Pregnancy and POTS: Experiences & Resources PART 2

In PART 1 of this mini-series, we discussed my first (excellent) POTS pregnancy and the data published regarding having healthy children when you have POTS.  Now on to the tough part of this, as my second pregnancy was a nightmare.  So here's an oversimplified version of what happened, and I'm including some thoughts and links regarding medications at the end.

The Second (NIGHTMARE) POTS Pregnancy:

In December of 2010, I knew something was wrong.  I had been functioning most days for the last few years since my son was born, with fluctuating symptoms that I had been trying to hide from business related folks, and had given up fixing with doctors.  But they were tolerable - episodes of tachycardia, light-headedness, chronic pain and fatigue after working long hours, and severe hypoglycemia.

I was suddenly feeling like I was going drop, and spinning, and my heart rate was nuts.  I was also not retaining any fluids, no matter how much salt loading and drinking I did.  Then I found out I was pregnant right after Christmas, and everything changed.  Within a week, I was sick, bed bound, and knew something was severely wrong. The first week of January was my first trip to the ER after blacking out when I stood up too fast to grab my son (who decided climbing on a counter top was a good idea!), and I couldn't get my heart rate under control after, even laying flat.  This is also when a month+ of vertigo began.  Horrendous vertigo, like I had never before experienced.  

The month of January I was back and forth to the ER and was admitted multiple times.  Then in early Feb I was sent to a rehad/nursing center because I needed constant monitoring, continuous IV fluids, and had a PICC line placed.  Only once the IV fluids were upped did I start to see improvements with the vertigo.  Unfortunately, my PICC line was not cared for, and I developed massive blood clots along the line that were ignored by the staff at the nursing home.  We had to threaten legal action to get me medically released, as the doctor at that horrible place blew me off and thought I was having muscle pain - and was massaging Aspercreme into my clotted area (nice).

After coming home, my nurse was appalled at what I told her and saw the state of my PICC line and sent me to the ER.  We found out I had 5 DVT's and my jugular was completely clotted off. I hadn't been able to turn my neck for days, and they had been rubbing my clotted area at the nursing home, and the clots had broken off and started migrating to various dangerous locations.  I was admitted again to the hospital, but was still blown off when I complained of extreme chest pain and difficulty breathing, and told "it's just your POTS" and sent home after a week.  Well - it was not just my POTS - it was over a dozen bilateral pulmonary embolisms (PE's), plus a 2 cm clot in my right atrium.  Turns out they had sent me home on the wrong dose of Lovanox (a blood thinner) and ignored my OB doctors demands for my clotting factor to be tested.  If I had not kept going back to the ER and demanding they do something or I was going to pull out that stupid PICC line myself, I would have died, along with the baby.  Being pregnant, bed-bound, and having a PICC line is the trifecta of blot clotting risks.  Add to that the fact that they finally tested me for clotting factor conditions, and I came out positive for the Factor V Leiden gene, so basically I was a clot waiting to happen.  It took me almost dying to get the treatment I needed, and even after that - it was a 9 month struggle and fight with the hospital and doctors around here.  That's why I advise people to have a plan in place and a support network of good doctors familiar with your brand of POTS.

Pregnancy and POTS: Experiences & Resources PART 1

This is a big issue for women and families affected by POTS, and the topic I get the most questions about.  Being that POTS affects mostly women of childbearing age, and there are very few resources out there, and even fewer research articles, this is not surprising.   I have heard from patients that their doctors are telling them not to have kids, which is heartbreaking, and the science just doesn't back that up for MOST women with POTS.  POTS already robs us of so many things- don't let it rob you of kids (if you want them)!  If you  don't have any life threatening genetic diseases that can be passed on, are not on any medications that keep you alive that would damage a baby, and really want kids - there is no reason not to consider it in my opinion.   It is a very personal decision.  Your underlying cause of your POTS is a HUGE consideration, as well as your functionality and support system.  Of course consult with a doctor about anything medical, as I am not one.

The issue of what drugs to take, how to plan, and what to expect can make for a frightening experience if you don't get as educated as possible on the subject.

I tell everyone:  PLAN FOR THE WORST, HOPE/PRAY FOR THE BEST.

Things to consider when planning for the worst:

-Do you have a good medical team of doctors, including a POTS knowledgeable cardiologist, a high risk OB, and possibly a neurologist? 

-Do you have a support network in place in case you are bed bound, non-functional, or severely ill during pregnancy?  Especially if you have other children?

-Do you have a support network in place to help with the baby after you give birth, especially if recovery takes longer than expected or you have complications from birth?

-Are you on any medications that could possibly harm the baby, and are you willing to try and function without them if necessary?

-Do you have any underlying conditions that could further complicate pregnancy, and specialists and support lined up to help deal with those possible complications as well? 

What is POTS - Really, what is it? REALLY?

Flower POTS

After compiling the big long post that will be broken into a few parts about why you need to find your POTS cause, I wanted to discuss what POTS really is.  

Copper POTS

There is so much confusion and debate between doctors, and amongst people on the support groups and blogs.  

This dude smokes POT(S)

So what in the world is POTS? 

You can print this out and bring it to your doctor if they are unaware, or share with anyone who may be confused on the subject.  I would recommend only printing what is between the lines, not my silly pictures.
___________________________________________________________________________

The most recent consensus definition of POTS by most of the lead researchers in the field is this:

"4.1. Definition: The postural tachycardia syndrome (POTS) is characterized by a sustained heart rate increment of ≥ 30 beats/min within 10 min of standing or head-up tilt in the absence of orthostatic hypotension. The standing heart rate for all subjects is often ≥ 120 beats/min. These criteria may not be applicable for individuals with low resting heart rates. For individuals aged 12–19 years the required increment is at least 40 beats/min. The orthostatic tachycardia may be accompanied by symptoms of cerebral hypoperfusion and autonomic overactivity that are relieved by recumbency.

4.2. Pathophysiology: The etiology and pathophysiology of POTS are unknown but are likely to be heterogeneous. The syndrome is associated with  deconditioning, recent viral illness, chronic fatigue syndrome and a limited or restricted autonomic neuropathy. The differential diagnosis includes conditions that cause tachycardia, such as thyrotoxicosis, inappropriate sinus tachycardia and other
cardiac rhythm abnormalities, pheochromocytoma, hypoadrenalism, anxiety, dehydration, and medications (e.g., vasodilators, diuretics, and ß-agonists).

4.3. Epidemiology and clinical features: The prevalence of POTS is not known. The syndrome is more common in women. The orthostatic symptoms consist of lightheadedness, visual blurring or tunnel vision, palpitations, tremulousness, and weakness (especially of the legs). Other symptoms include fatigue, exercise intolerance, hyperventilation, shortness of breath, anxiety, chest pain, nausea, acral coldness or pain, concentration difficulties and headaches. On clinical examination, in addition to the heart rate increment, pulse pressure may be reduced and acral coldness may be present. Continued standing may lead to venous prominence, cyanosis and foot swelling. A hyperadrenergic state is present in some patients who have a resting tachycardia, sweating, and tremulousness."

Source: Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome. Freeman R et al. , Auton Neurosci. 2011 Apr 26;161(1-2):46-8. Epub 2011 Mar 9. 


Here is the complete list of contributors: Roy Freeman, Wouter Wieling, Felicia B. Axelrod, David G. Benditt, Eduardo Benarroch, Italo Biaggioni, William P. Cheshire, Thomas Chelimsky, Pietro Cortelli, Christopher H. Gibbons, David S. Goldstein, Roger Hainsworth, Max J. Hilz, Giris Jacob, Horacio Kaufmann, Jens Jordan, Lewis A. Lipsitz,  Benjamin D. Levine, Phillip A. Low, Christopher Mathias, Satish R. Raj, David Robertson, Paola Sandroni, Irwin J. Schatz, Ron Schondorf, Julian M. Stewart, J. Gert van Dijk


___________________________________________________________________________ 

So - that is only what all these various researchers with all the differing definitions of POTS agreed upon.   There are a few big names missing, like Dr.'s Grubb and Mathias, but this seems to be some sort of effort to come to an understanding of the minimum requirements for a POTS diagnosis, and to get the point across that blood pressure (BP) changes are not a requirement, and even includes the statement that POTS only occurs in the absence of a blood pressure drop.  This still confuses me, because my understanding was that you can have POTS and orthostatic hypotension or NMS.  I'm going to hypothesize that they are finding in patients with the drop in BP, it is a sign of something else going on, and doctors need to dig deeper than the typical causes of POTS.  Or that "everyday doctors" that don't specialize in dysautonomia were ruling out POTS without a drop in BP.  I plan to email a few of these doctors for clarification, hopefully someone will respond!

The majority of POTS patients: good looking, young women. Who are told they have anxiety. 

Summary: 


POTS is a syndrome (a collection of symptoms, not a disease).  If someone's heart rate increases at least 30 beats per minute (BPM) when standing, many times above 120 BPM, within 10 minutes, that is POTS.  Some of the symptoms are relieved once laying down, but many are chronic and mimic other conditions.  It has many causes, and affects mostly women.  Certain dangerous conditions that mimic POTS or coincide with POTS need to be ruled out.

POTS does not include, by defintion, any changes in blood pressure, those are separate disorders.  In fact, in the consensus statement, they say that you only have POTS in the absence of a drop in blood pressure.  So if your doctor tries to tell you that you are fine and it's just anxiety because your blood pressure didn't drop, or because you are a young, healthy looking woman, show them the above statement, along with this statement about the difference between anxiety and POTS (and maybe get a new doc!).  

See the post regarding Syncope and Neurally Mediated Syncope for more details on disorders related to dropping blood pressure and fainting.




As a side note - this was the first listing in Google when I typed in POTS, of course from that most reliable of sources, Wikipedia (insert sarcasm):

POTS

From Wikipedia, the free encyclopedia

Jump to: navigation, search

Look up pots in Wiktionary, the free dictionary.

POTS may refer to:

• Plain old telephone service, basic wireline telecommunication connection
  • POTS codec, a digital audio device
  • DSL filter, also known as a POTS filter
• Postural orthostatic tachycardia syndrome, a medical condition
• Poverty of the stimulus, an argument in favor of innate grammar
• Protector of the Small, a series of fantasy novels
• The Path of the Shell, an expansion pack of the computer game Uru: Ages Beyond Myst
• Pacific Organized Track System, airways between Japan/Southeast Asia and the US mainland
• Plain old television service, or over-the-air TV

Oh, and this guy IS SO NOT POTS:

Also, here are some POTSies, which came up in my Google search as well:

And if you haven't seen it, here is a PG-13 video I made about the ER experience for a POTSy called "What the hell is POTS?":
 

Until next time POTSy dudes and dudettes.
Claire

What Is Causing Your POTS? And Why It IS A BIG DEAL: A Printable, Sourced Guide.

Many of us hear by our doctors that POTS is "no big deal." 

Or they just plain have no clue what it is.  

Or, "you just have POTS."

Why do they think this?  Why don't they know what it is?  If an estimated million people have it, and even more have dysautonomia in some form, why don't they know?

As  patients (and hopefully the caregivers that see how sick we can be on a day to day basis), we know how big of a deal it is.  We know what a struggle POTS is, and how unpredictable and disabling it can be, even if it is generally mild and flares occasionally.   So why is this the view by so many in the medical profession, and why is it so unheard of?   I have been contemplating and compiling this list for a while now, and in light of the people we have lost recently in the POTS community, I thought this may be useful for those of us trying to find the cause of our POTS.  Also to explore why it is a big deal, even if POTS per say will not kill you, and why, in my opinion, it is absolutely necessary to find out what is causing your POTS.  Not only to rule out the really dangerous stuff, but to avoid the medication merry-go-round, as I like to call it.     

Updated Article Library!

LIBRARY: Articles For A Doctor/ER Visit

I have found that many of my local doctors have very little (if any) knowledge about POTS and Dysautonomia.  I usually try and bring at least one journal article with me to give them, and I stress that these are peer reviewed journal articles, not just random stuff from Google or Wikipedia.  They are research studies published in medical journals, and should give you credibility in the doctor's eyes, and if you are lucky, won't bruise their ego :) 

I have categorized them by issues common to POTS sufferers when trying to obtain treatment from both general practitioner doctors, specialists unfamiliar with POTS, and ER doctors.  Most are full text - but some are only abstracts, your doctor should be able to use it to look up the full article if they feel it's relevant.  It is a starting point - I DID NOT CITE THESE IN PROPER SCIENTIFIC CITATION FORM INTENTIONALLY.  Hopefully they are more accessible this way and you can pick and choose which one's you need. You may want to add the most relevant articles to your POTS Binder. If you have any to add or topics you'd like covered, please leave a comment or contact me. 


General POTS Info/Treatment:

1.  The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management (this in my opinion is by far the best synopsis of POTS for any unfamiliar doctor, and the complete article is free) by Satish R Raj, MD MSCI, Autonomic Dysfunction Center, Division of Clinical Pharmacology, Departments of Medicine & Pharmacology, Vanderbilt University, Nashville, Tennessee, USA

2.  Orthostatic Intolerance (an AMAZING guide to all the forms of OI, including POTS, NCS, etc...) Dr. Stewart, Associate Chairman of Pediatrics, Director, Center for Hypotension, Westchester Medical Center; Professor of Pediatrics and Physiology, New York Medical College.

3.  The neuropathic postural tachycardia syndrome . Robertson D., Jacob Recanati Autonomic Dysfunction Center and the Department of Internal Medicine C, Rambam Medical Center, Haifa, Israel.

New Autonomic Clinic Opening in Norfolk, VA (NEAR ME!)

So for any Virginians (and other East Coaster's) that haven't been able to get a full autonomic work up - I have great news!  (Insert happy dance while seated!)

I met with Dr. Chemali, who just came to Norfolk, VA from the Cleveland Clinic, and specializes in Dysautonomia, and has worked with some of the best minds in the field.  As we all know, Mayo, Vanderbilt, and Cleveland Clinic are where you go to get quality autonomic testing done.

Well, he is opening a full lab right here in Norfolk!  It will be located in the new Heart Hospital of Sentara Norfolk General.  My understanding is that it will be fully up and running in September.

This is a God send for me, and I think many others.  There is a SERIOUS shortage of proper equipment to diagnose Dysautonomia in Virginia, and even more so there is a shortage of specialists. Some facilities may have a few tests they can run, but their doctors don't really diagnose and treat the big picture that is dysautonomia.   I was shocked when Hopkins had no one to help me while I was there.

My hope is that Chemali will train up a few doctors and get the ball rolling, or maybe bring in another specialist or two, and start seeing patients and doing clinical trials/research like crazy.

Here is a link to Dr. Chemali and the Neurology Group's Info.   No one else in his group treats dysautonomia of any sort (I've seen a few - don't bother), so make sure you ask for him.  His nurse and the staff are very nice.  This is very exciting!

Now; a quick illustration/exploration of various happy dance options (modified to work with your POTS of course):

the nun happy dance

the Calvin and Hobbs happy dance

the robot with no arms happy dance

the cool turtle happy dance

the all time classic Snoopy happy dance

Hope everyone is having a great and unPOTSy day!
--Claire

What The Hell is POTS?

I made this based on a pole of the experiences of POTSies in the ER, and hopefully as a funny educational tool.  It is a bit PG13, the only bad language is "freaking" and "hell" said many, many times.  Feel free to share.  Enjoy!

Stand Up POTSies - You DO look sick!

Spoons = Energy.

So I was discussing the whole "invisible disability" and "but you don't look sick" labels/movements with someone the other day, and it made me think about the whole issue in terms of POTS.  I'm on board with supporting the Spoonie movement, as it explains how us POTSies and Dysautonomia folks have to delegate what to spend energy on, and is a great analogy to send to friends and family about our condition.  But I feel labeling our condition as invisible is not accurate.

Many people with POTS and dysautonomia are young, and do not have apparent or obvious deformities. This does not equal not looking sick, or being invisible.   

START A STOP POTS REGIONAL CHAPTER!

Are you looking to start a support group with resources in your area?

If you are serious about spreading the word, raising awareness, and helping compile data on doctors treating POTS in your area - contact me!

I will help you set up your own site, and use the information and content on here (which is copyrighted to STOP POTS) to get started.  I am also in the process of getting STOP POTS official Non-Profit status.

The main goal of having regional chapters is to provide links to local doctors, support materials relevant to your area, and possibly hosting or promoting local awareness events in your region.

We need to spread the word about POTS diagnosis, treatment, and support - and what better way to do that than to work TOGETHER?!?!


Email me (Claire) at stoppotsvirginia@gmail.com for more info and to start chatting about this.

I really believe the more local groups we can get going, the more doctors will have to learn about POTS, and we can reduce the diagnosis times, improve treatment options, and help others suffering from this illness.

Thanks!!!
-Claire

POTS Symptom Tracker

Get the new POTS Symptom Tracker!  Email me and I will send it to you, I can't figure out how to post it here for download (yet), only as an image.

• Available as an Excel spreadsheet or PDF, with easy to fill in info, either on your computer or by hand
• The symptoms listed are based on cited research, you can print it and bring it in to your doctor, along with the article if you wish
• There are links with an explanation on taking your blood pressure and heart rate as well
• You (and your doc) can see trends in your symptoms and vitals over time

Hope this helps!  I know it helps me to have concrete data to see patterns in my symtoms.    

Here's an image of it, you can click on it and save it for your use - print it or copy it into a word document:

I will work on getting the file posted here, until then, feel free to copy and paste it into a word doc, or contact me for it.  Or make your own!  Have a great unPOTSy day!

****Found a way to FILE SHARE on Facebook - here's the link to download the XL file!

POTS is NOT a rare illness!

I keep hearing the phrase "rare" disease, "rare" illness, and "rare" disorder.  I am guilty of using this phrase myself.

But what is "rare"?  Not regarding steak, but in terms of an illness or disease?

The National Institutes of Health (NIH)  defines a rare disease or illness as:

"The prevalence of a rare disease is usually an estimate and may change over time. A rare (or orphan) disease is generally considered to have a prevalence of fewer than 200,000 affected individuals in the United States. Certain diseases with 200,000 or more affected individuals may be included in this list if certain sub-populations of people who have the disease are equal to the prevalence standard for rare diseases."

Now lets look at POTS. 
Postural Orthostatic Tachycardia Syndrome is defined by Low et.al: 

An Open Letter to Doctors (Regarding the Anxiety Bias)

Dear Doctors:

I am a female.  I have an illness.  Because of many of your biases towards young women, women in general, and POTS (Postural Orthostatic Tachycardia Syndrome) sufferers, my illness was blamed on anxiety for many years.  This not only happens with my particular illness, but with many lesser known and rare illnesses.  I am not only speaking to you male doctors who are guilty of this, but the female doctors as well - who have been just as condescending and dismissive as their male counterparts.

My illness is categorized as a dysautonomia. My form of dysautonomia includes POTS (Postural Orthostatic Tachycardia Syndrome), and a few others that I am now finally being tested and treated for.  It has been an almost decade long journey, and because of this "anxiety bias", I am just now getting the correct testing and treatment.  I had to let my illness progress and be so sick that I was hospitalized for almost nine months and almost died for most doctors to take me seriously.   When I first came to you for help, I was experiencing REAL symptoms.  I have no history of anxiety, depression, or any mental health illnesses.  Though - even if I did, you still should have listened to me.

After the first few years of being told I had anxiety (even with a positive Tilt Table Test for POTS), I had read the medical journals and literature, and self diagnosed myself with dysautonomia.  I brought this information to my internist and he agreed with me.  He sent me on to find treatment from doctors he thought could help me.  Unfortunately, I was told bluntly, "If you really had dysautonomia, you would be dying the hospital," and , "you just have anxiety and panic attacks, " and - my favorite - "you are just going to have to learn to deal with being dizzy and your heart racing, it is just anxiety."  These are exact quotes, all from local Neurologists, who I have found to be notoriously unhelpful, degrading, cold, and unwilling to help find the cause or treatment for my symptoms.  I have seen 8 local neurologists, who have all either dismissed me, or have told me, "I don't want to deal with you, dysautonomia is too complex, and I don't know anything about it."  These things were said after I had a positive Tilt Table Test, the standard for diagnosing POTS.

Many of my daily symptoms are similar to those of anxiety.  Anxiety responses are controlled by the same nervous system that is malfunctioning in me.  This is an except from the journal article Postural tachycardia syndrome and anxiety disorders  (by Svetlana Blitshteyn, Clinical Assistant Professor of Neurology, State University of New York at Buffalo School of Medicine and Biomedical Sciences):

Journal articles you can print and bring to your doctor...

I have found that many of my local doctors have very little (if any) knowledge about POTS and Dysautonomia.  I usually try and bring at least one journal article with me to give them, and I stress that these are peer reviewed journal articles, not just random stuff from Google or Wikipedia.  They are research studies published in medical journals, and should give you credibility in the doctor's eyes, and if you are lucky, won't bruise their ego :) 

I have categorized them by issues common to POTS sufferers when trying to obtain treatment from both general practitioner doctors, specialists unfamiliar with POTS, and ER doctors.  Some are only abstracts, but your doctor should be able to use it to look up the full article if they feel it's relevant.  It is a starting point, and I have included a link to the DINET site's compilation of links to papers and organizations that deal with POTS and co-occurring illnesses. You may want to add the most relevant artiles to your POTS Binder. If you have any to add or topics you'd like covered, please leave a comment or contact me.

General POTS info/treatment:

1. The neuropathic postural tachycardia syndrome

2. Postural Tachycardia Syndrome (POTS)

3. The Postural Tachycardia Syndrome: A Concise Guide to Diagnosis and Management

4. A Review of Postural Orthostatic Tachycardia Syndrome  

5. Postural tachycardia syndrome-current experience and concepts. 

6.Postural orthostatic tachycardia syndrome: a clinical review.

ANXIETY AND POTS ARE NOT THE SAME THING

1.Postural tachycardia syndrome and anxiety disorders


Hyperadrenic POTS, MCAD (Mast Cell Activation Disorder) and Mastocytosis:

1.  Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders

2.  The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management

3. Orthostatic intolerance and tachycardia associated with norepinephrine-transporter deficiency.

Hypovolemia & Dehydration:

1. Hypovolemia in syncope and orthostatic intolerance role of the renin-angiotensin system.

2,  Renin-Aldosterone Paradox and Perturbed Blood Volume Regulation Underlying Postural Tachycardia Syndrome

3. In Support of IV Therapy For POTS Patients  
***This is not a medical journal article, but references a few, and has a clearly explained, concise argument for IV therapy

4. Effects of volume loading and pressor agents in idiopathic orthostatic tachycardia.

For (LOTS!) more links/Info on POTS related illnesses:

Check out the Dysautonomia Information Network (DINET):
http://www.dinet.org/links.htm


 

Three Tips for ER/Doctor Visits

Going to the doctor or ER can be stressful, not only because you feel sick, but because of the responses many of us get from the medical professionals we deal with.  Here are a few tips to help you prepare:

1. Grab your POTS BINDER; filled with all your medical info (medical history, current/past symptoms, a few Medical Journal articles related to your brand of dysautonomia, if you have them: details about your diagnosis and standing orders for treatment, current med list, and a list of questions).

2. Put it in your "Waiting Bag", filled with your POTS Binder, water, snacks, current medication bottles, entertainment of some kind, and maybe an iPod.

3. Stand your ground.  Many of us feel beaten down and worn out emotionally and physically by the toll this disease takes on our bodies.  But you have to be your own advocate! And if you are not feeling up to it, try to bring someone to advocate for you. If a doctor is not listening to you, or blows your symptoms off, remind them that you are the patient, and they have taken an oath to "do no harm". By dismissing your issues, they are harming you.  Mentally, and possibly physically, by ignoring the very real (but misunderstood) symptoms of many forms of dysautonomia.  There is nothing wrong with reminding them of that. 
This is why I like to come prepared with Medical Journal articles (even summaries), because it backs up your claims, and can serve as a reference for an unknowing - but well meaning - doctor.  A great example of this pertaining to POTS is the fight many ER's put up with treating patients with hypovolemia with IV fluids.  They don't understand the difference between dehydration and hypovolemia.
I was lucky, during my last ER visit when my blood pressure and heart rate were all over the map, the resident actually asked me how many bags of fluid I'd like and at what rate.  I had previously told him (calmly) that my POTS issues improve with IV fluids, that I understand they have to check for clinical dehydration, but my numbers would most likely be fine (my sodium gets low on occasion), but that I was hypovolemic.  He was very kind and we chatted about POTS for a few minutes while they got me hooked up. I wish every doctor was like this, but unfortunately they are not, and some just don't get it.  But if you can wave a Journal Medical Article in their face, they can't really argue with you.  If they do, and are unwilling to help, ask to speak to a superior or attending physician (when at ER), or go see another doctor.  I also believe in writing letters and filing complaints to state boards, to prevent others from having to go through the same thing.

PLEASE ADD YOUR OWN SUGGESTIONS!!!! 

Where Did I Get This Lemon?: What is Dysautonomia? What is POTS?

This is a great article and blog! 

Where Did I Get This Lemon?: What is Dysautonomia? What is POTS?: Almost everyone I know is confused about exactly what POTS and dysautonomia are. These disorders are extremely difficult to diagnose. Ma...

Creating a POTS Binder

So having POTS means lots of information, paperwork, and running around to doctors.  The easiest way to stay organized is to create a POTS Binder.  Get a 3 ring binder, and either buy or make dividers.  Keep it clean looking and undecorated, because doctors already tend to think POTS patients are a bit whacky, and you don't want your Spongebob sticker collection (or any others!) adding to that.

You can put whatever you want in it, but here are some suggestions for info and categories you may need when going to a doctor, the ER, or dealing with insurance or disability (in no particular order):

*Medical Records/History: I'm starting to gather these for two reasons;
a) I can't always remember everything, and it's handy to have things like lab results available when you need them.
b) I've seen that my experiences in the ER or with a hospital stay can be quite different than what the doctors report, and they sometimes need to be corrected. It is a good idea to keep copies handy both for review and to reference when with other specialists.

*Symptom List: and I suggest including ALL of them, not just the targeted ones you think that doctor deals with.  I had an ENT first mention Dysautonomia to me many years ago because I brought up all the whacky stuff that I was dealing with outside of just my ears.  He just happened to be familiar with Dysautonomia, and made the suggestion that I look it up. So - you never know! Many doctors do fellowships at specialized hospitals like Mayo or Vanderbilt, and may know something extra that will help.

*Medical Journal Articles: see the other post with links to these here.  Instant cred with your doc that you have done your homework, and provides them much needed research info and resources if they don't have them (and chances are they don't).

*Your official diagnoses: Who, what, where, and when. 

*Any standing orders or instructions in case you end up in the ER: If you have a good primary care doc that knows you need IV fluids when you crash sometimes, they may be able to write or sign a standing order or recommendation for the ER docs.  I've had very little luck with the doctors listening to me when I end up in the ER, and sometimes lay there for hours waiting on lab work, and all I need is a bag of fluids.  This is also where having an explanation of hypovolemia vs dehydration comes in handy as well!

*If you are going to a specialist, a list of questions for them.  I always forget something if it isn't written down (gotta love that brain fog), and in the weeks leading up to the appointment I keep a running list with me to jot things down as I think of them.  Have extra paper in this section to take notes on your visit.

*Don't forget a pen!

That's it!  I think of going to a new doctor or the ER as going into battle (how sad!), and this is your weapon.  It shows them that you are not just having a panic attack, and are not crazy, and that they need to listen to you because you are prepared and educated about your disease.  Doctors take an oath to do no harm, and you are a paying customer, and if they give you a hard time or have an ego about being offered information, it may be time to find a new doc!

Good luck and I hope this helps!