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):

Living with Bob (Dysautonomia): The Dorothy Shoe Project

Get involved in something fun!  This is from Rusty Hoe, whose blog Living With Bob is amazing.

Living with Bob (Dysautonomia): The Dorothy Shoe Project:

The Dorothy Shoe Project

Since my last post I've had a lot of time to think about what I want to do this year. Making sweeping statements about stepping back from a focus on illness to find a balance in my life are all well and good. But what exactly does that look like and what does it mean for the year ahead? This is exactly what I was contemplating at 3am the other night. Good old insomnia gives you a lot of thinking time. Not that all the thoughts are coherent, and many may involve elaborate plans of how to dispose of Bob's body should I ever manage to take him out, and perhaps others were about hot shirtless movie stars and back rubs. However, every now and then, you have an epiphany.

Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness

Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness
(From butyoudontlooksick.com)

Sometimes you just gotta have a sense of humor!

The top ten worst suggestions commonly given to someone with a chronic illness:

1)Have you tried holistic options? (many. I’ll bring it back up with my doctor on my next visit, thanks.)

2) Could it be your stress? (My opinion is, it is my illness. I’ll bring it up with my doctor though, thanks.)

3) Could it have to do with the altitude? (I’ll bring it up with my doctor…thanks.)

4) I read in {insert any generic magazine here} about a new medication. Have you heard about it? (I was on it when it came out 17 years ago. but I’ll bring it up with my doctor. thank you.)

5) Have you thought about being in a trial study? (I’ll ask my doctor. thanks?)

6) WOW. If I were you, I don’t know what I would do. I might just kill myself. (Thanks?)

7) Have they found what is causing the problem? (no. my doctor is an idiot. I’ll remind him, thanks!)
Have you tried hypnosis? (I’m still sick, but when the phone rings I bark like a dog.)

9) Have you googled your illness? (….no! thanks!)

10 Have you ever thought you were getting sick because you haven’t wrapped your house in aluminum foil because, you know, the aliens have been bugging our houses for the past 30 years and in some cases, making people really sick. I read on…..gee I lost the web site. but it’s true! I heard it from Sally’s cousin’s sister-in- law. And then every time you use deodorant you would think you would be warding off these bugging rays, but it still makes it worse, so you are not being pro-active to your health by wearing that deodorant. I can’t believe you! If you wanted to get better you would stop wearing deodorant..(voice gets fainter and fainter the further you just walk away.) THANKS!!!!!!!!!!

Article written by Amy-Beth Maran , © 2007 butyoudontlooksick.com

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!!!! 

36 Easy things that you can do to make the life of your chronically ill friend a bit better.

This may seem kind of self serving, but I thought it may help others to (subtly) pass on to family/friends. Everyone knows someone who is sick in some form or another - these are great tips from www.butyoudontlooksick.com!

36 Easy things that you can do to make the life of your chronically ill friend a bit better.

36 Easy things that you can do to make the life of your chronically ill friend a bit better.

You do not need to spend a lot of money. You can be thoughtful in so many ways. The point is to do something, and do something today. I have listed below 36 easy ideas that anyone would appreciate. Sometimes it is hard for a patient to ask for help. Just do it! The hardest thing about chronic disease is that it is chronic. I had a friend who had a really bad flu and she received flowers that very week. With me – since I am sick all the time… I get nothing. Am I any less sick, sad, frustrated, lonely, or bored. NO, I need your love and support now more than ever. When everyone else forgets that I am still in this struggle with my illness….. please remember. It didn’t go away, I didn’t forget. I need you to be my friend.

The Spoon Theory written by Christine Miserandino

If you are struggling with family and friends understanding your illness and why you can't party like a rock star, or much less do many "normal" tasks, send them this! And join the #spoonie team on Twitter, a phrase resulting from this article.

The Spoon Theory written by Christine Miserandino