The True Cause Of Pots, They Know About It, So Why Arn't They Doing Anything About It ?

[Rosie]

And I would like to add something as well re Autoimmune Disorders/Diseases. It does not matter if a problem starts with a virus or a bacteria, it can become Autoimmmune if the Immune system does not function correctly. Personally I do not see Lyme as THE cause of Dys. However, I do think Chronic Lyme may be another Autoimmune Disease. Before anyone says,'Not me', Have a look at the list at the link I will leave. I have MVP with Dys, which is inherited. Not long ago, I would have said, 'Not Me', as well.

http://www.aarda.org/research_display.php?ID=47

And if anyone is interested, I would suggest looking at Autoinflammatory Diseases as well.

Take care all.

[pearsjon]

i have to disagree on one point brought up by firewatcher,

We all also have OTHER DISORDERS (like EDS or thyroid diseases) that modify our POTS, just as POTS modifies other disorders (thinking of the sleep disorders/narcolepsy poll.)

, see i am one of the few here that after over 13yrs of testing DYSAUTONOMIA, is the only thing i have.

so see we ALL don't have don't have an underlying (secondary to) dx.

i just wanted to point that out. i don't have anything but dysautonomia. so what was the cause of mine? what was the trigger? what, if by your statement, is mine secondary to?

just wondering cause i sure would like to know!

[yogini]

I don't have any other conditions either. IT does not have to be secondary to anything. I suspect there are more people out there that have POTS that don't have anything else - I know this because my drs mention other patients that they see.

[potsgirl]

I too, am one of those people who seem to have 'just' POTS. Although I do have a rather unusual case (or so I'm told by my cardio and neuro docs) because I got sick with a virus, then developed dilated cardiomyopathy and went into congestive heart failure. I have a pacemaker because my bradycardia was so bad, but also had to be on Coumadin since I had a lot of atrial fib. A year and a half later, I felt much sicker, and was then diagnosed with POTS. They're testing me for genetic markers, because I guess I am a candidate for amyloidosis. So far, so good. Thank God.

Cheers,

Jana

[Miriam Poorman-Knox]

Maybe I am perceiving this wrong, but we need to step back. Remember that this is a syndrome thus by the diagnosis there is something else. Cardiomyopathy is another issue. For those who "only" have pots and nothing else............yeah !!!!! Enjoy. The problem is that it does take time and a bit of luck to find someone who can be our miracle workers.

So, if they know the who, what, when, where and why of this,........nice. Miriam

[ramakentesh]

isn't what gary said and poohbear and rammie said pretty much all speculation or theories? even in science it is theorized why we have this. seems to me the medical field and all of us here are all postulating theories by extrapolating what is read or theorized in journals. from what i have read, they are no further now then they were in the 50's. the only difference is now it has the word syndrome behind it. whoopee, a syndrome, that very few in the medical field even have heard of.

i don't feel we should dismiss anyone's theories at this point. cause to me everyone is still guessing (theorizing), call it whatever you want.

IMVHO

Without wanting to cause offense Im assume you havent read any of the studies that I have read if you think that they are no closer to understanding circulatory disorders now, than in the 1950s. Seriously in the last five years MASSIVE steps have been made in medical science in a wide variety of areas. Its complex but they will work it out.

The theories I have posted are not my own - they are based on the current published medical work on POTS. There are ofcourse other theories, but the ones I posted above all have testable criteria that prove their contentions or atleast suggest them.

I dont think I ever said that all POTS patients HAVE to have other primary causes for their conditions. Infact if you read my post I was suggesting four out of five PRIMARY causes of POTS in patients without other underlying causes.

I have POTs and I also have a very mild autoimmune inflammatory disorder (my doc described it as one of the most benign cases of Ankylosing Spondalitis he had ever seen). My gut feeling is that they are related but there really isnt much evidence out there yet that suggests this - infact some of the tests ive had tend to indicate that they are not connected. So i keep my mind and my options open, I keep reading and I hope to understand my condition better and to see if better medical options arise in the future. i dont make any assumptions about my condition until a doctor whacks me in the face with a research study that proves something.

i was reading recently that Dr Stewart has also found evidence that there is inflammation within the stomach of some POTS patients that results in some sort of nitric oxide excess in the stomach. This could be a possible link maybe??

[yogini]

I think there are two kinds of theories - ones posed by us - just guessing, and ones developed by people who specialize in this area and do years of research and clinical practice. If you read the literature, there is actually at least some (in my opinion a good amount) of scientific info about POTS and what causes it and what is going on in the body, although there is a lot more that is unknown and needs to be learned and deeper connections that will come out with further research.

I do think it is a diagnosis and not just a collection of symptoms, especially for those of us that don't have anything else wrong going on.

I have had POTS for 5 years. I decided a long time ago not to worry about why I got this and what exactly is going on in my body, but rather to focus my energy on treatment, exercise, and anything else I can get my hands on to feel better. That is the only way I have been able to make it through. There are lot of theories posted on this forum that people feel adamant about, but the best knowledge right now is from the well-known POTS doctors. I think it's healthy to wonder and to discuss, but only so much is known and I believe that it will be years before we know more.

[Guest tearose]

Interesting thread...I continue to have hope that one day I will be "all better". This hope has also cost me a great deal. I allowed myself to be unrealistic at times and have done physical damage by pushing when I should have rested. I lost years of perhaps disability support when it would have helped me heal parts of me sooner. I lost self confidence when I doubted my own intuition.

I am an old timer though. I have had dysautonomia since 1991. I have tried every remedy three times. I have not gotten all better. There have been times of wonderful remission and over the years, the relapses are getting longer and scarier. I "gave up" on trying to figure the "TRUE CAUSE" Gary. I believe it has been healthier to try to figure out just what my challenges are in this moment and deal with them. Let the researchers continue to do their thing and let me go on living as full a life as I can. I support your efforts to be brave and try to figure out YOUR "true cause" but trust me, it is different for everyone. I do have damage to the barroreceptor reflexes and they are not fully functional after many years. They have a low threshold and will give out when they must.

I think the reason I have autonomic dysfunction is due to several physical abnormalities that produced the environment for ANS irregularity. I have physical damage that has not healed. I can't make lymph channels grow back. I can't make nerve fibers get stronger. I can't change the shape of my blood cells or make them carry more Oxygen....I just do my personal best one day at a time.

I also think the researchers are doing all they can and it is going to be figured out someday.

[Miriam Poorman-Knox]

Tea.......... Well Put....... AMEN M

[pearsjon]

in a nutshell, my point was that yes medical science has the horse in the barn but they can't make him run.

and rammie i have done mor e research than i care to admit. i have tried every regimen out there, by the cdocs themselves and by self medicating from years of not knowing what was wrong.

i have had this probalby longer than mirriam , since birth according my highly trained dys doc, who is on the list for doc in this forum. if they can't make the horse run-i guess we just sit in the barn. cause that's what i have been doing for so many years w/ and w/o dys doc care.

plus you have to remember that every doc has to publish something, it's how they get jobs and brownie points, so to speak. in other words, it is no different than any other degree- noone knows your grade just that you have a degree. so do you know if these published journals are from an "A" student or a "D" student.

i just tend not to believe everything i read. call me crazy, i'm used to it.

and your right, they have made the very brilliant notion that maybe we need to exercise instead of laying in bed alll the time (since the 50's), sure did take a ton of women dying to even figure that out though. was that thru research, or thru common sense?

oh yeah, and they know (or at least some do) that it is not psychological. but if they believed themselves, why is there still graduates coming out w/ no knowledge of this syndrome?

plus i postulate again, that if there was an answer,which there may be ,they are gonna bleed us dry before they telll us what it is. cynical, h** yeah. after , what i have been through.

in other words, if astronauts have dysautonomia, when they come back from space, and they use tilt training to cure it, or do they? and if they can then why can't we have the same treament? i can understand, if it's secondary to something else, but primary, i should just be able to hope on the tilt table fro a couple of months and feel great right?

i love my doc, and thank god for him everyday, but he can't help himself w/ this whatever you c=want to call it, so how can they help me. \

you guys, kepp trying to find an answer, as for me and my house, we willl just live as if i don't have it. even though i have a 30 degree tempature difference in one arm. just another day in dys. and i hope and do see some trying to help us. but docs don't truly want to cure, as then they would have no patients.

and i am not including all docs, let me state that very clear, there are some really good ones, just so hard to find. and i can't help but to wonder why?

[Sophia3]

Tearose

Mega Dittoes to your post!!

Firewoman

I SO understand your situation...i've had mine since birth after being a 'sickly child, no energy, bad hypoglycemia, exaggerated motion sickness, poor stamina in gym class, etc...if we only knew then..

[Rosie]

Ramakentesh..... if you have Docs that will whack you in the face with studies, then you are indeed fortunate. It has been my experience that I have to do the whacking!

I do try not to make assumptions about what is going on with me, but I do make educated guesses, and the ones I have made have been correct thus far. I have had problems that were not found by some good Docs until I insisted on testing. Now those problems are being treated along with my Dys.

So you have actually been diagnosed with an Autoimmune/Autoinflammatory Disorder. You are the first person with Dys that I have communicated with who has been diagnosed, although I don't believe you will be the one and only. If you don't mind me asking, how long have you had the diagnosis? Nice to hear that it is Mild.

[Dizzy Dame]

Tea, I have to agree with you in your mindset. I spent my first 3 years of illness railing against it, I didn't start to really improve though until I relaxed and just focused on my personal treatment. I think it's healthy to try to figure out POTS to a point, but I feel there is a point where worrying about it can just prolong or even worsen the illness.

I'm not saying anyone's doing that here in this thread, and I'm not trying to discourage anyone from learning about POTS, but I know I made myself worry about it to the point of getting worse and wanted to share that as a bad example. I hope everyone on the thread also remembers to take time for their recovery in personal ways: for me, meditating, taking time to enjoy small things like sunsets and good food etc contributed the most for my recovery

Lots of love and healing wishes for everyone

-Lauren

[Dizzysillyak]

Gary,

Interesting discussion. We're going through the same realizations about health care on the CFS/FM and celiac boards. And you can just imagine how the autism community is dealing with all the interesting findings concerning the DAN protocal.

I think the problem lies in recognizing the difference between holistic and traditional medicine. Traditional medicine is interested in what labs or procedures say and in which meds or procedures / surgeries can be done to correct a condition. Most treatments are specifically directed at a symptom and not the cause. And since no cause for a symptom is found, some of these conditions can last a lifetime setting you up to take meds for life. Many times these conditions are part of bigger picture and more symptoms are already present or begin to present themselves later. But again since the root isn't researched, patients end up just getting another diagnosis code added to their medical records.

Holistic practioners look for how the condition came about and how to undo the it. In my research over the last 4 years, I've found that leaky gut / gut permeabilty is thought to be the root cause of many illnesses. We all know that most of our immune system is in our guts. Not that this is the best example, but even the Danactive commercials are talking about leaky gut now ...

Some traditional doctors have become interested in finding the root cause of illnesses to and know about supplements. I see an integrative doctor so I can get meds or supps depending on what she thinks I need.

Even Dr. Oz, cardiologist, said on Oprah the other day how he has to decide which ones of his patients he's certain can recover via diet and excercise and which ones need the surgery. If one's heart damage can be reversed, why not POTS ?

My ataxia is gone and according to all the research I read, ataxia means I had damage to my cerebellum. Dr Hadjivassilou proved that in some cases of ataxia, gluten antibodies had damaged the purkinje cells in the brain causing ataxia. Removing gluten from the diet for a minimum of one year is known to reverse gluten ataxia in many ... We know that some diabetics have gluten antibodies in their pancreas and those will go away once they adhere to a GF diet. These are just two of the illnesses that can be accounted for by gluten antibodies. The list includes 250 other illnesses ... and hopefully once they begin to understand that celiac disease is just the tip of the iceburg as far as gluten damage, we'll see more people being helped sooner. FWIW. I'm sure there are a lot more toxins than gluten causing symptoms but these are well documented by traditional medicine mostly under celiac disease.

So ... IMHO, the root cause of many illnesses can be found, you just have to look for it. Granted some conditions will be permanent depending on the amount of damage. But I had ataxia for 16 1/2 years and it just went away after 1 year on the GF diet ... Makes me eager to see if there's a solution for my OI ..

[morgan617]

Tea, well said! I'm an oldie like you, I can not ever remember a time of not being sick, and have wasted too much time trying to figure out the why's and not enough just learning what works the best with me. There was a time I felt like you, gary. I wanted to study everything and figure it all out. But in the end, all I figured out was that I was wasting time. Figuring it out is what the researchers get the big bucks and grants for. And much of the time they don't agree with each other. Which is fine. it's like this discussion, we all have our opinions and thoughts and no one is right or wrong, it's just our opinions according to what we have studied, read about, who we like , what symptoms we have, what tests we've had, who we trust and who we don't, and where our priorities are at the moment. I have gotten too sick to wonder about the causes anymore. My time is better spent on what improves my quality of life day to day.

I now spend my time figuring out what makes me feel better and function as well as I can, for as long as I can. I have had a pretty fast progression of this in the last few years and do not feel there will be any big answers in my life time. My son has had AS for 17 years and his is NOT mild, but so far his POTS symptoms are minimal and hopefully will stay that way. (I am speaking to the Aussie here, sorry I can't remember your name, red faced)

This is too complicated for me to try and figure out what works best for me, let alone what caused it. I have changed a lot over the years along with tea on this. My priorities are far different than they were 5 or 6 years ago. But the discussions are interesting. morgan

[lotsicker]

My biggest question would be associated with Trauma. Why would a trauma bring this out ? These people arn't developing PTSD or any other problems for the most part. Giving birth to twins is a good example. This is definately a trauma. I postulate again, there must be some type of correlation between a lowered immune system and "letting the cat out of the bag".

I'm not a Dr., so take what I say with a grain of salt and for education purposes only, but I honestly feel that it is this area of the brain that is being affected to cause these symptoms. Lastly, I want to end this post by saying that I'm not in any way shape or form saying that any of you have Lyme. I'm using it as my example and perhaps it is something you should look into. There is a big war going on between the IDSA and ILADS organization. IDSA are you infectious disease Dr.'s, where ILADS are your LLMD (Lyme Literate) Dr.'s, who are now popping up all over the country as many are presenting with Lyme symptoms. This is what I'm dealing with.

Take care and be well,

Gary E. BSN, RN

Hi Gary,

I had twins via C-Sec. A c-sec that the spinal block did not work! I felt every cut, pull, tear..etc. In addition, I lost alot of blood and got a bad infection. This in it self would be enough but, I did not have my first POTS episode unitl I was bitten by a black widow a year later. I think my body was desperately trying to regulate itself after the trauma and the black widow bite took it over the edge! Basically, everyone's body has its limit. Look at victims of domestic violence or war vetrens that has suffered HORRIBLE trauma, yet they do not have POTS. Yes, it is the "regulator" in the Brain that gets messed up but, who is to know what limit their body has?? I do not beleive its a comprimise of the immune system, I beleive its an overload of addrenal secretions triggered by the illness/trauma that finally burns out the "regulator" in the Brain. That is why some see an improvement, and some don't. The body continues to heal itself and some days our disfunctional autonomic system "kicks in" and some days it just can't take it anymore.

Just my 2 cents...keep your head up, I have read that it can spontaniously correct itself....

[Guest GaryRN]

Hey Everyone... well it appears, I've started a hot topic :-)

Just wanted to thank everyone for their input. As you can all see, there are many theories out there.

A few have just said they accept it as a condition and just trying to adjust their life to it. I think this is important as there is nothing any of you can do but accept it unless you think there is a correlation as in my case.

TC,

Gary

[Guest tearose]

Gary,

I am sure there are many reasons someone may not be able to "just try the protocol".

One of the major reasons I can not do the protocol is that I must limit my sodium / salt intake. I have lymphedema; permanent damage to the lymph vessels and sodium is contraindicated.

I think most people are very willing to try any reasonable possible cure! However...please do not underestimate how complicated what seems to be a "simple fix" may actually be for some.

tearose

[Miriam Poorman-Knox]

Doing the salt/vitamin for LYME.. is that for Lyme which you state that you have. For everything that works for a few more cannot use that under any circumstances. M

[Guest GaryRN]

For those that are told to limit their salt intake, than they obviously can't do this. I do use it for Lyme treatment, but it is aimed at killing bacteria and parasites in general, which many of us have, believe it or not. And it doesn't have to be Lyme.

I'm just putting it out there. Not saying it's the cure all. I was told and I have read that those with POTS should increase their salt intake anway, so this is the only reason I'm putting it out there.

Gary

[iheartcats]

Just my 2 cents...keep your head up, I have read that it can spontaniously correct itself....

My doctor keeps reminding me of this too. I keep hoping. I wonder how you know, thought? The crazy mix of meds I'm on, I'm really uncertain. I guess you'd just feel 'better' or 'normal' again. Sometimes I try to remember 'normal' and it's hard!

[Sophia3]

Well I have tried many things/therapies/nutrition/ blah, blah, blah.

after ANS progression, I am still waiting for spontaneous cure after 19 years.

It's HIGHLY UNLIKELY unless you are a kid or had SUDDEN onset version or MEDICINE induced type that's temporary.

There is no simple prognosis.

Some could use the viewing of the NDRF Conference tapes for ANS docs video explanations.

HORRIBLE EDITING on those videos but information great and validating.

[ramakentesh]

Yeah Id like to echo what some people have said here in that being positive and concentrating on getting better seems to help. i can tend to obsess about the causes and research, but i do this to see if there are better medications out there to try - i dont expect to work it out myself.

Yeah I have been diagnosed with Ankylosing Spondalitis. How it arrived was quite peculiar:

A week after returning from a holiday to China I went fishing with friends and drank maybe 7 beers or so. The next day i went for a run and my heart rate was super high so I stopped. Came home and had a shower and nearly fainted - and that was how POTS arrived for me. I had a dizzy period four years before this and Id always been an overly tired individual, but i went from maybe 10% non specific symptoms to 100% POTS like that.

Four months later I woke with crippling sciatica on my left side. it was so bad I couldnt walk and had to take yet more time off work. This coinsided with a sudden reduction in my POTS symptoms which had plagued me for four months. After scans and other tests they found some kind of boney growth around my sacroiliac joints that was definitive for AS with my HBA 27 something gene being positive.

So basically four months after getting POTS out of the blue I got AS out of the blue as well. Logic would dictate that there may be a connection but i havent found much in any of the research other than some references to elevated TNF alpha in some CFS patients.

Since that time ive had fluctuating symptoms for both these conditions - Pots gets bad, then both are mild, then AS comes on, then both get mild. Now at the moment is the first time ive had both bad at the same time. Im very POTSie - just improved and then i made the stupid mistake of overdoing things and my AS has also been flaring - its been flaring up every time i eat carbs of any kind.

wish me luck guys!!

And yes Morgan Im the aussie guy!

[morgan617]

I could never do the salt thing. I have meneire's and hyperandernergic, so my BP is typically sky high. Lot's of meds to keep it below stroke level. There are just a million theories out there and I don't begrudge anyone trying anything they think might help. Been there, done that. We just have to realize that what helps some could well be lethal to someone else.

It's never a bad idea to throw theories out there, as long as people are in tune enough with their bodies to know if whatever someone is talking about will cause even more damage, or might help. Gary, you are very careful to say that things should not be under taken without discussing it with your doctor, and that is appreciated, however I worry about newbies, who may see things as the miracle cure they have been looking for, and being very frustrated by doctors, do something that may be harmful, because their doctors don't listen, everyone thinks they're crazy, whatever the reason.. There are just going to be people who are not going to heed advice about getting advice.

I have tried about a zillion different treatments and have discussed my responses, but am also very careful about telling people that they are MY responses and they don't mean a hill of beans about how anyone else will respond. What may help one person can really hurt someone else, and vice versa. I have been amazed at the amounts of sodium people can put in their bodies on this site (does Addison's ever enter your mind when you see how much sodium people can use and in fact, crave?)

If I take in more than 800 mg of sodium a day, I am in huge trouble because of a different illness I have. But I take 160-180 meq of K+ a day just to keep my K+ level at 3.5 or 3.6. Being a nurse, you know that for an ordinary person, that is potentially a very lethal dose. So, it's very different for all of us.

Even those of us who just try to get through the day to day trials of living hope there will soon be break throughs, but we have been down a lot of roads, thinking it's "the one."

I don't know a lot about lyme, have never been tested and don't know how much many on here know about it. But for those who have been taking oodles of sodium for the 6 years or so I've been here, the best I've heard them say is it helps keeps them upright a little longer. Lyme well may be your trigger, but I believe there are about as many triggers as theories, and as many theories as treatments...etc and etc. and some days I believe it's just one big cosmic joke someone is playing on me.

I do hope this is YOUR answer though. I watched your You Tube views, nice to put a face and voice to people, and found them interesting. I would, however, like to know where that gorgeous shiner came from?????

Sometimes the topics that start out quietly enough can become "hot topics" but we are all adults here and must respect everyone's input. Whether we believe it or not. I'm an old cynic, who long ago gave up the notion that there is a "cure" for me, but I would like to think there is one for everyone else! evertherespectfulmorgan

[mcaimless]

For those of you who can tune into the Diane Rehm Show on NPR tomorrow there will be a segment about Chronic Lyme Disease with several guests.

11:00Controversy over Chronic Lyme Disease

Chronic Lyme Disease is one of the most controversial issues in medicine today. Diane and her guests discuss the battle over diagnosis, treatment, and whether Chronic Lyme Disease even exists.

Guests

Dr. Samuel Shor, Internist in private practice and Associate Clinical Professor at George Washington University.

Pamela Weintraub, A senior editor at "Discover" Magazine and author of "Cure Unknown"

Phillip Baker, Executive Director of the American Lyme Disease Foundation and microbiologist, former Project Officer of Lyme Disease studies at the National Institute of Allergies and Infectious Diseases.

You can listen online or see transcripts : http://wamu.org/programs/dr/09/04/20.php#25417