Dysautonomia Centers???, Interesting Article Options

[TrainBoysMomRock...]

Read this article and was surprised to see at the end the writer talking about centers dedicated to autonomic disorders popping up in some states!


http://www.associatedcontent.com/article/2...mia.html?cat=70

[Mack's Mom]

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

[TrainBoysMomRock...]

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

[futurehope]

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.

[MomtoGiuliana]

Is this actual hypoglycemia or reactive hypoglycemia?

My doctor told me that POTS MIMICS hypoglycemia in most cases. I know some DINET
people have said they actually do have hypoglycemia. Tests I had showed quick rises and dips in bg but never actual hypoglycemia. Yet, I had the symptoms (when my POTS was more severe).

[MomtoGiuliana]

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...

[TrainBoysMomRock...]

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! (IMG:style_emoticons/default/smile.gif)

[Mack's Mom]

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!

[Intuit]

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.

[sue1234]

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.

[firewatcher]

"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.

[Mack's Mom]

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 (IMG:style_emoticons/default/rolleyes.gif) 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 (IMG:style_emoticons/default/tongue.gif)

Julie

[MaryMalta99]

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

[TrainBoysMomRock...]

I am fairly new on here so I apologize if the info I posted was old. I just found it and thought I would share it since it talked about the centers opening up in different states to treat our very complicated disorder. Thanks for all your input on this article!

KC

[firewatcher]

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!