Is Pots Really That Rare?

[friday]

This has been bothering me.

I have seen so many doctors I've lost count..due to having numerous physical problems. Yet only two out of about twenty knew what POTS was.

I had to explain it to the Neurologist..he didn't seem to think it was his domain...'see a Cardiac specialist' he told me. The Cardiac specialist was one of the ones that did hear of POTS. But since it wasn't a heart problem, it was not his domain. He thought maybe a Neurologist would know more about it.

It is said that many CFS patients have POTS. Yet not all CFS patients are informed of POTS..I never was. I found out abpout it on a search engine, while looking up low blood pressure and CFS. Since my doctor wouldn't believe my low normal BP would cause my lightheadedness, dizziness, etc.

Blood pressure is called fine as long as it's low normal..however no one takes it lying, sitting ,standing. Just sitting.

They told me my heart rate was high..must be nerves. Funny I don't feel nervous. If they had bothered to take my heart rate standing up they would have seen an unexplained jump of 30 beats per minute. Then they'd probably send me to the Cardiac specialist.

My whole point to al of this is, is POTS rare, or under diagnosed?

Some people say it took years to get diagnosed.

I just feel if more doctors knew what it was, at least the symptoms, it weren't regarded as something to not even bother checking for, or if doctors were more informed to look for this syndrome in their patients with CFS, it might not be so rare. Which might help it be regarded as something worth doing more research on. And also might result in some CFS patients..or any patients, for that matter, finding treatments that might improve their lives.`

I have found a miracle pill for me..yet...but I know just being diagnosed helped..then knowing 'What helps , What hurts", helped. Then, of course a forum full of people that have been where you are helps.

Salt loading has helped me. Prior to finding out about POTS doctor's didn't think of this very simple thing to help me.

I get angry when I write this.

I hate thinking of someone else going through what I had to to get diagnosed.

Forgive me for going on, but This has been running around in my mind for a while and I just had to get it out

There.

Babu

[Guest dionna]

HUGS to you.

I understand your frustration. Except in Bethesda, MD at NNMC and NIH I have never ran into anyone else that knew anything about POTS. Including NC, SC, and AL. So a total of hmmm.... maybe 5 doctors, including Dr. Goldstein and his assistant.

I don't know if it more rare or just uneducated/ uninformed doctors. I didn't know which term to use, I guess both are actually about the the same thing. But if you really look at it, even the "experts" don't really know that much either. Yes they know some but POTS is poorly studied and misunderstood.

dionna

[India]

It took me ten years or so to get diagnosed. And since I have been diagnosed, I have only found two doctors out of the wealth of physicians that I have seen, who know anything about the condition. It makes getting treatment very difficult.

On one occasion, I passed out at work and my boss put me in an ambulance and sent me to the emergency room. The ER doctor there, not only had never heard of POTS, but he thought it was something I was making up or had "misheard." My husband, who had rushed to the ER to be with me, was absolutely furious with this guy who was treating me like a complete idiot/hysterical female. He could see that my BP was low--that's not something you can fake. But he was so cavalier in his treatment of me, that my husband demanded to see the ER chief and made a formal complaint. Of course, nothing ever came of it or the letter that we wrote, politely suggesting that maybe some education in this condition might help.

Having this problem and dealing with people who don't know anything about it can be exhausting for everyone involved and just compounds the illness. It's very hard for me to explain for my family--who live 9000 miles away and don't see me that often--what I am going through and that I just can't do normal things that I used to do without a thought.

But, I have to keep telling myself, as Dionna said, that even the so-called experts know precious little about the condition, and that there are precious few experts out there. So how can a layperson empathize with what you are going through.

On the lighter side, when I tell people I have POTS, they often mishear and think I have said POX! That may explain my non-existent social life!

Chin up! And rant all you want--it's therapeutic!

India

[ariella]

had I not been persistant, I would have still been undiagnosed.

Persistance is difficult when one is sick.

My POTS doc told me that autonomic stuff is a separate and complex field of expertise, and no, neuros and cardios are not routinely trained to deal with it. Have had to educate more than one neuro, and my cardio seems to think it's no big deal to have POTS, just a little annoying syndrome.

Now that I have been dx, it has helped my family doctor with other patients. Every so often I will get a call from my PCP's office, asking how they can get in touch with my POTS doc (they finally realized the number is in my chart!)

But I know that my experience has educated them to be able to direct someone else.

[dizzygirl]

hmmm.. i feel your frustration.. i really do

I know that for myself.. that i have had symptoms of pots since as far back as i can remember... i also remember that the symptoms that i had as a child where brushed off as "growing pains" or that i was a nervous child..

and as i was a teenager... they told me that i had adolescant adjustment disorder and an anxiety problem... that anxiety as they called it.. was inf act not actual anxiety.. but adrenaline surges... and the tachycarida was not stress it was POTS!!

I was 20 years old before i got diagnosed.. and i lost of count of how many docs i was taken too trying to figure what was wrong....

sicne getting diagnosed.. i have been fortunate enough to have been seen ands treated by really treated by 3 specialist and 2-3 docs that are familiar enough with pots to take a stab at it....

I think that pots is not "as" rare... as people think..its often misdignosed.. for other multiple disorders.. I think that it is not fully understood.. and the public/medical community is undereducated... and that if docs where more educated on ANS?dysautonomia.. that we would be seeing an out pouring of folks with ans dysfunction..

I think there will come a day.. when that day comes i dont know.. but there will come a day when pots... is known and is taken seriously.... and given props i guess for the disabling way that it affects a person..

remember that MS and diabetes it too was un heard of at one point.. and it now get funding and is recognised as a real problem.. by all of society and the medical field...

I know that it does not help us suffering with it now.. and the ignorance of people and med professionals...and the ones that do get it are so over booked/loaded with patients

anyways just wanted to say .. I understand and vent all you want!!

[friday]

On one occasion, I passed out at work and my boss put me in an ambulance and sent me to the emergency room. The ER doctor there, not only had never heard of POTS, but he thought it was something I was making up or had "misheard." My husband, who had rushed to the ER to be with me, was absolutely furious with this guy who was treating me like a complete idiot/hysterical female. He could see that my BP was low--that's not something you can fake. But he was so cavalier in his treatment of me, that my husband demanded to see the ER chief and made a formal complaint. Of course, nothing ever came of it or the letter that we wrote, politely suggesting that maybe some education in this condition might help.

Having this problem and dealing with people who don't know anything about it can be exhausting for everyone involved and just compounds the illness. It's very hard for me to explain for my family--who live 9000 miles away and don't see me that often--what I am going through and that I just can't do normal things that I used to do without a thought.

India

Ugh!! this is what disgusts me. You have a condition , you know what it is, but yet you have to fight to even be believed. It's ridiculous. And God forbid you should mention you got any information off of the internet.

It amazes me that they will laugh at that, but yet the internet was where I got my information about POTS, not doctors.I agree, you have to be careful about what you read and where you read it, but I am so glad that we do have the internet now. There are so many people that need help out there, that aren't getting it from thier doctor.

[friday]

had I not been persistant, I would have still been undiagnosed.

Persistance is difficult when one is sick.

My POTS doc told me that autonomic stuff is a separate and complex field of expertise, and no, neuros and cardios are not routinely trained to deal with it. Have had to educate more than one neuro, and my cardio seems to think it's no big deal to have POTS, just a little annoying syndrome.

Now that I have been dx, it has helped my family doctor with other patients. Every so often I will get a call from my PCP's office, asking how they can get in touch with my POTS doc (they finally realized the number is in my chart!)

But I know that my experience has educated them to be able to direct someone else.

If auntonomic stuff is a seprate field, what kind of doctor would treat it? Is there a certain kind of specialist?

It's nice to hear that your PCP is interested in talking to your POTS doc. It's shows that they take you seriously and are looking to help others.

babu

[friday]

HUGS to you.

I understand your frustration. Except in Bethesda, MD at NNMC and NIH I have never ran into anyone else that knew anything about POTS. Including NC, SC, and AL. So a total of hmmm.... maybe 5 doctors, including Dr. Goldstein and his assistant.

I don't know if it more rare or just uneducated/ uninformed doctors. I didn't know which term to use, I guess both are actually about the the same thing. But if you really look at it, even the "experts" don't really know that much either. Yes they know some but POTS is poorly studied and misunderstood.

dionna

This is what I mean . So many doctors, so little education. How is a person to get any help. Never mind most of these doctors wind up telling the poor patient it's nerves, or depression.

And it's true, even if you find someone who knows about POTS they only know so much.

[friday]

hmmm.. i feel your frustration.. i really do

I know that for myself.. that i have had symptoms of pots since as far back as i can remember... i also remember that the symptoms that i had as a child where brushed off as "growing pains" or that i was a nervous child..

and as i was a teenager... they told me that i had adolescant adjustment disorder and an anxiety problem... that anxiety as they called it.. was inf act not actual anxiety.. but adrenaline surges... and the tachycarida was not stress it was POTS!!

I was 20 years old before i got diagnosed.. and i lost of count of how many docs i was taken too trying to figure what was wrong....

sicne getting diagnosed.. i have been fortunate enough to have been seen ands treated by really treated by 3 specialist and 2-3 docs that are familiar enough with pots to take a stab at it....

I think that pots is not as rare... as people think.. I think that it is not fully understood.. and the public/medical community is undereducated... and that if docs where more educated on ANS?dysautonomia.. that we would be seeing an out pouring of folks with ans dysfunction..

I think there will come a day.. when that day comes i dont know.. but there will come a day when pots... is known and is taken seriously.... and given props i guess for the disabling way that it affects a person..

remember that MS and diabetes it too was un heard of at one point.. and it now get funding and is recognised as a real problem.. by all of society and the medical field...

I know that it does not help us suffering with it now.. and the ignorance of people and med professionals...and the ones that do get it are so over booked/loaded with patients

anyways just wanted to say .. I understand and vent all you want!!

Wow 20 years! That's really horrible. and I know you must have gotten tired of hearing it was anxiety. I love how very doctor now thinks he's a psychiatryst.

When I first got sick they kept mentioning depression, and even a drug I could take. I was like. I think I would know whether I was depressed or not!! Then when the heart rate went up, they started saying it was anxiety. To tell you the truth after 3 years of getting no help getting pushed from doctor to doctor, getting no respect, being told it was stress,.. I developed al ot of anxiety. LOL In fact I would almost cry before every doctor appointment, and most of the times afterward.

It really took a tole on me emotionally to not be supported or believed. so I can't imagine 20 years of that.

I really wish I could do something to help at least inform doctors that POTS exsists .But what can 1 lay-person who's in bed most of the time do?

[hopeful-girl]

I started having symptoms in 1988. I was finally diagnosed in 2001 with POTS. I went almost 14 yeaaars un diagnosed and having it blamed on depresson or anxiety and there is nothing worse than having them tell you it is in your head. I finally found a cardio that I was persistant with. He did a tilt table test and basically the cardio was like you have POTS try this see ya later. He was a jerk! Never informed me of what it was or anything. I eanI did not even know what it stood for. All my learning was done here online. So yes thank god for the internet ;-).

I think the hardest part about the ANS is everyone is SO differnet yet allot of us are very similar. For me My blood pressure is all over the baord. It can drop very low and it can go pretty high. I think the highest ever was like 167 over 130. My lowest has been like 55 or 40. My heart rate will do the same. It can drop down in the 40's. The lowest ever recorded is 39. And it is high too. I think the highest has been 2no more that 200 max! Everyday is different.....................well I should say every miute is different LOL The other day I had two Doctor apointments and one was at 9:30am the other at 1:30pm. The morning blood pressure was 159 over 127 and the afternoon bloodpressure was 88 over 57.

I am curious is anyone else has difficulties with their blood pressure also being all over the place? I usually hear here how it drops or it increases.

I think the first Doctor that diagnosed me had heard of it. However he new nothing about it. Soit is to baad that we have to also educate them especially whenmost of us are very sick.

Night

Corina

[Ernie]

HI,

It took 30 years before I got diagnosed. It's not that POTS is rare it's because it's not taught in med school.

[calypso]

I think since there aren't any concrete ways of eliminating POTS, many doctors are discouraged from working with POTS patients. They all like tangible evidence and treatments that they know will correct diseases, and I think some aren't up to the challenge! But these are just my opinions.

The condition is definitely, definitely underdiagnosed, and I think it's temporary for many people, so that's another reason why maybe it's not much of a specialty.

Amy

[jenwclark]

Oh, I guess we've all got plenty of venting to do here!

The doctor who diagnosed me told me he had come across POTS a couple of times in his practice, but hadn't seen it at all in his training. He's a neuro, but not an autonomic specialist, and he said there was nobody at the university here who was an autonomic specialist, although they are trying to recruit someone. Given how overloaded the POTS doc are, you would think aspiring doctors would want to come in and take some of that business!

I don't know how long I've been sick, because I didn't know the way I felt when I was young wasn't normal. It took me somewhere between 19 and 31 years to get a diagnosis, and I have sympathy for the doctors who just told me they didn't know what was wrong. The ones who piss me off are the ones who told me it was all emotional. For one thing, living with undiagnosed and untreated illness for decades will make you depressed and anxious. For another, I don't know how long it's going to take me to clean up the baggage from 30 years of being told and believing that I was just a lazy, neurotic mess.

After I got the POTS dx, I got a 2-inch thick book on brain health out of the library to fill in some general background. In the section on dizziness, they said that the most likely cause varied depending on the demographic group. They said that in teenage girls and young women, the most likely cause was emotional. Just reading that made me angry. How carefully did they check before they decided that these women were just being emotional?!! Given how many people took years to get a diagnosis, do you think, just maybe, they didn't find a physical cause because they assumued there wasn't one?!

Yes, I suspect that POTS is much more common than we're told, and it has occured to me that it might be worth working on spreading awareness of POTS especially in the CFS and fybromyalgia communities, since there seems to be a fair amount of overlap. A few weeks ago, somebody on here talked about contributing to the medical community as a patient by educating more doctors about POTS, which seems like a wonderful attitude to take. It ***** that we have to do it, but at least we can pave the way for somebody else down the road.

And again, it's so nice not to be alone with this anymore. God bless all of you for sharing the load.

spike

[MomtoGiuliana]

My POTS specialist has a very busy practice--he is an electrophysiologist--and primarily cares for patients in the region with autonomic dysfunction--most of them POTS patients. He told me that he feels it is a fairly common, under-diagnosed condition.

Katherine

[pickledfairy]

Hopful-girl..

I just wanted to respond to your question about others who have fluctuations in BP. I have the same problem. While sitting and lying my BP tends to be high (130/90 with beta blockers) but when I stand it will be around 140/100 the first minute then it will be 100/60 at three minutes and then 150/90 at five minutes and then back down again. My HR just steadily goes up, it doesn't seem to bottom out. My doc suggests that it is the fluctuations are what cause me to have syncopal or near syncopal episodes.

It is making it a challenge to treat because I also have asthma so I cannot be on too high a dose of beta blockers without having trouble. Not to mention trying to combat the hypovolemia with extra salt....they can't quite figure out what to do with that one .

I also agree that it is difficult to find physicians who are well versed in POTS or autonomic neuropathy, and even the ones who you may see that are experts readily admit they don't know much about the mechanism or have a certain tx that works for all people.

Having worked in the medical field (pediatric oncology) I have learned the benefit of being my own advocate. In fact just today, I brought a research article along with me to my dental appointment. Most doctors will take the time to read an article from a peer reviewed journal, and it will help back up the information we all gather, thankfully, from the internet.

Cheers,

Sheridan

Age 28

Dx August 2006-POTS, hypovolemia

October 2006-autonomic neuropathy, testing for gastroperesis

Meds: Mestinon 60mg tid, Labetalol 150mg bid, Advair, Xopenex, Omeprazole

Other helps: Ginger tea for nausea, increased fluids, increased salts, swimming

[bttrflyamby1981]

I'm on 3 years without a dx. I'm going crazy as it is, I can't imagine waiting any longer. Just the idea of waiting even months for a dx is frustrating.

I give big ((((hugs)))) to the people who waited so long for a dx. What strength!

My cardio doc is the one who mentioned POTS to me, but they are still looking for other possibilities. My TTT was normal as well as many other tests. Right now the only thing that is for sure is that I have Tachycardia. He admitted he didn't know much about POTS, but he did know of it.

Amber

[friday]

Well one good thing is the link to CFS. They have started a CFS Awareness campain. I just saw a brief spot about it on the news. I heard they are supposed to have a full page ad in People mag. this month.

They have done reasearch in the name of CFS on symptoms that are POTS related, like orthostatic hypotension, so maybe POTS will be mentioned more often if CFS gets more attention.

babu.

[Kitsakatsa]

It is very logical- POTS is extremely rare.

Undiagnosed or not. If this was not rare, then the whole world would shut down. I cannot believe that thousands of people per state have this. If that were the case, there would be tons of people in the ERs with the same 3 complaints, a massive run on nausea meds and a bunch of people fainting at every store while waiting in line. I think Orthostatic Intolerance is not rare and most older people have that. When I hear that POTS is not rare, I believe that they are mixing up OI with POTS. Do you really, really believe that the world could operate at the pace that it does if POTS was anything but rare? Common medical training is not centered around what is pretty, it is what is common and what is demanding. If lots of people felt the way that we did, it would be everywhere in medical literature.

[India]

I've got to respectfully disagree with the last post. If you read through the postings of people on this site, you will see how long it took us to get diagnosed, how often our complaints were misdiagnosed, and how often, sadly, our complaints were dismissed as "female complaints" or "emotional issues." It is therefore "logical" that there are many people out there with POTS who do not have an accurate DX. POTS, in this fashion, is not unlike many other diseases, that many people in the 21st century now have, but were previously undiagnosed, unrecognized, and untreated in previous centuries, but that is not to say that they did not exist.

As is also evident from this list, POTS manifests itself in many forms--some more severe than others. I myself, for example, rarely get nauseaus. Others are constantly feeling sick to their stomach. Moreover, many people on this list operate in the world--at its modern pace--without complaint but symptomatic, as do many other people with chronic health issues. The world continues to revolve even though probably the majority of people in the world have some sort of health issue.

So, while I would agree that POTS and OI are probably confused oftentimes, I also believe, given the history of other heretofore unrecognised diseases, that POTS is more widespread than we think and more widespread than the medical literature would indicate. Medical literature, like any other literature, is subject to its "fads." One person's research drives another person's research and low and behold, diseases, like depression, for example, are suddenly recognized as much more widespread than previously assumed.

India

[Sunfish]

i don't have the energy to respond to the actual matter of discussion at the moment as i know i'd write a book but did want to clarify that most of the current literature and many of the autonomic specialist use the terms "POTS" & "OI" as one in the same. i know there are exceptions to this, and/or that OI can be considered one component of POTS, but just wanted to chime in with this one point as it has been asked about in the past on the forum....perhaps "OH" was what was being referred to in regard to the elderly as it is common in that population.

melissa

[India]

I know my previous specialist made distinctions between OI and POTS and indeed had many different names for varying manifestations of similar symptoms. Don't know whether that was his personal opinion or reflected the literature. What I've read seems to suggest that different researchers have different opinions on the matter.

Either way, I wish my specialist hadn't left the islands because he was the ONLY person I have seen here who any idea about what was going on with me.

India

[Tessa]

I still have no dx and have been all my existence suffering from this and that... Without knowing what it really was. I have been going from one physician to another and every symptom I had, they said that they were not related...

I have POTS, I am sure, but I need to find a physician who knows about it and who wants to help.

POTS not only is a rare syndrome, most do not know what it is.

My GP said it means vasovagal syncope = fainting when standing up (not when standing for long, etc.)...

Last year, I went to an internist and talked about all the symptoms. My husband talked about my syncopes and pre-syncopes. We did mention everything and she looked at me and said: "I am sure you have hyperglicemia".

I already had a fasting test years ago, with a positive result but she told us it was important to try again and make some blood tests... And then it was negative.

She did not bother about the syncopes we mentioned.

Then she asked for an excercise stress test...

Lightheadedness, Dizziness and feeling exhausted was my body?s quick response to excercise.

The result: intolerance to exercise.

When we met the internist again, she said that there was nothing wrong about the tests. We asked what she had to say about the excercise stress test... Well, she said, you are not used to excercise, that?s all. Your heart was fine, everything was fine... Nothing important, she added.

Nothing important?

As you see, many docs. do not know about POTS...

It is not that we are not lucky with the physicians we see, it is that most do not know.

Love,

Tessa

[desiree942]

Isn't it also that they all know about NCS but it was only in the last 20 or less years that POTS was identified as a subset of NCS patients...

[briarrose]

What I know

The Autonomic research doctor's say that there are over 1 million of us.

The American Autonomic Society says that there are 1-3 million of us.

So this is what I've been saying the last few years -

I live on the West Coast where it is even less heard of then the Midwest or East coast. So does that mean that the doctor's have over inflated the numbers? If there are really 1-3 million of us was it an over night epidemic? Or the fact that this illness has been around and documented for over 100 years easily, was it just never paid attention to because it is so multi-system and God knows when that many symptoms aren't working it must be in your head (but now they are finding out literally in your head!) So this still isn?t being taught in medical school or during Residency and it?s not being talked about in the media yet.

Even Chronic fatigue has been talked about for years yet it is said that at least 1/3 of chronic fatigue patients are actually POTS patients.

So when I went to the NORD conference I discussed this exact subject with several people, doctors, patients, etc.

What we need is publicity to share our stories with the rest of the Nation/World so others can be informed and know that if they are suffering the same symptoms there could be an answer for them too.