by Dr. Svetlana Blitshteyn

Since POTS affects predominantly women of reproductive age, it is not surprising that at some point after the diagnosis of POTS, questions about the safety of pregnancy will be raised. As a POTS specialist, I am often asked these questions by women in their 20s, 30s and sometimes 40s. When women and their partners are ready for family planning, a chronic illness like POTS can make simple decisions difficult and difficult decisions even more challenging.

The good news is that POTS does not need to steal your dream of becoming a mother as many women with POTS have had successful pregnancies. Still, the course of POTS during pregnancy appears to be variable – i.e. 60-70% of patients will experience improved symptoms of POTS during pregnancy, while 30-40% will feel worse (1,2). Thus, women who are diagnosed with POTS and wish to become pregnant will need to educate themselves, and probably their obstetrician, regarding the course of POTS during and after pregnancy and possible complications that may arise along the way.

Typically, I advise women with POTS who want children to get pregnant sooner rather than later. This is because when you add advanced maternal age (defined as 35 years and older), to the pre-existing medical condition, the odds of developing various pregnancy and fetal complications become higher than if pregnancy occurs at a younger age.

There may be a possibly higher miscarriage rate in women with POTS, which may make it more difficult and/or take longer to conceive. Additionally, a study from Vanderbilt University suggested that there may be a higher rate of gynecological disorders in women with POTS, such as endometriosis and uterine fibroids (3). Thus, for women with POTS who wish to get pregnant, several issues may arise that would require a careful and comprehensive approach on the part of the POTS specialist, gynecologist and the patient, in making pregnancy a priority. Below are the answers to common questions raised by POTS patients regarding pregnancy.

1. Is pregnancy safe for POTS patients?

Generally, there are no contraindications to pregnancy in patients with POTS. However, since POTS is a disorder that has many underlying causes, many of which are still unknown, every patient with a diagnosis of POTS will need to ask that question to their POTS specialist. If you have mild symptoms or your POTS is fairly well-controlled, the decision of whether it is safe to undertake pregnancy will be easier to make. However, even for women with severe POTS who want to become pregnant, pregnancy is still not contraindicated, although it may require multiple specialists, various interventions and careful planning for labor, delivery and the postpartum period.

2. Are there pregnancy complications that are more likely to occur in POTS patients?

In my study on POTS and pregnancy, almost 60% of women reported severe vomiting or hyperemesis gravidarum (extreme and persistent vomiting during pregnancy) and 40% of women experienced fatigue during pregnancy (1). Other common POTS symptoms during pregnancy were presyncope and tachycardia. Also noteworthy is that there was a higher rate of miscarriage in patients with POTS compared to the general population. The good news is that there were no maternal or fetal complications attributable to POTS, as far as we know. However, a number of questions still remain and need to be studied further. These questions include whether there is an increased risk of pre-eclampsia, pregnancy-induced hypertension or postpartum hypertension in women with POTS; whether a subsequent pregnancy results in worse symptomatic exacerbation than the first pregnancy, and what the course and outcomes are in women with postpartum onset of POTS who become pregnant again.

3. Does pregnancy make POTS symptoms worse or trigger a relapse after delivery?

In our study, about 50% of women with pre-existing POTS felt better or stable 6 months postpartum, compared to before pregnancy (1). In a study by Dr. Blair Grubb, about 30% of women felt worse after giving birth (with the postpartum period not defined), while 70% of women reported “stable” symptoms (2). In the study by Mayo Clinic, there were no differences in the autonomic function tests scores in women with POTS who had children compared to women with POTS who did not (4). In conclusion, about 30-50% of women with pre-existing POTS reported worsening of symptoms after giving birth. Furthermore, for a number of healthy women, pregnancy can trigger a new-onset POTS, and for substantial proportion of women with pre-existing POTS, pregnancy will be an exacerbating factor. Conversely, about half of women with POTS can expect no change in their symptoms after the pregnancy.

4. What POTS medications are safe to take during pregnancy?

While there are no pregnancy “Class A” medications (i.e., the FDA classification for the safest drugs for pregnant women) available to treat POTS, in our study women who used medications, if necessary, to control symptoms, did not have any adverse maternal or fetal effects. I have used a low dose of a beta blocker to control tachycardia and other symptoms in pregnant patients with POTS safely. Florinef and Mestinon can also be continued during pregnancy if necessary, but we have less experience with midodrine during pregnancy since it’s a newer medication. There is also an option to continue or switch to Prozac in those women who take SSRIs before pregnancy. Medications that need to be weaned off or used only under special circumstances and/or sparingly are benzodiazepines, like clonazepam, Ativan and Xanax, and stimulants, such as Ritalin and Adderall.

5. What POTS medications must be stopped before pregnancy and for how long?

Ideally, all medications would have to be stopped prior to conception. However, for many women with POTS and other chronic illnesses, this would be an unrealistic goal. If at all possible, medications during the 1st trimester when the fetus is developing, should be avoided. If this is not possible, as will be the case in many patients, the lowest dose of the medication should be used. I recommend weaning off benzodiazepines and stimulants such as Ritalin and Adderall slowly, under the supervision of your physician, before planning to conceive. If pregnancy is unplanned, there may be a faster weaning schedule to discontinue controlled substances. It might be beneficial to consult a high risk obstetrician, a.k.a maternal-fetal medicine specialist, before you plan to become pregnant with a chronic illness, in addition to your POTS specialist.

6. Does having POTS pose any risks for the baby in utero and postpartum?

All four studies on POTS and pregnancy conclude that there appears to be no negative effects on the fetus or the child secondary to the maternal POTS (1,2,4,5), and this is a reassuring conclusion. I am often asked if fainting can harm the baby, and the answer is no, a simple isolated faint will typically not harm the fetus because the fetus is protected by the surrounding amniotic fluid. However, if syncope during pregnancy becomes frequent and persistent, this may affect placental blood flow to the baby and will likely require an intervention from your doctor to effectively manage recurrent syncope.

7. Do any of the common POTS medications pass through to breast milk?

It is well-established that breast milk is superior to any formula for the baby. Yes, a small percentage of the medication will be excreted in the breast milk, but more likely than not, it would not affect the newborn. Some beta blockers are noted to be safer in breastfeeding than others. For example, metoprolol is considered safer than atenolol because atenolol has a longer half-life. Additionally, Prozac, which is acceptable during pregnancy, may be more harmful to the newborn through breastfeeding than Zoloft. Once again, the lowest dose of the medication with the least potential for the adverse effects for the baby would be utilized. Your pediatrician and pharmacist would be the best specialists to answer questions regarding specific medications and breastfeeding.

It is also important to mention that some women may be unable to breastfeed at all for various reasons. The medical community and our society strongly emphasize the benefits of breastfeeding and breast milk, which may lead to feelings of anxiety, depression, guilt and low self-esteem in those women who are unable to breastfeed their baby. I want to reassure those women that your baby will also thrive with bottle-feeding and formula. It would be more important for both the mother and the baby to be healthy and thriving, regardless of the mode and type of feeding.

8. Will my child develop POTS?

POTS is not a genetic disorder in the sense that it does not follow the type of genetic transmission that occurs in cystic fibrosis, for example. Although research in the genetics of POTS is currently lacking, it has been shown in various studies that POTS may run in families (13% to 40% of patients) (1). While POTS is not transmissible to children through one particular gene, it is possible that children may be predisposed to autonomic dysfunction as adolescents or adults through their overall genetic makeup. However, at this time, it is impossible to predict or calculate the likelihood of a child developing POTS if one parent is affected.

In summary, while POTS, like many chronic illnesses, is a concern to women who wish to become pregnant, the research studies available to date are reassuring that women with POTS may safely undertake pregnancy if they choose to do so. While there may be additional risks and complications, such as a possible increase in miscarriage rate and hyperemesis gravidarum, overall there appears to be no adverse maternal or fetal complications attributable to POTS. Nevertheless, there will be a significant number of women (about 50%), whose symptoms of POTS will become worse after pregnancy, and to this end, having a good support system and help with childcare are essential to the well-being of the mother, the baby and other family members.

References
1. Blitshteyn S, Bett GL, Poya H. Pregnancy in Postural Tachycardia Syndrome: clinical course and maternal and fetal outcomes. J Matern Fetal Neonatal Med. 2012; 25: 1631-1634.
2. Kanjwal KK, Karabin B, Grubb BP. Outcomes of pregnancy in patients with Postural Orthostatic Tachycardia Syndrome. PACE 2009; 32:1000-1003.
3. Peggs, KJ, Nguen H, Enayat D, et al., Gynecologic disorders and menstrual cycle lightheadedness in postural tachycardia syndrome. Int J Gynaecol Obstet. 2012; 118: 242-246.
4. Kimpinski K, Iodice V, Sandroni P, Low PA. Effect of pregnancy on Postural Tachycardia Syndrome. Mayo Clin Proc 2010; 85: 639-644.
5. Powless CA, Harms RW, Watson WJ. Postural tachycardia syndrome complicating pregnancy. J Matern Fetal Neonatal Med 2010; 23: 850-853.

Guest author Svetlana Blitshteyn, MD is the Director of the Dysautonomia Clinic and a Clinical Assistant Professor of Neurology at the University at Buffalo School of Medicine and Biomedical Sciences.  She also serves as a volunteer on Dysautonomia International’s Medical Advisory Board.

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There’s a reason no one says that living with a chronic illness is easy: because it isn’t. Living with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, can be especially challenging at times. However, there are ways, with practice, to manage life with dysautonomia and find your own version of normal

One of the most important things for me has been to realize is that no one is perfect. There will be good days, and there will be bad days. I have had bad days that felt as if they would never end. On some bad days, I get angry and upset. I want to be able to do things my peers are doing, but the fact of the matter is that I can’t always do that. I think it’s important to allow yourself small increments of time every now and again to get upset in order to release pent-up emotions. I think it’s just as important not to dwell on those bad days, though, because, in the long-run, just being frustrated doesn’t fix anything.

So, I’m not like most of my peers. This is a fact that I’ve learned to accept. In order to keep myself from spending too much time comparing myself to others, I focus on things I like and things I can do. As a college student, I spend a good amount of time on my studies, which is something pretty normal for any student, and I enjoy that sense of normalcy. Anchoring myself in school work definitely helps me. I do my best not to isolate myself from others.  I have a single dorm room, which really helps me manage my POTS since I’m able to sleep and rest when needed. While it’s sometimes tempting to stay in my room by myself constantly, I push myself to talk and interact with friends, and in the end, even if doing these things leaves me tired, I find that it also leaves me feeling better emotionally.

I would be wrong to say that I’m able to forget about my POTS entirely. Since I can’t ignore the fact that I have POTS, as that would make it far worse, I do my best to manage it. I take my medications, drink lots of fluids, increase my salt intake and exercise to keep my POTS under control (as under control as possible). With some reluctance, I use a shower chair, so I can sit down while showering, and also use a cane on days where I’m feeling especially off-balance. The reluctance is because I feel too young to need these things. I quickly realized, though, that these are tools to help me, and if there’s something that can help me, then I should take advantage of it. There is no shame in helping myself and making living with my illness easier.

Humor is something else that helps me stay positive. The reality of living with a chronic illness that few doctors know of is scary sometimes. Having a doctor say he or she doesn’t know what to do is terrifying because I thought from a young age that doctors were the people who would make me better if I was sick. There is no magic cure for me or the millions of other people living with POTS. Although I realize this, I still try to find humor in small things, like seeing ads for compression stockings online geared toward seniors and saying, “I would totally wear those,” or joking that I have a great sense of balance, when in reality sometimes I feel like I’m in a funhouse when standing on two feet, forget standing on one.

Sometimes it’s hard to do everything at once; it’s easy to get overwhelmed by school, relationships with others, and POTS. Most people my age are not so focused on their health. In the end, though, while POTS is a huge part of my life, it is not my life. I work hard to ensure that I balance everything at once so I can be as healthy and happy as possible. While I’ve yet to find the perfect balance, I’ve learned to laugh along the way.

Guest blogger Emily Deaton is a sophmore at James Madison University majoring in English and minoring in Nonprofit Studies.  She recently wrote an article on living with a chronic illness as a teenager for the Richmond Times Dispatch. When she isn’t studying, you can find her spending time with friends and participating in JMU’s InterVarsity Christian Fellowship.

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by Dr. Andrew White

There seems to be a growing awareness in the medical and patient community that some patients with postural orthostatic tachycardia syndrome (POTS) also have mast cell activation syndrome (MCAS).  It is not clear at this time what the relationship between POTS and MCAS is or how common this overlap is.  This is an extremely complicated intersection of two poorly understood illnesses, so there are more questions than answers right now.

I’m assuming if you are reading this blog, you understand what POTS is, but the concept of what mast cells do might be more foreign. Mast cells, for the last century, have been understood primarily in the context of allergic disease. They are the central cells in immediate allergic reactions to things like peanuts or bee stings. They secrete histamine and lead to the formation of hives and itchy rashes. More recently, researchers discovered that mast cells have an important role in wound healing, in the regulation of the immune system and in keeping us healthy. These roles are not as well understood.

Mast cells are present throughout most of our body. They can also be paired with neurons (nerve cells), including autonomic nerve fibers. Mast cells secrete up to 200 different chemicals in response to different stimuli. Doctors usually think of mast cell secretion as an “all or nothing” phenomenon. For example, the mast cell is releasing high quantities of histamine, prostaglandins, and leukotrienes at the time of an allergic reaction -OR- the mast cell is resting quietly, doing nothing. However, this is probably not the case as mast cells are constantly interacting with the environment – sensing – reacting. And in some people, this process might not work correctly.

When mast cells cause symptoms and problems in humans, they generally lead to episodes of abdominal pain, cramping, diarrhea, flushing, itching, wheezing, coughing, lightheadedness and potential problems with “brain fog” or other difficulties with memory. Many of these symptoms can be present in other illnesses that have nothing to do with mast cells. But there appears to be a subset of patients with POTS who are found to have a combination of these symptoms and laboratory evidence of problems with their mast cells.

So what tests can be done to determine if the mast cells are misbehaving? The first test that is usually done is a blood test for tryptase. Tryptase is a protein that comes from mast cells and it is usually elevated in two circumstances. The first is after a severe allergic reaction (anaphylaxis) and the second is if you have too many mast cells in your body (mastocytosis). If you have a significantly elevated tryptase, your doctor might recommend a bone marrow biopsy which is usually the definitive test for mastocytosis. Mastocytosis can be a serious illness, but it is different than the problem that most people with MCAS have. In mastocytosis, there are too many mast cells due to a genetic mutation that made one cell start to grow and divide without control. Patients with mastocytosis and MCAS are treated differently.

For most people with POTS, the tryptase level is normal and they don’t have mastocytosis. In these patients we need to look for other clues that their mast cells are not functioning normally. There are many different chemicals that come out of mast cells and can be measured. Substances like histamine, prostaglandins and leukotrienes are usually measured in a 24 hour urine sample. If the symptoms fit and the patient has evidence of making too much of a mast cell chemical, many physicians are then willing to diagnose MCAS and move on to treatment.

Although different diagnostic criteria are published, a commonly used strategy to diagnose patients is to use all three of the following:

1. Symptoms consistent with chronic/recurrent mast cell release
   a. Recurrent abdominal pain, diarrhea, flushing, itching, nasal congestion, coughing,  chest tightness, wheezing, lightheadedness (usually a combination of some of these   symptoms is present)
2. Laboratory evidence of mast cell mediator (N-methyl histamine, prostaglandin D2 or 11-beta- prostaglandin F2 alpha, leukotriene E4 and others)
3. Improvement in symptoms with the use of medications that block or treat elevations in these mediators

A word of caution about laboratory testing… many of the labs that can be ordered need to be sent on ice. If the labs are drawn at a facility that does not understand what is necessary, the samples may come back falsely normal. Testing is ideally going to be abnormal immediately after a flare up of symptoms. It would make sense to wait for testing on a “bad day.” There are several labs that can be ordered to help identify mast cell activation, but none of them are 100% accurateand all should be interpreted with care.

Treatment approaches are complex and individualized, and beyond the scope of a blog post. The take home point is if you have POTS or another form of dysautonomia and have some other symptoms that seem “allergic” like the ones that I mentioned above, you might want to ask your doctor about getting tested for MCAS. While any doctor can order the tests, an allergist or immunologist is the type of doctor that is most likely to be familiar with testing for MCAS.

Additional Resources
1. The presentation, diagnosis and treatment of mast cell activation syndrome.
2. Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options.
3. Hyperadrenergic postural tachycardia syndrome in mast cell activation disorders.

Dr. Andrew White is board certified in Internal Medicine and Allergy & Immunology. His practice at the Scripps Clinic in San Diego, California focuses on immune deficiencies and allergic disorders, including MCAS and mastocytosis. His research focus is on aspirin exacerbated respiratory disease.

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Dysautonomia International is a 501(c)(3) non-profit run entirely by volunteers.   We raise funds for research, physician education, patient advocacy and public awareness programs related to autonomic disorders.   In case you have’s heard yet, October is Dysautonomia Awareness Month!  Dysautonomia International offers several “dysautonomia awareness” items for sale and several businesses have generously offered to donate a portion of their sales to our organization this month.

Top 12 ways that you can shop to support Dysautonomia International:

1. Caramels for a Cause
Treats & Sweets by Barb proudly supports Dysautonomia Awareness Month by donating the full sale price of these Caramels for a Cause specialty packages through the end of October 2014 to Dysautonomia International!  Choose your favorite handcrafted caramel flavors, delivered in a pretty white box complete with a Dysautonomia Awareness Month pin and an info sheet inside. Yum!

2. Jamberry Nail Wraps
In celebration of Dysautonomia Awareness Month, from now through the end of October 2014, 30% of the proceeds from every purchase made through Independent Jamberry Consultant Heather Schurr’s website (a fellow POTS/NCS patient) will be donated to Dysautonomia International. Even better – Heather created a unique design just for Dysautonomia Awareness! Sport your favorite cause right on the tips of your fingers!

3. Believe Hair Accessories
The Feisty Freckly Boutique has created two fun and spunky accessories just for Dysautonomia Awareness! These beautiful ‘Believe’ awareness ribbon French clips and headbands are a wonderful way to show your support to the people who live everyday with Dysautonomia. 50% of the purchase price of this item will be donated to Dysautonomia International.

4. Dysautonomia Is Real
Anna Cumbow, of BEINGmomME.com, has created a line of clothing and gear to spread the word about awareness for chronic illness, specifically Dysautonomia and Ehlers-Danlos Syndrome. Through the end of October 2014, 100% of proceeds from these Dysautonomia products will be donated to Dysautonomia International (and 40% thereafter). With a little humor and a touch of style, these shirts and other products will encourage you as well as tell others about Dysautonomia!

5. danceBRAVE Clothing
Dancer and Choreographer, Marinda Davis, has developed an incredibly comfy danceBRAVE clothing line with American Apparel and is generously donating a portion of her proceeds to Dysautonomia International.  The raglan shirts say “the thing you take for granted, someone else is FIGHTING for.” The pants say “UNbreakable.” E-mail Marinda at haveyoubeenmarInspired@gmail.com or check out Visit Marinda’s Facebook page for details.

6. Dysautonomia Awareness Bravelets
Bravelets were created by a woman looking for a way for her family and friends to support her mother through breast cancer and a mastectomy, with a physical sign of unity.  Bravelets are a symbol of hope, strength and courage. They are designed to help you be brave in the toughest of times. When you purchase an item from Dysautonomia International’s Bravelet’s page, $10 from each bracelet will be donated to our organization.  We already know you are brave.  Now everyone else will too!

7.Dysautonomia International Gear Shop
We have created several product lines to deck you out in style!  These dysautonomia awareness themed shirts and pajamas are fun conversation starters.

8.  POTS – Together We Stand! Riding the Waves of Dysautonomia
Written by Dysautonomia International co-founder Jodi Epstein Rhum, this book provides great tips on how to cope with all that POTS throws at you.   Jodi donates 10% of her book profits to Dysautonomia International all year long.  When you purchase her book through our Amazon store, Amazon donates an additional 6%.  Ask your local libraries to order a copy too!

9. Dysautonomia International’s Amazon Store
Use our Dysautonomia International Amazon Store to buy anything on Amazon. When you get to the Amazon website through out link, Amazon donates 6% of your purchase price to Dysautonomia International at no extra cost to you.  Ask your friends and family who shop online to use this link too: www.dysautonomiainternational.org/AmazonStore

10. chloe + isabel
In celebration of Dysautonomia Awareness Month, chloe + isabel jewelry boutique owner Lydia Leser will donate 25% of her commission to Dysautonomia International on all orders placed by November 2nd.

11. Dysautonomia Awareness Month Online Charity Auction
Join us on Facebook for an exciting online auction.  100% of the proceeds will benefit Dysautonomia International’s research grant program.  Items up for bid include phone consults with top dysautonomia experts, vacations, gift cards, jewelry, clothing and much more!  Bidding will remain open until October 31st.

12. Shop with our Corporate Partners
When you shop through one of our Corporate Partners a percentage of the purchase price of anything you buy is donated to Dysautonomia International. Our Corporate Partners include Mary Kay, Norwex, Rodan & Fields Skin Care, Origami Owl jewelry and more.

Thank you to guest blogger Anna Cumbow for compiling this list!

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Many doctors recommend increasing salt intake to help combat the symptoms of lightheadeness, low blood pressure, fatigue and brain fog that is often seen in dysautonomia patients.  Dysautonomia patients often buy salt pills,  or expensive supplements and electrolyte drinks to get their salt, but there are easier, more affordable ways to increase salt in your diet.

Salt vs. Sodium – what’s the difference?
Common table salt is about 99% sodium chloride, a naturally occurring mineral.  According to the USDA, 1 g of typical table salt contains 387.6 mg of sodium.

Hypothetically, if your doctor says “aim for 8 grams of salt per day,” how much sodium do you need to equal 8 grams of salt per day?

8 grams of salt pr day x  387.6 milligrams of sodium per gram of salt
= 3101 mg of sodium per day

This means that you’ll need 3101 mg of sodium per day to meet your doctors recommendation of 8 grams of salt.  You can do this!

Let’s say you aren’t used to a high salt diet yet and you can only tolerate sprinkling 1/4 teaspoon of salt on your food throughout the day. Overtime your taste buds will get used to a higher salt diet.  Our trusty table below tells us that 1/4 teaspoon of table salt equals 590 mg of sodium.

3101 mg of sodium required to meet your doctor’s advice
– 590 mg of sodium you will sprinkle on your food throughout the day (1/4 teaspoon of salt)
2511 mg of sodium from other sources

Obtaining 2511 mg of sodium a day from foods and beverages isn’t that difficult (unless you have severe gastroparesis, as some dysautonomia patients do).  In fact, according to the CDC, the average American adult consumes 3,300 mg of sodium per day.  The NHS says that, on average, people in the UK consume 3,200 mg of sodium per day.

This being said, here are some common food items and their sodium levels to help our hypothetical patient find their 2511 mg of sodium.  Please note, we’re not recommending specific brands.  These are just examples.

Here are some salty items you can find in popular American restaurants.  Please note that many of these restaurant items contain obscene amounts of calories and fat, with the exception of the Hot & Sour Soup, which is surprisingly low calorie compared to other items on the list.

Shake It Like A Salt Shaker…
Once you’ve acquired a taste for salt, you can begin to sneak more salt into your foods with a good old-fashioned salt shaker.   Some food items can hide the taste of excessive added salt better than others.  Here are some examples:

Another trick is to mix salty and sweet flavors.  A little sprinkled salt goes well with brownies, vanilla ice cream, chocolate chip cookies, and watermelon.  Carmel dipping sauce and dark chocolate taste great with lots of salt.  For sweet treats, large grain salt adds a nice crunch and gives you more sodium for less of a salty taste, since your tastebuds won’t come in to contact with as much of the salt compared to smaller grained salts.

Salt Supplements
For an added boost, some patients use buffered salt capsules or electrolyte supplements, like Liquid IV, Vitassium or NormaLyte. These are usually well tolerated and there are many different types of supplements available if these aren’t your cup of tea.

Some physicians recommend 1000 mg (1 g) sodium chloride tablets – a big chunk of salt you swallow.  Most people find that these tablets upset your stomach, because it is too much salt at once.  If sodium chloride pills cause vomiting or diarrhea, you can end up losing more salt than you consumed.

Salt to Sodium Conversion Table
If your doctor has recommended another amount of salt, here’s a handy salt to sodium conversion table.  This is a rough approximation, because each type of salt has a slightly different sodium concentration.

1 gram of salt   = 388 mg of sodium
2 grams of salt = 775 mg of sodium
3 grams of salt = 1163 mg of sodium
4 grams of salt = 1550 mg of sodium
5 grams of salt = 1938 mg of sodium
6 grams of salt = 2326 mg of sodium
7 grams of salt = 2713 mg of sodium
8 grams of salt = 3101 mg of sodium
9 grams of salt = 3488 mg of sodium
10 grams of salt = 3876 mg of sodium
11 grams of salt = 4268 mg of sodium
12 grams of salt = 4656 mg of sodium
13 grams of salt = 5044 mg of sodium
14 grams of salt = 5432 mg of sodium
15 grams of salt = 5820 mg of sodium
16 grams of salt = 6208 mg of sodium
17 grams of salt = 6596 mg of sodium
18 grams of salt = 6984 mg of sodium
19 grams of salt = 7372 mg of sodium
20 grams of salt = 7760 mg of sodium
21 grams of salt = 8148 mg of sodium
22 grams of salt = 8536 mg of sodium
23 grams of salt = 8924 mg of sodium
24 grams of salt = 9312 mg of sodium
25 grams of salt = 9700 mg of sodium
26 grams of salt = 10088 mg of sodium

Don’t Forget the Fluids!
Increasing salt intake really only helps when you also increase your fluid intake.  Most dysautonomia experts recommend consuming 2-3 liters of hydrating fluids per day. Everyone is different, so ask your doctor how much salt and fluid intake is right for you.

Salt comes in many forms.  From left to right, Kosher Salt, Bolivian Rose Salt, Balsamic Infused Salt, Hawaiian Alaea Salt,  Sel Gris from France, Smoked Sea Salt and Table Salt.

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Many physicians mistake the physical symptoms of POTS, such as tachycardia, palpitations, and shortness of breath, as the signs of an anxiety disorder or some other psychological problem.  Prior research has documented that POTS is not associated with increased levels of anxiety or psychiatric disorders, that POTS symptoms are phenomenologically different and clinically distinguishable from panic disorder, and that the upright tachycardia seen POTS patients is not caused by anxiety.

Despite publication of this research, many physicians continue to misdiagnose POTS patients as having anxiety disorders or other psychiatric conditions.   While psychiatric disorders are serious health problems that require proper treatment, the treatment for these conditions is not the same as the treatment for POTS, and can sometimes make POTS symptoms worse.

New research provides additional proof that POTS is not “all in your head.”  A study recently published in Clinical Autonomic Research, Visceral sensitization in postural tachycardia syndrome, examined whether palpitations frequently reported by POTS patients were psychological or organic in origin.  Palpitations are those thumping, fluttering, pounding sensations everyone feels from time to time in their heart, but many POTS patients experienced palpitations on a regular basis, and much more so than healthy individuals.

This study found that POTS patients “did not amplify their somatic and visceral sensations compared with control subjects, indicating that they are not predisposed to exaggerating every symptom and militating against psychologic origin.”  After analyzing the data collected, the study’s author, Dr. Ramesh Khurana, concludes that the palpitations in POTS “are of an organic origin.”

However, Dr. Khurana notes that POTS patients had greater ability to discriminate the type of palpitation compared with healthy subjects, “favoring visceral hypersensitivity and a central origin of POTS symptoms.”  Visceral sensitivity is a medical term used to describe an increased sensation of pain and sensations coming from your own internal organs, more so than a normal person would experience.  By “a central origin” Dr. Khurana is referring to the central nervous system, which includes the brain and spinal cord.  He explains, “potential locations for visceral hypersensitivity include sensory receptors in the cardiovascular system, extrinsic sensory afferent neurons, spinal nociceptive neurons, medulla, midbrain raphe, hypothalamus, and cortex.”

Dr. Khurana also reminds us that POTS is heterogeneuous condition, and that the concept of visceral sensitization may not apply to every POTS patient.  He notes that palpitations did not occur in all of the POTS patients who participated in the study.

Dysautonomia International is actively raising funds to support additional research on POTS.  If you would like to support POTS research, please visit our donation page today.

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