New Dysautonomia Link I'm Working On: The Link Btwn Dysfunction Of Sympathetic System And Endocrine System

[RichGotsPots]

Here is something that look interesting it shows the link between cortisol and catecholamine problems.

"An abnormally flattened circadian cortisol cycle has been linked with chronic fatigue syndrome,^[2] insomnia^[3] andburnout.^{[4]" MAYBE THEY SHOULD ADD DYSAUTONOMIA :-)}

http://en.wikipedia.org/wiki/Hypothalamic%E2%80%93pituitary%E2%80%93adrenal_axis

"At the hypothalamus, fear-signaling impulses activate both the sympathetic nervous system and the modulating systems of the HPA axis."

"Increased production of cortisol mediates alarm reactions to stress, facilitating an adaptive phase of a general adaptation syndrome in which alarm reactions including the immune response are suppressed, allowing the body to attempt countermeasures." This would explain why some of use have lowered immune systems.

"Glucocorticoids have many important functions, including modulation of stress reactions, but in excess they can be damaging. Atrophy of the hippocampus in humans and animals exposed to severe stress is believed to be caused by prolonged exposure to high concentrations of glucocorticoids. Deficiencies of the hippocampus may reduce the memory resources available to help a body formulate appropriate reactions to stress." Florinef is partially a Glucocorticoid...

"

Stress and disease

The HPA axis is involved in the neurobiology of mood disorders and functional illnesses, including anxiety disorder, bipolar disorder, insomnia, post-traumatic stress disorder,borderline personality disorder, ADHD, major depressive disorder, burnout, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, and alcoholism.^[5] Antidepressants, which are routinely prescribed for many of these illnesses, serve to regulate HPA axis function.^[6]

Experimental studies have investigated many different types of stress, and their effects on the HPA axis in many different circumstances.^[7] Stressors can be of many different types—in experimental studies in rats, a distinction is often made between "social stress" and "physical stress", but both types activate the HPA axis, though via different pathways.^[8] Several monoamine neurotransmitters are important in regulating the HPA axis, especially dopamine, serotonin and norepinephrine (noradrenaline). There is evidence that an increase in oxytocin, resulting for instance from positive social interactions, acts to suppress the HPA axis and thereby counteracts stress, promoting positive health effects such as wound healing.^[9]"

[Mytwogirlsrox]

This would explain why my symptoms are gone when I'm on an SSRI. Also why my symptoms started after pregnancy and cessation of breast feeding! Such HUGE hormone & endo shifts.

Ive always kinda felt like this is the case for me, since I grew up a healthy, active woman till pregnancy .

[Mytwogirlsrox]

So was just thinking though, that Drs prescribe florinef for us potsys which has properties of both a mineralcorticoid and glucocorticoid

http://www.rxlist.com/florinef-drug.htm

So if you read about each corticosteroid you see that florinef has both properties of Salt and water retention (mineralcorticoid)

http://en.m.wikipedia.org/wiki/Mineralocorticoid#section_1

AND Anti-inflammatory properties (glucocorticoid)

http://en.m.wikipedia.org/wiki/Glucocorticoid

Makes me wonder if it helps a broad range of us POTSys because of it's dual nature. Anyway, I know it's not exactly what your talking about , but it triggered something in my little brain lol

[issie]

I've been down this path and it is a hard one to convince a doctor of. Unless you have true adrenal failure - most docs won't treat you for a problem. There are some alternative docs that do saliva testing and will treat accordingly - but a endocrinologist - just won't go there. I've known since I was in my 20's that I have an adrenal function issue (adrenal exhaustion - one other term for it). I tried oral cortisol a couple of times and also have to have cortisol for all my surgeries or I crash big time. But, getting a doc to look any further is nearly an impossible task.

I do think there is something to this and do believe that adrenal dysfunction (on what axis - not sure) is a problem with us with POTS and CFS - but, proving that will be hard.

Hope you figure out a way to do this Rich. Keep us posted. I went down this route years ago.

Issie

[Relax86]

Unless I'm not reading/understanding this correctly then this explains why hydrocortisone helped me get partly thru my flare.....and now it seems midodrine is also making some progress. I wish I could have tolerated the fludro but the timing of my attempt I think was bad - as I was very sick and my body was rejecting everything... I was also very frightened and didn't understand POTS. God forbid this happen again - I would always turn to cortisone again in addition to a better trial attempt of fludro. This post/topic is very meaningful to me so thank you Rich for posting

[peregrine]

Issie - interesting you should mention the saliva testing, my physical therapist (who's super integrative) mentioned that today as well and says he knows someone who does it here in Seattle. If the tests are positive for wacky cortisol, what are the options as far as treatment?

[Birdlady]

I'm a weird one who is on HC and it didn't do anything for my POTS. My standing HR's are just as bad, if not worse nowadays. 160 is the normal for me....lol But there was a night and day difference when I started it. All of the fatigue, nausea and general cruddy feelings went away. An Endo would never have let me take HC... I am under the care of a natural doc.

I'm not real sure how accurate saliva tests are though. I've seen a lot of weird results.

[issie]

I guess what they do depends on whether or not your levels are high or low. If too low - which is what one would most expect - then they may put you on cortisol - usually Cortef. I would personally want to try a transdermal form of it - as it would by pass the liver and go more direct into the blood stream. I think I would have less issues with that form because of my liver detox pathway problems.

Issie

[RichGotsPots]

If my theory is correct, the issue won't be fixed by simply taking a cortisol replacement like a steroid. See it's all about digging deeper and deeper on the pathways to the process of what's causing the dysfunction. It's just about putting the pieces together on why our bodies fight or flight protection is on the fritz. Cortisol I believe plays a role but just like catecholamines are not steadily out of sorts same goes for Cortisol. It's just a disabling dance between all of these chemical reactions in our body. Why I implicate HPA is because it's dysfunction could explain why many of us that weak immune systems among other issues.. If we do find a cure for this, its going to have to be a multi-level attack of like 5 treatments. But my hope is that for the future when people can catch it early we can figure out how they can stop it before it progresses too.. Does every chemical and every action in the body come from the brain or do they have their own intuition, so to speak from DNA instructions.. "The ANS is controlled by brain areas such as the anterior cingulate cortex, the insula, the amygdala, and the hippocampus (Critchley et al., 2002, 2003; Matthews et al., 2004)."

[RichGotsPots]

"The locus coeruleus (also spelled locus caeruleus or locus ceruleus) is a nucleus in the pons (part of the brainstem) involved withphysiological responses to stress and panic."

"The locus coeruleus is the principal site for brain synthesis of norepinephrine (noradrenaline). The locus coeruleus and the areas of the body affected by the norepinephrine it produces are described collectively as the locus coeruleus-noradrenergic system orLC-NA system.^[3] Norepinephrine may also be released directly into the blood from the adrenal medulla."

Part of figure the pathway is to figure out where all the dysfuctional instructions are coming from, is it the Locus Coeruleus?

[RichGotsPots]

The locus coeruleus is activated by stress, and will respond by increasing norepinephrine secretion, which in turn will alter cognitive function (through the prefrontal cortex), increase motivation (through nucleus accumbens), activate the hypothalamic-pituitary-adrenal axis, and increase the sympathetic discharge/inhibit parasympathetic tone (through the brainstem). Specific to the activation of the hypothalamo-pituitary adrenal axis, norepinephrine will stimulate the secretion of corticotropin-releasing factor from the hypothalamus, which inducesadrenocorticotropic hormone release from the anterior pituitary and subsequent cortisol synthesis in the adrenal glands. Norepinephrine released from locus coeruleus will feedback to inhibit its production, and corticotropin-releasing hormone will feedback to inhibit its production, while positively feeding to the locus coeruleus to increase norepinephrine production.^[5]

^{Notice how HPA plays a role!}

[Birdlady]

The HPA axis dysregulation theory has been around for some time especially in the CFS communities. All I can say about it is what I've been through and I wasted about 2 1/2 years on trying different types of hormone replacement. In the end, if you have HPA axis dysregulation, I don't really see what you can do about it except replace the end result hormones you are missing. The HPA axis does soo many things and I don't know how we could ever replace it all.

Here's a study you may find interesting.

http://jcem.endojour.../86/8/3545.full

Even though HC did not cure my POTS, wow did it bring me up to a much higher level of functioning. I really think I was dying there for a while.

[issie]

Hmmmm, would irregular blood vessels in the pons cause this issue? I've had this issue for awhile. They found this when they found my meningioma in my left frontal lobe. I have vascular issues all over my body ----including my brain. Dr. G told me that if I have a stroke it will probably be a hemorrhage - not what you want to hear - cause the chance of survival or lack of brain damage - isn't very good with that type stroke. (Not sure why he felt the need to tell me that. I think I would had rather been ignorant of that little piece of information.)

Issie

[issie]

Interesting study Dana. My sis is going to have her adrenals tested next week becaue of CFS. I just sent her that article. Thanks for posting it.

Issie

[RichGotsPots]

Dana I thought you were staying offline for awhile lol it's so addictive I know.. Anks for the article though!

I really think the treatments are not attacking the root causes. Take a car for example, imagine it can't pass inspection because it's co2 emissions are too high. It would be hard to bring it to standard by using better quality gas, usually you have to fix the exhaust. The problem in our case is how do you fix the organ causing the dysfuction? I don't think supplements are the key. We either need a medicine that will repair the organ to previous normally functioning state or to get a regulating device, similiar to a pacemaker for the heart.. Another way to describe it is, with my own blood pressure issues. I have high BP when upright, normal when laying and when walking or standing for 5 minutes I have low BP. So how can any doctor ever give me a med to lower my BP? When I walk it will be too low. If I get a BP med to raise it, when I stand it will be too high. All the meds we need are to stabilize these dysfunctions, and if we are lucky repair the damaged cell or organ causing them.. This is where I don't believe we are close yet or even closing in... Sometimes we see some benefit by using low doses, but nothing is repairing or stabilizing. They may seem to be stabilizing because we all fall on different levels. So someone may have mostly low BP, so using a BP raising med for the most part helps. But then you take that med in combo with a bb to lower the hr and boom it's too low. In theory on of the balancing acts that I most admire but seem to work seldom it with a bb and midodrine at the same time, one lowers BP one raise and it's a balancing act and doing two good things at once. Bb lows hr and midodrine raises BP and prevents pooling... Too bad they both come with major side effects and are seldom tolerated for a long time. But again nothing is getting repaired and only a few things are getting stabilized.... This approach needs to go further in my opinion because it has potential....

[issie]

Well Rich, have to disagree with you on one of your above statements. Our body's are made up of minerals, vitamins, amino acids, enzymes etc. These are what our beings are composed of. We are not made up of synethetic man-made medicines used to tweak different systems. Find out where our genetic make-ups are lacking - replace those things and maybe the dysfunctions will some-what correct themselves.

Issie

[Birdlady]

I had to get away from facebook. I am on multiple health groups on there it was driving me literally insane. Here I can choose to look at threads that interest me. On Facebook, my entire news feed was of sick stuff. It was too too much. I took notifications off for everything, so that has helped.

[issie]

I had to get away from facebook. I am on multiple health groups on there it was driving me literally insane. Here I can choose to look at threads that interest me. On Facebook, my entire news feed was of sick stuff. It was too too much. I took notifications off for everything, so that has helped.

I, for one, am glad you decided to come back here!

Issie

[Tachy Phlegming]

That all makes great sense Rich. I would have thought the same (would have=did). Lucky for me, it didn't work out that way.

I take one which in theory raises bp and one which lowers. And here's the trick. It has seemed to all work out. I might not have expected it to as well as it has ...

In fact, if what I take lowers my bp too much, it is a world of difference from when my body does it on its own. I feel nothing if a med lowers me a little too much.

Yes, those are the best parameters we have to use to measure how we are doing. But hey, who among us is going to complain if we feel good enough despite the numbers?

When you look at these meds to see what you want to ask for, you will see certain things which make you say uh-oh, don't want that (as you have done) ... but for some of us (and I'd bet for you), if you just look for the ones with the best probabilities for success (you like most of what you see), you might be really in luck. If at first you don't succeed, well, there's trial and error. No fun but it sounds like some of the people on here have ended up doing that and finally found meds which do at least something ...

[issie]

I'm going to post this as a regular thread line --- but, this doc agrees that a multiple approach with meds is the way to go. This is one of the best videos I've seen on the autonomic system response and pain connected with sleep.

Hummm. The link didn't work. Let me see if I can get it another way.

If you go to this site, it is under Clinical Autonomic and Sleep Disorders in EDS - Dr. Alan Pocinki - click on that link.

http://edstoday.org/resources/eds-videos-educational

Issie

[corina]

Issie, it might be me but I didn't get it working. I got to the video but didn't get it playing.

[issie]

If you got to the bottom of the video - a time line should pop up for you to click on the button. I was able to pull it up, but my computer tried to block it out and say it wasn't safe. But, I didn't have any problems getting it to come up after I bypassed my safety. I didn't have it being blocked earlier today - and have been watching all the videos that are there and they are very informative.

Issie

[RichGotsPots]

That all makes great sense Rich. I would have thought the same (would have=did). Lucky for me, it didn't work out that way.

I take one which in theory raises bp and one which lowers. And here's the trick. It has seemed to all work out. I might not have expected it to as well as it has ...

In fact, if what I take lowers my bp too much, it is a world of difference from when my body does it on its own. I feel nothing if a med lowers me a little too much.

Yes, those are the best parameters we have to use to measure how we are doing. But hey, who among us is going to complain if we feel good enough despite the numbers?

When you look at these meds to see what you want to ask for, you will see certain things which make you say uh-oh, don't want that (as you have done) ... but for some of us (and I'd bet for you), if you just look for the ones with the best probabilities for success (you like most of what you see), you might be really in luck. If at first you don't succeed, well, there's trial and error. No fun but it sounds like some of the people on here have ended up doing that and finally found meds which do at least something ...

Seems to be divided, I know where they got better and can tolerate their pots, I know some that had horrible experiences and now wont try anything and lastly I know some that have been trying for over 10 years and still havent found much to help yet after 10 years they just got better on their own... Oh one last group got better from a med or meds and after 2-3 years wasnt helping at all...

[Tachy Phlegming]

From your communications on here, did you come across a pattern with certain meds which worked for some people for 2-3 years and then stopped? I'd be interested in knowing if there were particular meds which worked that way. I've sort of seen on here that beta blockers can come and go and certain anti-depressants ...

My sense is that some of the problem for people who have been trying forever (10 years) is that people can't get some or all of the meds they would wish to try. When you asked, do you know whether they asked for meds they couldn't get? It was hard for me to get certain meds.

I'm just impressed with some of what you have gotten in testing, am really hoping that you get meds which do a lot better than 2-3 years, and just reading about how carefully you think through everything (yes, it's important to be exhaustive even where it looks like a totally different area of medicine) think there has to be a good possibility that you can do it.

[ramakentesh]

Some of this has been looked at in unpublished data. There is one research group (your favourite Rich) which is examining hypothalamus activity in CFS and POTS.