I would be greatful to know exactly what is meant by a "GRADUAL" onset means. to me it could mean 10yrs depending on your age, 5 yrs, 2 years, or months. I have no clue how they are defining GRADUAL "OVER TIME" how much time. I think it would help alot of us to know this.

I think that would probably vary from person to person. Some forms of POTS start with an abrupt onset of symptoms after an illness or accident. Others would fall under the gradual onset, especially the hyperadrengenic form (again, this is just my understanding - someone correct me if I'm wrong!)
For me, it's been a period of several years that my symptoms got to this point. So, it would probably be hard to say a definite number.

my question is what about an abrupt onset after no trigger? what about someone with no history of anything, no anxiety, no dizziness, nothing all of a sudden being full-blown dysautonomic? is gradual considered to be a couple of months? it all seemed rather sudden to me. the only trigger i can name is being on the birth control pill. i am trying now to find a link between that and suddenly causing mvp or pots to show its ugly face. i was only on the pill for less than two months before i all of a sudden started feeling terrible! stopped the bill by the third month, and just got worse and worse. does this sound common for dysautonomia?

I think that there are general categories but not everyone falls into these categories.

I've been diagnosed with post-viral onset which was super sudden. (I can state date, time, etc). But I had mild symptoms all my adult life that I just ignored because they were mild and only impacted me when standing in lines for long time.

And even weirder, I was not sick before the onset. The only trigger I can think of was an EGD 10 days prior. But my specialist believes that is too many days in advance of the onset.

And I have family history - a sister with MVP syndrome, and a brother with some type of OI.

However, I fall into the post viral category. And I think it is because I don't have the adrengenic (sp?) type due to my test results. So I am grouped into the post viral category.

But for me - I'm content with it because I have a milder version than many others and the treatment is working as I am improving.

But I do believe that there isn't 100% accuracy in defining sudden onset or post viral because there are so many unique cases. (my 2 cents)

wantmeback - when you say that you have post viral, does this mean you had a virus, were sick with a virus, recovered from the virus, and then had dysautonomia immediately following?
or, did you have a virus some point in your life and later developed the dysautonomia?

hi gracie - i didn't recall having a virus prior to the sudden onset, but the doc believes i must have but didn't get 'sick' from it. i believe the post viral means that a virus triggers the sudden onset.

rosie - how did yours come on? did you have a trigger or do you recall having symptoms "all your life?"

hi,

Looking back I can, in retrospect, definately see the gradual progression of my POTS. Weird symptoms coming and going. Some with me all the time. Then the 18 years in the wilderness when I was told it was 'all in my head' as symptoms became progressively worse and more numerous.

About 6 years ago I can see that it picked up speed. A lot of stress and onset of menopause -- meaning my periods were still occuring and I could possibly have conceived maybe, but I was showing up as menopausal on blood tests because certain levels of hormones were going beserk. Menopause showed up 7 years ago in a blood test. Last September blood tests showed I was post-menopausal and I've gone without a period for 11 and half months now. 2 weeks to go and I'm official (in my head) but docs say I'm post menopausal. That means I'm experiencing hot flushes (flashes) and other crappy symptoms.

I put my theory to my POTS doc when I saw him about a month ago. I said to him that I had a theory that the reason my POTS became so recognizable (he diagnosed me as having some form of dysautonomia at our first consultation -- but didn't tell me till next visit when tests had been completed) to him was that menopause had made it more obvious.

He thought it was a good theory and was open to it. Plus he's an expert doc -- it was his field (amongst a few others) and trained to see it. When I walked into his office, barely able to stay on my feet, I think I must have been like a flashing light to him. saying 'dysautonomia.'

Grubb apparently told one member of this forum that very often POTS symptoms can increase with the transition of menopause and then when the body adapts the POTS settles down (don't know how much). I'm hoping for a remission when my body has adapted to it's post menopausal state.

I’m another one who can tell you the date and time I got POTSed. Previous to that, I’d had a few fainting spells throughout my life but just attributed them to being dehydrated (running/cycling during hot, humid days). But after I came to from a full-on, out-of-the-blue, no-warning faint, I had major tachy upon standing with low BP, burning/flushing/chills, visual/hearing/swallowing problems, GI problems, night sweats, frequent urination, off-the-charts anxiety, etc., etc., etc.

I’ve had every test in the book done and my POTS doc said I’d probably been ‘hard-wired’ for this my whole life and it just got kicked into high gear one day (who knows why). He said for about 10% of his patients, they won’t ever be able to find a reason or trigger.

very interesting stories. i guess i could be one of those 10% who will never know. perhaps i was hard-wired as well, and the birth control pill just caused it to manifest.
i just can't shake how sudden it was and how i never had a single symptom my whole life. i don't know much about this, but it seems that random fainting spills are at least a little bit of a clue that something was going on. i had nada.
about three weeks prior to the dysautonomia coming on, i had lived for about a year in one of the hottest and most humid countries in africa, with absolutely NO problems. life often got stressful, and i never felt an ounce of anxiety. there wasn't a day that i flushed.
honestly, three weeks after returning to america, i started on these intense flushes that didn't go away, pure and sheer anxiety and such an intolerance to the heat.
it doesn't make sense!!!
i also can't help but continue to wonder about these swollen lymph nodes. they are still here! i asked my doctor if they could be "scarred" meaning they would be permanent, and he said usually scarred lymph nodes only occur in one or maybe two, but not in the number that i have. they are not growing, but they still flare up at various times.
i just want some peace of mind about this. i want to know if i have primary pots or if it is being caused by something that is still living within me. i don't know when to let go and just become one of the 10% that will never know the cause.

Gracie -

Did you ever ask your Dr. about seeing an infectious disease specialist. I still think that is a route you may want to consider given where you lived and what happened when you returned and the swollen glands.....

oh yea, infectious disease specialist is still in order. at least, if anything, to cast out all this doubt i have about primary vs secondary pots. i'm also planning to see a lyme specialist, or at least someone more trained in understanding it than the doctors here in california. unfortunately, i am moving next week and will need to find a whole new set of doctors, so it could be awhile before i can get this ball rolling.

nitekitty - i agree that my prior symptoms should indicate that its not post viral and sudden onset (although the severe symptoms were most definitely sudden). BUT i'm willing to accept that categorization because i've got doctors who pay attention and i'm improving.

i figure they are trying their best to define the categories but not 100% of everyone will fit easily into a category.

Here's my question...I know that dysautonomia has strong genetic links in most of us, but could it be in our genes and still take a trigger to present itself?
My younger brother died of an illness when he was little that I am fairly certain was related to a dysautonomia. His illness in my opinion was brought on first by a near drowning which caused him to have pneumonia, and then a DTP vaccination which he should not have had so closely following his pneumonia.
I had several really high fevers as a child, and a lot of viruses, which may have triggered my symptoms to start, but I also feel that for both of us, it's in our family.
My grandmother and mother both have issues that I think are linked to dysautonomia, but they both are firm believers that it's all a matter of your diet and cleanses and such, and that doctors won't help them...etc. So, without them even acknowledging the symptoms they have, it's hard for me to trace the common symptoms among us.

I don't know what kind of POTS I have exactly, but I feel like I could blame it on a number of different things and call the onset gradual, as it is just now getting really bothersome.

You'd be surprised how many "milder" genetic mutations are being discovered these days.

There are quite a few genetic mutations that may not induce symptoms until later on in life. There are some that are day to day pretty basic, don't show any symptoms --until the person goes through something traumatic to the body like a car accident or a strong virus. Whatever is the genetic mutation's Kryptonite if you will.

The body is quite complex. The endocrine system and the immune system work closely together along with the Hypothalamus, Pituitary, Adrenal "axis".

We are one body with all its cells working together. It's fairly easy to have a seemingly minor genetic mutation that just doesn't induce symptoms until great strain is put on the body.