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Dysautonomia Centers???


MamaTrain
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Good news indeed!

I am particularly gratified by the article's connection between hypoglycemia & dysautonomia. I had never seen it described that way before. BUT, it exactly explains what happens to me. I seem to be in remission right now from that particular symptoms (knock on wood!)- but I wonder why my endocrinologist didn't know about that? I may write to the author to find some of her research info re. hypoglycemia and dysautonomia & pass it on to my endocrinologist.

Thanks for sharing!

Julie

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Hi Julie-

I appreciated alot about the article but the hypoglycemia part was very interesting to me too! It was explained to me that when all that is happening (glucose-insulin release when you eat) that the body releases bits of epinephrine and some people (like those with a really messed up nervous system) can be SO sensitive to it that it gives them this little rush of jittery ness and heart palps and or racing. I dont know if that's really true but it could explain why episodes occur when I eat and when I am really hungry or even in the middle of the night when I wake up 2am! :-) It's just very nice to have other to talk to about it cause NO ONE understands this unless you have gone through it yourself! Have a splendid day!

KC

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My mother handed me an article in the health section of the Washington Post. It discussed mitral valve prolapse syndrome and its symptoms. I had many of them. The rest is history.

But.........

As far as I know, no doctor or cardiologist ever said I have mitral valve prolapse. (My sister has mitral valve regurgitation and needed surgery to fix it.)

So, I'm a bit confused about the "mitral valve prolapse" connection?! Do we all have that? Nobody has said that I do.

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Yes, I am also confused about the MVP connection. I know some people with MVP have autonomic dysfunction, but it is not how POTS is diagnosed. I also have never been told that I have it. I am pretty sure I asked my EP several years ago and he said I do not have it.

I also noticed that she developed gestational diabetes (in her pregnancy where she developed dysautonomia). Is there a link there?

I think we need to keep in mind this article is about someone's personal experience, not a research article, not written by a physician or researcher...

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I think the the author of the article was just talking about her personal experience but it seems like people get the dysautonomia from alot of different factors. I have read it can come from having a bad viral infection to having breast implants done! I read everything with the thought of what can I learn from this. I learned that there are centers being built to treat autonomic disorders and that is fantastic for all of who know something is wrong but cant get the right care! My doctor doesnt understand it but tries to be as helpful as he can. It is a baffling condition and anything positive I read just makes my day! :rolleyes:

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True about the author sharing her own experience, BUT I can't help but think that she had SOME scientific basis on which to share the hypoglycemia theory. I plan to write to her & find out. I will share that info with you.

The closest theory I had read, prior to this was that dysautonomia caused our GI tracks to inexplicably s-l-o-w down OR s-p-e-e-d up. When that happened, our insulin had a hard time keeping up with the irregularity and hypoglycemia resulted.

MomtoGiuliana, I am DXed with reactive hypoglycemia via a GTT. I know that POTS can mimic those symptoms, but many of us actually experience them as well. (I suspect many others do too....just haven't done appropriate testing, etc.) I have learned that eating appropriately: complex carbs, no sugar, etc. makes a huge difference.

There has always been a connection between mitral valve prolapse and dyautonomia. The symptoms of MVP are eerily similiar to those of an autonomic dysfunction & the treatment (back in the day) was extra water and salt. I saved an old MVP article from a women's magazine- 20 years ago. I was DXed with MVP years ago, but since then more precise technology has come up and I was told I DON"T have MVP after all. I think we've discussed that here. Many of us were told we had it, re-tested, and then told we don't. There is even a MVP Treatment Center (somewhere in the US) that treats dysautonomia....maybe Alabama.

I understand that this is just one woman's story...I still want her research on hypoglycemia. Very interesting!

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When I first read this thread, my jaw dropped.

1. It's relatively old news (2007).

2. It's not like a major research center, one of the few treating autonomic system disorders, would publish fallacy.

Autonomic Disorders and Mitral Valve Prolapse Center

http://www.mvprolapse.com/dysautonomia.html

http://www.mvprolapse.com/treatment.html

Yeah, there is a blood sugar control issue here. POTS doesn't mimic hypoglycemia - hypoglycemia is part of the metabolic dysregulation, a pantheon of altered pathway states - the 'family' of autonomic system diseases.

Autonomic disorders are *largely* familial rather than being caused by a viral infection. The viral infections, extended bed rest - that tipped the scales in favor of overt symptom emergence.

The primary issues are genetic in origin, but not the way you're thinking.

To understand dysautonomic states, we'll need to think about receptors - nuclear receptors. And epigenetics. And antioxidant status and it's maintenance.

POTS and an assortment of other autonomic disorders are very likely to be epigenetic in origin - a problem of silencing of genes (many of them regulated by key nuclear receptors) that are turned on and off as you progress through key organism developmental stages.

The nifty part is this: we have amazing neural plasticity.

We can, to an extent, manipulate nuclear receptors and antioxidant status by diet, lifestyle, supplements - and by understanding the role of methylation status in human health and reproductive fitness.

You've already got the important bits embedded in many, many threads here - technical material and lots of observational reporting.

We should start connecting the dots.

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Let me bring in my two cents from what I've read over the last few years regarding sugar and cats.(catecholamines--epinephrine/norepinephrine).

For instance, someone with a pheochromocytoma has a tumor that puts out too many cats., either one or the other, or both. This in turn will cause your blood sugar to rise. With a pheo, you can have a problem with your aldosterone/renin system that could leave you with a lower blood volume.

In diabetics, their sugar is high, and their body is urinating large amounts of urine to get rid of the sugar. This could make them dehydrated.

Then, for instance, in someone with an insulinoma(insulin-producing tumor of pancreas) they spew out way too much insulin, so their blood sugar will drop low. When this happens, the body sends off alarm bells via the cats. and they will in turn cause the body to bring the sugar back up(hopefully!). And this can go on off/on all day and in the nighttime--your b/s drops and the cats. show up to raise it, in the meantime causing you nighttime palpitations, heat surges, etc. I would assume this might also cause these people to have lower blood volumes.

I know I've had low blood sugar for about 15 years and in the last six months it has become harder to control, even though my diet has not changed. I am actually being evaluated for reasons why my low b/s has become harder to control. We are looking into the possibility that I might have an insulinoma. It sure does run my life.

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"You've already got the important bits embedded in many, many threads here - technical material and lots of observational reporting.

We should start connecting the dots."

Welcome! Please don't be vague. My brainfog won't allow for medical-sudoku right now! If you have a better way to deal with all this, speak plainly! Postulate your theory and pick a side! There are about as many facets of dysautonomia here for a very, very large diamond, so let's have it!

Not meaning to be grumpy, but I've had enough double-talk from doctors who are supposed to know what they are looking at and have only made it worse. If you have some semblance of control over the monster we all grapple with, please enlighten us!

I am suffering from my post-exercise malaise, so please accept my true apology for any lack of courtesy.

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When I first read this thread, my jaw dropped.

1. It's relatively old news (2007).

2. It's not like a major research center, one of the few treating autonomic system disorders, would publish fallacy.

Autonomic Disorders and Mitral Valve Prolapse Center

http://www.mvprolapse.com/dysautonomia.html

http://www.mvprolapse.com/treatment.html

Yeah, there is a blood sugar control issue here. POTS doesn't mimic hypoglycemia - hypoglycemia is part of the metabolic dysregulation, a pantheon of altered pathway states - the 'family' of autonomic system diseases.

Autonomic disorders are *largely* familial rather than being caused by a viral infection. The viral infections, extended bed rest - that tipped the scales in favor of overt symptom emergence.

The primary issues are genetic in origin, but not the way you're thinking.

To understand dysautonomic states, we'll need to think about receptors - nuclear receptors. And epigenetics. And antioxidant status and it's maintenance.

POTS and an assortment of other autonomic disorders are very likely to be epigenetic in origin - a problem of silencing of genes (many of them regulated by key nuclear receptors) that are turned on and off as you progress through key organism developmental stages.

The nifty part is this: we have amazing neural plasticity.

We can, to an extent, manipulate nuclear receptors and antioxidant status by diet, lifestyle, supplements - and by understanding the role of methylation status in human health and reproductive fitness.

You've already got the important bits embedded in many, many threads here - technical material and lots of observational reporting.

We should start connecting the dots.

Indeed- connect away! We are always eager & welcoming to new members with information.

Hope your jaw's recovered :rolleyes: Our members post old and new info if it's relevant or of interest to anyone. I found new information in this article and appreciate TBMR's sharing.

Glad you're here, sorry you feel the need to be. I look forward to having lots of dots connected :P

Julie

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Mvp is a marker for Dysautonomia. If you have Ehlers-danlos III, you might have a minor MVP. As you know TMJ, carpel tunnel, lax ligaments in the upper arm, that can be painful, all the flexible joints and etc. goes along with this dys., and of course we know how awful the blood pressure can be, the nausea and dizziness, pain & weakness in the legs, fatigue that can not be understood, unless you have it, sleep problems, GI upsets, migraines and the heat intolerance. Too much time laying in bed or on the couch, missing out on our precious family, watching the world go around almost without us. I am sooo grateful that there is people in the world that can keep it going. Oh my!!! How can we stand this stuff????

That felt good to vent!!! It was hard to stop, and I am sure that I missed something!!! Oh! This is only one type!!!

I pray for a cure for every type of Dysautonomia. Love & Prayers, Mary

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KC

Don't sweat the posting! I recently posted an article from 1976 referencing an article from the 1870's! (I was just venting with that post.) I was being a crabby-baby with regards to vague references to connecting dots, not your posting! More public knowledge of our "silent" illness is a good thing.

I agree with Intuit that there are some really good minds here on the forum and much useful information all centered in this one place. Unfortunately, many of us are upright too long and our "brilliant minds" fog out! I believe that there is some pattern to all this, enough to separate the subtypes and point toward better treatments for each one. I just wish there was some place for true intellectual debate with regards to the differing theories and mechanisms. I'd love to be super-rich and pay every single one of these experts to come together for a month-long retreat with a bunch of us to use as guinea pigs and get this hammered out! It is a lonely feeling to have to educate my own doctor as to what to treat and how to treat it!

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Firewatcher, you rock!

No offence Intuit.

Please understand, we are sick, we want answers, we have brain fog. We are tired of studying medical lingo. We are tired of being sick. We/I do appreciate your knowledge, but plain english like Firewatcher said would be helpful.

I've often wondered if we could all get around a large table, with a giant chalkboard (like on House) and brain storm together, if we couldn't "connect the dots" ourselves.

We might sit there for hours, or days, but I bet we could come up with some answers. After all, WHO cares more about us than US.

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While there are many good stories/articles written by patients about POTS, I am not sure this is one I want to rely on. I think the author of the article is a little confused. Mitral valve prolapse syndrome, or MVPS, is an old name for dysautonomia. I think the MVPS center in Alabama tends to call it MVPS rather than POTS.

In any case, MVPS is separate from mitral valve prolapse - the prolapsed valve that is extremely common among women - I've heard 20-25% of women have it. The conneciton between MVP and POTS has been discussed a lot on the forum before and I think it's up in the air.

Finally, I am annoyed that this author focuses so much on depression. Perhaps it is her experience, but it is not a large part of POTS for many of us - and I wouldn't my friends. etc. to read this article and get confused that POTS isn't a physical condition.

Edited by yogini
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I also look forward to some clarity from Intuit.

Two statements were made with certainty that struck me--POTS doesn't mimic hypoglycemia and autonomic disorders are largely familial.

I'd be curious to know where this is documented.

The first statement was probably in response to mine--which was simply repeating what my doctor told me after several GTT's that revealed that although I had symptoms (which could be and are controlled with diet to a degree) I did not have hypoglycemia. Again, I do understand that there are POTS patients diagnosed with hypoglycemia and I certainly would not question or dispute someone else's diagnosis.

I am not certain of many things about my condition, although I have read some research and I do put a lot of faith in what my doctor, who is a specialist in autonomic dysfunction, tells me.

If there are dots to connect, let's connect!

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I also look forward to some clarity from Intuit.

Two statements were made with certainty that struck me--POTS doesn't mimic hypoglycemia and autonomic disorders are largely familial.

I'd be curious to know where this is documented.

The first statement was probably in response to mine--which was simply repeating what my doctor told me after several GTT's that revealed that although I had symptoms (which could be and are controlled with diet to a degree) I did not have hypoglycemia. Again, I do understand that there are POTS patients diagnosed with hypoglycemia and I certainly would not question or dispute someone else's diagnosis.

I am not certain of many things about my condition, although I have read some research and I do put a lot of faith in what my doctor, who is a specialist in autonomic dysfunction, tells me.

If there are dots to connect, let's connect!

I hear you re. the hypoglycemia. Goes to show how different we all are. Interesting that diet helps despite the fact that the hypo supposedly isn't real. Do you remember how long your GTT was? as I recall, there is a short one and a longer one. My huge dip didn't occur for several hours. If I had a shorter test, it might not have been seen.

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Sorry, I'm just learning and still trying to figure out this puzzle of dysautonomia, so forgive me if I step on toes or ask stupid questions <_<

I would love answers too...I don't have POTS but NCS and OI. I can't find much on Cardiac - Neurologic related research, other than MVP. I have trace MVP and Mild Tricuspid regurgitation and LVH, along with other heart problems I have, so this interests me and I would like to find answers.

I read this article and said wow! a dysautonomia center would be great, I don't think alot of doctors even understand DYS themselves and it would be wonderful to have a place to go that does understand it.

Since Dysautonomia is the broad term that describes any disease or malfunction of the autonomic nervous system; isn't MVPS part of that umbrella? Is it me or does POTS seems to be more prevelant over other autonomic dysfunctions or is it just more known say than NCS or OI?

I find it interesting that in the nineteenth and earlier twentieth centuries - [1869], a diagnosis that was almost solely given to women was called "Neurasthenia," or a "weak nervous system".

I can't find anything that says Neurasthenia or Dysautonomia used to be called MVP, am I missing it? Or did I mix up posts lol that may be...it's one of those days for me. MVP was first described by John Brereton Barlow in 1966, and was subsequently termed mitral valve prolapse by J. Michael Criley and sometimes called Barlow's syndrome, Floppy valve syndrome.

I do see MVP listed under Orthostatic Intolerance Syndrome section from the NDRF, and it says these conditions are among the least understood of the autonomic disorders.

Since the ANS controls the involuntary bodily functions, such as heart rate, digestion, and breathing patterns; and every other part of our unconscious bodily functions; wouldn't it play a role in insulin control? The NDRF says Autonomic dysfunction can occur as a secondary condition of another disease process, like diabetes, or as a primary disorder where the autonomic nervous system is the only system impacted.

I find this interesting also - Patients lucky enough to be taken seriously by their family doctors are likely to be referred to a specialist. The type of specialist they are sent to usually depends on the predominant symptom they are experiencing, or on the symptom that most impresses the family doctor. However, whatever the diagnosis, a dysfunctional autonomic nervous system almost always plays a major part in causing the symptoms.

There is no generally accepted set of criteria for diagnosing many forms of dysautonomia, just as there is no general agreement on their causes or on the precise mechanism that produces the autonomic imbalance, so there is no generally accepted approach to treatment. [How true is this I wonder?]

Since the underlying cause of dysautonomia is not known, treatment is largely aimed at controlling our symptoms, and not at "curing" our problems. Which is why this article gave me a spark of interest with this type of center.

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I hear you re. the hypoglycemia. Goes to show how different we all are. Interesting that diet helps despite the fact that the hypo supposedly isn't real. Do you remember how long your GTT was? as I recall, there is a short one and a longer one. My huge dip didn't occur for several hours. If I had a shorter test, it might not have been seen.

I had a short one (2 hrs? whatever the standard is) during pregnancy. Post-partum I had a 2-hr and then a 4-hr test. I had symptoms during all, but no sign of a problem with bg--either hyper or hypo. I was told by my dr that when my POTS is severe I have symptoms that mimic hypoglycemia--I guess what happens is that I have adrenaline surges that are an inappropriate response to a normal rise or fall of bg. Although a nurse told me during one glucose test that my bg "spiked" and she thought it was somewhat abnormal, but not of concern. So I do find that if I eat higher protein, sugar-free meals, I am less likely to experience the uncomfortable adrenaline surges and shakiness.

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Since the ANS controls the involuntary bodily functions, such as heart rate, digestion, and breathing patterns; and every other part of our unconscious bodily functions; wouldn't it play a role in insulin control? The NDRF says Autonomic dysfunction can occur as a secondary condition of another disease process, like diabetes, or as a primary disorder where the autonomic nervous system is the only system impacted.

Yes ANS controls hr, digestion, breathing but not every involuntary bodily function. I do not believe insulin production and pancreatic function is controlled by the autonomic nervious system. Diabetes is not autonomic dysfunction, however, high blood glucose can cause damage to the nervous system over time, which can cause autonomic dysfunction (eg orthostatic problems).

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A dysautonomia center would be awesome! I'd love to get some answers, but I'm fairly certain my dysautonomia is related to my Ehlers-Danlos because everything is too stretchy. I only have an MVP in the sitting position or when dehydrated- I have normal heart function lying down. <_< That's pretty strange in an of itself.

As for reactive hypoglycemia, I was diagnosed with this too. My blood glucose drops really low immediately after ingesting a sugary drink. It then slowly climbs up higher. I've had glucose readings as low as 12. At this point, I've stopped testing the sugar levels. I keep granola bars in the car and in my purse and eat every 90 mins. It works. No doctor knows why my glucose drops out like this. So, I manage it.

Most doctors are waiting for me to get sicker in order to treat me. High blood pressure and high blood sugar are both easily treatable. Low values of either are not.

As far as I'm concerned, autonomic disorders are not, in general, familial, unless there is an underlying medical condition. Ehlers-Danlos is autosomal dominant (1/2 of your kids will have it, if you do) and something like 70% of those with EDS have POTS. Therefore, POTS seems heritable, but in reality, it's the EDS, not the POTS that is genetic. Don't get me wrong, there ARE heritable forms of autonomic dysfunction, but they are very rare.

We should all get together, with a bunch of doctors, and a white board, to determine the cause for each of us. I'm fairly certain the cause is different in most cases.

Sara

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I am just loving reading all these replies! I wonder if you can start out with a somewhat compromised nervous system. I was ADHD as a child but did not take anything for it. Now my youngest is taking Ritalin and I worry about his little nervous system since this all started for me. I feel like it was just laying there waiting to rear it's ugly head when it had taken all it could take. I am so much better now but not normal or what I used to think was normal! :lol: Can there be such a thing as a completely fried nervous system without some serious underlying medical condition? I'm not sure....I cant find a doctor that knows what they are doing to figure that out! I am having the autonomic muscle testing done this morning and I'm just dying to know what this guy is going to say! I have no faith in this and am going purely out of "I've got to hear this" kind of thinking! And just to throw this out there....I'm really getting sick and tired of people saying to me "Are you still going thru that? You need to learn to relax girl!" They have NO IDEA what this is like....if I could just relax and it would go away dont you think I would have done that a year ago? Ok I will politely step off the soap box and leave for my appointment now! :-)

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Reasonably good definition of hypoglycemia:

http://en.wikipedia.org/wiki/Hypoglycemia

Whipple's Triad, and it's application for diagnosis:

http://en.wikipedia.org/wiki/Whipple%27s_triad

Evaluation and Management of Adult Hypoglycemic Disorders: An Endocrine Society Clinical Practice Guideline

http://jcem.endojournals.org/cgi/content/abstract/94/3/709

In my case, a glucose tolerance test induced hypoglycemia causes classic adrenergic symptoms - no sweating, but exceptional nervousness, coldness and shaking, drop in blood pressure, tachycardia, staring, mental fog.

Where there are symptoms in the absence of a significant drop in blood glucose, a vague diagnosis of Idiopathic postprandial syndrome is applied.

http://en.wikipedia.org/wiki/Idiopathic_po...andial_syndrome

The second reference:

http://www.uni-duesseldorf.de/MedFak/insul...an_hypo.htm#APS

provides an interesting answer: abnormal epinephrine response.

Despite normal concentrations of blood glucose patients face unspecific symptoms (sweating, tremor, palpitations, anxiety, nausea) caused through autonomic adrenergic counterregulation. The adrenergic tone elicits the symptoms and simultaneously avoids hypoglycemia through biochemical mechanisms (action of epinephrine / adrenaline

The 'shock response' effect (termed 'biochemical centralization, analgous to blood volume conserving action observed in traumatic shock events) is described here:

"Stress-Hyperglycemia" during the postaggressive metabolic state essentially means the physiological adaptation to jeopardized cerebral blood flow in order to meet the fuel needs by the brain. This is achieved by a biochemical centralisation of the glucose metabolism analogous to the hemodynamic centralisation of the circulation during shock (cardiogenous, hemorrhagic, hypovolemic). Metabolic centralisation physiologically resembles a glucagon-mediated "endogenous infusion of glucose".

Glucohomeostasis

http://www.uni-duesseldorf.de/MedFak/insul...physiol.htm#top

This latter case, where patients report and physicians observe symptoms consistent with hypoglycemia during a GTT, but the blood work fails to show significant deviation from normal blood glucose rise and fall, is why many inexpert physicians will say..."I don't believe in hypoglycemia".

In other words, they don't know what's going on, and in the absence of testing for epinephrine surge, they write it off as psychosomatic, or anxiety disorder.

If we have a significantly altered blood volume after eating, such that blood flow to the brain is compromised, the hypothalamus lets loose a surge of ACTH and epinephrine, further reducing blood flow to the extremities. Why would blood volume change? Your body sends blood to the intestinal tract for nutrient absorption. If you have low blood volume to begin with, this may trigger an exceptional drop in BP, with a hair-trigger epinephrine release response from the hypothalamus.

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