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A couple of things I ran across recently that cause POTS

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
Maybe y'all know this but apparently dehydration can cause POTS symptoms as can low adrenal function. Here's what I find about adrenal function (see #4 regarding POTS symptoms):

To explore adrenal issues, read up here:http://www.stopthethyroidmadness.com/adrenal-info/faq/

1) What are the symptoms of adrenal problems? Fatigue, anxiety, light-headedness, shakiness, dizziness, nausea, and difficulty dealing with stressful situations. Dr. Rind says “Most people have a mixture of poor thyroid and poor adrenal function rather than purely one or the other, and therefore a mixture of symptoms”. He also says that poor thyroid and/or adrenal function is the most common cause of low metabolic energy. Metabolism is defined as the chemical changes in living cells by which energy is provided for vital processes (Websters). Please refer to this chart of symptoms http://www.drrind.com/therapies/metabolic-symptoms-matrix

2) How can I tell if my problems are adrenal, or thyroid? The body’s temperature drops as the metabolism drops. Low temperatures are caused by low thyroid. If the adrenal hormone cortisol is low, the average daily temperature will fluctuate when comparing one day’s average to the next. (See Discovery Step Two, number Four, here.) We are not talking about temperature changes during one day – it is normal to wake up with lower temperatures and hitting a peak in the later afternoon. Take your temperature 3 hours after waking, again 3 hours later, and again in another 3 hours. You average those 3 readings to get one single number for that day. Please read Janie’s page http://www.stopthethyroidmadness.com/temperature/ and follow her link to Dr. Rind. Look at his examples and download his blank chart. Begin filling in your temperatures. If you post a question about your dosing, someone is going to ask about your temps.

3) What is Adrenal Insufficiency? In 1855, Thomas Addison first described adrenal insufficiency, which was subsequently named after him. Originally, tuberculosis was the most common reason for the adrenal gland failure. Currently, Addison disease most commonly results from autoimmune destruction of the adrenal gland. The adrenal hormones Cortisol and Aldosterone are vital for life, so Addison’s disease can be fatal.
If you search for information on Addison’s disease, you fill find quotes such as this one: “Adrenal insufficiency occurs when at least 90 percent of the adrenal cortex has been destroyed.” http://endocrine.niddk.nih.gov/pubs/addison/addison.aspx

4) Is Adrenal Fatigue the same thing as Adrenal Insufficiency?
No. The person with Adrenal Fatigue may have less severe symptoms, and there are lots of shades of gray. Here is an example from a medical site: “A significant number of patients with partial loss of adrenal function (limited adrenocortical reserve) appear well but experience adrenal crisis when under physiologic stress (eg, surgery, infection, burns, critical illness)” http://www.merck.com/mmpe/sec12/ch153/ch153b.html
A person with a more serious case of adrenal fatigue may have chronic symptoms of fatigue. They may have symptoms associated with low blood sugar (one of cortisol’s jobs is to help regulate glucose). They may feel light headed upon standing, as another function of cortisol is to maintain blood pressure.
Dr. Ron Kennedy says “Addison’s disease is so rare, and adrenal fatigue so common, that I prefer to spend most of our space here on the latter. This syndrome is marked by loss of energy with the experience of fatigue and oversleeping”. http://www.medical-library.net/content/view/75/41/
Dr. Tintera was making comments like this way back in 1955 “a former hypothesis – that the adrenal cortex functioned according to the classic “all or none” law – is repudiated as being contrary to both clinical and experimental evidence. Hypoadrenocorticism may be congenital or acquired, complete or partial. The two former subdivisions frequently fail of recognition.” http://www.fred.net/slowup/tint01.html
Many members discovered their adrenal fatigue when they started thyroid medication – because the increased metabolism strained the adrenals. http://www.stopthethyroidmadness.com/things-we-have-learned Doctor Broda Barnes describes this in his lectures “And the thing that we have to think of very often, is a partial adrenal deficiency too. If the blood pressure of a patient is 100 systolic or below, I hesitate, in fact I won’t start them on thyroid, without giving them 5mg of prednisone at the same time. Because, if you raise the metabolism a little as we’re doing with the thyroid, you also have to have a little more secretion from the adrenal. The normal gland, can furnish it and do all right. But if the blood pressure is too low in the beginning, the chances are that this patient is going to get worse, about four days after you start them on thyroid, they will become worse than they were.” (5 mg of Prednisone is = to 20 mg of hydrocortisone)

5) How do I test the condition of my adrenals? Please read what Janie says here http://www.stopthethyroidmadness.com/adrenal-info/ If your doctor insists on blood tests for cortisol, they are only going to show the combo of bound and unbound. Doesn’t work. http://www.stopthethyroidmadness.com/recommended-labwork/

etc. (there is lots more)

And here is what I found on dehydration:http://www.nymc.edu/fhp/centers/syncope/orthostatic_intolerance.htm
A simple and common example of this is the finding of postural hypotension and postural tachycardia when dehydrated.

Wiki:http://en.wikipedia.org/wiki/Orthostatic_intolerance

Physicians who specialize in treating OI agree that the single most important treatment is drinking more than two liters (eight cups) of fluids each day. A steady, large supply of water or other fluids reduces most, and for some patients all, of the major symptoms of this condition. Typically, patients fare best when they drink a glass of water no less frequently than every two hours during the day, instead of drinking a large quantity of water at a single point in the day.[8]
-------
The latter also lists meds for OI you can look up if interested,.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
Here is a website that says: Dehydration can be a cause of fatigue when you have Chronic Fatigue Syndrome.
http://www.fibromyalgia-natural-relief.com/chronic-fatigue-syndrome-dehydration-and-pain

I read that 95% of CFSer's have POTS. So now I am curious...do 95% of CFSers have hypo/achlorhydria?

For me there seems to be a link between dehydration and blood pressure issues that happens only (n the past) during PMS and (in the present) during allergy season. At these times I have hypochlorhydria (if not achlorhydria). My body does NOT want to drink water - I crave acidic things because I do not make enough stomach acid, whereas water dilutes HCL. So though the trigger MAY BE dehydration, the cause of the dehydration, for me, appears to be hypochlorhydria. During allergies for some reason (idk) I appear to use up massive quantities of zinc (more than I feel comfortable supplementing). zinc and P5P are required to make HCL. I supplement 100mg zinc picolinate (most absorbable form) during allergy season and it helps me breathe and function longer, but eventually allergy season overwhelms this. I begin to find that I crave salt and eventually my adrenal gland goes out and I get low blood pressure (despite genetic high blood pressure). During low blood pressure I have to eat salt or pass out.

In the past, during PMS, I would be so anemic that I would drink 20c of coffee/day to keep my brain working. I craved salt all the time and indeed kept a salt lick from the salt mines at Salzburg at my desk and used it. Without salt I would get brain fog and pass out. In fact, standing made me black out during PMS and I took at least a day off, if not 3, every month (used my vacation days until they ran out, then sick days...luckily it often happened on weekends). I believe I induced adrenal exhaustion due to the fact that there is a DHEA:cortisol ratio of 10:1 which, if exceeded by too much cortisol, causes adrenal exhaustion (more stress than can handle. Coffee raises cortisol (2c.=33%). PMS also caused hypochlorhydria for me, don't know why, and so I never wated to drink water until I actually became crabbed up from too much caffeine (so every night I would drink a liter of water or more with 400-600mg calciul-magnesium citrate and 1g. C to rehydrate). I no longer need to drink so much coffee and I take DHEA so that I can tolerate SOME coffee, so I don't suffer from this anymore. (Menopause is PMS forever and at 50 until I took DHEA I could not tolerate coffee at all, now I take 1-2 c/day normally).

I am just putting this out as a thought starter - to think about REASONS for dehydration. We don't just stop drinking water for no reason. Zinc might be used up if the immune system is heavily in play fighting infection (idk, only guessing) causing hypochlorhydria. I am just speculating that this dehydration that is one cause of POTS can be caused by hypochlorhydria which makes you not inclined to drink as much water. What do you think?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
It is well known that low blood volume is involved in most POTS cases so its no surprise that dehydration could set this issue off.

"I read that 95% of CFSer's have POTS."

Curious where that came from. I do not believe that 95% of those who have ME/CFS have POTS. What is true thou (from research) is that 95% of those who have ME do have autonomic dysfunction of some kind or another. For many this will be not POTS but rather NMH. There are 5 different kinds of autonomic dysfunction (going by Dr David Bells list) we can get with this illness.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
What is NMH? Is inability to focus eyes on a moving object an autonomous dysfunction? (that would be me)

The autonomic system is a subconscious system, it controls your blood pressure and heart rate (and things like your body temp) so these screw up if you have autonomic dysfunction eg the persons body system cant regulate itself properly. NMH is neurally mediated hypotension (a sudden abnormal drop in BP sometime when just standing).

For more on the autonomic dysfunctions seen in ME and the 5 types .. see http://www.oiresource.com/tresults.htm (note some things have slightly changed since that was written eg POTS is now defined as a 30bpm increase and not a 28 beat one)
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
What is NMH? Is inability to focus eyes on a moving object an autonomous dysfunction? (that would be me)

I see that taniaaust1 has already answered your specific question about NMH (Neurally Mediated Hypotension). This condition is sometimes called Neurocardiogenic Syncope or Vasodepressor Syncope. Actually, when it comes to autonomic dysfunction doctors often disagree on some of the categories, e.g., what names to use and how they overlap.

Here's an extract from an article about Orthostatic Intolerance ( http://www.research1st.com/2011/06/19/the-outs-and-ins-of-oi/ )
There are many types of OI. When you round up experts who study the autonomic nervous system (as we did at one of our research symposia in the year 2000), they have trouble agreeing on the names and definitions for the various types of OI. (Does that sound familiar?) OI and other forms of dysautonomia are common in other conditions like MS and Parkinson’s; it also occurs in less well-studied conditions like Ehler’s Danlos Syndrome, Marfan syndrome and Shy-Drager Syndrome. So, it’s not unique to or diagnostic of CFS.

Here are some more links that might help:

Johns Hopkins CFS/OI Handout
http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

Article on OI by Dr. Stewart at emedicine.com
http://emedicine.medscape.com/article/902155-overview

POTS Place (patient web site, also has NMH/NCS info)
http://dinet.org/
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
Ok, prolly what I actually read was that 95% of CFS patients had OI. To me OI=POTS. idk, idk. Is there a point in identifying 5 different types of OI? To me OI says it all. If there is a difference in treatment then it makes a big difference, of course. My brain works funny. I am a speed reader meaning I do not actually read most of the words I 'read' and concepts go into my head more than words, so if I think they are the same, that concept goes into my head (not the word) and later I could never tell you which word was really used.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
There can be differences in treatment for the different kinds of OI... eg one probably wouldnt want to give Clonidine (which is a drug used for hypertension) to a person who has NMH (low BP) but Clonidine can be quite useful in those who have hyperadrenic POTS to lower the high adrenaline due to it.

If someone was collapsing due to having narrowing of the pulse pressure, I have not a clue how they'd treat that, it probably isnt treatable where as something like POTS is often helped with drugs (Florinef if the common one used to increase the blood volume issues involved)

Anyway, knowing what kind of OI you have is very important.

If one says a person has just OI that could also mean that one doesnt have any of the actual autonomic issues showing up. OI is just a word used for those who have issues with standing.

The 95% study I think you are refering too, I think was a CFS study in which nearly everyone in it was found to have actual autonomic abnormality showing, I think it was NMH mostly found in that study or they found nearly all to have (I could be wrong thou but Ive previously read the study and I think that is what I remember). They suggested that the autonomic abnormality should be being used to help define ME/CFS.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Inability to focus could be ocular ataxia or low blood sugar. Ocular Ataxai
can be associated with gluten ataxia which may respond to the gf diet.
Low blood sugar used to affect my vision regularly until I learned
to keep my glucose up. I have to eat something sweet every 20 - 30 minutes
if I'm active. Like doing laundry or walking.

I bumped a thread i started last year that may explain our dehydration too.
. It starts out with "solute transporters" and it's in the leaky gut section.

tc ... x
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I Googled ocular ataxia and found a thread I started on the braintalk forum back
in 2007. It had some great links in it.

I tried to update the thread with the blood glucose info but that thread is
closed. At any rate, the things i use to increase bg are oj, 2 - 3 dextrose tablets, coffee
with sugar ... A stickers bar is helping me nowadays too.

I've tried healthier sugar choices but that didn't work as well for me. I tried
fixing my bg problem with a low carb diet, etc and nothing worked.

My gtt plus insulin shows that i overproduce insulin so I know why it's low. I
just don't know enough.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
Inability to focus could be ocular ataxia or low blood sugar. Ocular Ataxai
can be associated with gluten ataxia which may respond to the gf diet.
Low blood sugar used to affect my vision regularly until I learned
to keep my glucose up. I have to eat something sweet every 20 - 30 minutes
if I'm active. Like doing laundry or walking.

I bumped a thread i started last year that may explain our dehydration too.
. It starts out with "solute transporters" and it's in the leaky gut section.

tc ... x
OMG! THIS is a REAL CLUE! Because - SURE - I do not drink 8 glasses of water a day - pretty much EVER. I do drink more fluid than 8 glasses a day but some of it is coffee, some milk, some vitamin water, etc. And yet only SOME times (during allergy season now, used to be during PMS also in the past) do I get low blood volume. During PMS it caused me to pass out on standing. But now it simply causes high blood pressure (so must not be as low volume or it would be low blood pressure I am thinking). Drinking a lot of water returns my bp to normal but I am lft thinking that (a) I did not WANT water and (b) why do I suddenly need this water?

Well as far as allergies it is clear to me that I lose zinc fighting them and zic is required to make skin. w/o enough zinc we make skin with larger pores to make the most of the zinc we've got. Larger pores would mean LEAKY! And LEAKY would mean nut just absorbing undigested food (allergy potential) but also in the arteries and veins (skin) volume loss! It makes SENSE!

Still, I can't take an unlimited amount of zinc. So I simply have to get control of my allergies before they use up the zinc. I think y'all could prolly benefit from zinc too - it can be lost fighting any immune system problem. But the real solution is to find out what you are fighting and get rid of it.

I want to say that it has been proven that zinc "closes the crevices (I translate this as pores) in the nose through which cold germs enter". And there were several studies I found when I researched it 15 years ago that said zinc healed leaky gut. However not all of the theory I have built from this has been adequately proven and it is only my theory. For instance zinc also inhibits IgG and I have no idea the mechanism, so it may simply be this effect that brings results.

It may not hurt for y'all to try 50mg zinc picolinate (but make sure you take at least 2g copper picolinate to go with it). It is known that zinc and P5P are required to make HCL. I myself take 100mg zinc during allergy season based on nothing more that it enables me to breathe longer. I know it takes 150mg of zinc for me to be able to breathe when catching a cold but allergy season is much longer and I do not feel comfortable taking that much zinc for that long. I also take 4mg copper picolinate to go with. If 50mg zinc is not enough, I personally would focus on things that kill pathogens, such as maybe oregano (oil of oregano), and try again.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
Inability to focus could be ocular ataxia or low blood sugar. Ocular Ataxai
can be associated with gluten ataxia which may respond to the gf diet.
Low blood sugar used to affect my vision regularly until I learned
to keep my glucose up. I have to eat something sweet every 20 - 30 minutes
if I'm active. Like doing laundry or walking.

I bumped a thread i started last year that may explain our dehydration too.
. It starts out with "solute transporters" and it's in the leaky gut section.

tc ... x
Oh, I am well aware of low blood sugar affecting vision as I have had low blood sugar my whole life. It feels like tiredness in the eyes which causes fuzziness of vision. It does not feel like vision loss so much as that your eyes are just too tired to care. But then I am usually too tired to care either. I controlled low blood sugar my whole life but at different ages had to use ever stronger methods. Anyone with blood sugar problems can see if what worked for me might help them:

ages 0-40 move protein consumption forward in day to consume 20g protein at breakfast (this stabilizes blood sugar even after lunch because protein is slower to digest. Studies now show acid is slower to digest also so apple cider vinegar salad dressing for instance and sourdough bread as opposed to other kinds keep the blood sugar stable).

ages 40-50 rhodiola, high dose. I began to get "undeserved" low blood sugar (despite eating protein at breakfast. I started getting low blood sugar at every shock, such as someone cutting me off in traffic. (This is how a friend became brittle diabetic...she fell on the ice (a shock) and suddenly she was brittle diabetic). I decided I needed adrenal help and studies show that rhodiola increases glycogen stores. It worked for me for 10 years.

Age 50+ I had constant low blood sugar and nothing was helping. I took 50mg DHEA and in 15 minutes (during which I felt like I was going through a fun house mirror) I was sorted out and no low blood sugar. I never get low blood sugar now unless I forget my DHEA.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
So I am left wondering why I would have had low blood volume during PMS. ok, ok, I was losing a lotta blood (fibroid tumors =LOTTA LOTTA) so maybe that's it. But maybe.... well I tentatively believe metallothionein (what you need to absorb zinc and copper) requires hormone to produce it, or to produce much of it. This has either not been proven or I am simply unaware. It is 'known' (I never found where it is proven) that estrogen helps us absorb copper (what about zinc?). Anyway, any OI caused by leaky blood vessels, might be helped by DHEA (which makes estrogen and testosterone and thus potentially makes more metallothionein to absorb zinc and copper). Ask yourself if you make enough stomach acid (and if not could your problem be zinc or P5P?). Ask yourself if you catch colds easily (and if so, if your problem could be zinc?)

If anyone actually knows much about metallothionein, please clarify for us?!!
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Thanks. I'm already taking 25 mg of dhea but I'll increase it.

I tried most of the other things you tried too. I HAVE to eat meat as my protein
source but still nothing I've tried has helped my need for sugar every
20 -30 minutes when active. Honestly I'm excited to know this helps because
I was just living with this symptom for about 20 years thinking it was my stupid
cfs.

fwiw, I'd hoped taking mast cell meds woulda helped more but they affect
my brain too much .

Pain meds with codeine help but that's not something I want to do. I just found
out that Klonopin calms mast cells so I'll be experimenting with low doses
of that soon. I already take this for myoclonus.

tc .. x
 
Messages
23
Here is a website that says: Dehydration can be a cause of fatigue when you have Chronic Fatigue Syndrome.
http://www.fibromyalgia-natural-relief.com/chronic-fatigue-syndrome-dehydration-and-pain

I read that 95% of CFSer's have POTS. So now I am curious...do 95% of CFSers have hypo/achlorhydria?

For me there seems to be a link between dehydration and blood pressure issues that happens only (n the past) during PMS and (in the present) during allergy season. At these times I have hypochlorhydria (if not achlorhydria). My body does NOT want to drink water - I crave acidic things because I do not make enough stomach acid, whereas water dilutes HCL. So though the trigger MAY BE dehydration, the cause of the dehydration, for me, appears to be hypochlorhydria. During allergies for some reason (idk) I appear to use up massive quantities of zinc (more than I feel comfortable supplementing). zinc and P5P are required to make HCL. I supplement 100mg zinc picolinate (most absorbable form) during allergy season and it helps me breathe and function longer, but eventually allergy season overwhelms this. I begin to find that I crave salt and eventually my adrenal gland goes out and I get low blood pressure (despite genetic high blood pressure). During low blood pressure I have to eat salt or pass out.

In the past, during PMS, I would be so anemic that I would drink 20c of coffee/day to keep my brain working. I craved salt all the time and indeed kept a salt lick from the salt mines at Salzburg at my desk and used it. Without salt I would get brain fog and pass out. In fact, standing made me black out during PMS and I took at least a day off, if not 3, every month (used my vacation days until they ran out, then sick days...luckily it often happened on weekends). I believe I induced adrenal exhaustion due to the fact that there is a DHEA:cortisol ratio of 10:1 which, if exceeded by too much cortisol, causes adrenal exhaustion (more stress than can handle. Coffee raises cortisol (2c.=33%). PMS also caused hypochlorhydria for me, don't know why, and so I never wated to drink water until I actually became crabbed up from too much caffeine (so every night I would drink a liter of water or more with 400-600mg calciul-magnesium citrate and 1g. C to rehydrate). I no longer need to drink so much coffee and I take DHEA so that I can tolerate SOME coffee, so I don't suffer from this anymore. (Menopause is PMS forever and at 50 until I took DHEA I could not tolerate coffee at all, now I take 1-2 c/day normally).

I am just putting this out as a thought starter - to think about REASONS for dehydration. We don't just stop drinking water for no reason. Zinc might be used up if the immune system is heavily in play fighting infection (idk, only guessing) causing hypochlorhydria. I am just speculating that this dehydration that is one cause of POTS can be caused by hypochlorhydria which makes you not inclined to drink as much water. What do you think?

I know this post is quite old, but I stumbled across it looking for POTS info.

A new subset of POTS caused by mast cell activation is being looked into. Ppl have flushing or tingling in their chest and face sometimes and their blood pressure may actually go high during episodes.

When you said you get worse during allergy season and previously leading up to your period, it made me think of this form of POTS because allergens activate mast cells via IgE antibodies, but so do estradiol & estrone.

Those two forms of estrogen are at their highest levels a week before your period. If you had fibroids & really heavy menstrual bleeding, it's likely you make a lot of estrogen, so your mast cells would likely be more active before your period than most.

If you havent tried them, mast cell stabilizers like ketotifen or luteolin might be worth a shot.
 
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