Summary of everything I know and where to get more info…
First! What are POTS & MCAS?
A great overview of POTS that you could provide your newbie doctor: Postural Tachycardia Syndrome: Beyond Orthostatic Intolerance | Authors: Emily Garland & Satish Raj
The most referenced and thorough summary of MCAS I’ve seen: Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome | Author: Lawrence Afrin
How to Get a Diagnosis
Get a decent doctor to test and treat you: Dysautonomia International’s Find a Doctor Directory
If you suspect POTS, you can 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.
This is the best concise overview of the testing for MCAS in a POTS patient written by my fantastic doctor: Tale of Two Syndromes by Dr. Andrew White. If you can’t get to a specialist, you can share this with your general doctor. He clearly defines testing and treatment methods.
If you’re still struggling with getting adequate treatment from local doctors or emergency staff, consider skimming over my article: Desperate for a Diagnosis and Real Treatment.
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: 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 it may actually help tremendously later down the road or after a relapse.
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. I take 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 during that time of the month. 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. Seemed to give me acne.
Mast Cell Stabilizers
Cromolyn Oral: Taken as a drink with water usually 4 times a day before meals and bedtime. 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.
Cromolyn Inhalation: Taken with a nebulizer multiple times a day. Using a nebulizer takes time, but if it works, it’s well worth it.
Ketitofen: Also has an anti-histamine effect.
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, a supplement made with the guidance of mast cell disease expert Dr. Lawrence Afrin. It’s 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! I write about how to up salt intake here. Doctors recommend pushing for 2-3 liters a day to alleviate POTS symptoms.
Florinef: Increases salt retention in order to increase blood volume. POTSies all seem to have much lower blood volumes than healthy people. Has the benefit of reducing the constant urination many of us POTSies 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.
Decrease Blood Pressure | Some POTSies deal with high blood pressure issues, and typically are diagnosed with hyperandrenergic POTS
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 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. Many patients haven’t responded well, but those that do seem to love it.
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, but very in-line with the growing understanding that POTS is in all likelihood an autoimmune condition. 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 POTSies 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.
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 POTSies’ 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.
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.
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: From remote portable thermostats to salt pigs to vanicream! No cheesy sponsored items (nothing here is of course). Read up on some gear that can vastly improve your daily life. 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.
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 and may help treat the illness at the ultimate root of the problem, which seems to be an over-active immune system.
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 meditation 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 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 POTSie needs is the vasodilation it causes.
Reduce Arsenic: Learn how to select and prepare rice differently to reduce your arsenic intake: All That Arsenic in Rice. 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.
Epigentics. Another huge factor to consider is epigenetics, the altering of gene expression by environmental chemicals. Certain chemicals are known to alter gene expression, 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.
Clean up your air! Look into getting indoor plants, removing outgassing materials and throw out anything with “fragrance” listed in the ingredients.
Get indoor plants: NASA determined the best plants for cleaning up indoor air: 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. They can help lower the overall “load” of things your body may be reacting to or having to process.
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.
Remove Memory Foam: Get rid of memory foam everything including pillows, mattresses and toppers. Even the healthier, certified ones still outgas fumes. 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 adequately enough.
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. 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.
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 immunocompromised patients- 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: hydration, compression and xanax help a lot.
I share my wedding day with my belligerent body: Getting Married with POTS
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: Dysautonomia International’s Email List
Autoimmunity! I write about how stress can trigger or make autoimmunity worse: Stress & Autoimmunity
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