A while back I ended up in the hospital and was diagnosed with a a few things, including POTS, or Postural Orthostatic Tachycardia Syndrome. It took me a while but I finally am able to live symptom free and manage this syndrome in order to get my life back. The following is an outline of how I got from daily seizure like episodes, rapid weight loss (not the good kind) and the inability to care for myself (including cooking, grooming and cleaning; I could barely get to the bathroom on my own and struggled when I was able to shower, which was not as often as I would like to admit) to being able to work full time again in addition to take care of myself (better than before) and my family.
POTS is a type of dysautonomia (meaning the autonomic system is malfunctioning). Since that time, I am noticing more and more people are being diagnosed with this as it seems to be the next new mystery illness. Because of this autonomic system malfunction it can effect the tears, salivary glands, digestion, temperature control, blood pressure and heart rate and anything that requires homeostasis in the body. All the things that are supposed to run without effort can malfunction and the symptoms don’t stop there. It also comes with a lot of anxiety, depression and a sense of fear much of the time. There are also side effects, complications and linked conditions such as fibromyalgia, mast cell disorder, hypermobility, and connective tissue disorders such as EDS (Ehlor Danos Syndrome), Raynaud’s disease, viruses and autoimmune disorders. A brief description would be a resting heart rate over 100 (tachycardia) that increases upon standing at the same time that the blood pressure drops dramatically upon standing ( postural orthostatic intolerance). It is often accompanied by fainting (syncope) or near fainting (pre-syncope). Sometimes it can involve bradycardia (When your heart rate gets dangerously low) or increased/high blood pressure. For me it was tachycardia (excessive heart rate) and low blood pressure and I often had trouble breathing which left me feeling like I was suffocating. It is accompanied by severe fatigue and is often compared to Congestive Heart Failure in explaining what it feels like to have active POTS on a daily basis. For some it is triggered by stress and others it is triggered by food sensitivities or a viral infection or even surgery (all of these are stressors to the body). Sometimes it can lead to seizure-like episodes that can look like a panic attack or seizure but are not caused by panic or fear or anxiety although anxiety is a side effect of the syndrome, as I mentioned above. These episodes are not caused by seizure activity in the brain, either. It is technically neither of the above. For the sake of the article, my description will have to be the “short version” but if you would like to know more click here. If you or someone you love either has POTS or you think you/they may… read on. I’m about to tell you how I beat POTS and how I live symptom free without beta blockers or pharmaceuticals. Mind you: this is not a cure for the syndrome but lifestyle and nutritional therapies that treat possible underlying causes and therefore get rid of the symptoms associated.
First I want to say that currently I am not medication free. However, I only take medication if I have a deficiency in that medication. For example, if I have a Calcium deficiency or an Estrogen deficiency or a Serotonin deficiency then I will address that deficiency by taking that supplement, hormone or nutritional therapy that will get my body what it needs, hopefully allowing it eventually to make its own when possible. I will always choose a natural way to address that deficiency as my first choice. Sometimes it requires a prescription, such as an estrogen deficiency. I do not, however, have a “speed” deficiency or “adderall” deficiency so I do not take stimulants to treat my fatigue. I do not have a “beta blocker deficiency” so I do not take beta blockers. I have read some undesirable side effects and have some concerns about these types of drugs but I encourage you to make your own, educated decision with the help of your own Functional Medicine Doctor or Specialist. If you feel that you must take them, please do! I took a Beta Blocker for a short period while I figured out alternatives and until they no longer made me feel any better than I felt without them. (At one point they made me feel worse because they lowered my blood pressure too much). But If you choose to go natural, then I am hear to help you with some things to investigate in your own bio-hacking and to take to your doctor if you choose an alternate route to health. I am not a doctor and I am not YOUR doctor. This article is not meant to diagnose or treat anyone. It is merely for informational purposes only to share with you what worked for me. I hope it helps you in your journey. I also want to say that while I live symptom free, my progress must be maintained by continuing the good choices I learned from putting together the “pieces of the puzzle” that contributed to my POTS. Each category or part below was only a piece of the puzzle. If you try one of these things with your own journey, I encourage you to TRACK THE DATA before you decide something does or does not work. For example, yoga may only lower your heart rate 10 points. Meditation may only lower it 10 points. Neither by itself is a lot but together it could make life easier. Or it may equal 25 or 30 beats per minute when combined. When you add together all the pieces that make little differences together they can be very powerful and may help you cope until you find the three things that lowers it to normal without as much time and effort.
Because of the multiple diagnoses, it took me a while to grasp that I had POTS and it was not just a side effect of one of my other diagnoses. It was related. It got worse when I was exposed to some of the same food triggers that triggered my autoimmune. But it was still its own separate problem. The overlap between my autoimmune and the POTS did not mean that I could ignore it and not deal with it head on. And When I got as far as I could with my autoimmune and did not feel better, it hit me: I have to deal with the POTS as its own entity. The same may or may not apply to your situation as yours may be triggered by a virus or a surgery or some other combination of stressors
The First thing I did was to Address Allergies. For me it was food allergies that were triggering my flares and seizure like episodes. But a POTS flare or symptoms can be triggered by any type of allergy. According to Dr. Devi Nambudiprad, allergies cause a sympathetic (fight or flight, biochemically speaking) or a stress response that includes rapid heart rate and blood pressure change. Fight or flight also involves a shutting down of digestion and shallow breathing. A rise in adrenaline response from the central nervous system in an otherwise healthy individual is a normal response and usually not noticeable. In a patient with POTS, this can reek havoc as their body is already producing too much adrenaline. So the first thing I suggest doing is identifying and addressing any type of allergy. For affordable ideas on how to go about doing this click here. Although the article is about identifying food allergies, the same methods can be used to identify any type of allergy. Of course for a more complete list of ways to identify allergies I suggest Dr. Nambrudipad’s Book Say Goodbye To Illness. In the book she describes and lists a complete list of ways to test for allergies, their pros and their cons.
While we are on the subject of the Autonomic System, lets talk about Adrenal Fatigue. Adrenal Fatigue is what happens when you have been under a lot of stress for an extended period of time without time for recovery. It can happen from trauma, illness, or a high stress lifestyle that puts your body in this fight or flight mode for extended periods of time. It is my belief that adrenal fatigue is one of the major causes of POTS (I believe POTS to have a collection of causes that come together like a perfect storm) as the autonomic system and the adrenal glands are such key players in each other’s functioning. Also, the “poor man’s” way of diagnosing adrenal fatigue is to see if your blood pressure drops upon standing. Sound familiar? If you remember, it’s a defining symptom of POTS. Basically, after your body is producing high levels of cortisol for an extended period of time to deal with ongoing stress, the adrenal gland begins to get tired and has trouble keeping up with your life’s demand. It then begins to underproduce cortisol. This low cortisol can eventually cause adrenaline to overproduce in its place as a way of trying to compensate under the stress that your body is under as part of the continuing “threat” of this constant state of fight or flight. While this doesn’t always lead to POTS, I hypothesize that the majority if not all of POTS patients have some form of adrenal fatigue or a suppressed immune system (which is a side effect of adrenal fatigue). Treating adrenals is tricky and some people are more prone to adrenal fatigue then others. While I highly suggest taking supplements and making nutritional changes to support your adrenals, I recommend seeing a functional medicine doctor or a chiropractor who also runs lab tests to assess and treat your Adrenal Fatigue. It is a lot easier to address with a professional helping you do this. It is commonly diagnosed with a saliva test that tracks your cortisol production throughout a day to see the rise and fall to compare to a healthy rise and fall. For a self-assessment quiz and further information on Adrenal Fatigue, I suggest clicking here to learn more. I can say that treating my adrenals was probably one of the 3 most impactful things I did to beat POTS. I saw results quickly from taking supplements and it made a huge impact on my energy and ability to get up and go and get my life back. Again it was only a piece of the puzzle. but in about 2 weeks after starting medication I felt measurably better.
While I waited for my adrenal labs to come back, I tried to lower my adrenaline. Since an excess of adrenaline was responsible for all my symptoms, I started looking for ways to remedy this (see below where I list lesser things I tried in my journey). I also looked for ways to repair the autonomic center of my brain and reduce inflammation that may or may not be present in that area of my brain. I came across a Nutritional Protocol that I combined with eliminating my food allergies called the Wahl’s Protocol and was amazed not just at Dr. Terry Wahl’s personal story but at the hope that any damage in my brain could be reversed if my body could just get everything it needed. Dr. Wahl’s created her protocol to feed every cell in the body and to maximize brain function and healing. It was designed for the brain and the gut, which I learned are very connected. In fact, that is why digestion is often a problem in this neurological syndrome. In addition, I came across this article on Fibromyalgia that recommended a ketogenic diet to reduce adrenaline. While I personally didnt have Fibromyalgia, I DID have excess adrenaline. This was exactly what I was trying to do! It so happens that Wahl’s Protocol Level 3 is an MCT ketogenic diet and since it would both reduce adrenaline output and repair any damage to my brain… i decided to give it a shot. It definitely helped. In fact, when I was ready to go back to a paleo diet it took a while for my body to get used to burning carbs for fuel again. But I was ready for a wider variety of foods to increase nutritional intake. Now that my brain has healed, I will eat with the seasons and only be ketogenic at the time of year my ancestors would have naturally been ketogenic historically. For more information on The Wahl’s Protocol I suggest reading the book here. For the record, I did best on level 3 but I had to add supplemental nutrition to get all I needed to manage my POTS.
Which leads me to Optimizing Your Electrolytes. Most doctors recommend a large intake of salt and water to increase blood volume and blood pressure. They will also often prescribe steroids to increase blood volume. But I was concerned as a high sodium diet has some p0ssible long term side effects, including stroke which I am already susceptible to, genetically speaking. Also, The body needs more than just one electrolyte to manage blood pressure and heart rate. Too much or too little of any electrolyte can cause arrhythmia and blood pressure irregularities. We mostly hear about deficiencies in electrolytes causing high blood pressure but they can also cause low blood pressure and they also cause irregular heart beat. Low blood pressure can in turn cause the heart to work harder and faster to get the blood to circulate especially if there is less blood in volume. There are more electrolytes than just salt. Other electrolytes include Calcium, Magnesium, Potassium, Sodium, and Bicarbonate. The latter is made by the body but the first four need to be ingested through diet. Due to depleted soils and poor diets, all of us are way below our optimal intake of potassium and magnesium while being over our intake of sodium. We also lack trace minerals because the sodium we ingest is processed and void of these trace minerals like our soil and therefore our food is void of minerals. I do suggest getting the recommended dose of sodium every day. It should be equal to your calorie intake and should be from a mineral rich source like sea salt or Himalayan salt. In Addition to a balanced sodium intake I recommend optimizing your Potassium, Magnesium and Calcium intake. Sodium has a relationship with potassium and must be balanced. In turn, Potassium must be balanced with Magnesium and Magnesium must be balanced with Calcium. They all work together to help your heart rate and blood pressure normalize and work at its best possible homeostasis. I hypothesize that POTS patients need more than healthy individuals because Magnesium is often used up by our body during stress and illness. The prolonged stress on our body and in our life has created a greater need for this mineral and therefore its partners in health. In order to do this safely, as too much can cause just as much problems as too little, I suggest getting a doctor or nutritionist to help you track your nutrition intake over a period of time to help determine a safe daily supplemental intake to add to a healthy diet. I would aim for the Optimal Daily Allowance instead of the Recommended Daily Allowance since you are treating a syndrome and not merely trying to avoid illness. You are looking to thrive, not merely survive. It gets tricky since there is no established Daily Allowance for Magnesium so I chose the most absorbable form with the least amount of effect on stool quality. I gradually increased my dose while paying attention to symptoms and stool quality. When my symptoms got better and my stool reached a healthy consistency I knew that was the ideal daily intake (I included food sources in my calculations) and I kept my dose there. This was MY optimal dose for my body. Yours may be different depending on your body’s needs. Please consult with a Functional Nutritionist for help figuring out your needs.
I then followed the Optimal Dose recommendations for the other electrolytes hypothesizing that if they were all at the ODR then they would be balanced with each other. This helped tremendously. Avoiding allergens, meeting nutritional needs and treating adrenals were the 3 biggest things I did in order to stop the daily misery that was keeping me from my life. The fourth and fifth biggest things (addressing hormonal deficiencies/imbalances and addressing viruses) were done by my Functional Medicine Doctors.
Other deficiencies in your body can also effect blood pressure and heart rate as well as autonomic function. One example of this is Hormones. For example, Estrogen is a neurotransmitter necessary for autonomic function. Cortisol is necessary for blood pressure and pituitary function (it’s in the deep limbic system). Thyroid function can be effected by both of these things and make you feel tired. Get your hormones checked. All of them. Again, I recommend a Functional Medicine Doctor for a complete lab panel.
Viruses can also cause problem. Think of how you feel when you have the flu. It feels like walking to the kitchen is running a marathon. You’re weak, tired, your heart has to work harder for you to function… sound familiar? Get tested for viruses even if you don’t think you have one. My Epstein Barr had reactivated and was a huge factor in the way I felt and responded to heat and stress and my fatigue. My doctor chose to give me a Vitamin C IV drip once a week for 6 weeks to give my immune system a boost to knock EBV back to being dormant. This took me from functioning to living.
Could There Be More? Yes. There could be more. Every Body has its own unique medical history and genetic predispositions. I’m still finding out how my mthfr, gut health, connective tissue disorder and such are all related to this and autoimmune. You may have something unique contributing to yours. I challenge you to seek health and to “biohack” yourself. Find out how your body works. Find out how your brain works. Find out what parts of your body aren’t working, specifically. And then figure out how to make it work by giving it what it needs and removing things that are keeping it from working at its best. If that means no computers and phones after dark so you can get enough sleep to heal, then remove all computers and phones after dark. Do it. Get well. No matter what it takes. If that means giving up junk food so that you have enough room in your stomach for nutritious foods, do it. Whatever it takes.
- How did I figure this all out? By looking for the causes to my symptoms, finding clues and following any trail that seemed to “ring a familiar bell” from my medical history. Some things I had to get help from my doctor (like lab tests and advice on how to go about things safely) but I was able to look up everything I could find on blood pressure, heart rate and and the autonomic system. I read books on the brain (Dr. Daniel Amen’s Change your Brain, Change Your Life), where I found that the autonomic system lies in What Dr. Amen calls the Deep Limbic System. Thanks to this book and its information on this part of the brain, I then was able to tie some of my other symptoms with the same area of the brain and see how they were related to my dysautonomia (like depression and anxiety) and make hypotheses on what was contributing to the malfunction and get ideas on how to address the possible underlying cause. It was here that I learned that hormones and serotonin are major contributors to reaching optimal function in this area of the brain, as well as things like touch. I was also able to learn ways to “re-wire” this part of the brain both as coping mechanisms for the side effects but also to give this are of the brain its best chance at recovery. Dr. Daniel Amen also recommended that it was possible to treat this area with supplements. I hypothesized, based on my medical history, what was going on in my brain and decided to run an experiment on myself. I then took this idea to my functional medicine doctor who knew my medical history also. She helped me make an informed, safe decision on what to experiment with and what to leave on the health food store shelf. When I had completed that experiment I researched some more. I learned how the brain and the gut were related and how the gut and the brain was effected by fight or flight and what other things can cause the same effects. I researched the nervous system and nutrition and yoga poses and more. I tried some more things such as yoga (i started my exercise program here and built up to brisk walking), vagus nerve stimulation, hcl pills for digestion, meditation, earthing, camping in the woods for multiple days with no wifi or phone, chiropractic (more on this below in How To Manage A Flair). I tried one at a time and tracked the data (taking my heart rate and seeing how the stimulus effected my heart rate compared to my usual heart rate pattern from the same times of day). My heart rate was different during “good” times of day versus “bad” times of day). I sometimes experimented to see if combining two things would work better than one alone. I tried EVERYTHING. It didn’t matter if it would work. I had to try. Some things enabled me to eat, others made me feel better for a day and others for a month. I did this until I found the things I could do to maintain my health consistently and that fit my lifestyle.
One thing I learned from a blog from another who cured their POTS was a wonderful quote. The writer says “Those who become chronically ill say it’s the worst thing that ever happened to them. Those that beat chronic illness say it’s the best thing that ever happened to them.” Whether or not you beat this is up to you. Ask yourself: “why did i NEED to get this?” What is God or the universe trying to tell you? For me, It was that I was on the wrong path. And this was the only way to get me off that path.
I will always have orthostatic intolerance to some degree because I always have had it. I will always have a flare if I get glutened because I am very allergic. Ok. Fine. But I have not always had POTS and neither have you. Its a collection of symptoms. Symptoms have causes. You just have to find them.
But I have the tools to come out of that flare and get over it. Another person said a doctor told her that the worst thing you could do for POTS… was to give up. Sad that this is exactly what many doctors convey when they tell you there is no cure. There is no magic pill you can take to not have it anymore. To be symptom free and medication free is going to take time, work, a positive attitude (difficult if you are depressed and anxious, I know), and trial and error. Be kind to yourself.
What not to do. Insanity is doing the same thing and expecting different results. You cannot go back to the unhealthy, stressful lifestyle with bad stress management skills and junk food for dinner that got you here. If you do what got you here you will end up… here. So make a choice. If that means getting rid of stressful, toxic relationships, then do it. You are worth being healthy. If it means you give up bread because you find out you are celiac, do it. Your health is more important than bagels. For me this meant a change of career (blessing in disguise), giving up family thanksgivings, and getting rid of toxic people in addition to implementing stress management and exercise regularly. I also meant taking supplements by the handfuls. So guess what? I do all of that. Because I am worth being healthy. So are you.
How To Manage A Flair. Sometimes I get glutened and it causes a flair. But now I have the tools to reverse in a week or two what used to take 6 months to a year to reverse without the tools I have learned. First, go to a chiropractor who adjusts upper cervical. This has been a godsend. If you have fibromyalgia, then get that under control first (some chiropractors are very good at fibromyalgia, so get a consult before deciding if the person can help you or not). This is something that has been life changing. with a few adjustments (sometimes just a few or even daily if the food exposure is really bad and therefore the flair is really bad) for a week or two until I feel better. Second: At this time I am very disciplined about my diet and supplement regimen. Your body needs extra nutrition to heal. Give your body what it needs. Third: Rest. It’s ok. It will all still be there when you are well. Take Naps if you are able. Your main job is to heal. Do the minimum and LET yourself just relax and heal. Four: When the worst of it is over start again with some light yoga/stretching and a walk until you are able to do more. If you have a bad day, then have a bad day. Try again the next day. Take advantage of your “good time” of the day to do what is most important. And Fifth: Be kind to yourself. Go get your nails done. Get a massage. Take a long bath. Watch TV. And keep on keeping on. Two steps forward and one step back is still progress… hell, its a cha cha:)
I hope this helps.If I think of anything else I’ll add it in. And thanks again for joining me on My Crazy Journey.