What the Hell is POTS? The video. By me.

Visit with a DOCTARD! Brilliant!

I love this!  So many of us with under-diagnosed illnesses go through this.  I am going to stop saying POTS is rare - because more people have POTS than MS or Autism.  Our doctards need to become DOCTORS and get educated!

An Open Letter to All 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):


"The results of the study demonstrate that patients with POTS do not have an increased prevalence of anxiety disorders compared to general population, thereby challenging a common misconception that patients with POTS are more likely to have anxiety disorders. The study by Raj et al. is in agreement with two other studies that differentiated POTS from anxiety disorders. One study showed that excessive heart rate response during a tilt table test was not due to anxiety (2), and another one demonstrated that symptoms of POTS were phenomenologically different and clinically distinguishable from panic disorder symptoms (3). Taken together, the three studies provide evidence against a hypothesis that POTS and anxiety disorders are linked either by association or causation. "

I have a release of norepinepherine (adrenalin) in response to my blood not staying where it is supposed to, and pooling in my extremities and abdomen, therefor dropping my blood pressure.  The release of norepinepherine and catecholemines in an effort to cause my vessels to constrict in POTS itself causes anxiety - through sympathetic over activity among other things.  Even changes in blood flow in the heart can result in feelings of fight or flight. Since anxiety, panic and POTS all involve the same branch of the autonomic system, the feelings are very similar.  But the test results do not lie.  I had a positive tilt table test back in 2003, and it was ignored on many occasions.  I was dismissed by many of you, especially Neurologists, and told I couldn't possibly be as sick as I was feeling, and that it was all in my head or due to anxiety.  

Throughout the almost decade of you giving me blank looks, telling me I am just having anxiety, and being forced to try medicines for depression and/or anxiety that I reacted very badly to, I have in fact, developed secondary anxiety (which I was diagnosed with in 2006 as being secondary as a result of my medical conditions).  I was not listened to in the hospital in 2011 when I had been diagnosed with 5 DVTs from the negligence of a PICC line, and I was having severe suffocating chest pains.  I was told it was "just my POTS and anxiety".  After a few days and trips back to the ER, the doctors involved finally discovered I was having multiple bilateral pulmonary embolisms, and had a 2 cm blood clot in my right atrium.  I knew something was wrong, but you did not believe me, and it almost killed me.  I also have a chemical intolerance, and react very strangely to many pharmaceutical drugs, and the reactions can be scary.  I have developed random reactions to foods and other allergens - for which I am now being tested for Mast Cell Disorders (another rare and under diagnosed group of illnesses), but once again, I was told I am over-reacting and anxiety is to blame.  I have told you about this time and time again, and am very rarely listened to.  The combination of these issues: POTS, frightening reactions to medication, anaphylactic reactions to allergens, and almost dying last year, have in fact caused me great anxiety.  I think they would cause YOU great amounts of anxiety as well.

According to an article published in The Journal of Neurology and Neurosurgical Psychiatry by Raj et al, "Patients with postural tachycardia syndrome (POTS) often appear anxious and report inattention. Patients with POTS were formally assessed for psychiatric disorders and inattention and compared with patients with attention deficit hyperactivity disorder (ADHD) and control subjects."

The results and conclusions of the study:

"Results: Patients with POTS did not have an increased prevalence of major depression or anxiety disorders, including panic disorder, compared with the general population. Patients with POTS had mild depression. They scored as moderately anxious on the Beck Anxiety Inventory but did not exhibit a high level of anxiety sensitivity. Patients with POTS scored significantly higher on inattention and ADHD subscales than control subjects. These symptoms were not present during childhood.

Conclusions: Patients with POTS do not have an increased lifetime prevalence of psychiatric disorders. Although they may seem anxious, they do not have excess cognitive anxiety. They do experience significant inattention which may be an important source of disability"

I am not the only one. Time after time, women, POTS sufferers, people with rare diseases, and younger girls are told anytime they have an elevated heart rate, blood pressure issues, or random unexplainable neurological or autoimmune symptoms that they are just stressed out, have anxiety, or in the case of the New York teens recently in the news - mass hysteria.  Anxiety is a real disorder and issue for both men and women, and must be investigated - IF NO OTHER CAUSES FOR SYMPTOMS ARE FOUND.  The causes must be tested for first, not just blamed on anxiety.  Patients experiencing sudden onset of panic attack like symptoms should not be dismissed, and should be thoroughly evaluated for POTS and a number of other illnesses and disorders.  If you are incapable of testing for these things, please send your patients to a specialist who is experienced in dealing with them before dismissing them as having anxiety. 

As a doctor, you took an oath to "do no harm".  The persistent or even occasional dismissal of your patients due to anxiety like symptoms is doing harm.  Being cold, condescending, and unwilling to help guide a patient to the resources needed for them to obtain treatment, is doing harm.   Being unwilling to sit down in front of a computer or your thick medical dictionaries and look up new research relating to your patients symptoms is doing harm.  I have luckily found a group of wonderful new doctors willing to do whatever it takes to help me regain function, but many patients have not. 

I challenge all doctors out there to set your egos aside, and commit to finding answers for your patients, even if it takes a little extra time and work.  It may save them years of suffering and increase their chances of recovering or going into remission.  It may even save their life.  This is, in fact, what you pledged to do when you became a doctor.  So please start doing it.

Sincerely,
Claire Martin
Founder: STOP POTS Virginia
Owner: Bella Flora

The Year I Spent In A Room Not Complaining

PREFACE:
So today marks the first day a year ago that I became seriously, life changingly ill.  I was ill before, but it was manageable. But this day last year my entire life changed, and it has not been pretty.  I debated whether or not to publish this, I've been writing it for a few days as this date loomed, but I know there are others dealing with these same issues, so maybe it will help someone.

The Year I Spent In A Room Not Complaining

My son and I snuggling with a bag of chips.

Not to be a downer, but I have to say that 2011 sucked majorly. But it also brought great joy, and I have tried to focus on that as much as humanly possible.  The birth of my daughter was nothing less than a miracle, and she is healthy and thriving.  I have an amazing family.  I have tried to remember how good I have it compared to the majority of the world, those living in harsh conditions in third world countries, people with terminal illnesses, the homeless, etc...

But really, I have been worn down by the events of this past year, and my current state of health.  And the fact that my only outings from beyond the four walls of a room have been to see doctors.  I have spent the entire year either in a hospital room, a bedroom, or on a good day - a living room. I've been on our balcony 4 times. Needless to say the four wall situation is closing in on me and had gotten old a long time ago.  Putting on a happy face and being fairly silly and upbeat is my natural tendency, not in a fake way, but because I usually really truly am grateful for my life and everyone in it, and I enjoy trying to make others laugh. But this has been the trial of a lifetime, and I have had to fight with every ounce of my being to stay sane, let alone positive.  So I am tired.  Physically, mentally, spiritually, and emotionally.