunction in ME/CFS to hydrogen sulfide, produced by dysbiotic bacteria in the gut. I think he plans to publish evidence for this mechanism.)

3. Many (or most) people with CFS have diastolic dysfunction of the heart, according to Dr. Paul Cheney, who runs detailed echocardiography exams on his patients. This means that the main pumping chamber of the heart (the left ventricle) does not fill with enough blood during the diastolic phase of the heart's cycle, and that also limits how much blood is pumped out (stroke volume). A low stroke volume again prompts the autonomic nervous system to speed up the heart rate in order to raise the cardiac output. It can also result in lowering the blood pressure. Diastolic dysfunction is caused by too low a rate of supply of ATP to the heart muscle cells by their mitochondria. In my hypothesis, this is caused by glutathione depletion in the heart.

The bottom line is that glutathione depletion can explain all of these aspects as well as many more aspects of CFS. In recent years, we have found that the glutathione depletion in CFS is linked to a dysfunction in the methylation cycle, and that lifting the partial block in the methylation cycle will restore glutathione and correct many of the aspects of CFS. If you want to read more about this, you can find information at http://www.aboutmecfs.org/Trt/TrtGSHIntro.aspx

As has been posted by others, there are also some temporary remedies that can help until the fundamental causes are dealt with. These include consuming electrolyte drinks or additional salt and water and using compression stockings. Some drugs, such as Florinef combined with salt, have been used, also.

I do agree that it would be very advisable to see a cardiologist to have your heart tested to see if there are other problems as well. If the cardiologist could run a Doppler echocardiograph exam including evaluation of cardiac output and measurement of not only the ejection fraction, but also the IVRT (isovolumetric relaxation time) and the e/a ratio, that would tell you whether you have diastolic dysfunction. The ejection fraction is often actually higher than normal, rather than lower, in cases of diastolic dysfunction. Dr. Cheney has suggested that this is an effort to compensate for the lower amount of blood in the left ventricle. This can be misleading to cardiologists who are accustomed to looking for low ejection fraction as the indicator of other types of heart failure.

I hope this is helpful.

Best regards,

Rich
 

Hip

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Low Blood Volume in CFS Caused by Low Albumin?

Recently I came across something that might relate to (or even explain) the low blood volume often found in CFS patients.

Apparently, albumin is required in the blood to ensure that the water component of the blood does not escape into the body tissues. Osmotic pressure has the tendency draw the water out of the blood stream, and into the tissues. The role of albumin is to set up a counter-pressure, called oncotic pressure, which has the tendency to pull water back into the blood stream. So the water volume in the blood is set by the balance of the opposing pressures: osmotic and oncotic.

Low serum albumin (hypoalbuminemia) levels are a marker of disease. I just wondered if low albumin might be common in chronic fatigue syndrome, thereby possibly explaining the low blood volume?

Interestingly, both TNF-alpha and IL-6 inhibit the production albumin (and these two cytokines are often high in CFS).
 
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richvank

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Low Blood Volume in CFS Caused by Low Albumin?

Recently I came across something that might relate to (or even explain) the low blood volume often found in CFS patients.

Apparently, albumin is required in the blood to ensure that the water component of the blood does not escape into the body tissues. Osmotic pressure has the tendency draw the water out of the blood stream, and into the tissues. The role of albumin is to set up a counter-pressure, called oncotic pressure, which has the tendency to pull water back into the blood stream. So the water volume in the blood is set by the balance of the opposing pressures: osmotic and oncotic.

Low serum albumin (hypoalbuminemia) levels are a marker of disease. I just wondered if low albumin might be common in chronic fatigue syndrome, thereby possibly explaining the low blood volume?

Interestingly, both TNF-alpha and IL-6 inhibit the production albumin (and these two cytokines are often high in CFS).

I believe albumin levels can be supplemented by eating egg white protein.

Hi, Hip.

I've studied quite a few reports of standard metabolic blood panels from PWMEs/PWCs, and not very many have had albumin levels below the reference range, but I have seen it before. In those cases, the person's protein status has been quite low, based on the total protein level in the blood, also on this type of panel, and on amino acids levels, when testing is available.

I think that what goes on in ME/CFS is that carbs and fats cannot be used for fuel by the mitochondria at normal rates, because of a partial block at aconitase in the Krebs cycle, due to glutathione depletion.
As a result, the cells turn to burning protein (amino acids) for fuel at a higher than normal rate, because these can enter the Krebs cycle downstream of the partial block. If the digestive sysem is not functioning well (which is true in most PWMEs/PWCs) the absorption of amino acids can be lower than normal. This combination can result in a low protein status in the body. Over time, the Krebs cycle metabolites also drop, as seen in urine organic acids panels, because the amino acids levels are not high enough for normal anaplerosis (backfilling of the Krebs cycle metabolites by amino acids).

I think the solution to this is a combination of support for the gut, amino acids supplementation, and treatment to lift the partial block in the methylation cycle, which will bring glutathione back up to normal and restore normal metabolism of carbs and fats by the mitochondria. More information about this can be found at http://www.aboutmecfs.org/Trt/TrtGSHIntro.aspx

Best regards,

Rich
 

richvank

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Hi Rich

Do I understand right that what you are saying is this low protein status may cause lower levels of albumin?
Hi, Hip.

Yes, albumin is normally the dominant protein in the blood. When the body is protein-deficient, the liver has difficulty making enough albumin to put into the blood.

Best regards,

Rich