Feb 15, 2011

Coping With POTS

There is no 'cure' for POTS or Orthostatic Intolerance.  If you're lucky, you're symptoms may mostly resolve someday, and there are things you can do to try to support your body and improve your number of symptom free days.  Some people are able to get their symptoms under control enough to return to work or school full time and live a pretty normal life, but many others are not.

If you have POTS or Orthostatic Intolerance, you may want to talk to your doctor about the following treatment options:

Stay Hydrated
Drink at least 2-3 liters of water and other fluids per day.  For comparison, 3 liters is the same as 6 regular sized (500 mL) Poland Spring water bottles.  I use a 1 liter re-usable Nalgene water bottle to keep track of how much I drink each day.  Gatorade and coconut water are full of electrolytes, which will help you feel better.  Stay away from carbonated and sugary drinks.  Clear soup broth and milk counts towards your fluid intake too.  Some people with POTS have digestive problems that make it hard to drink that much fluid - including me.  I have figured out that if I drink about a hour before and an hour after eating, my reflux is not as bad.  Something about plain water makes my reflux worse, so I drink decaffeinated green tea wit a little piece of ginger in it to help my tummy (caffeine can bother some people with POTS, although other POTSies swear it makes them feel better-it probably depends on which type of POTS you have).  I also eat lots of soup and "wet" veggies - steamed spinach and squash and other watery veggies.  Sometimes I put chicken broth in a mug and have it like tea.

Get Salty
Increase you sodium intake to 3000-8000 mg per day (do not do this without talking to your doctor first!)  You can purchase 1000 mg (or 1 gram) sodium chloride tablets online or ask your local pharmacy to order them for you.  They are about $10 per 100 pills.  You do not need a prescription in the U.S.  They also sell Thermotabs at the Vitamin Shoppe and online, which have salt and potassium, but you'd have to take about 10 of them at a time to get enough sodium.  Try sea salt instead of regular table salt, because you may get too much iodine if you eat 3000 mg a day of regular table salt, which is "iodized" in the US unless it specifically says "non-iodized salt."  The sodium chloride pills can be harsh on your throat and GI tract, so try to eat them with food and drink them with lots of fluids.  I tried crushing them and putting them in empty gel caps you can buy at the Vitamin Shoppe, but once the gel cap dissolved in my stomach it was like an explosion of salt (too much surface area of salt hitting my stomach at once!) and I puked big time.  If you can't tolerate salt pills, you can eat a high sodium diet.  Pickles & pickle juice, soup broth, miso soup, and cheese are very high and salt and fairly healthy.  Stay away from fatty or process foods that are high in salt - you need lots of vitamins to get better and processed foods usually aren't that nutritious.  Add sea salt to everything you eat or drink.  At first, you will notice the salty taste and it's a little gross, but after a few weeks you barely notice the salt taste anymore.

Eat a Low Carb/Low Glycemic Index Diet
and eat several smaller meals throughout the day, rather than 3 larger meals.  I tend to graze all day now, and it definitely helps.  With each mini-meal I eat a high protein item first, then a fruit or veggie.  This helps keep your blood sugar from spiking high then low.  If you can, stick to organic fresh fruits and veggies, fresh poultry, fish, lean meats, healthy fats (like grapeseed oil and walnuts) and whole grains (brown rice, quinoa, barley, oats, etc.).  I highly recommend checking out Dr. Andrew Weill's anti-inflammatory diet food pyramid.

Try a Gluten/Casein free diet -  (but get yourself tested for gluten intolerance/celiac first!)
Many people, even those who don't have POTS, have Celiac Disease and don't even know it.  One out of 133 people in the U.S. has it, and most of them don't know it.  Some people can trace the origin of their POTS to Celiac Disease, which causes an autoimmune inflammatory response and can cause problems with absorption of essential nutrients.  Some POTSies who have tested negative for Celiac report an improvement in symptoms when they switch to a gluten free diet.

If you have Celiac, gluten damages your gastrointestinal tract, and can cause permanent gastrointestinal problems, as well as nerve and endocrine damage if left untreated.  If you have Celiac, you may not feel anything happening, or you may struggle daily with terrible GI issues.  Untreated celiac has been casually linked to some forms of cancer, thyroid problems and other serious medical problems.  The only real treatment for someone who has Celiac Disease if a lifetime diet that contains NO gluten, not even a trace amount.  There is no safe amount of gluten for someone who has Celiac.

Also, since Celiac is an autoimmune reaction to a chemical called gliadin, which your body produces when you eat foods containing gluten, you may also want to avoid foods containing casein, a milk protein.  Casein also causes your body to release gliadin, and thus triggers a similar autoimmune response.  Some research indicates that the anti-gliadin antibody that Celiac patients produce also attacks cells in your brain and other nerves which over the long term can cause severe neurological and endocrine complications.  HOWEVER, before you switch to a gluten free diet, ask your doctor to run a panel of tests to see if you may have Celiac.  Most of the various blood tests for celiac look for the antibody produced against gluten and if you aren't eating any gluten, this antibody will eventually be so low the blood tests won't be able to find it, even if you do have celiac.  Also, there are several tests that are used to diagnose celiac, and none is 100% accurate.  If you are already eating gluten free, you can have a genetic test for celiac.  If it's negative, then you don't have celiac, and if its positive, you may or may not have celiac - so even the genetic test isn't a 100% reliable.  You can also have a biopsy to check for Celiac.  Finally, even if you have all of the tests and you're doctor tells you that you don't have celiac, you may still feel a bit healthier if you eat less gluten.  Many people with chronic illnesses report feeling a little better when the go gluten free - so give it a try.  There are many websites that explain what products have gluten in them and provide yummy recipes for gluten free versions of all your favorite foods (celiac.com, glutenfreemommy.com).

Try A Lactose Free Diet
If you are having abdominal cramps or other GI symptoms, you should try a lactose free diet.  You can get a lactose intolerance test from your doctor, but it's probably easier to eliminate milk products from your diet for a week or two and see if you feel any better.  When I stopped eating lactose, my GI symptoms started to improved in a day or two.  Every other month I would try a small glass of milk again to see if my lactose intolerance had resolved, and for awhile it did.  I was super excited to eat fresh mozzarella again!  Unfortunately, it came back a few weeks later.  Dairy products are inflammatory and that is something you probably want to avoid if you have POTS or any other chronic health problem.  

My gastro doctor explained to me that when your GI tract is very irritated or gets an infection, it heals itself by shedding the cells that line the GI tract and slowly regrowing healthy new cells.  He said that the last part of the GI tract to grow back is the tiny cillia that stick out into the intestines, and the cillia are where the enzyme that breaks down lactose is formed.  If the cillia are not there because they have not grown back yet, your body will not be able to tolerate lactose.  I also learned that about 80% of the global population is lactose intolerant after the age of 3.  Humans did not evolve to drink milk after the first few years of life, when a baby can be breastfed from it's mother.  So even if you're not noticing profound GI symptoms, give a lactose free diet a try for a few days. 

Just like gluten, there are lactose free or low lactose alternatives for everything.  I just had Tofutti's 'Better Than Cream Cheese' yesterday and it's just like the real thing, without the stomach ache. And there are some low lactose cheeses, like naturally aged cheddar and parmesean, that most lactose intolerant people can still eat in moderation.  You can also buy Lactaid milk and try taking Lactaid supplements just before eating a dairy product, to help your body break down the lactose before it upsets your tummy. 

Wear Compression Stockings
Medical grade compression stockings help encourage the blood in your lower body to return to your heart (and then your brain!).  These stockings can be uncomfortable, but I've found that you get what you pay for.  The more expensive ones ($100-$130 for full pantyhose) are MUCH more comfortable.  The come in knee highs, garter style and regular pantyhose style, with toes and without toes - for men and women.  I wear 20-30mm Hg ultra soft compression stockings without toes (the ones with toes cut of circulation to my toes and make them cold all day).  If you get the regular pantyhose style, you can cut out the cotton crotch area to make them more comfortable.  If you are wearing them everyday this is a good way to prevent yeast infections.  Some POTS medications, like Fluorinef, make you more likely to get yeast infections, so even though the stockings look funny with the crotch cut out, you'll be glad you did it.  The knee high and garter styles are probably more comfortable, but since lots of POTS patients have blood pooling in their stomach area after eating which lowers there overall blood pressure (this is called post-prandial hypotension), you may benefit from the regular pantyhose style since they help compress your tummy area, which helps return blood flow to your heart and helps increase your blood pressure.  If you have the type of POTS that sometimes causes very high blood pressure, try just wearing the knee highs.  I have multiple styles for different days, depending on how bad my blood pressure if when I wake up.  I also notice that the full length pantyhose, since they are tight all the way up to my waist, can trigger my acid reflux sometimes.  If they are pressing hard on your stomach and your stomach is producing to much acid, the only place the acid has to go is up, and that's how you get reflux/heartburn.  Sometimes I just use the leg-only stockings, and other times I just roll them down to my hip bones, so they aren't pressing on my tummy.

Elevate Your Bed or Use a Bed Wedge 
POTS doctors have explained to me that elevating the head of your bed so that your kidneys are above your feet is a good way to increase blood volume over time.  When you lay down totally flat, your kidneys go into sleep mode and they allow more sodium and water to be filtered out of your blood.  That's why most people have to pee as soon as they wake up in the morning.  If you elevate your bed, you can trick your kidneys into conserving some of that sodium and water, and this is supposed to increase or at least help maintain your blood volume better than laying flat.  If you have a spouse who simply cannot tolerate an elevated bed (like me) buy a good bed wedge.  You should get one that is long enough to go from your tush to just above your head.  I bought a decent one at J.C. Penny online for about $20.  You do not want a bed wedge that is just meant for propping up your neck or head.  Your kidneys have to be elevated above your feet. If you have acid reflux/GERD, like many POTS patients do, do not prop your head and neck up on a bunch of pillows, because this will only cause you to compress your belly and this will cause more reflux.  Make sure your whole spine is on an angle, from your tush to your head.  Elevating the head of the bed is the best option for blood volume control and reflux.  Try using two bricks under each leg at the top of the bed, or one cinder block.  The official term of the position you are trying to achieve is the "Reverse Trendelenburg" position.

Get A Heart Rate Monitor
If you have severe tachycardia upon sitting, standing, walking, exercising, etc., it may give you piece of mind to wear a heart rate monitor.  After a while, you won't even need to look at the monitor to know what your heart rate is.  I can tell the difference between 130 and 110 beats per minute now.  These monitors can be used to make sure your heart rate isn't going too high or too low.  I also found it useful to help figure out what made my heart rate go high, and what lowered it - which was helpful for my doctor to know to help with my diagnosis.  You can also use a heart rate monitor as you begin an exercise regime, to make sure your heart rate stays within a targeted zone.  See the Exercise section below for details.

Get a Home Blood Pressure Cuff
Most pharmacies sell home blood pressure monitoring cuffs for less than $60.  I have an easy to use  battery operated one that stores the last 10 blood pressure and heart rate readings along with the date and time.  This is very helpful to track your blood pressure levels, especially if you are changing medications or trying new methods to improve your symptoms.  Many people have what doctor's call "white coat hypertension" - what it means is that your blood pressure goes higher than normal when you visit the doctor or hospital, so that your doctor doesn't see your actual blood pressure, he/she only sees a higher version of your normal blood pressure.  If you have POTS, your doctor needs to know your accurate blood pressure so he/she can treat it appropriately.  

For example, my blood pressure was always "normal" when I went to the doctor, but then I was fainting at home all the time, probably from low blood pressure.  Before I was diagnosed with POTS, some of my doctors did not think low blood pressure was causing my fainting, until I went and bought a home blood pressure monitor and recorded my blood pressure six times a day for a few weeks.  When I showed this to my doctors, they finally believed me that low blood pressure was part of the problem.  This was the main symptoms that lead me to diagnose myself with POTS, which my doctors confirmed after they carefully reviewed all of my other symptoms.

You can also check how well some medications are working with detailed blood pressure recordings.  I started .2mg of Flourinef daily and after a few weeks of months of good to high blood pressure readings, I wanted to see if I could lower the dose and still have good blood pressure.  With my doctors permission, I lowered my dose to 1.5mg per day.  To make sure my BP wasn't going to low again, my doctor had me take my blood pressure 12 times a day for two weeks.  One hour before meals and one hour after meals, and each time your take it, take it after laying for 5 minutes and take it again after standing for 5 minutes (assuming you can even stand for 5 minutes!).  This showed that my BP was still in a good range on the lower Flourinef dose, so I was able to do this at home safely because of the home BP cuff.  There is no way you can go to the doctor 12 times a day for two weeks, and most insurance companies probably won't let your stay in the hospital just to have your blood pressure checked all day long.

Even though all of us POTSies are exhausted with a capital "E" all the time, it is so important to keep your muscles toned and your body as flexible and relaxed as possible.  A few weeks of bed rest can lead to a 50% decrease in muscle strength.  Even short periods of bed rest have serious consequences.  For example. you lose 3% of your thigh muscle mass within just seven days in bed.

Even if you are stuck in bed 24/7, you should try doing leg lifts, writing the alphabet with your toes, pushing you heels into the bed, lifting water bottles or soup cans, pushing with your arms against the headboard of the bed or a wall, full or partial sit ups, etc.  Do whatever you can to keep moving, even if you can only do 2 or 3 reps at a time.  Two legs lifts are better than no leg lifts, and hopefully if you do 2 this time, you'll be able to 3 next time, and so on.  

On "good" days I try to get up and walk around for a minute or two during each commercial break when I'm watching TV.  If I'm having a bad day and I'm stuck in bed, I try to mini-bursts of exercise laying in bed during commercials.  Even though it isn't much, its better than laying there like a lump all day. 

If you spend lots of time on the computer, you can download a free meditation clock or mindfulness clock that sets off a gentle chime every 30 minutes or so to remind you to stretch and relax your eyes for a few minutes.  Just Google it.  I downloaded a free one called ProdMe that is pretty cool.

I also stretch several times a day because I am so sore from laying in bed too much and from trying so hard to breathe.  Lots of POTS patients get 'coat hanger' muscle soreness in their neck, upper back, chest and shoulders.  This is partly from slouching and laying in bed to much and using your upper chest muscles to breathe, rather than your diaphragm.  My doctors think I may have some neuropathy that is affecting my diaphragm, which may be why I rely on my upper chest muscles so often to breathe.  I do deep breathing exercises to (hopefully) strengthen my diaphragm which will hopefully improve my breathing over time.  I also put a book on my belly and try to lift and lower it with my breath. 

Yoga is a good way to stay flexible and strengthen muscles that doesn't make your heart race as much as other forms of exercise.  Yoga can also help you relax, which many of us POTSies need because of our high catecholamine (adrenaline) levels.  For those of you who can't get out of bed to do yoga, there are modified versions of yoga developed for the elderly or people with severe arthritis.  I found these helpful when I was in the hospital on strict bed rest.   Call your local library to see if they have any tapes or CDs to help guide you through this.  If you have a Wii, the Wii Fit yoga has some moves you should be able to do in bed or laying on the floor, and it helps tracks your progress over time if you stick with it.

There is a doctor in Texas, Dr. Benjamin Levine, who has developed a detailed cardio exercise protocol for people with POTS that has worked well for several of his patients, allowing them to feel better and return to a more normal level of functioning.  His research study using the exercise protocol is published online here.  In order to get the actual exercise protocol, you have to e-mail him your doctor's name and contact info, and he will send your doctor some information about the exercise protocol.  The e-mail address for Dr. Levine and his research team is: THR-IEEM-POTSRegistry@texashealth.org

Some POTSies with Ehlers Danlos Syndrome have to take extra precautions with exercise because they can easily injure their joints.  If you have POTS, before you begin an exercise regimen you should speak with your doctor and you should also get yourself tested for Ehlers Danlos - a genetic disorder that causes hyperflexible joints, super elastic skin, heart valve problems and other complications.  Many people with POTS have Ehlers-Danlos, and it is very hard to diagnose.  There are genetic tests and clinical signs that an expert will be able to detect - maybe not your regular doctor.

Also, patients with Chronic Fatigue Syndrome (many POTS patients have been diagnosed with CFS as well) can get worsening fatigue with exercise, so it's a good idea to talk to your doctor before beginning an exercise program if you have CFS.  Although, there is another school of thought that says people with CFS should try to get some exercise, even if it makes them more exhausted in the short term, because it is important to their long term recovery.  I don't know which is the correct answer, so I'd suggest you speak with your doctor.

Keep a Journal
I was able to diagnose myself with POTS (later confirmed by my doctors) because I kept a seriously detailed journal of my every activity for several months - my symptoms, my blood pressure, my pulse, my oxygen levels, what I ate, what medications/vitamins I took, how much fluid I drank, how much I peed, what color was it, how long I was able to stand up, trips to the ER, etc. etc.  It seems a little crazy, but  I only did this because my doctors couldn't figure me out, so I realized I'd have to figure it out myself.  Now that I have a pretty certain POTS diagnosis, I keep a journal of any new symptoms, and I try to write down good things that happen and solutions I find for my symptoms - to remind myself that I CAN GET BETTER.  It's helps remind you that even when you're having a really horrible symptomatic day/week/month, there will always be another day that you feel a little bit better and good things can still happen in your life even though you feel like crud.  A friend has suggested keeping track of how any hours a day you sit, stand, lay down and do active tasks like exercise or chores.  She had Chronic Fatigue Syndrome and she used this log to see how she was slowly improving over the long term.

Talk to Your Doctor About Medications
I don't like taking meds, but POTS is a serious illness and sometimes your quality of life can be significantly improved with meds.  I'm going to write a separate blog post all about POTS medications in the future, but the most common POTS medications are Flourinef (to help increase blood volume/blood pressure), beta blockers (to help minimize tachycardia and the anxiety like symptoms some POTS patients experience) and Midodrine (to help increase vascular constriction and lower your heart rate).  I am only on Flourinef at the moment because I can not tolerate beta blockers or Midorine.  Even the Flourinef has side effects, but for the time being I don't have any other options unless I want to pass out everyday, so I'm sticking with it.  If your doctor doesn't know what these drugs are or isn't familiar with POTS (and most doctors aren't familar with POTS - even so called POTS experts barely understand it), print out some online research for them and ask them to brush up on it so they can help you manage your POTS.  If they don't seem interested in learning how to help you, then find another doctor who is willing.

Have Some FUN!
When you feel like a wet noodle it can be hard to muster the energy to do anything, no less something non-essential, but you should consider having fun as an essential part of your recovery.  Having fun keeps your spirits up, distracts you from how crappy you feel and can help you avoid depression, which so many people with a chronic illness eventually develop.  Your friends and family probably miss the 'old you,' so it's nice for them to get to see you happy and having fun too.  To have fun, POTS style, I do lots of stuff laying down or resting on the couch - computer games, blogging, silly arts & crafts (find your inner kindergartener and break out the construction paper and Elmer's glue!), play board games, card games, rent movies for free from your local library, watch TV, watch movies and TV shows for free on Hulu.com on your computer, research your family history on Ancestry.com (they have a 2 week free trial), have some friends over and play some video games, bake some healthy treats, read some new books and magazines from the library, pick a totally random subject to become an expert in (something really odd like 18th century men's shoes, butterflies of the Arizona desert or the history of the Jamaican government) and get every book and article you can on the subject until you master it.  There is no such thing s useless knowledge - you never know when you are going to need that info in a game of Trivial Pursuit or Jeopardy.

Dealing With the Emotional Side of POTS:
Don't get mad at yourself when you have a "bad" day or even a bad "month."  There will always be a better day or a better month in the future, even if it's not perfect.

Don't waste your energy wishing you could be "like you used to be" or that you could get your old life back.  You may get it back someday, and you may have an even better life after POTS, but dwelling on what you used to have won't get you better - it will just make you depressed.

Consider talking to a therapist, a counselor, a priest, a rabbi, a friend or anyone who will listen.  It's OK to 'let it out' and cry your heart out to a total stranger sometimes.  Right now your life is hard, and you are allowed to be mad, frusturated, and/or sad about that.  Talking to someone can help.

I know it's a cliche, but remember that as bad as you have it, there is always someone who has it worse.  For example, when having a particularly bad day, I remind myself how lucky I am to have a supportive family and husband and healthy food to eat and access to advanced medical care - imagine having POTS and being homeless without family and broke in a third world country?

Be thankful for what you have, even if it isn't much.  I learned this when I spent two months in the hospital in NYC.  I was feeling pretty sorry for myself and I kept asking God, why are you doing this to me?  Since I was in the neurology intensive care unit, I had roomates coming in and out every few days.  Most of them were in much worse shape that I was.  One girl younger than me had been run over by a hit and run driver on her way walking to work a day before her birthday.  She had major brain damage and couldn't remember her own name.  Another young woman, who had a 5 year old daughter, was in for her second surgery to try to remove her brain tumor, and the surgery had caused her to forget her words and forget where she was, which was very frightening for her.  An older woman I met had a hugh brain tumor in the front of her skull, and she had waited years to have the surgery to remove it - she had come all the way from a small village in Africa.  She was an amazingly beautiful woman, inside and out.  She said by the window quitely reading her Bible every day, and when I asked her if she was ever scared knowing she had cancer and having to wait so long for surgery, without hesitating she smiled and told me "no" because she knew that she was going to be OK because God would take care of her and he wouldn't put her through anything he had not prepared her to handle.  I have never been that outwardly religious, but I really respected her for having such a strong faith and I have tried to adopt her positive way of thinking into my life.  Another woman I met was going to die in a few days - she had been fine a week earlier, but she unexpectedly had a severe stroke and her children were all coming to say goodbye to her before she died.  She cried out loud all night long in a flurry of incomprehensible babble.  Another woman, I did not meet her but I heard her screams in the next room, had a tumor pressing on a part of her brain that made her yell out random words all day and all night long.  She couldn't help it, and I felt so bad for her family because they couldn't care for her anymore.  So my point is, yes POTS really stinks, but you're very unlikely to die from it and at least you can still tell your loved ones that you love them everyday, and you can understand what they mean when they say it back to you  - so it could be worse!

I think of Professor Stephen Hawking, the world famous physicist who has ALS (Lou Gehrig's Disease).  He is in a wheelchair, breathes through a tube in his throat and talks using a computer.  Despite his severe physical limitations, he has contributed more to the advancement of modern physics and the interest in physics among the general public more than most other scientists who have no physical limitations.  He is truly an amazing spirit and I highly recommend reading his posts on living with a disability.

Try to think of some of the positive things that go along with POTS.  I bet many of your friends wish they could stay in bed all day and watch Oprah and Golden Girls re-reruns.  In our pre-POTS life, most of us were probably too busy to exercise everyday and too busy to take the time to always eat healthy.  Since POTS tends to give you lots of free time, consider it your goal to eat 100% healthy and to get each of your muscles as toned and buff as possible.  I bet most of us POTSies now have a better understanding of human anatomy & physiology than we did before we had POTS.  We are also very attuned to our bodies.  We also have lots of time to think about stuff, contemplate our belly buttons and meditate.  Buddhism teaches that mediation and contemplation is the way to reach the highest spiritual plane.  So consider yourself lucky that you have more free time to contemplate and meditate and thus have a better chance to reach your highest spiritual plane than your busy friends who don't lay in bed all day with POTS.

Set goals for yourself and do something everyday to help reach that goal.  You can do it!

To boost your spirits and confidence, make a list of all of the things YOU CAN DO, even though you have POTS.  The list is longer than you think.  When you are feeling really cruddy, find this list and chose something on it to do.  Add new things to the list as you think of them and eventually you will stop thinking about the things you can't do right now (and I say right now because someday you may be fully recovered!).

When you're chronically ill, it's important to maintain as much as a normal life as possible.  If you were a social butterfly before POTS, you should try to be that way with POTS, but just realize that you may have to alter the way you socialize.

Try your best to keep in touch with friends and family.  Since you never know when you are going to have a good day or a bad day, it can be hard to make plans in advance to hang out with friends.  Make plans with a group of friends and tell them you want to hang out if it's a good day for you, but if you can't, then you just want them to hang out without you and you'll try to reschedule.  If they are good friends, they will understand.

You can also feel more comfortable hanging out if it's at your house, so ask your friends to plan to come over, but let them know if you are having a bad day, you'll have to reschedule.  I had a friend come visit me on a bad day once, and I think it freaked him out a bit to see me that sick.  But being a true friend, he didn't judge me for it.  He was so worried after seeing me like that, that he called a family friend who is a doctor at the Mayo Clinic and that doctor ended up helping me out a little bit.  I think it's hard for people who have never experienced POTS or another severe illness to understand how sick you really are, especially on a bad day.  This is especially true because most people don't even know what POTS is.

Sometimes I am so short of breath and I have such a sore throat, I can't talk in person or on the phone with anyone.  So I try to keep in touch with e-mail and Facebook, and those are things you can do when you have the energy, and you can skip them when you are too wiped out.

If some of your friends seem to abandon you... don't be shocked.  When previously healthy people suddenly develop a severe illness or a chronic illness, it is very common for people who they always thought were their friends to disappear.  Don't be too upset about this.  First, realize that some people just can't deal with another person's sadness or difficult issues.  It's a sign that this friend is immature and/or self-centered.  Second, if someone you thought was a good friend walks out of your life just because you're sick, they are not a real friend.  Consider yourself lucky to have found out that this so-called friend is really a jerk and not worth the time and effort true friendship requires and deserves.  You are much better off with one or two really genuine friends than a larger group of fair-weather fake 'friends.'

Join the Dysautonomia Information Network and POTS groups on Facebook and make some friends who also have POTS - it feels good to know you are not alone.

If you don't feel like socializing, then don't... and don't feel guilty about it.  When I'm having a bad day, the last thing I want to do is see my 'healthy as can be' friends and hear their stories about snowboarding in Italy and the great wine festival they went to last weekend.  I'm glad their having fun, but it only makes me feel worse to hear about all the fun their having when I'm feeling like crud.  In fact, I find it very difficult to talk to most of my old friends and colleagues without getting emotional.  When I am not around them or talking to them, I can focus on getting better and what good things I still have.  For some reason, every time I talk to a friend from my college days or a co-worker, I get all teary eyed because it really makes me think about the wonderful things I am missing out on and "what could have been."  It's very unhealthy to dwell on the "what could have been."  I haven't figured out what to do about this yet, so if you have any suggestions - drop me a note.

Be Productive!
Try to find something productive to do, so you can have something to be proud of.  Make a contribution to society.  There are a million ways to do this, but here are some POTS friendly suggestions:

1 - If you can, do your schoolwork from home, or if you work, try to find a way to do your work from home;

2 - start a blog about your POTS experience to help keep your friends and family in the loop and to help let other people know they are not alone;

3 - do something to help raise awareness about POTS-write an article for your school newspaper, or if you're not in school anymore, for your local newspaper;

4 - ask your friend and family to help you throw a POTS fundraiser and donate the money to a medical center doing POTS research or to the Dysautonomia Information Network.; or,

5 - participate in a POTS research project/clinical trial (talk to your doctor first!).

6-Volunteer - even if you can't go in person, maybe you can be a phone volunteer for a local charity or political candidate, or an online volunteer.

7-Tutor a local kid: maybe you're neighbor's 8 year old is having trouble with reading?  Spend an hour a week reading a book with him and you'll both benefit.  Even tweens and teens can tutor younger kids - maybe your little cousin just needs homework help or a good idea of the school science fair.  The person needing a tutor can come to your house, so you don't have to even get out of your chair/bed.

Find Out About Disability Services In Your Community
Most local governments have a Division of Health & Human Services or a Division of Disability Services, although the name of the agency may differ depending on where you live.  This is just a good place to check out.  Tell them about your disability and what your needs are and they may be able to suggest some resources for you - financial, medical, support groups, activities, etc.


  1. I can't seem to find any POTS groups on facebook. Mind sharing the links/names?

  2. Sure - one of the more active Facebook POTS groups is called "POTSrecovery.com" It is the Facebook group started by the same woman who runs the excellent POTSrecovery.com blog.

    Here are a few other Facebook pages about POTS:
    Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS)

    The Dysautonomia Girl

    Find A Cure For Dysautonomia

    Change in Life with Postural Orthostatic Tachycardia Syndrome

    The Faces of Dysautonomia

    Postural orthostatic tachycardia syndrome (an "interest" page that you can "like")

  3. This blog is so inspirational for me. I have POTS and EDS and it gets really difficult sometimes to remain positive. This blog has helped me regain my focus and optimism and I greatly needed and appreciate that. :)

  4. I think this is a great page to get more information about POTS, and to help people see that you can still live your live with this disorder. I have POTS, and Ulcerative Colitis, so I know times can be hard but after reading this it makes me a little more hopeful that things will get better

  5. I have been struggling for a year now with mind fog and have been trying to figure out what is happening to me. I flew back from st maarten from a vacation sept 2012. I had fun on vacation, drank lots of booze, relaxed, had a great time. But once I stopped drinking and flew home.. I felt horrible for two days. Not like hungover horrible, but like DTs, shaking, rapid heartbeats, dizziness.. and mind fog. The mind fog has never gone away. I went to my doctor within a few months to figure out why I was feeling so detached from my surroundings, i just feel so out of it. I do things without thinking and then sometimes dont remember doing them. Its horrible. My PCP tested me for Lyme, STDs, anemia, cbc, thyroid, liver fxn, kidney fxn, nutrient deficiencies.. and the only thing they found not normal/negative was both vit D and B12 were low. Doc put me on supplements.. still didnt make me feel better. I was convinced I had lyme disease because I was constantly tired, I would get random heart palpaltations, I felt lighthead and dizzy, I randomly sweat for no reason, ringing in my ears, sensitive to light and sound.. it literally drives me crazy. Neurologist sent me for an MRI and found a 9.34mm pineal cyst, but tells me theyre asymptomatic (despite the thousands of people online who complain about similar symptoms) unless they compress on surrounding parts of the brain. Over the last few months Ive noticed frequent stiff necks and headaches, numbness on my forehead and pressure on the front of my head. Sometimes I wake up in the middle of the night with pounding headaches for no reason! Then on a facebook group for pineal cyst sufferers, I was explaining my symptoms and a woman said to look into dysautomia.. so I did. And I came across POTS. I realized a little while ago that when I get out of bed in the morning, my heart starts pounding. but my breathing doesnt increase. and when I get in the shower, I see flashing spots against the white shower walls for a few minutes everyday. I also know that sometimes when i get up I start to blackout visually like Im about to hit the floor... I honestly think I might have POTS. My doctor started me on Wellbutrin (SNRI) on oct 4th and I stopped taking it on nov 7th because it was making even more spaced out and forgetful. I caught a cold at work this week and have felt HORRIBLE the last 2 days.. I read online that POTS symptoms intensify when you are sick.. not sure if this is true but my heart has randomly been pounding out of my chest, or "tachy" as its called, all day and ive been sitting on the couch on my laptop with an occasional getting up for a drink or to go to the bathroom and I am so dizzy when I stand up. this is miserable. and ive drank about a gallon of water today. I read some of the side effects of wellbutrin which can have some POTS symptoms.. but the dizziness/mind fog/random heart palpaltations have been going on for over a year now..

  6. What a great article! I personally do not have POTS or OI, but I try to stay informed because I have a friend who has POTS. Her blood pressure sometimes goes haywire, her heart rate can go up to 200 bpm, and my question for you is, what can I do to help? That is, should the situation arise, how can I be prepared to help? Oh, she also has heart palpitations almost constantly.Is there anything I can keep with me that would help her if her blood pressure were to shoot up (normally she just "toughs it out") or anything? Any information you have would be helpful. Lately, I've tried to make it a point to keep a salty snack on hand, but that's all I've got. You should also know that she is under a lot of stress for various reasons, and that she is a very positive, busy person.

  7. What do you reccomend for dealing with attending school and having POTS my school has a no book bag policy and it two stories. My mom really wants me to go back to school as I'm on homebound now but I dont know if that's possible any more. (Recently diagnosed with POTS as of a month)

  8. This has been really helpful to me also. I am a 28 year old mom of two and I have just been diagnosed with POTS. I also have disc degeneration and am having trouble with symptoms here lately. Anyone that has more experience with this condition any advise is helpful. Thanks