Dec 30, 2011

Announcing the International POTS Patient Support Group - monthly online meetups!

I am so excited.  Mark your calendars!  January 5, 2012 at 9PM Eastern Standard Time will be the first ever meeting of the International POTS Patient Support Group.  You don't have to buy a plane ticket or drive hours across the country to attend this meeting.  All you need is an internet connection, a web cam and a free Skype account.  We are going to meet "face to face" online using Skype!

How It Works:
If you don't already have one, get yourself a free Skype account.  Visit and click on "Get Skype" and then pick which format you plan to use - they have a free version for Mac, PC, and several mobile devices.  Do a test call so you know how to use it before our meeting.

At 9pm (EST) on January 5, 2012, turn on Skype and on your Skype dial pad type in - BeachPlumBum.  That is my Skype "phone number."  The first 25 people to call me will be admitted to the call and you will all be able to see each other.  Unfortunately, the free version of Skype only allows a max of 25 callers.  If we get more than 25 callers, we may hold meetings more than once, or have two separate meetings happen at once - led by two different hosts.  We will make it work so that everyone can participate who wants to. For now, we will hold our meetings once a month.  The next meeting date will always be posted on my blog.

Ground Rules:
Since it could get chaotic with 25 people all trying to speak at once, we have put together some basic ground rules we ask everyone to follow, so that our first Skype call can go smoothly.  I will lead the first meeting.  Other people who become involved with the group can take turns leading the Skype calls in the future.  We will be very democratic and give everyone a chance to speak.  For the first call, I will go around the "room" and ask everyone to introduce themselves one at a time.  You may want to share your name, where you are from, a little bit about your experience with POTS, and what you'd like to talk about on this call, or what topics you'd like to have the group talk about on future calls.  We ask that anyone who has a comment the'd like to add when someone else is speaking, please raise your hand so that your hand is visible on your webcam to other members.  The leader of the call will call on you and you will get your chance to speak.  I know it seems a little childish, but that is the best way to make sure it isn't just 25 people all talking at the same time.  Once we have done this once or twice with a large group, if we can think of a better way to run the calls, we will change the ground rules.  If you have any good ideas about how to run the calls, or what topics you'd like us to cover during the calls, please e-mail me at  I am always open to suggestions.

Why are we doing this?
We are holding monthly meetings on Skype, because we know that many POTS patients are too sick to travel and many cannot even get out of bed.  This is a great way to socialize with other POTS patients who know what you are going through.  We are also hoping that these online meetings will be the foundation for a new coalition of informed and savvy POTS patients who will be able to advocate for POTS research, funding and increased awareness within the medical community and amongst the general public.  We need to organize ourselves as a community and hopefully these meetings will help us do that.

Shortly after I was diagnosed, I started thinking of ways I could connect with other POTS patients, because I believe a well connected network of informed patients the the first step towards forming an organized and effective POTS patient advocacy group.  This blog was one of the things I started to help reach that goal and since then, I have found many other great POTS blogs written by patients or groups of patients.  I got together with some of my online POTS friends and started a very active POTS Facebook  group(see below for details).  The monthly "face to face" meetings are a natural outgrowth of the Facebook group.  We have a core group of over 200 patients on Facebook who talk to each other on a regular basis and it is about time that we start to see in other "face to face."

POTSgrrl is on Facebook:

In addition to the monthly Skype meetings, all POTS patients and parents of children with POTS are encouraged to join the Facebook group I helped found with some of my online POTS friends.  It is a private group, which means that you can't find it on a search of Facebook.  This was done to protect members privacy, as not every POTS patient is comfortable telling their friends, family or employer about their POTS symptoms.  You can post questions to the group, and rest assured you will find others with the same symptom or who can give you good advice on any topic.  It is a very active, supportive, intelligent and compassionate group of people who are all interested in one thing - trying to recover from POTS and trying to live their best life everyday.  We have over 200 members and we are adding more people everyday.  I you want to join the private Facebook POTS group,  please e-mail  me at and tell me your Facebook screen name so I can add you to the group.

Dec 23, 2011

All I Want for Christmas Is A Christmas Miracle

To my POTS friends, I am praying for a Christmas Miracle for all of you.  I want you healed.

I want you walking around, feeling great, seeing straight, having energy, breathing freely and eating whatever holiday junk food puts a big smile on your face.  I want you to be able to hike the highest mountain, dive the deepest sea and fly long distance without needing a reclined seat.  I want you to be able to walk down the aisle of a grocery store and not space out from the flickering flourescent lights.  I want you to be able to drive.  I want you to have a New Year with no doctors appointments, no ER visits, no surgeries, no co-pays, no deductibles, no out-of-network coverage denials, no annoying new patient intake forms, no frustrating paperwork battles with the insurance company, no having to learn your diagnosis codes, no biopsies, no needles, no tubes, no experimenting with new meds and no side effects.  I want you to not have to learn to love pickle juice!

When you are young, I want you to run around and bounce off the walls like all of the other kids your age.  Then I want you to dance at your prom, with a really hot date.  I want you to be able to walk across the stage at your college graduation, without worrying about your blood pressure.  I want you to be able to walk down the aisle at your wedding and stand throughout the whole ceremony - even those 2 hour Catholic masses.  I want you to be able to have babies, lots of them, and not worry about whether that will make your POTS return, or whether your children will have POTS someday.  I want you to be able to work in a career that brings you fulfillment, joy and a solid income.  I want you to be able to retire and travel the world.  I want you to live a long healthy life in which you get to do everything you ever dreamed of.

And while I am on a roll here, I want more doctors that know how to recognize and diagnose POTS.  I want more scientists researching the causes of POTS, and a cure for each cause.  I want more doctors who "get it."  I want fewer doctors telling young women it's all in their head and that they look fine.  I want more POTS patients to become doctors - we need some really smart autoimmune neurologists with a keen interest in genetics, endocrinology and cardiology!

Most importantly, I want you all to be happy.

Here's to hoping all of my wishes and and all of yours will be granted in 2012!  Merry Christmas!

Nov 19, 2011

Autoimmune Diseases and Dysautonomia

Since we discovered that my POTS is caused by an autoimmune disease (Sjogren's Syndrome) that is attacking my autonomic nerves, sensory nerves, motor nerves and other important parts of me, I started researching the connections between dysautonomia and autoimmune diseases.  I want to share some of this information with my fellow POTSies.  Out of the 500,000 to 1 million of us out there,  I am sure there are other POTS patients who have an undiagnosed autoimmune disease.  I know I'm not the only one who has POTS is caused by an autoimmune disease.

I saw numerous so called "POTS experts" who told me there was no way to identify the cause of my POTS and that I shouldn't bother looking because it was just "idiopathic" - which means of unknown origin.   They also said it would "probably just go away on its own in 5-10 years." I wasn't planning to sit back and watch my life go by from the couch for the next 10 years.  I made it my mission to figure out the cause of my POTS.  For starters, I knew that my POTS was caused by autonomic neuropathy.  So what I really wanted to know is what had caused my nerves to die off, and I also wanted to know whether it was a one time nerve injuring event, or whether the damage was ongoing or progressive. I think these are very rational and reasonable things to ask, especially if your nerves have been damaged to the point where you can barely walk for over a year.  For asking these simple two simple questions (what caused it and is it progressive), I was scoffed at, ignored, dismissed and given the old fashioned eyeball roll by more than a handful of doctors claiming to have expertise in POTS (neurologists and cardiologists).  How dare I want to understand what is going on in my body!  How dare I question their lazy diagnosis of "it's idiopathic."

While I understand that some forms of neuropathy are idiopathic because modern medicine just hasn't figured out all of the causes of neuropathy yet, I refused to accept an "idiopathic" neuropathy diagnosis until my doctors at least checked me out for all of the known causes of neuropathy.  I didn't think it was fair to label it "of an unknown origin" until we had ruled out all of the known causes of neuropathy.  Sure enough, when I finally found a doctor who was willing to test me for the known causes of neuropathy, he figured me out in a few hours.  My POTS is caused by an underlying autoimmune disease, Sjogren's Syndrome, that is attacking my autonomic nerves, as well as my sensory and motor nerves, and some of my major organs (lungs, heart, kidneys, stomach, etc.).  And Sjogren's is progressive - it can even lead to lymphoma.  So if I had just listened to those so called POTS experts who told me not to bother looking for the cause of my POTS and just to go home and take some beta blockers, I would have continued to get sicker and sicker.

While I feel a sense of outrage that it was so hard to get a doctor willing to help figure me out, it also saddens me, because I know there are probably hundreds, if not thousands of other POTS patients who have been told their POTS is idiopathic and "will just go away on it's own," when their POTS may actually because by a serious and progressive autoimmune disease.

If your POTS is caused by an underlying autoimmune disease, there are specific medications you can take to stop and maybe even reverse your autoimmune problems, which would prevent your POTS from getting worse over time, and could even help you fully recover.

The most well known autoimmune disease that causes POTS and similar dysautonomic symptoms is Guillian Barre.  Guillan Barre is a something like an infection and autoimmune disease in one, usually with an acute onset, that results in inflammation of the nerves and damage to the protective myelin sheath that covers the nerves.  This results in the nerve signals traveling too slow or a total loss of the nerve fiber.  It commonly occurs after lung or GI infection, but the infection may be gone by the time the nerve damage occurs.  There is almost always some loss of motor function, due to damage to the motor nerves.

A close cousin of Guillan Barre is CIDP, Chronic Inflammatory Demyelinating Polyneuropathy.  CIDP is consider to be the chronic form of Guillian Barre.  My neurologist at Cornell Presbyterian in NYC, Dr. Norman Latov, happens to be one of the world's leading experts on CIDP.

Another autoimmune disease, the one I have - Sjogren's Syndrome, can cause autonomic, sensory, and motor neuropathy, and CNS lesions/inflammation in the spinal cord and brain.  And Sjogren's doesn't just attack nerves - it can attack your lungs, kidneys, bladder, joints, oral and eye mucosa, GI tract, etc.  I have all of the classic PD POTS (partial dysautonomic POTS) symptoms - hypotension, tachycardia, low blood volume, GI problems, trouble swallowing, headaches, achy neck/shoulders/back, shooting pain in my arms and legs, oversensitivity to light/noise/skin sensations, etc. -  and all of those symptoms can be caused by the nerve damage caused by Sjogren's.

Various forms of Lupus can cause dysautonomia, as explained here.

Mutiple Sclerosis (MS) can sometimes cause dysautonomia, as discussed here.

Ehlers Danlos Syndrome (EDS), while it isn't really an autoimmune disease, is considered a connective tissue disease - just like Lupus and Sjogren's.  Many POTS patients have EDS and many EDS patients have autonomic neuropathy.

Celiac Disease is associated with dysautonomia and neuropathy, as discussed in this article.  Millions of Americans have small fiber neuropathy (pins, needles, numbness or burning in the feet), and about 16% of people with small fiber neuropathy have Celiac Disease, although many of them don't know it.

Crohn's Disease, Addison's Disease, Graves Disease, Hashimoto's Thyroiditis and other autoimmune disease have been associated with dysautonomia.

Many people with one autoimmune disease end up having more than one autoimmune disease as time goes on, so it is not uncommon for someone with Sjogren's to also have Lupus, or someone with Crohn's to also have rheumatoid arthritis.

Some forms of diabetes are also considered to be autoimmune in origin.  And diabetes is the most common cause of neuropathy.  You may here the phrase "diabetic neuropathy" and that is used to refer to the sensory and sometimes autonomic neuropathy experienced by people with diabetes.  Careful control of blood sugar levels and overall health can prevent and sometimes reverse neuropathy in diabetic patients.

Small fiber nerves, which are the farthest points on the peripheral nerve system, can grow back at 1 millimeter per year under ideal conditions.  However, if an autoimmune disease is continuing to attack the nerves, it is unlikely they will be able to regenerate.  You would have to get the autoimmune process that is attacking the nerves to stop - and that can be accomplished with medications in many cases.

There are many antibodies that are known to damage autonomic nervous system.  Here is a short list. There are MANY more and scientists are discovering new antibodies all the time:

ANNA1 (also called anti-Hu)
Anti-Muscarinic Receptor
Anti-Ro (also called SS-A)
Anti-La (also called SS-B)
RF (rheumatoid factor)
Ganglionic Acetylcholine Receptor Autoantibody (AChR)
Striational antibodies
Anti-calcium channel antibody
Acetylcholine receptor muscle binding antibody
Acetylcholine receptor ganglionic neuronal antibody
Acetylcholine receptor modulating antibody
Neuronal voltage-gated potassium channel antibody
PQ-type calcium channel antibody
Amphiphysin antibody

There is an interesting presentation on the Mayo Clinic website from February 2011 pertaining to Mayo's paraneoplastic antibody panel.  Any neurologist who is worth his/her salt with a dysatuonomic patient will send a few vials of that patient's blood up to Mayo to have this panel run.  Your local lab cannot do it.  Mayo is the only place that can do it, but your local lab can send your blood to Mayo's lab.

Paraneoplastic syndromes are when a tumor, usually small cell lung cancer, causes antibodies to develop that cause damage to your nerves.  Sometimes the tumor is so small, the tumor itself isn't causing any symptoms or isn't even large enough to be seen on a scan.  Sometimes the neurological symptoms developed and are identified by a doctor before the cancer.  That is why it is important to check all neuropathy patients for this.

Interestingly, many POTS patients like myself can point to a specific date or week during which they became terribly sick.  I woke up sick January 2, 2010 while on a ski trip.  This could have been a sudden onset viral infection, and such infections are among the known cause of POTS.  However, severe viral infections are also known to trigger or "turn on" autoimmune diseases that a person may have been predisposed to due to genetic factors.  My doctors think that I probably caught a virus, which is why I had such a sudden onset illness, and that the virus triggered a massive immune system response in my body, and then that immune system imbalance morphed into Sjogren's Syndrome.

The good news is that, if your dysautonomia is caused by or associated with an autoimmune disease, there are lots of drug therapies that target the underlying immune problem cause of the dysautonomia, rather than just treating the dysautonomia symptoms like most doctors do with beta blockers, Flourinef, Midodrine, etc.  My next post will be about those autoimmune therapies, especially the great success seen when "idiopathic" dysautonomia, mostly like caused by an unidentified infectious and/or autoimmune problem, is treated with Intravenous Immunoglobulin (IVIG).

Oct 12, 2011

How could IVIG help POTS?

IVIG is shorthand for Intravenous Immunoglobulin.  Immunoglobulins are proteins within your body that help protect you against infections and play many other important roles in your immune system.  There are different types of Immuglobulins, such as IgG, IgM, IgE, IgD, IgA, etc.  IVIG is mostly comprised of IgG proteins, although it does contain other classes of immunoglobulin in smaller quantities.

IVIG is collected from the blood of over 1000 donors, and screened for infectious diseases like HIV and Hepatitis.  It also undergoes heat treatment, acid bathing and other measures to rid it of any pathogens.  Even with all of these precautions, there is still a possibility that you could contract an infectious disease from receiving an infusion of IVIG - however this is very, very rare.

IVIG is used to treat a growing number of medical conditions, but it is currently only FDA approved for the treatment of the following:
-chronic lymphocytic leukemia
-idiopathic thrombocytopenia purpura
-pediatric HIV
-primary immunodeficiencies
-Kawasaki Disease
-CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
-before and after bone marrow transplants
-certain types of kidney transplants

As of 2008, IVIG was in Phase III FDA research trials for the treatment of Alzheimer's.

IVIG is commonly used "off label" by doctors to treat many autoimmune and neurological conditions.  "Off label" use is legal.  It just means that the doctor is prescribing a drug for a use other than something it has received FDA approval for.  Most medications are prescribed "off label" - doctors were prescribing low dose asprin to patients after heart attacks for years, but it wasn't until recently that the FDA approved that as an "on label" use of the drug.  Like many government agencies, the FDA operates at a glacial pace, and they simply cannot keep up with all of the rapid advances in modern medicine.  The FDA has a clear written policy that allows doctors to prescribe drugs "off label."

IVIG has been used to treat the following conditions "off label":
-Clostridium difficile infections
-Grave's Disease
-Guillan-Barre Syndrome
-Inclusion Body Myositis
-Lambert-Eaton Syndrome
-Lyme Disease
-Multifocal Motor Neuropathy
-Multiple Myeloma
-Multiple Sclerosis
-Muscular Dystrophy
-Myasthenia Gravis
-Myelagic Encephalitis/Chronic Fatigue Syndrome
-Neonatal alloimmune thrombocytopenia
-Neuomyelitis optics
-Opsoclonus Myoclonus
-Parvovirus B19
-Pemiphigus vulgaris
-Post-Polio Syndrome
-Post transfusion purpura
-Reflex Sympathetic Dystrophy (Complex Regional Pain Syndrome)
-Renal transplant rejection
-Recurring spontaneous abortion/miscarriage
-Recurring in vitro fertilization failure
-Sjogren's Syndrome
-Stiff Person Syndrome
-Severe Sepsis and Septic Shock in critically ill adults
-Toxic epidermal necrolysis
-Transverse Myelitis

Scientists don't know precisely how IVIG works for all of these conditions, but the general understanding of it is that IVIG reduces inflammation.  There are several theories of how it does that, and in fact, it may reduce inflammation through several different pathways.  Researchers have found that IVIG activates certain receptors in your immune system that inhibit antibody production.  Less antibodies means less tissue damage and inflammation for people with autoimmune diseases. Additionally, scientists believe IVIG may attach itself to abnormal antibodies, and trigger its removal from the body.  IVIG is also believed to react with T-lymphocytes and B-lymphocytes, which are types of white blood cells that are often involved in triggered autoimmune diseases.  Sjogren's occurs when B-lymphocytes over produce, stick around too long and then invade various tissues throughout the body causing inflammatory damage.  IVIG may prevent B-lyphomcytes from attacking a Sjogren's patients own tissues, thus eliminating the autoimmune reaction.

So how can IVIG help POTS?  As you can see, dysautonomia is on the list of ailments that have been treated with IVIG.  POTS is merely a form of dysautonomia, and in many patients POTS is believe to be caused by an underlying infectious and/or autoimmune trigger.  In some patients, like myself, that underlying autoimmune condition can be determined.  I recently learned that my POTS and autonomic neuropathy occurred as a result of Sjogren's Syndrome, an autoimmune disease that can sometimes attack your autonomic and other nerves (motor, sensory and Central Nervous System).  Even if the underlying autoimmune problem can't be identified in every POTS patient, it is possible that some people with idiopathic POTS (POTS from an unknown cause) may respond well to IVIG therapy.  Researchers are currently looking for antibodies that may be the root cause of the autonomic damage seen in POTS patients.  This is a rapidly developing field of medicine, and it is quite possible that these antibodies could be discovered within our lifetime.

In fact, a POTS friend who was recently seen at Mayo Clinic said her doctors told her they were close to publishing a paper on a new antibody believed to be associated with POTS.  

And just last week a researcher in Norway published a research study in which he treated 45 Chronic Fatigue Syndrome patients with Rituxan, a chemo drug used to treat autoimmune conditions like Sjogren's, Lupus and Rheumatoid Arthritis.  Two thirds of the patients were essentially cured from their debilitating Chronic Fatigue symptoms.  While POTS and CFS are not the same thing, there are many overlaps between these illnesses, and both seem to be most common in young women and teens after a viral infection.  Researchers at Johns Hopkins have published data connecting the two syndromes, as have researchers at Vanderbilt University's Autonomic Dysfunction Center.  Both syndromes involve severe orthostatic hypotension and autonomic dysfunction.  They think the major difference is that POTS patients tend to have high catecholamine (think "adrenaline") levels, and Chronic Fatigue patients tend to have low catecholamine levels.  This explains why Chronic Fatigue patients are exhausted all the time, and POTS patients to feel "wired but tired" all the time.  So perhaps after some additional research on the connection between autoimmune conditions, CFS and POTS, Rituxan will become an available therapy to CFS and POTS patients in the future.

IVIG has been used to treat dysautonomia sucessfully in the US and abroad.  There are case reports and peer reviewed research studies in medical journals on this very topic, such as:

“Acute dysautonomia: complete recovery after two courses of IVIg”
26(8) Brain Dev. 542-544 (2004)

“Idiopathic dysautonomia treated with intraveneous gammaglobulin”
71 East Afr. Med. J. 167-170 (1994)

“Acute dysautonomia secondary to autoimmune diseases: Efficacy of intravenous immunoglobulin and correlation with a stimulation of plasma norepinephrine levels”
17(6) Clinical and Experimental Rheumatology 733-736 (1999)

“Five-year Efficacy of Intravenous Gammaglobulin to treat Dysautonomia in Sjögren’s Syndrome” 106(1) Am. J. Med. 125 (1999)

“Acute idiopathic dysautonomia: Electrophysiology and response to intravenous immunoglobulin”
54(3) Neurology 770-771 (2000)

“Acute Autonomic, Sensory and Motor Neuropathy: Successful Treatment with IVIg”
48(10) Intern. Med. 843-846 (2009)

"The wide spectrum of clinical manifestations in Sjögren's syndrome-associated neuropathy"

Brain (November 2005) 128 (11):2518-2534

IVIG has also been used to treat painful sensory neuropathy, a complication that many POTS and Sjogren's patients have - including me.  Small fiber neuropathy is a form of neuropathy that effects the small fiber sensory nerves.  The small fiber sensory nerves are co-located with small fiber autonomic nerves, and on a biopsy, they are virtually indistinguishable from one and other.  So it is not surprising that many POTS patients have autonomic damage and sensory neuropathy too.  Here are just a few of the MANY journal citations for the use of IVIG in treating painful neuropathy:

"Extreme efficacy of intravenous immunoglobulin therapy for severe burning pain in a patient with small fiber neuropathy associated with primary Sjögren's syndrome"
Mod Rheumatol. 2009;19(4):437-40

“Intravenous immunoglobulin treatment for painful sensory neuropathy associated with Sjögren’s syndrome”
279(1-2) J. Neurol. Sci. 57-61 (2009)

77(8) J. Neurol. Neurosurg. Psychiatry 967-969 (2006)

 “Differential response to intravenous immunoglobulin (IVIg) therapy among multifocal and polyneuropathy types of painful diabetic neuropathy”
17(8) J. Clin. Neurosci. 1003-1008 (2010)

“Intravenous Immunoglobulin for the Treatment of Diabetic Lumbosacral Radiculoplexus Neuropathy” 10(8) Pain Med. 1476-1480 (2009)

“Intravenous immunoglobulin therapy markedly ameliorates muscle weakness and severe pain in proximal diabetic neuropathy”
78(8) J. Neurol. Neurosurg. Psychiatry 899-901 (2007)

There are MANY more journal articles on the use of IVIG for painful sensory neuropathy, and every other form of neuropathy that may have an infectious, autoimmune or inflammatory cause.  All you have to do to find these articles is search for IVIG and neuropathy on, JSTOR or Google.

There are risks associated with IVIG, just like any drug.  Side effects include bad headaches, hives, hypotension, hives, and sometimes bad reactions like aseptic meningitis (swelling of the lining of the brain and spinal cord) and anaphylactic shock (a SEVERE life threatening allergic reaction). Most patients receive IVIG at an infusion center or as an outpatient at the hospital.

IVIG is very expensive.  It can run between $10,000 to $20,000 per dose.  The market price for IVIG changes, and in 2005 there was even a global shortage of IVIG which drove prices even higher.  There are several different brands, but you're not likely to find a deep discount based on the brand - and some brands are considered safer than others.

Unless you have been diagnosed with one of the conditions IVIG has FDA approval for, it is very difficult to get an insurance company to pay for it.  Since it is so expensive, the insurance companies will do whatever it takes to get out of paying for this drug - everything from questioning the legitimacy of your diagnosis, to claiming IVIG isn't medically necessary, to telling you to try cheaper drugs first (even when the medical literature proves those drugs do not help), to claiming it is experimental and not proven safe or proven to work, to trying to invalidate your policy for some obscure reason.  

Thankfully, there is an organization that helps people with IVIG insurance appeals - Advocacy for Patients With Chronic Illnesses.  They even have IVIG insurance appeal letters and supporting medical journal articles for many of the "off label" uses of IVIG on their website.

I have met several patients with autonomic neuropathy and POTS like symptoms who are currently getting IVIG.  Most of them got it approved by their insurance companies after a long, tough battle - and waiting for that battle to play out is not a good idea, because the sooner you get the IVIG, the more likely it is to work, the more likely it is to stop any further nerve damage.  And all of them think the benefits it has provided them outweigh the side effects and potential risks.  It's nice to know there is another drug out there that can help some POTS patients.  Now we just have to get more patients talking to their doctors about this, because it is definitely not a well known therapy within the POTS patient population.  POTS itself is not well known within the medical profession, and its causes and treatment are even less well known.  

I encourage all POTS patients to visit Mayo Clinic in Minnesota, Cleveland Clinic in Ohio or Vanderbilt University in Baltimore as soon as possible after diagnosis.  They have a wealth of information and experience simply not found at your local doctor's office.

Sep 18, 2011

Gluten Free Brand Name Products and Chain Restaurants

There are many brands that only make gluten free products, but sometimes those can be hard to find or more expensive than "regular" brand name products.  Here are some of the more common brand name products you may have in your local food store, that just happen to be gluten free.  Just because a brand is mentioned (i.e., Hershey's) doesn't mean that ALL Hershey's products are gluten free.  Check the links for the individual product lists.

All Boar's Head meats, cheeses and condiments are gluten free!

General Mills is one of the world's largest food companies and they have been a leader in recognizing the needs of gluten free consumers.  They even have a website for their broad array of gluten free products.  There are lots of recipes and meal ideas on the site and if you sign up for their e-mail list, they will e-mail your coupons for their gluten free foods:  
Some of the General Mills brands that have gluten free products are:
Betty Crocker Frosting
Betty Crocker Gluten Free Cake Mixes
Bisquick (they came up with a gluten free Bisquick - the regular Bisquick is NOT gluten free)
Chex cereals
Green Giant frozen veggies
Fruit by the Foot, Gushers, Fruit Roll Ups & Fruit Shapes
Progresso Soups & Broths
San-J Terryaki, Tamari and Soy Sauces

Many of the Hormel brands have gluten free products (Chi-Chi's, Hormel, Jenny-O)

Some of the Nestle brands have a few gluten free products (Carnation, Toll House, Nescafe, Wonka, Nestea brands)

Many Heinz brands have gluten free products too (Heinz, Smart Ones, Costco and Sam's Club products, Jack Daniels BBQ sauce)

Many of the Campbell's brands have gluten free products (Campbell's, Swanson, V-8, Prego, Pace's) 

Many Del Monte products are gluten free (FYI... creamed corn is NOT gluten free)

Some of the College Inn soup flavors are gluten free

Many of the Edy's Ice Cream and fruit bar products are gluten free 

Ben & Jerry's has several gluten free flavor

All Kozy Shack puddings, flans and gels are gluten free.

Frito Lay has many gluten free products

Sweetheart Candies by Necco (those little valentine hearts with words on them)

Here's an extensive list of gluten free candies (Hershey's, Tootsie Rolls, Starburst, etc.)

There are many more gluten free products in your regular foodstore, including all fresh fruits, vegetables,  raw un-marinated meats, eggs and plain dairy products.

Gluten Free Options For Dining Out
Even if the individual food product is gluten free, you still have to be be careful about cross-contamination in the back of the kitchen or with shared ice cream scoops.  This is more so for people who have true Celiac Disease, for which there is no "safe" amount of gluten they can consume.  People like me, who don't have Celiac but are just very sensitive to gluten, can probably get away with a little cross contamination now and then without getting sick.  Just ask the server if the kitchen is able to cook the food in separate pots and pans or if they can use cleaned ice cream scoops.  Fried foods are often fried in the same oil as foods with gluten, so be extra careful with ordering those items.  Here are some of the chain restaurants that have gluten free menus:

Ben & Jerry's
The Outback
Boston Market
Ground Round
P.F. Chang's
Ruby Tuesday's
Olive Garden

Gluten Free Food Shopping
Regular foodstores are now carrying more gluten free products than ever!  In the past year, all of the foodstores we use have started to have a gluten free section or aisle, which makes it easier to find the gluten free specialty products.  If your local foodstore doesn't have a gluten free section, ask them to start one.  They will respond if enough consumers as for gluten free items.

Trader Joe's has a long list of gluten free items is sells, and any of the trader Joe's branded products that are gluten free have a little "g" logo in a square to signify if they are gluten free.

Whole Foods - each store has its own list of gluten free products.  Here's where you can look up your local store and here's the gluten free product list from my local store so you can see the brands listed.  Many Whole Foods stores also have a green tag on the shelf under gluten free items, although I noticed that many items that were gluten free did not have a tag in the two Whole Foods stores I have been to recently.

Safeway also uses tags on store shelves to identify gluten free items.  The tags are reddish brown and say "gluten free" on items the manufacturer has identified as being gluten free.  I do not shop in Safeway, so I'm not sure if the stores really keep these tags updated and accurate, but it's worth checking out if you have a Safeway near you.

Shop Rite maintains a list of gluten free products it sells.

Waldbaum's has a good website explaining the basics of Celiac Disease and gluten and they carry many popular gluten free specialty brands like Glutino and Schars.

Stop and Shop has a long list of it's own brand products that are gluten free, as well as it's Nature's Promise product line.  The Stop and Shop stores near my house usually have a large section of gluten free specialty foods.

Of course, if there is a gluten free product you are looking for and they don't have it in your local foodstore, you can always get it online from one of the many gluten free websites.

Sep 16, 2011

What I wish someone told me the day I was diagnosed with POTS...

If you or a loved one are newly diagnosed with POTS, you are probably not sure what to do next.  You've probably already been through so much, just trying to get a diagnosis for all those wacky symptoms you were having.  Here's what I wish someone had told me the day I was diagnosed with POTS.

First and foremost, you are not alone.  There are an estimated 500,000 people diagnosed with POTS in the United States, and many others around the world.  POTS researchers estimate that another 500,000 people in the US have POTS and have either been misdiagnosed or not diagnosed at all.

You may find comfort in talking to other POTS patients.  There are several POTS related support groups on Facebook (POTSRecovery, POTS, NY POTSies, etc.).  I have learned so much about POTS from talking to other patients on these groups.  The groups are very supportive and you can ask whatever questions you want, no matter how awkward or sensitive an issue.  If you are having a really weird symptom, chances are, lots of other POTSies are having it too.  If you can't find these groups on Facebook, it's because some of them are hidden to protect the privacy of the members, since not every member is comfortable letting everyone on Facebook know they have POTS.  The private groups require an existing member to add you to the group.  You can leave me a comment below with your e-mail address, and I will get in touch with you if you'd like me to add you to  any of these groups.  I will not publish your e-mail address on this blog or use it for any other purpose.

There are also other POTS blogs, like The Dysautonomiacs (a bunch of funny teenage girls), POTS (an adult woman's story of POTS recovery) and so many more.  There are also POTS patient videos on You Tube and many of those patients have their own blogs too.

Some doctors think all POTS patients just need more fluids and high doses of salt.  That may be true for many POTS patients, but not all, and for some, this can do more harm than good.  The main "sub-types" of POTS are Partial Dysautonomic POTS (mostly involving some dysfunction or damage to the autonomic nerves and normal to low blood pressure) and Hyper POTS (mostly involving an overproduction of adrenaline like chemicals and high blood pressure).  Some other types that have been named include post-viral POTS, and hypovolemic POTS (low blood volume).  Here are two journal articles that discuss the different types of POTS.  You may want to bring this to your doctor and ask them to help identify your type of POTS so you can best target your treatment plan.  Hyper POTS is treated very different from the other types, and giving large doses of salt to a Hyper POTS patient who already has high blood pressure can be dangerous.

POTS patients from all over the world complain that they can't find a doctor who is really a specialist in POTS or autonomic issues.  There are some good ones out there, but certainly not enough of them to treat all 500,000 people in the U.S. diagnosed with POTS.  Probably the best POTS doctors in the country are at the major autonomic research centers - Vanderbilt University's Autonomic Dysfunction Center in Baltimore, Maryland; Cleveland Clinic in Cleveland, Ohio; and Mayo Clinic in Rochester, Minnesota. Dr. Blair Grubb in Toledo, Ohio and Dr. Chemlinsky in Cleveland, Ohio have a loyal following of POTS patients, as do Dr. Mark Pecker and Dr. Louis Weimer in New York City.  To find a doctor near you who has a clue about POTS, you may want to check out the DINET physician listing, or the American Autonomic Society member listing.  These are not always updated and just because a doctor is listed on one of these sites is not a guarantee that they will be helpful in treating your POTS.

I have seen several self professed POTS experts, and to be honest, they didn't know much more about POTS than I did.  I have read every journal article I could find on POTS and other forms of dysautonomia.  I have read everything I can about the various drugs used to treat POTS.  I have made myself a semi-expert on the autonomic nervous system.  I have exhaustively researched all of the known causes of POTS.  I have even done some of my own research, however unscientific, by tracking my own bodies response to various treatments, dietary changes and fluid volume changes.  Don't let your doctors tell you to stop researching on the internet, or to stop asking questions.  If it wasn't for my own research on the internet, I would not have been diagnosed with POTS.  If it wasn't for my own persistence in finding the underlying cause of my POTS symptoms, I would not have been diagnosed with Sjogren's Syndrome - the autoimmune disease that is causing my POTS symptoms.  Just because you don't have a fancy medical degree, doesn't mean you can't understand this stuff.  No one knows what's going on with your body more than you do, so you should try to become your own expert.

I'm not saying don't go to the doctor, I'm just saying don't just take what your doctor says at face value, since chances are he/she is not a POTS expert.

If you are bedridden from POTS, you are probably thinking, "yeah right, I can't even get up to pee, how am I going to exercise?"  Don't think of exercise like a Buns of Steel workout video. Think of exercise as movement and activities that cause you to engage your muscles and bones.  If you are bedridden, here are some exercise tips that may help you:

(1) keep those joints moving so you don't get as many aches and pains from stiffness and lack of use

(2) stretch, stretch and stretch again, gently - you need to avoid getting stiff, because that only makes your aches and pains worse.  Plus, stretching increases blood flow to areas that are stagnant if you have been laying down too much.

(3) get your legs and core as strong as you can - you can start by doing leg lifts while laying down on your side, then laying on your back and writing your name or the alphabet with your toes in the air about 1 foot above the bed/couch.  Doing imaginary bicycle kicks in bed, and eventually moving up to a real reclined/recumbent bicycle.  If you can kneel on your knees and put your arms down in front of your knees, and put your leg straight behind you (planks) that is really good for your butt and core and thighs. Try wearing 2 lb. or more leg weights on each leg, and then doing leg lifts.

(4) retrain your body to be upright - if you are starting flat on your back and are really bedridden, try propping your head up with pillow for a few hours a day, then try sitting up for a few minutes at a time, and longer and longer until you can sit up almost all day.  Then try standing for a few minutes at a time, until you can stand longer and longer - and something important to know - it's usually harder for POTSies to stand still than to walk or keep their legs moving while standing, so try marching in place next to you bed, so you can lay back down when it becomes to much.  I used to watch TV all day, since I was stuck in bed.  When I started to retrain my body to be upright and walk again, I would stand up and try to walk baby steps during each commercial break.  That would give me severe tachycardia and shortness of breath and dizziness, so when my show came back on I would sit down again, and by the time I recovered form the last bout of tachycardia, there was another commercial and I had to get up again.  I know all of this sounds silly to those of you who are healthy and not bedridden, but you have no idea how hard it is to regain your ability to stand upright until you have lost that ability.

(5) once you have moved out of being completely bedridden and stiff, the best exercises to help with POTS are those that strengthen your lower legs, and those that give you a good cardio workout without setting off your POTS symptoms. For most patients, the exercises that can help with this are recumbent bicycling, rowing machines, swimming and weight training that can be done sitting or laying down.  Yoga can help strengthen and energize you, and there are plenty of positions that include sitting or laying down, or positions that can be modified to your abilities.

I plan to write a full blog post on exercises that have helped my POTS symptoms, including those that helped me transition from being bedridden for almost a year to able to walk again and spend am occasional day at the beach with my friends.

Some POTS patients have very high BP, but most have bouts of low blood pressure or nearly constant low blood pressure.  This depends on the type of POTS you have, but most people have the Partial Dysautonomic type of POTS that is associated with normal to low BP.   If you can increase your blood pressure to a healthy level, you may notice less tachycardia, less dizziness, less shortness of breath - so this is worth a try:

1) Try to drink and/or eat 2-3 liters of water per day.  A liter is 2 regular sized Poland Spring bottles for those of you who don't use metric.  You can get this fluid from drinking water, juice, milk, decaf tea, decaf coffee, soup, sauces, watery fruits like melon, wet veggies like steamed spinach and mashed cauliflower, etc.  Keep track for a few weeks until you have gotten used to consuming that much per day.  It is not always easy, especially if you have GI and swallowing problems, as many POTSies do.

2) Get 8-10 grams of sodium per day.  That's 8,000-10,000 milligrams of sodium.  Not 10 grams of salt (sodium chloride), but 10 grams of sodium.  Since you can't eat raw sodium (it explodes in air!) you will be eating salt and sodium that is contain in foods.  I prefer sea salt, because it has lots of trace minerals and because table salt has added iodine which gives me hives.  High salt foods/drinks include pickle juice, soy sauce, terriyaki sauce, chicken/veggie broth, cheese, potato chips, pretzels, etc.  At first, you may think your food tastes gross with this much salt in it, but your mouth will get used to it and after awhile it won't taste as salty to you anymore.  In fact, when I eat foods without salt, like salad, I start thinking... hmmm, would this taste good with salt on it?  Usually the answer is YES!  Sea salt on lettuce or arugula is delicious.  Salt is also good on chocolate dipped strawberries, brownies, and anything sweet.  Salt on watermelon - yum!  A wedge of cheddar cheese pressed into crunchy sea salt is great too.  I even threw a little dash of salt on my soy milk - not enough to taste it, but just enough to accent the sweetness of the soy.  Salt opens up your tastebuds, which is why it makes most foods taste better.  That's why junk food is loaded with salt - it doesn't actually taste good until they load it up with salt.

3) Get your self a pair of full length medical compression pantyhose.  They have these for men and women.  If you get a good brand, they are comfortable.  I prefer Jobst Opaque because they are the softest and seem to last longer than the sheerer types.  They come in beige, white, black and sometimes you can find colors.  You probably want at least 20-30 mmHg of compression if you are trying to increase your blood pressure and prevent blood from pooling in your legs.  If you're legs turn red when you stand up and sometimes hurt in your calves from standing, you will really like compression stockings, because they prevent that from happening.  I wear mine from the moment I get out of bed in the morning, to the moment I go to bed at night.  On days when I skip them, I can really feel the difference.  A tip I learned from another POTS patient, you can cut out the cotton crotch area, without cutting the seams, to give your lady parts some fresh air.  Some people who wear them all the time get yeast infections, and cutting out the crotch prevents that.

4) Exercise increases blood volume, which increases blood pressure.  See exercise tips above.

5) Increasing the head of your bed can increase blood volume and helps minimize acid reflux, which many POTSies get.  Put cinder blocks, bricks or some large books under the legs at the top of your bed.  The blocks should be 6-8 inches high, at least.  When laying down, your hips should be above your feet, and your head should be above you hips.

6) If you feel a faint coming on, pump your fists Jersey Shore style, to engage as many arm and chest muscles as possible.  Also, you can flex and contract your lower leg muscles for a quick BP boost as well.  There are certain positions called "counter maneuvers" to prevent low blood pressure attacks.  Google it and watch some videos of it on YouTube.

7) Try going gluten free and/or dairy free.  Many, many, many dysautonomia patients have problems with gluten.  Some have Celiac Disease, but many others test negative for Celiac but still feel much healthier when they stop eating gluten.  Do no be intimated.  It is not hard to try and it doesn't have to be expensive.  Give it a month or two before you decide if it's helping or not.  There are many websites and books about eating gluten free, and I have another post on the POTS Grrl blog about it.  Many people respond the same way to dairy, so try going dairy free for a few weeks to see if that helps.

It probably took you years to get diagnosed with POTS, and your doctors probably told you it was "idiopathic" or of an unknown origin/cause.  Sometimes it is of an unknown cause, but is wrong for doctor's to label POTS as idiopathic until you have been checked out very thoroughly for every KNOWN cause of POTS - and there are literally hundreds of known causes of POTS.  It is important to try to identify the cause, because then you can tailor the treatment plan to the underlying cause - and certain causes are lifelong diseases that can cause damage mush worse than POTS, so the sooner you identify one of those lifelong disease, the better chance you have to prevent even more long term damage.  This is where becoming your own expert comes in really handy.

For example, I was tested for SS-A and SS-B antibodies, which are associated with Sjogren's Syndrome, and autoimmune disease that can damage your nerves and cause POTS.  When those blood tests came back negative, my doctor told me I didn't have Sjogren's.  They ran a few other tests and when everything came back normal, they said my POTS was "idiopathic." A year later, I found out that only 40% of people who have Sjogren's actually test positive for the SS-A or SS-B antibodies, and that a lip biopsy is considered the definitive Sjogren's test.  I had a lip biopsy, and sure enough, I did have Sjogren's.  If you can, go see the best POTS doctors in the world.  It's probably a trip to Vanderbilt, or Mayo or Cleveland, but for many POTS patients, it has resulted in life changing information pertaining to their diagnosis.

Also, keep in mind that POTS itself is not a disease.  It's just a list of symptoms that commonly appear together.  There is a problem with your autonomic nervous system - maybe some of your autonomic nerves have actually died off. There is always a cause for this.  Maybe you had a viral infection or Lyme Disease, maybe you have a severe vitamin deficiency or an accumulation of heavy metals in your body, maybe you have an autoimmine disease, maybe you had a trauma to your head or neck.  Nerves just don't spontaneously combust.  It's just a matter of your doctors and you working really hard to figure it out.  Modern medicine does have it's limits, so not everyone will figure out what is causing their POTS, but it is sure worth a 110% try if you are as sick as most POTS patients.

If you can think of other things you wish someone told you when you first found out you had POTS, please feel free to share it in a comment below.