Willpower Boosters for Dysautonomia Patients (and Anybody)

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By Jill Brook, MA, Nutrition consultant and patient at Dysautonomia Clinic

Happy holidays! Are your eating habits sliding more than you’d like, with all the festive temptations? Dysautonomia patients can be at a disadvantage when it comes to willpower, because many of us struggle with adequate quality sleep and exercise—two things proven to strengthen willpower. But fear not: There are at least 3 other ways to improve willpower, according to Stanford health psychologist Dr. Kelly McGonigal:

1. Meditate for 10-15 minutes per day.
Studies have shown that just 8 weeks of meditation improves willpower and increases grey matter in the part of the brain responsible for self control. OK, so 8 weeks won’t be soon enough to get you through the holidays, but it’ll have you fortified for any New Year’s resolutions you want to tackle. The Headspace app (and many other online tools) can show you how to meditate for free.

2. Replace self-criticism with self-compassion.
Studies have shown that when subjects practice forgiving self-talk after blowing their diets with donuts, they actually became more able to resist candy than those allowed to stew in self-criticism. Isn’t that amazing? The studies found that being mad at oneself for eating donuts caused people to eat MORE candy! That could lead to a shame spiral of bad eating. So replace any nagging self-critical thoughts with positive encouragement. Speak kindly to yourself, as you would speak to a good friend. Dr. McGonigal and her colleagues believe that this strategy works because self-criticism is a form of stress, and stress reduces willpower.

3. Practice very small acts of self control.
Start small and watch how succeeding at minor goals will lead you to success at ever bigger ones. For example, when researchers asked students to practice good posture for two weeks, the students then showed improved willpower to resist junk food.

The great thing about these strategies is that they apply to all sorts of different goals, like becoming a better student, saving money, or any other tasks that require self control.

More details and practical tips are in McGonigal’s book: The Willpower Instinct: How self-control works. Why it matters. What you can do to get more of it. If videos work better than books for you, Dr. McGonigal also shares many of her findings in this online presentation.

Here at the Dysautonomia Clinic, we wish you a marvelous holiday season!

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Thirsty for more hydration knowledge? A POTSy perspective

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Good hydration means your body has the right amount of fluid in the right places. A normal body is about 50-60% water, but body parts differ:

  • Blood is typically about 93% water;
  • muscle is about 73% water;
  • fat is about 10% water;
  • lungs are about 83% water;
  • the brain is about 73% water.

Sweating 2% of one’s body weight (e.g., 3 pounds or 6 cups for someone who weighs 150lbs) is known to make athletes lose their physical and mental edge in the heat. Sweating just 1.5% is known to make average people feel sluggish, moody and unable to think clearly.

Most people don’t need to think about hydration too much: They drink when thirsty, eat when hungry and voila…their bodies do the rest.

A POTSy body often isn’t so good at retaining fluids. One common problem involves the kidney hormones aldosterone, angiotensin and renin, which regulate sodium and fluid retention. When not enough fluid stays in the bloodstream, the reduced blood volume (a.k.a. hypovolemia) contributes to many of the POTS symptoms: low blood pressure, dizziness, fatigue, higher heart rate, heat intolerance, and other classic symptoms.

So it’s probably no surprise that POTS patients need exemplary hydration habits. Below are some findings about sneaky dehydrating factors and tricks for boosting hydration. While this research wasn’t done on POTS patients, and may not always apply to our POTSy bodies, it offers some guidance on things we can try in our quest to feel better. (Disclaimer: Check with your doctor before experimenting.)

These things can dehydrate you:

Low-carb diets, because every gram of carbohydrate hangs on to several times its weight in water during the digestion process.

High protein diets, because acidic byproducts of protein digestion are flushed out with lots of water.

Low-sodium diets, because sodium is the most important electrolyte needed for the body to retain water. Drinking large amounts of water without enough sodium can be dangerous.

Diets lacking in fruits and veggies. The body is designed to get lots of moisture and electrolytes from watery plant foods. For example:

  • Lettuce is 96% water,
  • Broccoli is 89% water,
  • Tomato is 95% water,
  • Oatmeal is 84% water,
  • Watermelon is 92% water,
  • Cucumber is 96% water,
  • Zucchini is 95% water,
  • Cantaloupe is 90% water,
  • Blueberries are 85% water.

Alcohol, a strong diuretic.

Vinegar, a strong diuretic.

High altitudes, because faster breathing and dry air makes you exhale more moisture.

Getting too cold. In an effort to warm you, your body moves fluids from extremities to your core, which increases urine output.

Caffeine and caffeine tablets. Caffeine is a mild diuretic and could lead to mild dehydration if it is not accompanied by drinking water.

Some drugs. Laxatives, blood pressure lowering medications and antihistamines are among those that can dehydrate.

Hormonal fluctuations. Because the reproductive hormones estrogen and progesterone also affect blood plasma volume, young women usually have a time of the month when they are mildly dehydrated due to these hormones.

Getting too hot and sweating.




These things can boost hydration:

Chugging a little before sipping. Start your day by drinking 2 cups of water or other fluid, which signals your stomach to empty fluid into your intestines faster. After that your occasional sips will hydrate you faster.

Consuming enough salt and fluids. The 2015 POTS Expert Consensus Statement recommends consuming up to 10-12g salt and 2-3L water per day.

Sports drinks hydrate better than water because the carbs, salt and other electrolytes help your body absorb fluids, rather than passing them straight through to your bladder.

A little protein. Sports drinks that contain a little protein are more hydrating than those without. Every major brand now offers a version with protein. This is not referring to high protein shakes, but recovery drinks that contain a small amount of protein, usually in a carb:protein ratio of about 4:1.

Soaked chia seeds. Chia seeds reportedly powered the Aztecs to battle and the Tarahumara Indians during their regular 50-100 mile runs. This tip comes from the book “Born To Run: A Hidden Tribe, Superathletes, and the Greatest Race the World Has Never Seen” by Christopher McDougall. Soaked chia seeds may promote hydration because they absorb 12 times their weight in water, grow gelatinous, then slowly release their water during the following days, as they pass through your digestive system. Just don’t forget to soak them for at least 2 hours before consuming so that they don’t expand after you eat them. Start by mixing a teaspoon of chia seeds into a cup of your favorite beverage, soak for 2+ hours, and chew them up as you drink. McDougall compares the nutrition of chia seeds to “a smoothie of salmon, spinach and growth hormone,” but don’t worry—they taste like whatever you soak them in. My favorite soaks are soymilk and cinnamon or coconut water.

What about….?

Coffee or tea. Caffeinated beverages have a mild diuretic effect and can also increase heart rate. Check with you doctor whether it’s safe for you to consume caffeine and at what amounts.

Electrolyte powders or tablets, such as Lyte Show, Nuun, Electro-Mix and many others are good to have on hand, especially when away from home. These can be added to water or other fluids to boost hydration. Follow the directions and add extra salt if the mix is salt-free, like Electro-Mix.

DIY sports drink. You can make your own sports drinks by combining water, salt, sugar (or honey, maple syrup, etc.), and lemon or lime juice or other fruits. You can also add powdered electrolytes such as Electro-Mix or Lyte Show, if desired. There are thousands of different recipes available online, but a simple one from Nancy Clark, RD, the world’s most respected sports nutritionist, calls for mixing:

  • 3 ¾ cups cold water
  • ¼ cup pure maple syrup
  • ¼ teaspoon salt

Coconut water. Studies suggest that coconut water hydrates as well as sports drinks, however it was more likely to cause bloating and stomach upset in one study where it was consumed after running on a treadmill for 60 minutes.

Pickle juice has been studied in small quantities (drinking 1mL/kg body weight) with no findings of benefit or harm. It is not recommended to drink more, as some experts worry it could lead to blood mineral imbalances such as hyperkalemia (high potassium).

Carbonated water is reported to be just as hydrating as regular water, for healthy people. However it may suppress thirst and therefore make you drink less water if you aren’t paying attention.

Sugar-free options. Sugar in beverages promotes better hydration, however if you want options without added sugar, some of the more hydrating choices are soup broth, bone broth, miso broth, unsweetened soymilk, rice milk, oat milk, hemp milk, coconut water or cow’s milk. Just make sure to read ingredient labels and avoid carrageenan, if you want to protect your intestines from possible inflammation and distress.

My personal favorite ways to hydrate include veggie broth, bone broth, organic soymilk, watermelon with salt and cocoa powder sprinkled on top, all sorts of MCAS-friendly teas (more on that in a later blog), salty and sweet veggie stir-fry or ratatouille, roasted salty cauliflower or zucchini, soaked chia, berries and cinnamon, and weak decaf coffee with a pinch of salt and coconut or almond milk. I would love to hear about your favorite hydrating concoctions, so please share. Cheers!

By Jill Brook, M.A., Patient & Nutrition Consultant to the Dysautonomia Clinic


• Raj SR, Biaggioni I, Yamhure PC, Black BK, Paranjape SY, Byrne DW, Robertson D. Renin-aldosterone paradox and perturbed blood volume regulation underlying postural tachycardia syndrome. Circulation. 2005 Apr 5;111(13):1574-82. Epub 2005 Mar 21.

• Mar PL, Raj SR. Neuronal and hormonal perturbations in postural tachycardia syndrome. Front Physiol. 2014 Jun 16;5:220. doi: 10.3389/fphys.2014.00220. eCollection 2014.

• McDougall, C. Born to Run: A Hidden Tribe, Superathletes, and the Greatest Race the World Has Never Seen. New York: Vintage Books; 2009.

• Clark, N. Nancy Clark’s Sports Nutrition Guidebook—5th Edition. Champaign, IL: Sheridan Books; 2014.

• J Int Soc Sports Nutr. 2012 Jan 18;9(1):1. doi: 10.1186/1550-2783-9-1.

• Kalman DS, Feldman S, Krieger DR, Bloomer RJ. Comparison of coconut water and a carbohydrate-electrolyte sport drink on measures of hydration and physical performance in exercise-trained men. J Athl Train. 2009 Sep-Oct;44(5):454-61. doi: 10.4085/1062-6050-44.5.454.

• Gregor, M. Is Caffeinated Tea Dehydrating? NutritionFacts.org website http://nutritionfacts.org/video/is-caffeinated-tea-dehydrating/. Accessed Nov. 26, 2016.

• R Sheldon, BP Grubb, B Olshansky et al. 2015 Heart Rhythm Society Expert Consensus Statement on the Diagnosis and Treatment of Postural Tachycardia Syndrome, Inappropriate Sinus Tachycardia, and Vasovagal Syncope. Heart Rhythm June 2015:12(6); e41–e63.

• Miller, KC, Mack, G, Knight, KL. Electrolyte and Plasma Changes After Ingestion of Pickle Juice, Water, and a Common Carbohydrate-Electrolyte Solution. J Athl Train. 2009 Sep-Oct; 44(5): 454–461. doi: 10.4085/1062-6050-44.5.454.

• Salt and your health, Part I: The sodium connection. Harvard Health Publications, Harvard Medical School website www.health.harvard.edu/newsletter_article/salt-and-your-health. Accessed Dec. 2, 2016.

• Winter dehydration. Human Performance Resource Center, Department of Defense website www.hprc-online.org/blog/Winter-dehydration. Accessed Dec. 2, 2016.

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8 Natural Ways to Prevent Migraines

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8 Natural Ways to Prevent Migraines

By Jill Brook MA, Patient & Nutrition Consultant to the Dysautonomia Clinic

If you suffer from headaches or migraines (and the word “suffer” may be an understatement!) here is some good news: There are several natural, easy treatments that excelled when put to the test of randomized double-blind placebo-controlled clinical trials.

Herbs and Spices

1. Ginger
A 2014 study with 100 patients found that 1/8th teaspoon ginger powder worked as well
as the migraine drug sumatriptan for controlling migraines, without the bad side-effects.
Ginger tea (store-bought or homemade with grated ginger) would be an easy way to get
yours. You can read more here.

2. Butterbur
In a 2004 study, butterbur cut the average number of monthly migraines in half for
those who took 25mg twice per day. One particular blend with the brand name
Petadolex was found effective in doses of 100mg/day and even more effective at
150mg/day. The American Academy of Neurology (AAN) states taking 50-75mg
butterbur twice a day is effective at preventing migraines. You can read more here
and here.

3. Feverfew
The AAN lists feverfew as “probably effective” in preventing migraines at doses of 50-
300mg twice per day. Dried feverfew appears to be more effective than other forms of
the herb. Canadian health authorities recommend taking 125mg dried feverfew per day
to prevent migraines. You can read more here.

4. Saffron
A 2008 study found that taking 15mg saffron powder capsules twice per day reduced PMS headaches, pain, and boosted mood. You can read more here.

5. Lavender aromatherapy
In a 2012 study, smelling lavender essential oil was effective for managing acute migraines in 92 out of 129 patients. You can read more here.

An extra perk of herbs and spices are healthy side-effects. For example, these plants are antiinflammatory; ginger reduces nausea and menstrual cramps; saffron may help prevent
Alzheimer’s and depression; and lavender aromatherapy reduces anxiety. Feverfew prevents cancer and mast cell degranulation, which may be a big perk for those with MCAD.

Vitamins & Minerals

According to the American Academy of Neurology 2012 Guidelines for Prevention of Episodic Migraines, the following vitamins and minerals may help:

1. Magnesium
The AAN lists this mineral as “probably effective” for preventing migraines, in the
form/dose of 600mg trimagnesium dicitrate taken daily. Great food sources of
magnesium include leafy greens, nuts, seeds, cocoa nibs, fish, beans, avocado, yogurt,
banana, dried fruit and more. The daily value is 400mg, which most people don’t reach,
so supplementation may be required to get enough for preventing migraines. Too much
can cause diarrhea.

2. Riboflavin (vitamin B2)
The AAN reports this vitamin is “probably effective” at 400mg per day. This is a very high
dose, as the daily value for riboflavin is only 1.7mg. Great food sources of riboflavin
include beef liver, lamb, eggs, milk, yogurt, spinach, almonds, and salmon, however
supplements will probably be required to get enough riboflavin to prevent migraines.

3. Coenzyme Q10
CoQ10 is technically not a vitamin because our bodies can produce it, however most
people get about 3-5mg per day from eating meat, chicken, fish, veggies and other
foods. The AAN lists CoQ10 as “possibly effective” at doses of 100mg three times per
day. This is more than you can get from food alone, so you’ll need a supplement.
Because CoQ10 is fat soluble, you’ll absorb it better with a meal or snack that contains
some fat.

You can read more about current AAN guidelines for preventing migraines here.

As always, check with your doctor before taking anything new. But if you try these, I’d love to hear about your experience. These treatments were not tested on dysautonomia patients per se, but we can hope they help us too.

Wishing you good health,


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New at Dysautonomia Clinic: Nutrition Consults!

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Dysautonomia Clinic is happy to provide additional services that benefit our patients with dysautonomia and other chronic illnesses. Proper nutrition plays a key role in maintaining a healthy lifestyle and improving symptoms and well-being in patients with chronic illness. Currently, numerous diets are being promoted, from gluten-free to low-histamine to low-carb to ketogenic. How to make sense of it all? What diet would work best for you, given your own unique set of conditions and food sensitivities? This is why Jill Brook, MA, an experienced nutritionist and POTS patients, has joined our clinic and is ready to offer her professional and personal expertise by providing nutrition consultations to our patients.

Ms. Brook has been a nutritionist in California for 25 years and a POTS patient for 20. She is active in the dysautonomia community, volunteering with several advocacy groups, co-authoring several published articles about POTS and designing mobile apps for patients. We share a bit of her background here, as well as information about her nutrition services.

Jill Brook, MA

Ms. Brook grew up in Madison Wisconsin, graduated from Princeton University, then attended UCLA for a PhD program in research psychology and statistics. That is where in 1997 POTS set in. She mistook her frequent passing out in class as a lack of interest, and left with a Master’s degree to pursue her passion in nutrition. She worked as a nutrition researcher at the Pritikin Longevity Center and UCLA, eventually serving as their nutritionist. For 15 years Jill had a private nutrition practice in Pasadena, California, counseling individuals and consulting for groups including Caltech, Disney, and NBC’s Today Show. She authored books, trained nutrition counselors internationally, and won awards for providing outstanding nutrition services, however POTS progressed and she eventually had to move to a cooler climate. She spent several years homebound, struggling with many common aspects of dysautonomia, all the while studying nutrition science for more ways to feel better. Happily, after a 16-year diagnostic delay and 3 years of trying various treatments, she is back on her feet and feeling much better. She has a deep appreciation for the wide variety of challenges patients face, and always listens carefully to make sure she understands each patient, so that she can most improve their unique situation. When not scouring the latest nutrition research for practical solutions to live better, Ms. Brook volunteers as a statistician and research assistant to help dysautonomia research progress faster. She lives in northern California and Alaska, with her husband and dogs.

Nutrition Consultations

At Dysautonomia Clinic, our nutrition consultations consist of a 60-minute phone or video consultation for new patients, after which you will receive a detailed written summary with an individualized nutrition plan, as well as helpful resources. The cost of the initial 60-min consultation is $150, with a 30-min follow-up consultations of $100. Request your appointment by emailing to admin@amherstneurology.com.

Consultations focus on finding practical ways to make the patient’s life better. Examples of topics include improving energy, mood, pain, sleep, strength, digestion, MCAS/histamine reactions, weight, blood pressure, gut health, inflammation, immunity/autoimmunity, or logistical challenges, such as how to prepare meals when you can’t tolerate heat or standing.
Consultations can also address willpower tactics, because knowing how to eat better doesn’t necessarily help you do it!

The majority of the consultation is spent discussing your goals, challenges, what you’ve tried in the past, and what are your best next steps. Ms. Brook will help you design a realistic game plan that often involves a series of self-experiments to help you find what works best for you. While Ms. Brook can offer expertise on what nutrition science says about your issues, you are the expert on your own body, and will likely need to use some trial and error to determine your best solutions. We look forward to working with you and improving your health and well-being through proper nutrition!

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Mast Cell Activation Syndrome Overview: ABCs on MCAS

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taylor By Taylor A Doherty, MD
Associate Professor , Allergy & Immunology
UC San Diego School of Medicine

Classical allergies are manifested by symptoms of itching, watery eyes, nose stuffiness, sneezing, rashes and wheezing. Sometimes allergies cause life-threatening reactions that lower blood pressure and comprise breathing, especially if a patient is very sensitive to specific foods, medications or insect stings. Mast cells are the primary cell type that triggers these symptoms by producing histamine, prostaglandins, leukotrienes and many other substances. In the case of conventional allergies, mast cells are bound by a molecule called immunoglobulin E or “IgE”. Normally the body produces immunoglobulins to protect against foreign invaders such as bacteria and viruses. However, allergies can develop when IgE is produced against specific environmental agents that do not pose a threat to the host. Examples include pets, foods, medications and pollens.

Once the IgE is bound to the mast cell, the mast cell is a loaded gun that is ready to fire when the trigger is present in the blood and tissues. Medications including antihistamines, anti-leukotrienes (montelukast/Singulair), cromolyn, and corticosteroids are used to block this response and reduce symptoms. Doctors are also using an anti-IgE injection to help people with asthma and hives. Allergists commonly use allergy shots to change the way the immune system sees some allergens.

Newer to the world of allergy, Mast Cell Activation Syndrome (MCAS) is a disorder where mast cells are activated even without IgE or classic allergic triggering. Since mast cells are present in the gastrointestinal tract, lungs, nose/sinuses, blood vessels, nervous system, and skin, activated mast cells in any of these locations can produce a wide variety of symptoms. Skin flushing is common in MCAS and can occur along with hives, abdominal pain, diarrhea, lightheadedness, fainting, anxiety, brain fog, and many other symptoms. Patients with MCAS often have triggers that are not classic for other allergic patients and include environmental chemicals, temperature changes, many unrelated medications, alcohol, and unusual foods. Many times there are specific “flares” though some patients appear to have more chronic symptoms.

MCAS is diagnosed usually by an allergist/immunologist based on history and laboratory testing. Lab tests for MCAS include serum tryptase (mast cell product) and urine leukotrienes, histamine, and prostaglandins. Unfortunately, much of the testing is not well standardized as understanding MCAS is in its infancy. Positive testing is supportive of a MCAS diagnosis but negative testing is not unusual. Conventional therapy for MCAS includes H1 and H2 antihistamines, anti-leukotrienes, mast cell stabilizers (cromolyn, ketotifen), and corticosteroids. Anti-IgE appears to reduce mast cell responses even in patients without an IgE trigger and is being currently being tried in MCAS as well. Many patients with MCAS are able to control their symptoms with medication and trigger avoidance. Hopefully, with more understanding, novel therapies will be available to help those who still suffer with MCAS.

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Post-Election Concerns and Chronic Illness: Five Points That You Need to Know

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ada-illustrationBy Dr. Svetlana Blitshteyn

Americans with disability are a minority, and given the post-election discourse in the country, it is understandable that many people with invisible chronic illness or visible disability may be feeling afraid.  What will the future hold, both from the top down in terms of the government policies on healthcare and Americans with disabilities laws, and from the bottom up, in terms of tolerance, acceptance, equality and potential risk of hate acts taking place in the country.  While anxiety may be running high, getting educated on facts may lessen the fears while empowering you to remain grounded in the face of uncertainty and unpredictability.

1. Americans with Disabilities Act

A brief review of the Americans with Disabilities Act (ADA) is necessary to understand how important this piece of legislation is.  In 1990, President George H.W. Bush signed The Americans with Disabilities Act (ADA) into law.  Since then, it has been one of the country’s most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life — to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services. Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 — the ADA is an “equal opportunity” law for people with disabilities.

To be protected under the ADA, one must have a disability, which is defined by the ADA as a physical or mental impairment that substantially limits one or more major life activities. The ADA does not specifically name all of the impairments that are covered.

While nothing is certain at this point, ADA is very unlikely to change under the new President-Elect.  Rest assured that your rights will remain protected, and you will continue to participate in the mainstream of American life without prejudice or discrimination.

2. Election and Healthcare

The problems with the US healthcare system did not begin with and will not end with the repeal of the Affordable Care Act (ACA) that was signed by the President Obama. The Trump Administration proposed the following points that they hope to implement with the help of Congress and states:
-Protect individual conscience in healthcare;
-Protect innocent human life from conception to natural death, including the most defenseless and those Americans with disabilities
-Advance research and development in healthcare
-Reform the Food and Drug Administration so as to put greater focus on the need of patients for new and innovative medical products
-Modernize Medicare so that it will be ready for the challenges posed by the coming retirement of the Baby Boom generation
-Maximize flexibility for states in administering Medicaid to enable states to experiment with innovative methods to deliver healthcare to low-income citizens

With these propositions in mind, should you be concerned about your medical insurance if you have a chronic illness?  The short answer is no.  The checks and balances that are in place in our government are designed to protect our democracy and our constitutional laws.  Therefore, social security disability benefits and healthcare insurance coverage are here to stay, no matter who is the President.  The healthcare model may change, but it appears that the President-Elect, who vowed to repeal and replace ACA, is already keeping several important ACA provisions including the “pre-existing conditions” clause prohibiting that health insurers from charging more or deny coverage to you or your child because of a pre-existing health condition like asthma, diabetes, or cancer. The pre-existing condition clause also prevents the medical insurance companies from limiting the benefits if you have a pre-existing condition. Once you have insurance, they can’t refuse to cover treatment for your pre-existing condition.  Although a change in Presidency can be unsettling, you will continue to receive medical coverage and other benefits as previously.

3. Election and medical marijuana

If there is good news for everyone regardless of political affiliation, it’s that this election has brought significant progress for the medical marijuana use.  On the medical marijuana issue, voters in Florida, North Dakota and Arkansas have approved medical marijuana initiatives. Voters in Montana also rolled back restrictions on an existing medical pot law. Additionally, voters in California, Massachusetts and Nevada approved recreational marijuana initiatives, and several other states passed medical marijuana provisions, in what is turning out to be the biggest electoral victory for marijuana reform since 2012, when Colorado and Washington first approved the drug’s recreational use. Still, the new President-Elect leaves a lot of uncertainty about the fate of marijuana measures in the next four years. Under President Obama, federal authorities largely took a hands-off approach to state-level legalization efforts. But an incoming administration more skeptical of drug reform could easily reverse that approach.  We remain hopeful that the progress that we’ve gained with medical marijuana use will continue under the new administration.

4. What can YOU do in the post-election time as a person with chronic illness?

The single most important thing you can do is what you have been doing already:  taking care of yourself and your family.  You must maintain your daily routine and not let the stress, fear and other emotions precipitated by this the election destroy your normalcy.   If there is a silver lining in the current discourse of the country is that it has shaken some people to the core, made them realize what they stood for and had opened new passions and directions in life.  If you’re one of those people, this may be an opportunity for you to channel your strong emotions into the newly discovered passions, interests or actions within your family, your community or your local government.  Despite and because of chronic illness, some people are finding their voice and becoming more proactive in this post-election time than they have ever been before.

5. What can YOU do as a parent of a child with chronic illness?

Our government is about to change, but our core values should not; in fact, this election may have further reaffirmed them.  Perhaps the discourse in our country encouraged the much-needed conversation among ourselves and with our children about tolerance, acceptance, equal opportunity, equal rights, justice, kindness, compassion, greatness, and many other principles that make our country and our people great. We do not need to use our presidential candidates as role models for ourselves and our children if we don’t approve of their character or conduct.  This election has been different than other elections, and many things that were said and done by the candidates are the very things we teach our children not to do.

Our principles remain firm and continue to be passed on from generation to generation. What is your responsibility as a parent?  It is what it always has been, and it is now important more than ever to impress upon our children the concepts of basic human decency:  to be kind and to respect everybody, regardless of their race, religion, country of origin, appearance or abilities.  Tell them to embrace and defend one another against bullies.  Tell them not to engage in school chants that are hateful or hurtful to others.  Teach them what to do if they feel offended or threatened in any way by other children or adults.  Tell them that they are valuable and just as smart, strong and loved as healthy children.  Tell them that they too can change the world and be whatever they choose to be. Tell them that they will succeed despite their illness and also because of it.  Tell them that you will be there for them to help them, guide them and protect them, and teach them how to protect themselves and be their own advocate.  Tell them to accept and appreciate the help from others, but also how to give back and help others.

People with chronic illness and disabilities may be a minority, but the strength of this community is enormous.  Chronic illness fosters the type of endurance and resilience that may not be achievable by many healthy people, and that’s what makes this community so powerful in these uncertain post-election times.

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Election and Chronic Illness: 10 Things You Can Do to Help Yourself

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By Dr. Svetlana Blitshteynelection

Whether you wanted or not, you have been thrust into the madness of this election and the outcome that shattered our country and the world.  Although no glass ceilings have been broken, broken is how many people feel right now, whether their candidate won or lost.  If you voted and your candidate didn’t win, shock, disbelief, anger, frustration, and denial may set in, much like in the grieving process.  If you voted and your candidate won, your happiness may be tamed by the discourse in the country, discourse among your friends or within your own family.  Insults are flying left and right, people are accusing each other of voting for the wrong person, and some people acting out much like children who need parental guidance to redirect, reassure and calm down the strong emotions.

If you, like many others, find yourself out of control, with feelings of frustration, anxiety, depression or rage, there are a few things you can do for yourself to get control of your emotions in order to restore well-being.

  1.  First, acknowledge your feelings and give yourself permission to feel the emotions.  After all, this country and the people are experiencing a difficult time, a time of change and uncertainty.  It’s OK to feel what you’re feeling without judging yourself and feeling guilty over it.
  1. As outraged as some people may be, take a deep breath and use your rational thinking:  your views are different than other people’s, and this difference is not a permission to treat others with disrespect.  Learn to agree to disagree in a calm and logical manner, without name-calling or insulting the other side.
  1.  As hard as it may be, turn off the news, turn off the electronics and try to turn off your own thoughts.  Your mind may be racing with all kinds of information, your emotions may be raw and all over the place, but take a deep breath, go for a walk, drink a cup of tea or a glass of Gatorade, and relax.  You are still living in the best country on earth, and it’s a beautiful thing, no  matter who is in power.
  1.  Basic good lifestyle choices still apply:  don’t forget to drink your fluids, eat your high-sodium diet with small frequent meals, get plenty of sleep and exercise per your routine.  It’s easy to get engulfed in the political process, but don’t let it engulf you and your health.
  1. Express yourself.  If you feel the need to share your thoughts and opinions on Facebook, Instagram or Twitter, do it.  We have free speech, something that many other countries don’t, and you are free to post your views on the election in a non-insulting and non-demeaning manner.  Expressing yourself on social media or in conversation with friends or family can feel like getting a heavy load off your chest.  Just make sure that the people you’re talking to are actually willing to listen, without judgement or criticism of you for your opinions.
  1. Watch yourself arguing and debating.  It’s OK to engage in a healthy debate as it stimulates your logical thinking, reading and writing and gives you a good exercise for your left side of the brain.  However, too much arguing can lead to exhaustion, frustration, depletion and low mood.  Be your own supervisor and remove yourself from the argument or situation that is becoming counter-productive to your physical and mental health.
  1.  This country was built on principles and rights that were fought for by the movers and the shakers. Give yourself permission to be productive despite the chronic illness.  Doing something positive will give you a sense of purpose and will serve as a good distraction from the negative thoughts and feelings about this election.  If you have the energy, volunteer at school or at a local hospital, help your neighbor, or reach out to a friend who might need your help.  If you have no energy and running on empty yourself, you can still be productive by treating yourself and others with kindness.  We don’t need to use politicians as our role models to practice basic human decency.  In fact, some politicians can learn from us how to treat each other with kindness and respect.
  1.  Keep your routine.  If you have work, school or doctor’s appointments, keep your plans.  Politics aside, you have responsibilities and work to do, and that won’t stop no matter who got elected.
  1. Find some humor in the political circus that we’ve been witnessing and keep everything in perspective. Politicians will be just fine, whether they lose or win, but you are still living your life and managing a chronic illness.
  1.  Most importantly, if you feel that your physical or mental health declined, and you can’t get a handle on it, contact your doctor.  Remember that stress can be a trigger for worsening of chronic illness.  Healthy people can become fatigued, anxious and stressed as a result of this election, but you have a chronic illness, and that makes you more vulnerable since your reserves are limited.  With that added factor, take extra good care of yourself and remember:  you are in charge of your life, no matter who is in charge of your government.


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10 Salty Fact for POTS Patients

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Jill Brook

by Jill Brook, M.A.
Nutritionist and POTS patient

Like many POTS patients, I eat loads of salt. The 2015 Heart Rhythm Society Expert Consensus Statement recommends 10-12 grams per day because some POTSy bodies don’t properly retain it. I consider this tasty therapy to be the only perk of having POTS. Given that we eat so darn much of this stuff, it makes sense to develop an appreciation for the finer points of salt.

Here are some helpful tips about the only rock we eat:

  1. Salt and sodium are not exactly the same thing. Salt is technically sodium chloride—NaCl—and it consists of about 40% sodium and 60% chloride. So if your doctor tells you to consume 10,000mg salt per day, that is only 3876mg of sodium.
  1. Table salt is heat processed and contains at least 97.5% salt by law, plus anti-clumping agents such as sodium silicoaluminate, sodium thiosulfate or others. Natural salts such as Himalayan, Real Salt, or sea salt are not heat processed and do not have additives.
  1. Sea salt is evaporated sea water, and has trace amounts of numerous minerals and elements. One drawback, however, is that as our oceans get increasisaltpilesngly polluted, so does our sea salt.
  1. Real Salt is a brand from Utah’s salt flats which contains trace minerals without the recent ocean pollution. Himalayan salt is another natural option. These salt sources are left from ancient sea beds, from when the ocean covered different parts of the earth.
  1. Dead Sea salt boasts many health claims, but should not be consumed because it contains too much bromide, which can be toxic.
  1. Iodized salt can be used to get the nutrient iodine if you don’t get enough from other sources, such as seafood, meat, dairy, sea vegetables or cranberries. The US government had iodine added to table salt beginning in 1922 to address an epidemic of goiters from iodine deficiency.
  1. Kosher salt is not typically kosher. It got that name because its large crystals made it good for removing blood when processing kosher meat. Larger salt crystals can have less sodium per teaspoon, so check the nutrition label.
  1. In most people, calcium and potassium are excreted along with sodium. If too much sodium is consumed without enough of these other minerals, the body will leach them from its own tissues, reducing bone density and muscle mass. While I haven’t found research on whether this holds for POTS patients, this possibility motivates me to eat nutrient-rich foods whenever possible.
  1. Eating very salty foods can trigger cravings for sweets…which trigger cravings for more salt…and the vicious cycle is called “tastebud ping pong.” If it’s making you a slave to your cravings, consider using salt pills to replace salty foods.
  1. Tastebuds adapt. After a few weeks your high-salt diet will taste normal. This could have embarrassing consequences if you make Thanksgiving dinner to your own taste preference, not realizing that your dinner guests are practically gagging. (OK, I know what you’re thinking: “like we’d ever have the energy to make Thanksgiving dinner.” We can hope!)

saltrockSome health authorities such as the Berkeley Wellness Letter state that table salt and natural salt are virtually the same nutritionally, and that any differences from heat processing, anti-caking agents, trace minerals or elements are negligible. While I believe them, I personally choose to use a combination of Real Salt, Himalayan salt and other natural salts, knowing that I consume 2-3 times the quantity of average Americans and those extra trace nutrients or additives might actually add up over time.

Finally, if you’re a real connoisseur, you may want to learn about salt’s dramatic history by reading Salt: A World History, by Mark Kurlansky. You won’t be bored: Salt has altered the outcome of wars, built and destroyed empires, and shaped how humankind populated the planet. Helping POTSies feel better is just one of its many colorful accomplishments.


Sheldon RS, Grubb, BP, Olshansky B, Shen W, Calkins H, Brignole M, Raj SR, Krahn AD, Morillo CA, Stewart JM, Sutton R, Sandroni P, Friday KJ, Tessariol Hachul D, Cohen MI, Lau DH, Mayuga KA, Moak JP, Sandhu RK, Kanjwal K.  2015 Heart Rhythm Society Expert Consensus Statement on the Diagnosis and Treatment of Postural Tachycardia Syndrome, Inappropriate Sinus Tachycardia, and Vasovagal Syncope.  Hearth Rhythm, Vol12, No 6, June 2015.  http://www.hrsonline.org/Policy-Payment/Clinical-Guidelines-Documents/2015-HRS-Document-on-POTS-IST-VVS

The Scoop on Salt. The Berkeley Wellness Letter website. Accessed Oct. 25, 2016 from http://www.berkeleywellness.com/healthy-eating/nutrition/slideshow/scoop-salt

Raj S. Postural Orthostatic Tachycardia Syndrome (POTS). Circulation 2013; 127: 23.  http://circ.ahajournals.org/content/127/23/2336.full

Heaney RP. Role of Dietary Sodium in Osteoporosis, J Am Coll Nutr. 2006; 25(3 Suppl): 271S-276S. https://www.ncbi.nlm.nih.gov/pubmed/16772639

O’Mahony M. Salt taste adaptation: The psychophysical effects of adapting solutions and residual stimuli from prior tastings on the taste of sodium chloride, Perception 1979; 8(4): 441-76. https://www.ncbi.nlm.nih.gov/pubmed/503775

Kurlansky M. Salt: A World History. New York, NY: Penguin Books; 2003.

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Why should you pay out-of-pocket for your healthcare?

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As many of you know, we have stopped taking all medical insurance, leaving some patients concerned and frustrated that they can no longer use their insurance card at our clinic. Below we outline why you should not hesitate to pay out-of-pocket for your medical care if you need an experienced specialist on your healthcare team. We also review why our phone and video consults work.

Your doctors who take insurance are not experts in dysautonomia.
You go from one doctor to the next, your primary care physician, cardiologist, neurologist, rheumatologist and perhaps others, and you are still sick and not getting better. At most, your doctor has heard of POTS and maybe even has a few other patients like you. Or your doctor has never heard of POTS until you showed him a few articles on the subject. Maybe they believe that you are really sick or maybe they think that POTS is a wastebasket diagnosis or a new fad, like gluten-free diet, because they’ve never heard of POTS when they went to medical school. Or perhaps your doctor thinks that you are anxious and stressed and just need to relax, exercise and go back to school or work. Maybe your doctor even prescribed anti-depressants and anti-anxiety medications for you. You know that something is physically wrong with you, but you give the doctor’s plan a try anyway. You go back to work or school, push yourself through the fatigue and pain, only to end up back at home, sicker than ever. At this point, out of desperation, you take the antidepressants or anti-anxiety medications as prescribed, but you are not getting better or you feel worse from the different side effects these medications can cause. Do you go back to your doctor or do you find a specialist with experience and expertise in your disorder who can get you on the path to recovery?

“I don’t have the extra money to spend on a doctor’s visit.”
We have heard from some of our patients that they’re in financial hardship. We understand the economical impact of a chronic illness. Our rates are very affordable, and are much lower than what other fee-for-services providers charge. Furthermore, we do offer financial assistance to patients in need. Clearly, it is worth investing financially in your health: it’s the most important asset you’ve got, with a return for your dollar far greater than paying for your iphone, ipad and that Starbucks Mocha Frappuccino you can’t live without.

“Why paying out-of-pocket for specialty consults is better than seeing my health insurance providers?”
Your health is your most important asset. When you get sick with an illness that doesn’t resolve quickly, the last thing you want is to be stuck with doctors who don’t understand your condition. By going back to the same doctors, you get stuck in a pattern of illness, frustration, misdiagnosis and wrong treatment. Not only you waste your time, but you also waste your money by paying copays, co-insurance charges and payment for the wrong medication. You also spent your precious energy at the doctor’s waiting room, and if you can’t drive, your family member or friend needs to take time off from work to take you to the doctor. By going to the doctors who take health insurance, but are not specialists in your condition, you are not saving – you are overspending financially, physically and emotionally. This is why it is important to work with a specialist in the field.

“What services does my payment for a consult include?”
When you see your doctor as part of the insurance network, you know that the duration of the visit would be anywhere between a few minutes to 30 min at most. That short interaction with your doctor allows your doctor to see as many as 30 patients per day. While the volume that a doctor sees must increase to counteract the low reimbursement fees for your visit, the quality of the visit inevitably declines. Thus, even a specialist can no longer provide a comprehensive review and treatment plan for a complex patient. The system is designed to deal with the most common and known medical conditions, not with dysautonomia or other complex disorders. At Dysautonomia Clinic, you get a full hour of doctor-patient interaction and a detailed evaluation by Dr. Blitshteyn. You can prepare questions, which will always be discussed during your consult. In order to prepare for a consult with you, Dr. Blitshteyn reviews some of your records and important diagnostic tests, a service free of charge to you. Also free of charge is a detailed consultation report that outlines your history, your diagnostic tests, Dr. Bltishteyn’s impression of your health problems and recommendations for further diagnostic test and treatment options. The report is usually e-mailed to you within 2-3 days after your consult. Additionally, you can e-mail to us with a short follow-up question, which is also free of charge. We ask that you discuss your response to treatment and/or your test result and other questions that you may have during your follow-up consult.

“What if I have an emergency? Can I get in touch with Dr. Blitshteyn?”
First, if you are feeling very ill and think it’s an emergency, please call an ambulance or to go the nearest emergency room for care. Second, Dr. Blitshteyn is available on an emergent and urgent basis. If you are hospitalized and doctors have no idea how to treat your autonomic disorder, you and/or you doctor can schedule a consult with Dr. Blitshteyn on the same or next day. Over the years, we have had quite a few patients with POTS or syncope contact us from different locations, including overseas, to seek guidance for treatment in the ER, hospital unit, intensive care unit or a maternity ward.

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Welcome to the Dysautonomia Clinic blog!

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Welcome to the Dysautonomia Clinic Blog – the only blog on dysautonomia written by a physician and researcher specializing in dysautonomia. In this blog, I hope to provide valuable information to you about various autonomic disorders, diagnostic considerations, therapeutic approaches and the latest research updates. I will also have other physicians and researchers contribute to our blog. If you have any questions, ideas or need my help for your medical care, please e-mail to our clinic admin@amherstneurology.com.

I will start the blog with commonly asked questions about our clinic and how we operate.

I hope you find this information useful.

Dr. Blitshteyn

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