Saturday, June 30, 2012

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.

Volunteer Positions for Dysautonomia SOS!

We are on our way!  Very excited about the amazing team we have forming for Dysautonomia SOS, the new Non Profit serving VA, DC, MD and beyond.  A formal announcement will be coming soon, but we still need help!  If you or any family/friends are intersted in volunteering, please contact us at  Together, we can make a HUGE difference!

Dysautonomia SOS Volunteer Project List
Dysautonomia SOS is a new Non-Profit organization forming to better serve the VA/DC/MD area’s dysautonomia patients, as well as providing materials for everyone online.  We need your help to get up and running, and start improving the lives and treatment options for patients. 

If you are interested in any of the following projects, please email Claire at   Please use the exact project name to identify what you are interested in.  Feel free to tell us about yourself so we can get to know you as well.  Patients, family, caregivers, and friends are all welcome to volunteer!  Thanks for your interest and support in making this a success!

Physician Listing Coordinators:  Update the physician listings for VA, DC, and MD.  We will need the name, specialty, facility name (if applicable), phone, email, and full address. We are looking to list anyone who treats and has experience with dysautonomia, including primary care/internal medicine doctors.   If you would like to research a specific region, let us know.

Content Editors:   Review materials for the newsletter, web content, brochures, scientific write-ups, and any other content to check for grammar, punctuation, and content accuracy.   

Science Writers and Advisors:  Looking for anyone with a scientific or medical background to help write educational materials for a variety of projects, and review materials periodically.

Newsletter and Feature Contributors:  We will need contributions for our newsletter and web features on a regular basis. Everything from patient stories, to regular columns related to living with Dysautonomia.  Parenting kids with POS, caregiver stories, diagnosis stories, treatment options that have worked for you, etc…

Sponsorship Coordinators:  Collect and research local/regional potential sponsor information.  Anyone providing services that pertain to dysautonomia, or any personal contacts with businesses that would be willing to be a sponsor need to be compiled and eventually contacted.  If you would like to research a specific region only, let us know.

Events/Fundraising Coordinator:  Oversee and aid with local and regional events.  Find creative ways to fundraise for the organizations projects and research we are supporting. Professional event experience preferred.

Accountant/Bookkeeper:  Someone with NPO  to prepare our annual report and help with bookkeeping.

Regional Support Group and Event Hosts:  VA/DC/MD is a large region!  If you would like to host an event or support group in your area, let us know.  Whether it be a Skype meeting, in person, or an official event, we will need as many people as possible helping with this.  

Social Media Coordinator:   Make sure all social media accounts are up to date and the latest news is being shared about our organization in a professional manor.   

Media Blast Brigade:  We need lots of “Re-Tweeters” and “Re-Posters” of important news and announcements across social media.  If you would like to updated on any new happenings or announcements that you can share with your network, send us an email and we’ll keep you posted (so you can re-post!).  This is a VERY important part of our awareness campaign!

General Volunteers:  We will always need volunteers!  Want to be notified when new projects and positions come available?  There a ton in the works.  Email us and we’ll keep you updated!

Thursday, June 28, 2012

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.


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? 

Monday, June 25, 2012

Non-Profit Organization Update: How To Get Involved

I have mentioned on this blog before that I am co-founding a new Non- Profit.  Some things have changed that I wanted to disclose and update you all on.

Back in November or so, I had started putting together thoughts and ideas for a new Non-Profit Organization (NPO) that would help improve the situation across Virginia, the DC area, and MD.  I had big ideas about how to help people avoid what I have gone though for the last 10 years, but knew I could not do it alone, especially from a bed on a laptop.  Part of my vision was uniting all the bloggers and organizations into one happy Dysautonomia awareness family, because everything seems very disjointed and fractured.  Well, Team Fight POTS was birthed out of that, and it has been great to work with other bloggers and activists, and hopefully we have helped people along the way.  Unfortunately, after reaching out to a few non-profits, not many actual organizations are willing to work together it turns out.  Bloggers and frustrated patients, yes - organizations, no.  So I decided I would start my own.

I began with this blog, and Team Fight POTS came shortly after, and in the process met a few folks with the same idea.  Originally we tried to work with an existing NPO, but eventually decided to work together on a completely new NPO, Dysautonomia International, which I have mentioned on here before.   

Unfortunately, after lots of hard work and many hours, I resigned and am no longer working with the group Dysautonomia International for a variety of reasons. We have some irresolvable differing issues and ideas about how to best achieve our goals, and I actually am going back to focusing on VA, DC, and MD.  The situation here for dysautonomia patients is BAD, and there is a massive lack of resources and public knowledge.  That needs to change.  That can not be done with a blog alone.

We already have an amazing group of people to get things started (or continued, actually), and we are filing paperwork and finalizing our web content and team.  More details will follow as they evolve.  My goal has always been to educate educate educate - and empower patients to improve their lives.  

So the new non-profit will be called.....drum roll please........

Dysautonomia SOS: Searching Out Solutions 

The NPO will focus on improving local resources, but will also provide (many free) materials for anyone anywhere with dysautonomia.  Our focus will be on the Orthostatic Intolerance disorders: POTS, NMS/NMH, OI, and OH.  We will provide basic info on the others.  We have BIG PLANS for our region, and helping patients get the treatment they deserve, access to the resources they need, increasing awareness, and raising funds for research.   AND FINDING YOUR POTS CAUSE! We hope to work in conjunction with a nationally focused NPO, and we'll see what happens, and few things are in the works.

We have a great group of volunteers and medical advisers, but are looking for more help.  We are 100% volunteer run, and applying for 501(c)(3) tax exempt status.  We are laying out clear cut ideas and goals so that everyone that volunteers knows where we stand and what we want to achieve.  They include (but are in no way limited to):
  • Focusing on POTS, Syncopal disorders (NMS/NMH, OI, OH), Autonomic Neuropathy, and finding the underlying causes of these disorders.   Providing information of the other forms of dysautonomia and links to resources,
  • Empowering and educating patients, caregivers, medical professionals, and the public by providing credible, medically reviewed educational materials and solutions for everyday life, available for FREE to everyone online,
  • Providing free brochures and access to these materials in doctor’s offices, hospitals, schools, and other applicable public places across the VA/DC/MD region (you will be able to order these materials to print and distribute in your own region outside VA/DC/MD as well), thus increasing public awareness, decreasing diagnosis time, and improving treatment options for dysautonomia patients,
  • Funding research, fellowships, new autonomic equipment, and projects that directly impact and improve the lives of patients in VA/DC/MD, &
  • Working together with the medical community , other organizations, and public to provide support and improve the quality of the lives of dysautonomia patients in our region and around the world.
If you are interested in volunteering, even a small amount of time - please email me for a list of positions and needs we have right now, or if you want to receive updates and info on volunteering as it becomes available.  And you don't have to be in VA/DC/MD or know about Dysauutonmia to get involved!   I still hope to work with the other organizations out there, I really feel like we are such a large patient population, and we need to unite to get things done, especially regarding awareness and research.

This may be wishful thinking, but who knows?

If you would like to apply to be on our Medical Advisory Committee or Board, please email Claire at  Volunteers do not need to be located in VA/DC/MD, as we will be providing services that aim to help and are available to EVERYONE.  


Thursday, June 14, 2012

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. 


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):


From Wikipedia, the free encyclopedia
Jump to: navigation, search
POTS may refer to:
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.