I've been wanting to write this post for a while and I've kept putting it off. To be honest, I didn't know where to start. How could I even begin to accurately convey a complex condition layered on top of a complex life in a complex world? It felt impossible. It still does. However, it is something I want to attempt. Fair warning, it may take me a few posts to share everything I want. So, here it goes.

Before getting into my experience, I'll begin with a brief description of Dysautonomia and my specific diagnoses to familiarize you with the terms. A person diagnosed with a form of Dysautonomia has some type of dysfunction in the Autonomic Nervous System (ANS). Without getting too in depth, the ANS controls bodily functions such as heart rate, body temperature, digestion, pupil dilation, and respiration. In other words, it controls most of the functions in the body that we don't think about. These functions are regulated through certain parts of the brain, the Sympathetic ANS (SANS), and the Parasympathetic ANS (PANS). The SANS is often associated with the fight or flight response while the PANS is associated with rest and digest functions, and portions of the brain regulate cardiac and respiratory rhythms as well as hormones and many of our reflexes (www.dysautonomiainternational.org). So, as I'm sure you can imagine, when a person has dysfunction in this system his or her body can sometimes seem to go haywire.

I have been diagnosed with two types of Dysautonomia: Neurocardiogenic Syncope (NCS) and Postural Orthostatic Tachycardia Syndrome (POTS). The main components of NCS are low heart rate (bradycardia) and blood pressure. While I can have these issues any time, they are often exaggerated if I stand still for more than a few minutes or stand up without consciously moving slow and tensing my calves and abdomen. See, without enough blood pressure to adequately pump blood upward to my brain and throughout my body I can experience dizziness, fainting, debilitating fatigue, weakness, numbness in my hands and feet, extremely cold limbs, and more. However, having POTS means my heart can race (tachycardia). As a matter of fact, one of the main diagnosis criteria for POTS is a rise in heart rate of 30 beats per minute or more when moving from laying to seated or seated to standing. This sudden onset of tachycardia can make simple movements more difficult and extremely taxing. For instance, when going up stairs I often have to stop part way to take deep breaths and consciously lower my heart rate, sometimes I'm even forced to sit down until my heart rate comes down and I regain enough energy to make it up the rest of the way. I also have to move more slowly than others when changing positions. It sounds crazy, but even rolling over in bed can cause a spike in my heart rate making it difficult to get back to sleep at night.

On top of these problems I sometimes get other random issues with tasks performed by the ANS. For instance, I sometimes experience gastroparesis (slow stomach emptying). When this happens I become nauseous, have a loss in appetite, can have problems with constipation, and sometimes can't even eat small amounts without great pain. In the past this has led to extreme weight loss, so it's something I have to stay on top of. I can also have what I call "sweat attacks." For some reason, it usually happens when I'm cold. I begin sweating profusely and can't stop. It's almost like my body is trying regulate my temperature and gets stuck on full blast heat (even though I'm still freezing to death). Other times I feel like I absolutely cannot catch my breath. When this happens, I try to take deep breaths and it is next to impossible. I'm also more sensitive to fluorescent light and noisy environments than the average joe. So, lots can be going on at any given moment.

Through the years I've come up with various ways to manage life with both these conditions. However, it's not always a sure bet. Sometimes, even when I'm trying to do all the "right" things I still get flares. This can be triggered by regular life stresses, mistakenly getting a trigger food (such as sugar, artificial sweetener, or caffeine) when I'm traveling, or even dramatic changes in barometric pressure. So, while a lot of my health is within my control, some is not. This is why I have stress management practices such as yoga, breath work, and meditation. It's why I may seem annoying at restaurants when double checking on ingredients and additives. It's even why you may see me sitting in strange positions or wearing calf compressions when I'm doing a seemingly "normal" task.

See, living with Dysautonomia requires some things of me that most others don't give a second thought. For instance, if I'm taking a trip to see my parents (three hours away) I have to make sure I'll have enough downtime once I get there to be healthy enough to make the trip back. I have to plan a mid-way stop into my drive so I can get out and get my blood circulating again. I have to make sure that I have a rest day waiting for me when I get back so I can recoup from the toll traveling for a weekend takes on my body. To me, it's just a way of life, the norm. To others it may seem unnecessary, even frustrating. However, I know it's what I must do if I want to stay healthy. No bending the rules. As a non-rule follower that has been hard for me at times. I've thought I could cheat the system somehow and get away with it. Nope. It doesn't work. So what are all the rules?

Well, for me the rules are always up for re-evaluation. As I learn more I may realize that one thing I was doing didn't quite serve me so it's time to let it go. Something else may need some tweaking. And, the tried and trues always seem to hang around.

First up, water. I have to drink 80-100 ounces of water a day. No cheating. If I don't get my fluids in it's a sure bet that I won't feel well and sometimes even when I do drink enough I still require IV hydration to keep me up and at 'em. Sometimes drinking that much fluid is difficult because let's face it, that's a lot of water! Since I don't drink sugary or artificially sweetened drinks I can get bored, so I get variety by adding a drop of DoTerra oils such as Lemon, Grapefruit, or Peppermint to my water for extra flavor (you can order your's here or at the DoTerra link above). The cool thing about that is I get the added health benefit of whatever oil I choose. For instance, lemon is warming on cool days or evenings and it aids in digestion which can be a problem for those of us with ANS issues. It can also relieve nausea and boost the immune system. I also change it up a bit by drinking tea. I prefer herbal teas such as lemon balm and dandelion because they support the nervous system and are naturally decaffeinated, which is very important if you have a racing heart. Avoiding caffeine keeps me more hydrated, my adrenals in balance, and my heart rate down. I love hot tea, but sometimes I want something cold to drink. When that's the case I fill a mason jar or pitcher with some iced tea and pop it in the fridge for an easy go to drink. If I want an extra refreshing treat I add DōTerra oils or fresh mint to a cold glass of tea and drink up! And, don't forget sometimes adding electrolytes or trace minerals! Just be careful with electrolytes because many of the powders contain added sugars which cause inflammation and can increase heart rate. I like this one. You can also make your own with fresh lemons, limes, oranges, salt, and coconut water. I've posted several renditions on instagram throughout the years (scroll to January 30, 2016 to see one of my favorites).

Next on my list is salt. I simply cannot skimp on salt. I steer clear of low quality table salt and opt for more gourmet versions like Pink Himalayan, Black Salt, and Sea Salt (one of my current favorites is from France). These salts generally contain higher mineral content which is extremely important for basic bodily functions and they taste great, a very important point when you literally need to salt EVERYTHING. I remember when I was first diagnosed my cardiologist told me he even wanted me to salt my chips. Coming from a family where salt was basically banned (my paternal grandmother died of a heart attack very young) , I thought he was nuts. Well, he wasn't kidding. The amount of salt recommended for most people with NCS and POTS is 3-5 grams per day. So, I literally salt everything... fruits, veggies, meats, nuts, all of it. And, now that I'm eating close to no processed foods, I'm having to use even more salt than I did before. I don't actually count my grams because I can tell when I'm not getting enough based on how I feel and in general I don't worry about getting too much since my blood pressure runs low. If I'm feeling off I sometimes even eat a handful of salt straight and chase it with a glass of water.

Now on to exercise. This one can be tricky. I most definitely require near daily movement to keep my blood flowing and blood pressure in an optimal state. That said, too strenuous of movement can send me straight into a flare. You've heard the saying "the struggle is real." Well, in this case, it is. It's a constant balancing act because "strenuous" can be different on any given day. Today I may be able to go on a walk and still practice some yoga later. Another day, I may need to do a few floor exercises and call it done. I generally give myself two days of "difficult" activity per week (never back to back), which usually consists of an hour long vinyasa or power yoga class. Yes, I realize that this isn't "difficult" by the standards of many, but in the world of Dysautonomia a yoga class can kick my ass. The workout my system gets from all the up and down movement can be challenging in itself. The other days I do some gentle yoga (legs up the wall is a must for spoonies), take a relaxing walk, or do some light resistance training at home. The recumbent bike is also great because my body has to work less to get blood back to my heart and brain since I'm sitting. I usually take 1-2 rest days per week, and preferably not in a row. Two days with no exercise can make me so exhausted that I can barely get myself moving again. Not from lack of motivation, from lack of physical energy. Remember, with all that vasodilation my blood needs extra help to keep from pooling in my lower extremities.

Another necessity for me is planning a rest day into my week. Since my work week runs from Monday to Friday I generally take a rest day on Wednesday. I've tried to do it on Thursday when I have scheduling conflicts and it seems that my body really prefers Wednesday. So writing this post is reminding me to be more purposeful about that. On rest days I allow myself gentle movement if it feels good or complete rest if that's calling my name. I may watch a movie or a few shows while my son is at school. Perhaps I write or read. The point of this day is to clear my calendar and expect to "accomplish" nothing. It's all about dedicating an entire day to appreciate all the work my body does for me on the daily and allowing space to rest and recover. In general, I don't think we Americans do that enough. You don't have to have a chronic condition to make time for rest!

Diet is something else that plays a very important role in my health. If the word "diet" has a negative connotation for you, feel free to sub "nutrition." For me, they are interchangeable. This is one of those areas that I'm constantly tweaking based on new information and feedback from my body. Right now what seems to be working is high fat, low carb. So, I focus on eating grass fed, free range, and pastured meats, next to no dairy (besides butter - Bulletproof Coffee and matcha are a must!), lots of organic veggies, low carb/sugar organic fruits, and I only have grains about one day per week. I think I could cut grains completely but I believe they do serve a function in creating a healthy gut microbiome, so I keep them around in small amounts. However, in keeping with the idea of tweaking my diet as necessary, if I feel I need more carbs/grains I give myself what I need. For example, while drastically cutting my grain intake seems to be working overall, I notice that during certain points in my cycle I sometimes seem to need more carbs to maintain what feels healthy for me. So, during those times I usually have more carbs than during the rest of the month. Sometimes sweet potatoes do the trick. Other times I opt for a gluten free pizza or some brown rice with dinner. It's all good! Another thing that's helped me a ton is eating a bigger lunch. This is a necessity if I want a symptom-free day. I've found that an ample, healthy lunch keeps me energized and feeling my best all afternoon (no dizzy spells, drops in BP, or "weird" feelings that often accompany Dysautonomia). I amp it up with extra healthy fats (usually coconut oil, ghee, or brain octane oil), some animal protein, and plenty of veggies. One of my favorite lunch ideas are the grain-free tacos pictured below. I use whatever low carb veggies I have in the fridge, add in some pastured meat, season it with yummy spices like mustard seed and turmeric (and lots of that salt mentioned above), cook it all up in plenty of healthy fat, and put it on a Siete tortilla for the most DELICIOUS meal.

The next thing I do is get adequate sleep! Between Dysautonomia and hormonal changes this is sometimes easier said than done, but I do still aim for around 9 hours of sleep a night. I know from experience that's my sweet spot. If I get less than 8 for more than a day or so I start feeling myself go downhill.. and quickly. The vagus nerve is a major component in the function of the ANS and it resets while we sleep. So, managing my schedule and sleep cycle is extremely important to me. Here are some of the ways I do just that. First, I set my phone to red light in the evening so my body isn't confused by the blue light that is usually emitted. Second, I turn off all overhead lights once I'm finished cooking dinner. This helps my body produce natural melatonin and is a signal to my subconscious to start winding down. I also create a ritual, like making a cup of hot tea to drink an hour or two before bed, so my body knows to go into sleepy mode. Speaking of which, I also take a supplement called Sleep Mode at night during the times of the month that I know my hormones keep me up or if I haven't slept well for a night or so. It's a fast hack to get me back into the swing of sleep and allow my body to reset. The dosage is 2 pills, but I've found that 1 does the trick for me, so my bottle goes twice as far with all the benefits. And, let me be extremely clear, I am in no way, being paid to endorse the Bulletproof brand or this product. I'm simply sharing what works for me and this happens to be a supplement that gets the job done. Even if I get less sleep, I feel more refreshed when I do take Sleep Mode than when I don't, which means better health overall. So, of course it earned my business!I also use DōTerra Breathe oil as a sleep aid. I wrote more about how I discovered its sleep benefits in a previous post. If you want to learn more about that you can read up here!

Another super important (but maybe not so obvious) task on my list is to focus on mitochondrial health. Mitochondria are the powerhouses in our cells. As long as we are giving them what they need they provide us with energy and supply our body with the power it needs to function optimally. However, many things in our environment today damage our mitochondria, so it's important to do whatever we can to boost our mitochondrial health. One way I do this is by getting plenty of sunlight. I take a 20-30 minute walk most days with no sunglasses so my eyes can take in all the healing properties from the sun. In the summer I spend even more time in the sun allowing my body to naturally heal itself. Because I live in Ohio and our winters can be quite grey, I sometimes use a UVB lamp to get rays as well. Since I don't own one yet, I go to a local tanning salon and spend 8-10 minutes in a UVB only bed a few times a week. Another thing I do to boost mitochondrial function is end my baths and showers with cold water. Because I also have EDS and Raynaud's, in the winter I don't turn it to the coldest setting, but I do only turn it about 1/4 warmer than that. I want to make sure I get goosebumps and feel almost a shocking jolt when the water first hits me. The first few times I did this it felt so cold. Now though, my body actually enjoys it and toward the end of my shower/bath I actually feel my body asking for the cold water. Pretty cool! Besides helping with mitochondrial function this also helps lessen post shower/bath symptoms associated with NCS and POTS. Since heat is a vasodilator those of us with one or both of these diagnoses can get weak, dizzy, or faint from something as simple as a shower or bath. This helps with that, especially if you let the cold water hit the back of your neck, and bends of your arms and legs. I also recently decided to start taking a supplement called Mito2Max. It contains amino acids, enzymes, and adaptogens to turn on the mitochondria and keep our bodies functioning at their highest potential. I also sometimes shake my body all over for a few minutes just to wake my mitochondria up and give them a little boost. This is especially helpful when I'm feeling sluggish. I often do it a few times a day when I'm starting to feel a little out of it and I can feel the shift in my system. Lastly, inflammation wreaks havoc on mitochondria. So, I do my best to lower inflammation through lifestyle choices such as exercise, diet, and the kind of light I get (white LEDs and fluorescents are a no go - they stress mitochondria and lower ATP production (https://blog.bulletproof.com/light-hacking-for-better-energy-mood-and-performance/)).

Finally, I can't leave out meditation. While this is a spiritual practice for me, it's also a necessity for my physical health. Having Dysautonomia means my fight or flight mechanism can sometimes get stuck on full throttle which can wreak havoc on my adrenals, heart, and mind. Taking the time to meditate each day helps me calm that sympathetic response and fall into a deeper parasympathetic rhythm. This is super important if I want my stomach to work well, my heart to stay in rhythm, and my breathing to come easily. Bonus, it helps calm me when I feel anxious and brings light when I'm depressed (which is pretty common when living with a chronic condition of any kind). While I have a meditation pillow, use essential oils, candles, and/or incense and even sometimes play soft music, those things aren't necessary to have a meditation practice. Getting into any rhythm where you are completely present and in alignment is meditation. Sometimes this happens when I'm cooking or on a walk. It can happen when I'm feeling my heartbeat or riding the waves of my breath while laying in bed. It happens when I'm snuggling my son, rhythmically rubbing his hand or hair. So, while I do love alone time on my yoga mat or meditation cushion, I also like to create moments of meditation throughout my day. For me, this brings in more moments of calm and reminds my body to stay connected, which keeps me healthy. I've also found (maybe because I'm full of mobile, Vata energy) it is important for me to have a ritualistic practice around meditation. This helps to keep me grounded and in alignment physically, mentally, and spiritually. Starting my day on my meditation pillow in a dimly lit room is the perfect anchor for the day ahead of me. Also, meditation has been scientifically proven to positively alter gene expression and improve our cognitive and physical health. Aum to that!

On that note I think I'll close out this post.. for now. I still have so much to say about what it's like to actually navigate life with these diagnoses and how it's changed my personal relationships, work life, and more. As tempted as I am to keep writing, I'll save that stuff for my next post. In the meantime if you have Dysautonomia or another chronic condition, maybe try some of these tips and let me know what works for you. I love hearing from you whether on social media, personal messages, or on here. Until next time, stay healthy and peace out!