Summary of what I know and where to get more info…
First! What are POTS & MCAS?
Special Medical Journal Issue all about POTS!
Send Autonomic Neuroscience’s special issue on POTS to your doctor, and don’t forget to download them all for yourself too! 19 open access (free) journal articles by leading experts in the field, summarizing the latest understanding of POTS to date (December 2018)! This is a phenomenal resource.
A few of my current favorites journal articles to get you started…
- Postural tachycardia syndrome – Diagnosis, physiology, and prognosis | Authors: Amy Arnold, Jessica Ng & Satish Raj
- Postural orthostatic tachycardia syndrome and the potential role of mast cell activation | Authors: Taylor Doherty & Andrew White
- Postural Tachycardia Syndrome: Beyond Orthostatic Intolerance | Authors: Emily Garland & Satish Raj
Physician Education Video:
Diagnosis and management of POTS by Dr. Satish Raj of Vanderbilt University and University of Calgary! Send this along to interested doctors, and check out the rest of Dysautonomia International’s video channel!
How to Get a Diagnosis
Get a decent doctor to test and treat you. Dysautonomia International’s Find a Doctor Directory is a start. Larger and more detailed doctor lists and referrals are also found on support groups. They are invaluable. I suggest checking out support groups like California POTSies (for the California area), find a listing of POTS support groups by area here, and My Crazy Life with Mast Cell Disorder.
Try a simple orthostatics test. If you suspect POTS, you can take 10 minutes to do a “poor man’s tilt table test” by taking your orthostatics at home or at any doctor’s office. You just need to be able to take your blood pressure and measure your heart rate. Lay down for a few minutes, then take your heart rate and blood pressure. Next, stand up and measure your heart rate and blood pressure after 2, 5 and 10 minutes. Take your numbers and see if you meet the criteria for POTS.
Get tested for MCAS. A couple of overviews of the testing for MCAS in a POTS patient written by my fantastic doctor: Tale of Two Syndromes by Dr. Andrew White and his 2018 journal article for more details. If you can’t get to a specialist, you can share this with your general doctor. He clearly defines testing and treatment methods. Know that negative test results doesn’t necessarily rule out a mast cell disorder, because current lab testing exists for only very small portion of mediators released by mast cells. A doctor may still diagnose you if your symptoms are consistent with the syndrome and you benefit from treatment targeting mast cells.
Navigating Healthcare in the USA: You have the right to fire a doctor at the hospital, most therapists can do online web sessions, airlines offer free flights to get to distant medical care. So many helpful things to know…
Underlying and Coexisting Conditions
It’s also very important your doctors are looking into other potential root causes and any other comorbid conditions including the following. Please know this is by no means a complete list. Treating underlying conditions can improve and in some cases even resolve POTS symptoms. Other coexisting conditions like osteoporosis and vitamin deficiencies may also be caught and addressed earlier.
Infections: Lyme Disease, Epstein Barr Virus, Mononucleosis, Hepatitis C
Connective Tissue Disorder: Ehler’s Danlos Syndrome
Vitamin Deficiencies & Impairments: Anemia, Hypovitaminosis D (low vitamin D), MTHFR gene mutations (very common)
Bone Disease: Osteoporosis or Osteopenia (VERY common in mast cell patients)
Structural Defect: Chiari Malformation
Other: Chronic Fatigue Syndrome/ME, Fibromyalgia, Cerebrospinal Fluid Leak
Autoimmune Conditions: Sjogren’s Syndrome, Celiac Disease or Sensitivity, Hashimoto’s Disease, Lupus, Multiple Sclerosis
Rare Conditions: Amyloidosis, Antiphospholipid/Hughes Syndrome, Autoimmune Autonomic Ganglionopathy, Cushing’s Syndrome, Paraneoplastic Syndrome, Sarcoidosis
Treatment options I’ve heard of, many of which I’ve tried myself. Treating mast cell issues (when present) often improves POTS symptoms. If a particular drug doesn’t help right now, don’t write it off indefinitely because our body chemistries change over time. Some drugs may not help now, but may help tremendously later down the road or after a relapse.
Many POTS patients are benefiting from mast cell targeted drugs even if they aren’t testing positive for a mast cell disorder. Your doctor may have you do a trial of drugs including anti-histamines and sodium cromolyn.
Antihistamines | For blocking mast cell mediators called histamines. A combination of H1 & H2 antihistamines taken twice daily are a common first line of defense to try. For a while I took 10mg Zyrtec and 150mg Zantac, each twice a day. A few years ago these didn’t seem to help, but after my latest relapse these let me eat without my blood pressure bottoming out.
H1 Blockers- Zyrtec/Cetirizine, Claritin/Loratadine, Allegra/Fexofenadine
H2 Blockers- Zantac/Ranitidine, Pepcid AC/Famotidine, Tagamet/Cimetidine, Axid/Nizatadine
Benadryl/Diphenhydramine: There are pills and a dye free option, liquids, chewables. I’m prescribed to take up 4 childrens’ chewables, every 4 hours, 4 times a day as needed. That’s 50 mg every 4 hours. These used to be able to stop an attack in its tracks for me, and gave me a huge sense of safety. A powerful drug for mast cell patients. It can be given intravenously at an ER too, which has been helpful as a drip- be very cautious of pushing quickly because heart rate can spike fiercely (I have unfortunately experienced this).
NSAID | For binding to mast cell mediators called prostaglandins.
Aspirin: Generally used with caution in mast cell patients. Prostaglandins are released especially when eating and digesting, and fluctuate greatly with hormone changes during a woman’s cycle. They generally promote inflammation. Daily dosing of aspirin readily binds to these prostaglandins and may show some improvement in symptoms. I tried the prescribed baby aspirin a day, didn’t see an improvement and only experienced some ear ringing (tinnitus), so it was discontinued.
Antileukotrienes | For blocking mast cell mediators called leukotrienes. One of my only tests to come back abnormal was leukotriene LTE4, and was the highest they had seen to date. (Interestingly, I don’t have asthma or any airway issues.) Given my off the chart leukotriene levels, there was hope that antileukotrienes would show a big improvement, but unfortunately there wasn’t a discernible change.
Singulair/Montelukast: A common prescription, and makes a huge difference for some.
Mast Cell Stabilizers
Cromolyn Oral: Taken as a drink with water usually 4 times a day before meals and bedtime. Targets the GI tract. Made a huge difference for me, walking became so much easier. Many need to ramp up on this drug slowly to reduce side effects, but I didn’t. I was put straight-away on 2 ampules/4x/day without complication. My doctor also tried me on a higher dose of 3 ampules/4x/day, which may have helped. Some POTS patients who aren’t testing positive for mast cell issues are benefitting from this drug. A great overview that mentions this: Postural orthostatic tachycardia syndrome and the potential role of mast cell activation by Doherty and White.
Cromolyn Inhalation: Taken with a nebulizer multiple times a day. Using a nebulizer takes time, but if it works, it’s well worth it.
Cromolyn Nasal Spray/Nasalcrom: Over-the-counter nasal spray that targets the nasal passages to prevent symptoms of allergic rhinitis.
Ketotifen Oral: An alternative to cromolyn oral, and also has an anti-histamine effect. Many get this at compounding pharmacies.
Ketotifen Eye Drops/Zaditor: Over-the-counter eye drops that treat itchy, irritated eyes. Helpful for my contact lens sensitivity on rare occasions I wear them. Ophthalmologist has me put drops in 10 minutes prior to using contacts, and then use lubricating eye drops after contacts are in because the ketotifen can have a drying affect on your eye that may induce irritation.
Quercetin: A flavonoid, which is a plant pigment giving fruits, vegetables and flowers their color. This particular flavonoid can provide a mast cell stabilizing effect. Many seem to try Neuroprotek first, which is formulated to be highly absorbable. If you see an improvement, but are budget sensitive, you may want to next try a cheaper alternative like those by Natural Factors or AOR. General advice is usually avoid citrus derived quercetin, and avoid bromelain. I personally didn’t see an improvement with quercetin, but it’s probably worth another try since it’s been a couple years.
Increase Blood Pressure
Salt & Hydration: Adding massive amounts of salt to your diet, and when that’s not feasible supplement! Use the salt and sodium calculator to help determine the best way for you to increase your salt intake, along with a list of popular electrolyte drinks and supplements. Doctors recommend pushing for 2-3 liters a day to alleviate POTS symptoms.
Florinef: Increases salt retention in order to increase blood volume. Those with POTS seem to have much lower blood volumes than healthy people. Has the benefit of reducing the constant urination many of us deal with, partly due to the massive fluid intake we strive for.
Midodrine: Stimulates nerve endings to constrict blood vessels throughout the entire body, thereby increasing blood pressure. Can be useful to manage scary drops in blood pressure from standing and even eating.
Northera/Droxidopa: Another newer drug that raises blood pressure. The exact way it works isn’t completely understood, but the drug does get converted by your body into norepinephrine, which is known to help regulate blood pressure. This is another drug that seems hit or miss- either patients do great or they seem to react pretty badly. Also, being a new drug it can be a process getting it approved by insurance, but the pharmaceutical company offers support.
Decrease Blood Pressure | Some POTS patients may actually deal with chronic high blood pressure issues.
Clonidine: Acts as an alpha-agnoist, meaning it stimulates particular receptors in your brain called alpha-adrenoreceptors, which results in your blood vessels relaxing. This may also help reduce heart rate.
Lower Heart Rate
Propranolol: An old and well established drug that traditionally treats hypertension and other well known heart conditions. Commonly used in POTS patients. It can effectively reduce heart rate, but can also cause some unneeded hypotension, so very small “baby” doses such as 5mg can be useful for POTS patients.
Metoprolol: Another common beta blocker. Many POTS patients seem to feel better on a particular beta blocker. Many prefer propranalol to metoprolol or vice versa.
Ivabridine/Corlanor: A much newer drug, recently approved in the USA. If a patient isn’t tolerating traditional beta blockers well, this drug reduces heart rate with the benefit of not reducing blood pressure. A recent study found that “78% of POTS patients responded well to ivabradine with no major side effects.” Anecdotally, some patients haven’t responded well, but those that do seem to love it. Get a Copay Card here.
Mestinon/Pyridostigmine: Better known for helping treat muscle disorders like Myasthenia Gravis, but has been found to sometimes help with POTS symptoms like fatigue and dizziness. Chemically, mestinon permits freer transmission of nerve impulses from motor nerves to muscles.
Valacyclovir: Especially for those patients who came down with POTS symptoms abruptly after a viral illness, antivirals have the potential to greatly improve symptoms. It’s a newer off label treatment for POTS. I have met at least one patient who says this drug has changed her life.
SNRIs (Serotonin–Norepinephrine Reuptake Inhibitor)
SNRI’s are sometimes thought to be additionally helpful for POTS patients, however others disagree. Vanderbilt suggests that POTS patients may have issues transporting norepinephrine already, so SNRIs, which block that neurotransmitter even more can make patients feel physically worse. I personally didn’t find any noticeable improvement on SNRIs, and paid a huge toll in symptoms withdrawing from them.
Lexapro/Escitalopram: Needs careful consistent dosing and can have difficult withdrawals. For me, not worth the effort of trying.
Effexor/Venlafaxine: Notoriously difficult to discontinue, but can be worth the effort if it’s effective for the patient. For me, it was not worth the struggle and ER visits.
Cymbalta/Duloxetine: An option for those with nerve pain too. Some do really well, while others really poorly.
SSRIs (Selective Serotonin Reuptake Inhibitor)
Zoloft/Sertraline: Supposed to be great for anxiety. Many with POTS do well, but was horrible for me personally.
Xanax: This is a great emergency drug, where the panic and terror of an attack is an overwhelming and unnecessary burden. A tiny dose is often all that’s needed to take the edge off in emergencies. It also has a slight mast cell stabilizing affect that may additionally help the attack itself to some degree.
Gabapentin: This seems to be such a unique medication in that it treats things from nerve pain, to anxiety to restless leg syndrome to seizures. I would describe this as almost my miracle drug for my mental health. It isn’t habit forming, has no withdrawals at my low dosages and can calm me like my tiny doses of xanax within 30 minutes. Anything over 200 mg at a time will make me feel dizzy. Other POTS patients are on much higher doses, some for nerve pain or migraines. Some of us love it, while others have had very bad reactions. As with most of these drugs- caution!
GABA is a neurotransmitter. Research is elucidating that GABA is key for suppressing ruminating and unwanted thoughts. It’s been found that those with the highest levels of GABA in the brain’s hippocampus are best at suppressing unwanted thoughts or memories, the hallmark struggle for those with PTSD, depression and anxiety. This may shift the approach to treating these disorders. Read the recent study published in Nature: Hippocampal GABA Enables Inhibitory Control Over Unwanted Thoughts
POTS and periods can surely make some hellish times. Migraines, fatigue, nausea, rumbling bowels. Getting on a pill that shortens the period, or skips it altogether can be a drastic improvement. Even a birth control option you like can be improved by skipping the inactive week and instead having a period closer to every 3 months. Generally Yaz and Yasmin are avoided since they have a diuretic effect that can exacerbate already low blood pressure.
Depo Provera: A shot. Some weight gain can happen, but many love this option.
Nuva Ring: Many are raving about this one.
Lo Loestrin: A very low dose birth control pill is very popular among POTS patients. (I personally faired pretty poorly with lots of acne and migraines.)
Since steroids have many bad side effects, this drug is more in the last bin of options for relapsing patients when other options aren’t working and can be a great help. The general strategy with these is to use shorter term. Was close to needing them during my latest relapse, but a renewed trial combo of midodrine, zyrtec and zantac rescued me.
Vitamins & Supplements:
These aren’t going to cure you, like Tom Cruise might have you believe, however many POTS and MCAS patients have deficiencies probably due to poor absorbing and the wacky chemical signaling happening within us and getting them corrected can improve your symptoms. My doctor says that a very common issue among all of the hundreds of POTS patients they care for is issues relating to the MTHFR gene mutation, that impairs the ability to process certain B vitamins and folic acid. Some vitamins levels to test and look into are magnesium, calcium, vitamin D, B12, B6, and folate. The best informational site for MTHFR my doctors can seem to find. It can be very easy to supplement many vitamins, particularly B vitamins, so work with your doctor. I’ve gotten high levels of B12, and B6 (only 50mg/day), and folate from supplementing even with doctor supervision, but they do a great job at monitoring and adjusting my dosing as needed. (Be especially cautious, because excess B6 can cause peripheral neuropathy- damage to nerve endings.)
Vitamin C: This vitamin promotes degradation of histamine and also helps decrease histamine formation to a degree (by inhibiting histidine decarboxylase). Some doctors may prescribe high doses of vitamin C, while other mast cell specialists are promoting the safer recommended daily value to avoid unwanted side effects.
DAO Supplements: Diamine Oxidase (DAO- aka histaminase) is an enzyme found in high concentrations in our intestinal mucosa that helps us process and break down histamine. Unfortunately it sounds like many mast cell patients don’t do well with DAO supplementation and react poorly. The supplements currently source from either pig (porcine) kidneys or peas. However, a more natural method some try is adding pea seedlings, which are especially known for high levels of histaminase, into their diet. Seedlings are best blended so the DAO is physically liberated from the cellular structures, and not cooked or heated to avoid denaturing/destroying the DAO protein. Supplemented DAO is not absorbed by your body, but instead acts locally on the contents within your GI tract.
Other Rescue & Emergency Meds
Benedryl/Diphenhydramine: Described above.
Lomitil: Diarrhea happens to everyone, but much more often to those of us with POTS and MCAS. When I’m having an attack, even if I’m by some facilities, I’d rather avoid the ordeal altogether especially when I can barely walk or sit up, and most times this tiny little pill delivers.
Epipen: The injectable epinephrine for allergic reactions. Haven’t had to use this yet, but I’ve been close. Know how and when to use it. If you have mast cell activation and don’t have real allergies like me, you may want to have one if you’ve ever had an attack so bad that you felt like you might pass out even laying down. I know to use mine the next time I’m in that situation, and my family and friends know to stab me if I go unconscious. Who needs cable TV when you have our lives?
Lifestyle & Other Options
Gear Up: Get tools that help you keep living your life. Cooling vests & scarves, salt pigs, charcoal bags, Vanicream, Vogmasks, portable thermostats, mobility items! No sponsored products (nothing here is of course). This is the wishlist I wish I had when I first got sick. Many of these are just generally thoughtful good gift ideas for a chronically ill person.
Exercise: You can read about everything I learned about exercise, including the deal on The Levine Protocol. TLDR: Exercise is good for you, do it daily as much as you can without over-doing it. Start small and ramp up. Some insurance will cover rehabilitation programs, that some POTS patients can participate in and usually find themselves among much older patients recovering from things like heart failure. It can probably be especially helpful if you’d like to be monitored and structured, but most people seem to do what they can on their own or with a local physical therapist or trainer. There’s no panacea, it’s about what works for you.
Sleep Hygiene: Sleep issues are very common in POTS patients. Quality of sleep tends to be poorer, insomnia is common, sleep apnea. There’s a phrase I often hear that fits the sensation I often feel perfectly- “Tired, but wired.” Like with everything else, we have to try harder for the same (or less) effect. Limit blue light from light bulbs and other electronics for several hours before bed, meditation before bed, consistent bed and waking times as much as possible, etc.
Raise head of bed: Some recommend raising the head of your bed by 7-8 inches to help condition your heart. I’ve heard of some creative ways to do this. I tried raising mine a few with just a stack of magazines, figuring any bit should help.
Compression: Doctors love pushing this option because it’s not a drug. I’m surprised it didn’t help me more, but they’re so difficult to squeeze into and not very comfortable. I’ll only compress myself into a pair of compression hose when I’m going up in altitude either to visit the mountains or for a flight. Compression hose for your legs that go all the way up to your waist are best, but thigh highs can be helpful too. Compression sleeves can help. The idea is that excessive blood is being squeezed out of our limbs, where it’s pooling. This might not be a great option if you have painful neuropathy issues or mast cell disease that leaves you triggered from friction and pressure. In that case, you might only tolerate garments rated at less pressure and maybe for short periods of time… or maybe not at all.
Great information about compression stockings at Dysautonomia International’s Blog: The Skinny on Compression Stockings
One of my favorite brands for compression: RejuvaHealth Fashionable Compression Legwear
Transcutaneous Electrical Nerve Stimulation (TENS): Vagus nerve stimulation is a hot topic of research for all sorts of inflammatory disorders like rheumatoid arthritis. In fact, I’ve heard about European clinical trials happening for POTS. My doctor heard from one patient in a trial who said it vastly improved her within a matter of weeks. With the approval of my doctor, I now have a TENS unit of my own with ear clips. This could be an exciting treatment for patients, because it’s drug-free. This method could even be treating the problem closer to the source of the issue, but research is still ongoing. Watch this talk “Vagus Nerve Stimulation in POTS” by Dr Andre Deidrich of Vanderbilt. Exciting update: Vanderbilt is continuing research to explore whether VNS can reduce autoantibodies found in POTS patients!
Acupuncture: Research seems to indicate that acupuncture may also act to stimulate the vagus nerve. Many patients swear by it, and if insurance companies are paying up, then I say that’s a strong indicator that it can be helpful for a variety of people and ailments.
Meditation: For both body and mind. It may sound like a giant hippy waste of time, but it can be transformative for your brain. Studies indicate that it activates the vagus nerve to some degree, and daily practice physically alters some brain structure making it easier to cope with stress. Compelling.
Body Scan Meditation. The author of Full Catastrophe Living, which you should check out on my Recommended Reading List, offers one of my favorite guided meditations that can calm me to a degree even when I’m nearing panic:
Massage: Massage and touch physically flood your body with feel good chemicals like oxytocin, which can be a wonderful respite from the daily existence of living with POTS. Massage helps with circulation too, which is typically poor for us. Anything that promotes relaxation is also a great thing.
Minimizing Pain: Pain is known to make POTS symptoms worse, so anything that can be done to reduce or eliminate pain can help. I developed back pain, presumably from my new more sedentary lifestyle, so I got a physical therapist who put together a plan and met with me over the course of several weeks, and now it’s cured! The one thing I’ve been able to cure in all of this, and I do relish it.
Diet: This is much more than generally eating “healthy.” After trying an elimination diet, like the low histamine diet, patients may find they feel much better. And once foods are reintroduced back into the diet, it can be clear what might be setting you back. Interestingly, even if testing comes back negative for gluten and dairy sensitivities, some patients feel much better eliminating or cutting down gluten or dairy from their diet. A person may also find they are sensitive to salicylates, which can be easily suspect if generally eating fruits and vegetables has you feeling much worse.
Low Histamine Diet: Start here at the main Low Histamine Diet page, where you can find recipes, a starter grocery list and a pithy summary list of what foods you can focus on eating. This is an elimination diet that I never would’ve taken seriously if it wasn’t prescribed by my doctor. The goal is to minimize the amount of histamine getting into your system by means of your food. Many people with mast cell activation syndrome already have a hefty amount of histamine in their system thanks to their mast cells spilling mediators improperly, and the last thing a POTS patient needs is the vasodilation it causes. What you’ll hopefully end up with is your own personalized low-trigger diet.
Assess Your Diet & Fill in Gaps: The best tool I’ve found so far is Cronometer. Plug in your gender, weight and age, then your average daily food intake and find potential nutritional gaps. Especially important if you’re on a restrictive diet, or simply not eating much. Even though I thought I was eating a pretty balanced diet, I found that I could probably use more omega-3, iron and potassium. So, I’m adding in more raisins, seeds and fish. I’m striving to provide my body with all the building blocks it needs to be as healthy as possible. Nutritional deficiencies will only hold me back. Note that the default values are only broad general estimates of dietary values that don’t account for your specific health issues, so ask your doctor to help dial in your specific nutrition needs. I suggest printing out the screen that reflects a standard day of food for you, along with the correlating nutrition summary and see what your doctor advises.
Intermittent Fasting: You may be fasting already due to symptoms like nausea, but many patients feel better eating less often or doing what’s referred to as time restricted feeding (TRF), where you only eat within a 4-6 hour window each day. The chemistry and biology is complicated, so further reading is below. Studies are showing that fasting can lessen symptoms in patients with rheumatoid arthritis, and animal studies suggest that the pathogenesis other inflammatory disorders including multiple sclerosis, lupus and type 1 diabetes may also be counteracted by intermittent energy restriction (IER), which involves a regime restricting calories to around 500 calories/day a couple days a week. Talk to your doctor and find what might work for you. For a while I was doing great skipping breakfast, and instead eating 4-5 hours after waking, and eating whenever I wanted later in the day. Talk to your doctor about what might work for you. For a lot of us it’s hard enough to take in adequate calories and keep up blood sugar, so you’ll want to make sure you’re not about to do more harm than good. Please read: Meal Frequency and Timing in Health and Disease & a summary of Intermittent Fasting. Careful too, if you’re prone to migraines, skipping breakfast and fasting can be potentially triggering.
Reduce Folic Acid: If you have a MTHFR gene mutation, then you have an impaired ability process folic acid and folate and other vitamins… often referred to as methylation. Approximately 40% of the general population has a form of this gene mutation, and now appears to be highly correlated with POTS (for reasons not yet understood). The more important point is that a higher intake of folic acid (from vitamins and fortified foods) can leave you with a surplus circulating in your blood stream, and further inhibits your processing of folate. Replace any multivitamins with folic acid with ones without it. Minimize folic acid fortified foods, which are primarily grain products and focus on getting in folate rich foods like leafy greens and vegetables. Also talk to your doctor about supplementing with methylfolate, the bioavailable form of folate, and other bioavailable forms of B-vitamins that don’t need the help of the MTHFR enzyme at all. It’s easy to get too much of these vitamins through supplementing and to see some side effects (notably B6 can cause neuropathy), so a doctor should advise. One of the easiest ways to get tested for MTHFR is through the popular 23andme DNA testing service (or a similar service) and run the raw data they provide through another platform like Genetic Genie or LiveWello.
Reduce Arsenic: Learn how to select and prepare rice differently to reduce your arsenic intake: All That Arsenic in Rice. TLDR: Washing rice doesn’t help, but cooking in excess water does. Rice contains much more arsenic than other grains. Quinoa and amaranth have much lower arsenic levels, making them great alternatives to rice. This also relates to epigentics, discussed below.
… Want to learn from others’ experience and get more ideas? Ask fellow patients on Facebook groups like my favorites: California POTSies, My Crazy Life with Mast Cell Disorder, and Mast Cell Activation Disorders Forum.
Environmental Considerations & Improvements
Creating Margin. Even if you’re not acutely reacting to triggers, chemicals in your environment may be “adding to your inflammation or histamine bucket” as it’s often described. In other words, your body may be responding and reacting imperceptibly, all the while leaving you less margin for daily living and other exposures. Meaning you’ll more easily and quickly reach a tipping point into feeling (more) terrible or even having a full on attack. Bottom line is the less the body has to process and/or react to, the better.
Identifying Other Lurking Triggers. Foams, carpet and mold- oh my!!! Did you get worse and haven’t been able to identify a cause? If there’s a smell, it might be triggering you. Triggers can sometimes be tricky to identify and impossible to prove, especially if you don’t react acutely from exposure. Reflecting back, years ago before diagnosis, my vague yet still manageable symptoms got significantly worse 3 separate times after getting brand new outgassing memory foam toppers and mattresses. My health took a landslide turn to rock bottom, after living in a brand-new outgassing builder home with that “brand new” home smell after a few months. I kept having mysterious attacks that kept landing me in the ER until they finally admitted me to a hospital where it took them a week to finally determine POTS as a diagnosis. After replacing our flooring with all natural Marmoleum, my health improved significantly. Carpet is known to be a common mast cell trigger for those with MCAS. A few years later I had a horrible relapse that passed my previous rock bottom after living in a beautiful 1930’s home for a month that was growing mold within the walls… we hired a mold inspector who found giant mushrooms growing through the wall behind the refrigerator! The strange “old house” smell should have been our warning before signing the lease. Note that some VOC’s and gases don’t have a smell and can still be triggering. My latest relapse involved brand new respiratory triggers, and was likely caused by the NO2 (nitrogen dioxide) from our gas burning fireplace running for hours! I never seemed to react acutely, though in retrospect I definitely did in certain areas where the gas streamlines must’ve been. It only became obvious when my stepdad reacted instantly at a Christmas visit shedding light on the gas exposure. It can be hard to know if it’s just your body being its usual crazy self or if it’s in fact an external trigger. If you’re having seasonal relapses, consider what could be changing for you. Check out any indoor gas (or wood) burning appliances like fireplaces and furnaces. New man-made items should be especially scrutinized- new appliances, fake Christmas trees, new couch or furniture. Reflect and see if you can identify and remove these covert triggers.
My doctor explains that for those with autoimmune conditions, mold exposure is like dousing an open flame with gasoline.
Epigentics. Another huge factor to consider is epigenetics, the altering of gene expression or function by environmental chemicals. Certain chemicals are known to alter gene expression or function, which can increase disease risk, if not trigger diseases altogether. Check out this article that summarizes how several classes of environmental chemicals have been proven to alter gene expression, causing epigenetic alterations. Epigenetics and Environmental Chemicals. Many of these chemicals are commonly found in varying degrees in our indoor air and water. For healthy robust people, these chemicals are obviously tolerable within the standard limits, but for those of us with specific genes, we may be much more at risk for triggering genes that can make our lives miserable. That’s the idea. Read more at Science-Based Medicine… What is Epigenetics?!
Clean up your air! The biggest thing is removing outgassing materials and throwing out anything with “fragrance” listed in the ingredients.
Get indoor plants: Ok so the indoor cleaning potential of plants might be negligible due to the quick air changes in your standard home, but they do seem to be great for mental health. Back in the day NASA determined the best plants for cleaning up indoor air (in hermetically sealed chambers): Interior Landscape Plant for Indoor Air Pollution Abatement TLDR: Plants like peace lilies, draceana, and spider plants do the best job at sucking up common indoor air pollutants like formaldehyde and benzene.
Ban fragrance: Throw away everything you own that contains synthetic fragrance, which is found in everything from colognes to dryer sheets, cleaning chemicals and body wash and soaps. These chemicals are now known to be endocrine disrupters. Many with mast cell issues acutely react to products with fragrance, while it may just be a body burden for others. Also, don’t fall for the essential oils hype.. they are a common trigger for asthmatics too. I’ve moved to go scent-free wherever I can.
Remove Memory Foam & Flame Retardants: Get rid of memory foam, and especially any foams that contain flame retardants (in California all furniture had to meet flame resistance standards prior to 2013 so they are ubiquitous in upholstered furniture and mattresses sold throughout the USA). For bedding I suggest scrutinizing everything including pillows, mattresses and toppers. Even the healthier, certified foams still outgas fumes and might be triggering. I write about my mattress saga so you don’t have to have one: The Hunt for a MCAS Friendly Mattress.
Improve Your Water Quality! Especially depending on where you live, your water district or local pipes might not be providing you with clean enough water. Reverse osmosis (RO) water purification is the best way to go to remove chemicals including chromium 6, arsenic, barium, copper and lead. At our last home we installed the very affordable APEC ROES-50, and now we use a local water shop to fill up our own 5 gallon jugs (it is Southern California). And no, Brita and PUR water filters don’t filter enough to remove all these pernicious chemicals.
Talk Therapy & EMDR: EMDR (eye movement desensitization and reprocessing) is for the inevitable post traumatic stress these conditions lay on you, and is the most magical thing I’ve experienced. I wouldn’t have guessed I had PTSD, thinking it was for only for those like legit combat veterans, but it’s not. Feeling like you’re dying and being terrified is something I’m continually faced with, and the natural consequence is PTSD. Beyond the acute attacks, I don’t know who wouldn’t benefit from therapy, let alone those of us dealing with life altering chronic illness. There is a lot to grieve from your old life, and a lot of coping and acceptance. I would not feel as good as I do without my phenomenal therapist.
Scientific American on EMDR: EMDR Taking a Closer Look
The World Health Organization on PTSD treatment (including EMDR): WHO Releases Guidance on Mental Health Care After Trauma
Breathe. Sometimes what you need to do is just survive the moment and keep on breathing. Check out this mesmerizing visual:
“As long as you are breathing, there is more right with you than wrong, no matter how ill or hopeless you may feel.”
Support Animals: A good dog can be its own kind of therapy, and some can be trained to assist with tasks that have become too hard, or alert you before a fall. There’s a case study about a dog trained specifically for mast cell disease! I write about a huge difference between therapy, emotional support and service dogs, and what the deal is with people saying you can just go online to certify your own dog.
Empathy & Support: Endless studies show that having a strong support network of people that care and offer empathy is hugely important. Besides, it’s common sense. Find and get to support groups as your health allows, strengthen friendships with those that bolster you and be kind to yourself. I talk about why chronic illness makes so many people awkward around us: What to Say to a Chronically Ill Person.
For close friends and family, this post is tailored just for them- For Family: What to Know & How to Help
And you NEED to see this video if you haven’t already that illuminates why we feel so terrible or crazy after talking to certain people- you’re probably not getting real empathy:
Grieving: An important part of the process of coming down with any life changing illness, is allowing yourself to grieve what you lost for your present and foreseeable future. I talk about my own grief here: Good Grief. I hope others know they’re not alone in their sadness and depression.
Hope: For me the most compelling form of hope is staying current on the latest research, particularly through Dysautonomia International’s fantastic Facebook Page. They digest and share ongoing and new research being done, along with good tips and reminders. A shiny beacon of hope and support.
Preparing for Emergencies
Get organized! Feeling safe is hugely important, and a big help there is being ready. Know where your emergency rooms and urgent cares are… and know where your preferred ones are. I talk about being ready with an emergency protocol and medical alert card you can hand staff at the ER or urgent care and getting those drugs ready here: Managing the Drugs & Emergencies.
Get a handicap placard! My physician filled out this DMV form for me explaining that I had a heart condition that made it difficult for me to walk distances, which I think made it very cut and dry for the DMV to process. My physician explained to only use it when I really need it, because the truth is I do have some more normal days. It’s invaluable to have, especially in the warmer seasons when walking in 80, 90 or 100 degree weather is scary and hard, yet necessary to pop into the pharmacy or grocery store. The shorter distances made these things doable when the parking lot was busy. Requirements and forms vary by the state you’re in. I’m in California, and was approved for a permanent placard, so now they’ll show up from now on without any fuss whenever it’s time for a renewed one. It’s a load off.
Apply for a Medical Baseline. California’s utilities offer a medical baseline for patients who require extra electricity & gas for health reasons- including us POTS and MCAS patients, that can significantly lower your bills. The energy needed to keep your home cool or warm enough can be expensive, and isn’t really optional. Check out your local utility to see what programs they have available. Applying should be as simple as you and your doctor filling out a form.
Have an Accommodation Card. Dysautonomia International has a great accommodation card that can do the explaining for you: Accommodation Cards. Great to use when you need a little extra help at an organized event or facility.
Flying. I talk about flying with POTS: A Traumatic Flight with POTS. TLDR: It’s equivalent to being at 6000-8000 feet in elevation. Hydration, compression and xanax help a lot.
Embrace Hobbies. You’re still here, worthwhile and can still find satisfying ways to spend your time. I started a series about good hobbies for us chronically ill.
Understanding More Science Behind the Conditions
Research Updates! Get research updates and local event info from Dysautonomia International, a patient advocacy group that raises money itself to fund dysautonomia research. Choice frequent updates are found on their Facebook page.
Recommended Reading. I recommend some non-fiction books that helped me.
Reducing Inflammation & Autoimmunity! The fact is that stress can be excessively inflammatory, and can trigger or make autoimmunity worse by enhancing an already over-active immune system. To be clear, we don’t know what POTS or MCAS are yet, so we definitely can’t label them autoimmune, and though they may present through similar modalities there’s a good chance it’s a more complex [neurological] problem. It is a fact that many patients with POTS and/or MCAS do have comorbid autoimmune conditions, so reducing stress may reduce your risk of developing an autoimmune disease. What is clear is that POTS and MCAS symptoms can be triggered by stress, and that these conditions cause excessive stress on person in many physical and emotional ways. It does also seem fair to claim that our immune responses are already dysfunctional due to our dysautonomia, making stress reduction seem that much more difficult, yet that much more important. Read more…
Histamine! I write about the great many roles this helpful (and sometimes unhelpful) little chemical can play: What’s Histamine Doing in Your Body?
For nitty gritty science and biology of mast cell activation, this blog: Mast Attack
Spread Awareness! These conditions are very under-diagnosed, and still too often misdiagnosed and dismissed. Please feel free to share some of my infographics to promote awareness and understanding…
Donate with Amazon Smile! Rack up donations for Dysautonomia International or The Mastocytosis Society while you shop and get friends and family using it too! A small percentage of your order goes to the charitable organization of your choice at no extra cost to you.
Volunteer! Host fundraisers, help get corporations involved, help with outreach, work to promote politician and physician awareness… and more! Sign up with Dysautonomia International here, and The Mastocytosis Society here.
Research Studies! Sign up to be contacted when POTS or MCAS research study patient volunteers are needed at leading institutions like Vanderbilt, Stanford, Scripps and UC San Diego. Sign up at Research Match here.
Last updated March 8th, 2019