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.


  1. Hey! :D This was a fantastic article!!! You explained the POTS types so well, too! Thanks for taking the time to write this :)

    p.s. Vanderbilt's Autonomic Dysfunction Center is in Nashville, TN (not Baltimore)


  2. Have you had any experience with knee high compression hose instead of the full length ones? Do they work as well?

  3. Excellent piece! I have combo POTS and NCS, as well as EDSIII (which seems to be my underlying cause). The research is really, really important. So is the support. Really, everything she mentions is very important. I am partially bedridden. I swim or hike whenever able. I do short bursts of gardening of housework (these ARE exercise)...short bursts because on a semi-bad day, I can sometimes still get up for 10-20 minutes as long as I keep MOVING CONSTANTLY, then I get back in bed before the pre-syncope turns into syncope. Some days, I only make it to the bathroom, and the fridge to get fluids and pickle juice, which I now chug like a champ and LOVE and even CRAVE.

  4. In response to JennVan's question about knee high compression hose... I would assume that anything is better than no compression hose, if you have blood pooling in your legs or any low blood pressure issues, BUT, I tried knee highs and thigh highs and they didn't help enough. I have heard the same thing from several other POTS patients who have tried all three. Also, if you are trying to get lots of fluids and salt, you are likely to notice swelling right above the knee if you are wearing knee highs, and at the upper thigh if you are wearing thigh highs. Only the full length pantyhose seem to prevent fluids from accumulating right above the top of the stocking.

  5. Good advice! I wish someone had told me all this when I first got sick at 17. I'm 21 now and still trying to figure everything out. :)

  6. Thanks for the response with your experience. That is very helpful to know.

  7. Did you have a positive ANA blood test before you were tested for Sjogren's or other autoimmune diseases?

  8. In response to kylajo's question about the ANA blood test. I was tested for ANA, ENA, SS-A, SS-B and many other antibodies. All were negative. My Cleveland Clinic neurologist who diagnosed me with Sjogren's told me that only about 40% of Sjogren's patients have any antibodies identifiable by commercially available blood tests. There are some research based tests that insurance will not pay for, such as alpha-fodrin, which are common in patients with the neuropathy based Sjogren's. I am working to get those tests now. Not easy to get.

  9. This was helpful, thanks. I wish i would have found out sooner what i had. I'm in 11th grade now, and since the beginning of 9th grade i have been seeing heart specialists and doctors and wearing heart monitors, just trying to figure out what was wrong. I was constantly dizzy, had headaches, light sensitivity. Fainting now and then. Basically, my doctor told me "it's all in your head" and sent me to a therapist. I finally saw a neurologist, who sent me to another doctor who specializes in POTS. I was so glad to finally have answers, but SO MAD at the doctors who told me there was nothing wrong with me and that i needed a shrink. I've been through three years of hell but i'm finally starting to figure things out :)

    1. Thanks for this website! I wish someone would have told me to keep resurching. I've been dealing with POTS for 15 years now. Drs said I'd out grow it and it would be ok for me to have children. I'm now 25 pregnant with number 2 and it's like the beginning all over again. I keep symemptoms at bay with exercise and healthy diet but one month after becoming pregnant again I've been down for the count. I see there is alot for me to look into. I am not close to any of the wonderful universities, and would like to know where to find an updated list of specialists or how to go about finding a good dr. I have 6 more months to go and would really like to find one before the baby comes. Thank you again for all of this helpful information!

  10. Thank you so much for all your information. I was just diagnosed yesterday although I've been treating myself as if I've had this for the last 5 months. The doctors say I have an odd case and I'm being sent to the University of Wisconsin Neurology center to further investigate. The last few months have been the worst days of my life but I'm too stubborn to let this get the best of me. I would appreciate if you could email me and maybe we can discuss my case. I've researched quite a bit so much so I was the one who educated my doctors on this and convinced them to send me for the appropriate testing for diagnosis. Around here many of the doctors look for the typical and common diagnosis bet you can guess the 1st thing ( anxiety) panic disorder lol......its so frustrating! Anyways my email is for anyone who's willing to share info and stories. Thanks for your time. Kayla