I found a post that I started last June about fitness options for POTSies. The post was about 75% complete when I am assuming I forgot I had started writing it. I think I am going to finish it and post it because it has some good info, but right now, I am going to talk about what I am currently doing (read: the workout my doctor forced me to start this week).
At this point in my POTS "tenure," I am able to stand and walk in small spurts. The things that keep me from working out more than anything are my dizziness, heat intolerance and fatigue ... oh, how very tired I am. My doctor told me she wanted me to start walking every day at least 10 minutes and then build up from there when I am ready. Luckily, with the spring-like weather, I have been able to walk down the street and back with my mom or my brother this week.
I like to track my workouts so that I can see my progress. We did this in cardiac rehab, and it has stuck with me. There are two tools that are really making the tracking so easy for me: my Fitbit HR and MapMyWalk.*
Fitbit HR
I love my Fitbit HR and have found it to be very accurate. I have a Polar FT4, which I still highly recommend, but I was getting a little sick of putting on the chest strap every time I needed to monitor my HR. I've been wanting a Fitbit for a while — especially for the sleep tracking — so once I saw the HR version had come out, I was game.
The Fitbit has a way to track exercise, but for what I am wanting to track and monitor, I use an app to track my workouts.
This is what the HR chart looks like on the Fitbit dashboard. It gives you your HR average, and let's you slide along the chart to see what the specific HRs were throughout the workout. This was a pretty good walk for me HR-wise!
MapMyWalk
This is where MapMyWalk comes in. I use the app on my smartphone and just carry my phone with me when I walk, which I recommend you do anyhow if you are walking alone. I hit "start workout" on the app, and it uses GPS to track my route, distance, speed, etc. You can also set it to give you updates on how long and how far you have been walking, which I love! Back in my pre-POTS days I would run with an app that did something similar. I just prefer knowing the app will tell me what's going on so I'm not watching the clock.
Once I get home, I transfer my workout data to my Fitbit dashboard, which then incorporates my HR data for the time frame that I was working out. The one downside to the manual exercise tracking through the Fitbit interface is that is doesn't let me edit seconds. If I worked out for 11 minutes and 20 seconds, I can only choose 11 minutes or 12 minutes. I'm sure for most fitness gurus seconds doesn't matter, but we know that for us the seconds can matter.
So to work around this, and to help me see the data the way I want to without having to consult both apps later, I've been putting the data plus the HR chart together in an Excel doc. This will also give me a place to easily print from to provide info to my doctors.
Do you track your exercise? What tools or apps do you find most helpful?
* I have not been paid for my review or recommendation of these products. This is just based on my personal experience and opinion.
We've already established that I'm the worst blogger of all time, yes? If nothing else, I am SO good at ignoring my blog. (Apparently though, I have nine drafts started, so I must have considered posting at some point.)
So let's see, what have you missed? I still have POTS (duh, right?); it's been three years now. My symptoms haven't changed at all in the past year and a half or so, which I guess is kind of a good thing. I would love some of my symptoms to go away, but I certainly don't need to add any new ones, so that's silver lining for sure.
I wasn't really in the mood to see doctors last year, so I didn't. Sometimes you just need a break. However, I only have my super-awesome insurance for a few more months, so I am back on the doctor train to make good use of it while I have it. I saw a new neuro in March for my constant dizziness. He is sending me to physical/vestibular therapy. He really believes my neck and vestibular dysfunction and probably some silent migraines are the sources of my dizziness. I start therapy next week, and I'm anxious to see how it goes. One of my other new docs said that she has patients who have really had good results from vestibular therapy, so I would be more than happy to add myself to that number.
I will keep this short for now. Just wanted to put an update out there. Since I am trying some new things for treatment, perhaps that will motivate me to keep writing. I suppose only time will tell. :)
There was a segment on Katie yesterday about integrative medicine that briefly mentioned POTS. I have seen a multitude of reactions to yesterday's show; I felt inclined to give my reaction and thoughts on the subject.
Yes, it is no secret that I am pro integrative medicine, but I still believe any medical treatment should be met with critical analysis, research and knowledge. From that perspective, I do agree that we, as a POTS and chronic illness community, should bring a certain amount of skepticism to any claims or reports we see on TV.
With that being said, here are a few things I feel compelled to comment on.
1. Wendy, our fellow POTSie, never claimed to be cured in three to five days.
I have noticed the skepticism of some is rooted in the fact that this woman claimed to get better in three to five days. What Wendy said was that her severe neuropathy pain at night was gone in three to five days. To me, saying that an herb made neuropathy pain better within a few days is no different than someone who says his/her tachycardia was better within a few days of starting a beta blocker.
Wendy also said that her circulation and blood pooling issues were significantly better after acupuncture and that after a combination of treatments, she is feeling much better. So those are the facts we know.
What we don't know is: how long Wendy suffered with POTS, how long she underwent acupuncture and treatment, what symptoms or comorbid conditions she has/had, what her POTS trigger was, what "feeling better" means to her (she never used the word cure), what she has to do to sustain her current condition.
So you don't think I am just up on a soapbox, when I first saw this segment, I felt a little jealous at first and found myself comparing myself to her in a defensive way. But I rewatched the segment a few times and reminded myself that I don't know her journey — past or present.
I would just hate to alienate, judge or invalidate someone else's POTS experience just because she is doing a lot better. Rather, we should embrace every fellow Dysautonomiac, no matter the severity or current state of his/her condition. If someone happens to be feeling great or found a treatment that worked, rejoice with him/her and draw hope from it.
2. This is TV — and ultimately — entertainment.
Keep in mind this segment was less than 10 minutes long, and the focus was Chinese and alternative therapies. The mention of POTS was secondary and a small blip. There was not time for details, so of course, the success and ultimate result was where focus was placed. Bringing in a patient these treatments didn't work for or someone who wasn't well into treatment wouldn't have served their purpose of shedding a positive light on the topic. That's the nature of entertainment.
3. I am grateful for ANY awareness and exposure that POTS receives.
The mention of POTS was very short. The reality of the syndrome, and its debilitating nature wasn't explained. To a certain degree, the POTS most of use know and don't-so-much-love was minimized.
Those are all fair statements. But in my attempt to find silver lining, POTS was mentioned on national TV! I am grateful for that. I am grateful that Katie Couric is starting to hear about it. I am grateful that someone watching who wasn't familiar with POTS might have looked it up after the show to learn more about it.
Sometimes awareness comes in baby steps, so I am happy with this tiny step.
4. We all have different paths and results.
We won't all get better. If we do, we won't all get better from integrative medicine. That's the nature of a syndrome like ours. However, if this treatment trajectory worked for one person, it will perhaps work for some others. Personally, that gives me hope for myself and for my POTSie brothers and sisters out there.
I am a little late with this post, but I am on the verge of dizzy-free right this moment, so it seemed like a good time to finally write this post.
Last Thursday was my two-year POTSiversary. It was a bittersweet day.
This is what the past two years has felt like — a big, dizzy blur. :) Photo credit: Smicko on freeimages.com
In one sense, I've been sick now for two years and have lost a lot: job, condo, money, independence ... my ability to wear a size 4. I became sick at the age of 29, and I am now 31. Something about that feels like more than two years, like I lost a chunk of my youth.
On the other hand, I remember that first day, week, month with POTS so vividly. While I am not quite where I want to be from a functional and symptomatic standpoint, I was absolutely miserable and scared in the beginning.
I remember laying on my parents' couch the first day my POTS hit. The tachycardia was intense and constant, no matter what position I was in. I was so lightheaded I couldn't sit up. I felt like I was on fire, and the shakes and muscle spasms were relentless. I slept maybe 2 or 3 hours per night. Taking a shower was the most challenging thing ever.
Looking back, I also now realize how my body told me what it needed. I was nauseous and had no appetite, but my mom of course was insisting I eat something, anything. For some reason, I wanted bacon. I remember my mom bringing me a plate full of bacon. That and Gatorade was all I wanted that first day. (Hello, salt and electrolytes!) I was so hot that I couldn't stop drinking Gatorade and water. When I finally saw a doctor who told me about POTS, electrolytes and staying hydrated, my reaction was basically, I can't help but do those things! It was my natural inclination.
Ultimately though, I have made it. I have made it two years with POTS. I have been through a lot these past two years, but I have survived. It hasn't killed me, and I am stronger. I am so thankful that God has brought me this far!
I'm sure you've all experienced the power of music firsthand. In an instant, a song can transport you to a time, place, memory or feeling. Music can lift your spirits or even help you wallow. Music can make you feel understood or be a source of strength.
There have been various studies with regard to music and healing. Music therapy is a growing field, and there are about 5,000 board-certified music therapists in the U.S., according to this CNN article from August of last year. One of the things I really love about music is that a single song can speak to people in so many different ways.
Photo credit: Stefan Gustafsson
www.stefangustafsson.com
After watching Carole King and Sara Bareilles perform two of their great hits together during the Grammys Sunday night, I was inspired to create what I would consider my POTS playlist. I have listed the tracks below, along with why it is on my playlist or the line that speaks to me the most. I will start, of course, with the two songs that inspired this post.
What would be on your chronic-illness playlist and why? 1. Beautiful by Carole King:"You've got to get up every morning with a smile on your face and show the world all the love in your heart." 2. Brave by Sara Bareilles: "Maybe there's a way out of the cage where you live, Maybe one of these days you can let the light in, Show me how big your brave is." 3. A Hard One to Know by Benjamin Gibbard: Mainly I just love this song, but this line seems especially appropriate, "I toss and turn but I just can't sleep." 4. Shake It Out by Florence & The Machines: "It's always darkest before the dawn." 5. Act Nice and Gentle by The Black Keys: "I don't need no luxuries, 'Long as you are understandin', I'm not difficult to please, Act nice and gentle to me." 6. For You Now by Bruno Merz: Just listen to this entire song. The whole thing is great. 7. Flying by Green River Ordinance: This song just puts me in a good mood. I think it is the fiddle... I'm a sucker for a fiddle. 8. We Are the Tide by Blind Pilot: "Don't you know you're alive?"
9. Waited by Kylie Rae Harris: "Well its got me all sideways, jumping the track, but this is my life, taking it back." 10. Calmer of the Storm by Downhere: While most of the songs on this list are more mainstream, this one is my favorite from the Christian music genre. Calmer of the Storm is one of those songs that has helped me through some really hard days. 11. The Sound of Settling by Death Cab for Cutie: "Our youth is fleeting, Old age is just around the bend." 12. You Can Come to Me by Helio Sequence: This is another song that has multiple lines I love, but I especially love, "Finding out that you what you want is not what you need." 13. That Old Black Hole by Dr. Dog: "I don't want to fight, but I'm constantly ready, And I don't rock the boat, but it's always unsteady." (Sounds like fight-or-flight and vertigo to me!) 14. One Little Light by Gary Jules: I really like this song in general, but of course I have to include a song on the list that mentions having no spoons. "No meteor, no moon, no cotton, no spoon, Just a little light in the sky." 15. Let That Be Enough by Switchfoot: "And all my sand castles spend their time collapsing."
16. Ooh Child by The Five Stairsteps: "Ooh-oo child, Things are gonna get easier, Ooh-oo child, Things'll get brighter."
I try hard to eat healthy in order to nourish my body and in hopes of coaxing it back to health. I don't associate myself with a specific label when it comes to my diet. Aside from not consuming dairy, I am not strictly paleo, vegan, raw, etc. I do love to read cookbooks and blogs by people of these dietary persuasions though! They offer ideas and recipes that fit well into my diet, so I am going to start sharing recipes on occasion that I have tried and enjoy.
This first recipe I am going to share is very easy and doesn't require a lot of time on your feet. Plus it is something you can make once then enjoy all week. I find that using a "spoon" to cook is much more worthwhile when it will be eaten for a few days.
This granola is inspired by Ella over at Deliciously Ella. I have mentioned her blog before. Seriously, check it out if you aren't familiar with her. She is super talented and even more inspiring. I didn't have all of her ingredients on hand, so I winged it with what I had.
Her original recipe would yield more than what my recipe did. I filled a 12-ounce mason jar with the finished product and ate whatever didn't fit. I probably really needed a 16-ounce jar, but I didn't mind taking one for the team and eating some on-the-spot. My adaptation appears below:
Pecan Coconut Granola
1 cup rolled oats
1 cup pecans, roughly chopped (or cute, itty-bitty guys left whole)
1/2 cup unsweetened shredded coconut
1/2 cup sprouted pumpkin seeds
1/2 cup raisins (add more if you would like)
sea salt to taste, optional
2 T. coconut oil
2 T. maple syrup
2 tsp. cinnamon
Preheat oven to 350 F.
In a bowl, mix together the oats, pecans, coconut flakes and pumpkin seeds.
In a small saucepan, heat the coconut oil, maple syrup and cinnamon until melted and combined. This only takes a few minutes; I whisked it to help it combine and keep it from burning.
Pour the syrup mixture over your oat mixture and stir to coat. Spread out on a baking sheet lined with parchment paper.
Bake for about 20 minutes, stirring a few times while it bakes (watch it closely so it doesn't burn). At this point, add a bit of salt of if you would like. Let it cool completely on the baking sheet, then you can mix in your raisins and transfer the granola to a jar or storage container.
Enjoy! I thought it was especially good with unsweetened, vanilla almond milk.
A few notes:
1. I was not exact at all with the cinnamon-syrup ingredients. I didn't feel like measuring, so I eyeballed it. It might have been a little more than the amounts listed, but you can't really go wrong with maple syrup and cinnamon.
2. I wasn't patient enough to wait for the oven to preheat, so I put the granola in before the oven reached 350 F. Had I waited, it might have been done before 20 minutes. Also, if you double this recipe or add to it, the timing might change.
3. I took my granola out when it smelled like the pecans were roasted. I didn't want them to burn, which nuts will do very quickly if you aren't careful. My granola still looked shiny like it wasn't dried yet, but it was fine once I let it cool.
4. Since the space in my jar was limited, I didn't mix my raisins in. I decided I would just sprinkle some on top one serving at a time.
5. The sea salt is totally optional. Ella doesn't include salt in her original recipe, but in true POTSie fashion, I like to add sodium where I can.
We are almost two weeks into the new year, which means we have been bombarded with talk of resolutions. Resolutions are often lofty and hard to keep, but there is still something freeing about making them. It is a way of recognizing that if there is something you want to change, add or subtract in your life, you can wipe the slate clean and go for it.
However, when you have a chronic illness, resolutions can have the opposite effect on you. There is often little you can control, and the things you would like to change, add or subtract are outside your realm of power. So should you just forgo this annual tradition?
Lots of snow and cold from the "polar vortex" this week, but even the solar lamp finds a way to shine without the sun!
I don't think we have to, but our resolutions have to take a different form and must be forgiving to our condition and abilities. For myself, I would like to read more (especially books about health), but I am not going to set a certain number of books for the year. Also, during weeks and days when I am feeling strong enough I will set a few mini goals for myself, but if I don't reach them no big deal. (Yes, taking a shower is a valid goal.)
I know. Those don't sound like very resolute resolutions, but setting expectations for ourselves and putting additional pressure on ourselves is really going to be counterproductive. It is easier to take baby steps and make progress when you allow yourself to be flexible and take the weight off of – what are essentially – self-imposed restrictions. Here is an example of how this works for me.
On Tuesday, I was feeling strong, so I ventured down to the basement to reacquaint myself with the treadmill. Speed would be determined by my HR, but I would aim for at least 10 minutes. My speed was fairly slow compared to where I once was, but I did walk on an incline. Including my warm-up and cool down, I walked for 29 minutes. Feeling good about this, I set a few goals for the next day: do my laundry, take a shower and try to get out of bed at 11am.
Just an epsom-salt bath when I was achey this week, but with the right imagination, it is a luxury spa.
I started off the day by failing at my wake-up time, which I figured I might. My sleep cycle has been a mess lately, and my fatigue has been extreme. I didn't let it ruin my other goals though. I was able to do my laundry, take a shower and clean up the kitchen a bit since my mom has been ill. I felt accomplished, but paid for my victory the next two days. I ached from head to toe, had a low-grade fever, was very dizzy and was exhausted. That means I did not set any goals for myself these past few days. My only goal was to rest and let my body rebound.
For those who are bed-bound, you can still set mini-goals for yourself. Maybe a goal is to do some stretches in bed or write down one thing per day that you are grateful for or even to get through a TV series you have always wanted to watch on Netflix. It all counts. The purpose of resolutions is to enrich your life in some way, and we all know its the little things that count the most anyhow.
Did you set any resolutions for yourself this year? What are they?
Bleary eyed and barely yet aware, I was coming out of an unexpected nap yesterday with sounds of the "Katie" show playing from the TV in the background. Katie Couric was doing a show about Aimee Copeland, who after an accident over a year ago underwent multiple amputations. I suddenly heard something that quickly yanked me back into consciousness. Aimee's mother was discussing the inevitable question of "why did this happen to Aimee and not one of her friends", and she said Aimee's response to this question was, "I’m glad it happened to me. I know I can deal with this better than they could."
Why did this jolt me so quickly out of my sleep? Because I have said that same thing before! As much as I wish I didn't have dysautonomia, I would rather be the one dealing with it because I know I can. Hearing someone else have the same connection to their life-given challenge was oddly comforting. While I can't begin to understand what Aimee has gone through, I felt a strong connection to her listening to her speak. While our struggles have been different over the past year, it seems we are both fighting through with the same philosophies.
Image from backinskinnyjeans.com
So, why me? Why you?
Because you can handle it. You have the strength and perseverance necessary; God made sure of that. I truly believe you can find or create good out of your struggles and challenges.
When it comes to finding purpose, keep in mind your intended purpose through these sufferings won't always equate to world-renowned acts or achievements. If they do, great! But no matter how small or grand the ripples of good you set in motion, they will always be extraordinary and for a beneficial purpose. You may not always know the effect you make on the world around you, but be certain you are making an effect.
The challenge I leave you with: Next time you feel the "Why me?" question trying to burrow its way into your thoughts, see if you can find a way to turn it into "I'm glad it's me!"
Today kicks off National Invisible Chronic Illness Awareness Week. The theme this year is "I choose to... (fill in the blank)". While no one with an invisible or chronic illness has chosen that challenge, we all still have the power to make certain choices for ourselves. Today, I choose to focus on the positive.
If you ask anyone who has a chronic or long-term illness, it is probably very easy for them to list the ways their condition has limited them and what it has taken from them. There are countless ways POTS has affected my life in negative ways, but it is more important and helpful for me to focus on the positive things POTS has given me.
As I was thinking through what POTS has given me, I ran across this blog post by Michael Hyatt. The questions he suggests asking amidst adversity are great. They are all worth ruminating on and may help you find a more positive perspective.
10 things I have gained from being sick:
1. Greater compassion: Hands down I have never felt more compassion towards others going through illness or other difficulties than I do now. There is an empathy and solidarity formed by first-hand experience.
2. Capacity to appreciate the ordinary: The simple things, even the ordinary or perhaps mundane parts of life, have so much more meaning to me. I never used to think much about taking a shower every day, sitting up in a chair or moving through my day without giving a second thought to what my heart was doing with each movement I made. But now, these are things I appreciate when I am blessed with them.
3.Better understanding of anatomy, biology and how my body works: I have always been more into words, language and writing than math and science. When you are faced with a syndrome that encompasses so many internal systems and symptoms, you have no choice but to become an expert on how it all works and fits together. I now enjoy the new things I will learn and the connections I will make during my appointments with my ND, which are as much about treatment as they are about education. Having a better understanding in these areas also allows me to have more intelligent, productive conversations with medical providers.
4.More time with my family: When you can't work and have to move back in with your parents at the age of 30, it can feel like your life is going backwards. However, I have really liked being able to spend more time with my family. It has been especially great to be closer to my baby nephew and see him on a regular basis. There is nothing more uplifting for the spirit than an innocent, sweet baby.
5. Deeper faith: Ultimately your spiritual journey is what this life is all about. My faith in God has become much deeper and stronger since becoming ill. This is something I would never trade away.
6. Ability to connect with wonderful people around the world: There are a few things in life that I consider universal -- smiles, laughter and suffering. There are people all around the world who are struggling with chronic illnesses just like me. Through online support groups, blogs and social media, I have been blessed to connect with some amazing and inspiring people from all over.
7. More time to read and write: Since I am not spending all my time working and socializing, I might as well spend more time doing two things I love.
8. Greater commitment to nutrition and health: Nothing will make you care more about your health than losing it. I always considered myself fairly health conscious, but now I am discovering nutrition and health in a more holistic way. Wellness means so much more to me now, and I will fight to regain it and keep it throughout my life.
9. Relinquishing the need to control: There is no time you are less in control than when battling with your health. You don't get to choose your symptoms or good and bad days. I have always been a planner and goal-seeker. While these are inherently good attributes, I was not always good at dealing with things I couldn't control. Being ill has demanded that I learn to let go and accept life as it comes. As a result, I have actually unlocked a greater strength than "being in control" ever afforded me.
10. Learning to trust my gut: Not only have I learned to listen to and trust my gut with regard to my health and daily needs, I have also learned to trust my gut in interpersonal situations. If I feel like there is someone I should reach out to, or something I should say to encourage, support or comfort someone, I no longer shy away from it or fear it might not be welcome. I accept that nudge as a sign that I am meant to act on my instincts.
What do you choose today? What have you gained from struggles in your life? Please share in the comments below.
I wrote an article for the health and wellness site, MindBodyGreen, which ran last Friday. If you are struggling with coping, check out 7 Ways To Cope With Chronic Illness.
I also encourage you to peruse the other articles on the site. There is a lot of great reading material.
Every day I soak my feet in Epsom salt. Epsom salt is a naturally occurring mineral compound also known as magnesium sulfate. Right there in the name you can see that it contains two of the primary electrolytes: magnesium and sulfate. Epsom salt can be used as a soaking agent or can be ingested as a saline solution. One note of caution, however, as I mentioned in the previous post, taking Epsom salt internally (or any source of magnesium internally) can have a laxative effect. You do not run this risk when you use it for soaking.
The most well-known benefit of Epsom salt is to ease sore, achey joints and muscles. In addition, the magnesium in the Epsom salt can alleviate muscle spasms. Basically, the Epsom salt will provide the same benefits gained from both magnesium and sulfate. We covered magnesium in the last post, but what about sulfate? Sulfates help form proteins in the joints and intestines and aid in detoxification.
I find soaking in Epsom salt really helpful and a low-cost therapy. I don't suffer from muscle spasms as often, and it is a relaxing way to ease tension and aches at the end of the day. I definitely notice if I miss a day or two.
Admittedly a poor photo, but this gives an idea of what I use to soak my feet.
How to Use Epsom Salt for Soaking
To use it for soaking in the bathtub, dissolve two cups of Epsom salt in hot water. I know for most POTSies a hot bath is a no-go thanks to heat intolerance and vasodilation. You can either wait for the water to cool down or just soak your feet, which is what I do.
To use it for a foot soak, I dissolve one cup of Epsom salt in hot water. Instead of using the bathtub, I use a smaller plastic tub that is the perfect size for feet. This way I can sit comfortably on the couch while I soak rather than teetering precariously on the edge of the bath.
Whichever way you choose, make sure to soak for at least 12 - 15 minutes. Also, if you want to get fancy or add an aromatherapeutic effect, you can put essential oils into the water. Epsom salt can be drying, so I would suggest using moisturizer afterwards.
Another option if you have a sore muscle that you want to target specifically, dissolve a cup of Epsom salt in a sink of hot water, soak a towel in the water and use the towel as a hot compress.
Have you tried using Epsom salt? What benefits did you experience? Let us know in the comments below.
I know that I briefly mentioned the importance of electrolytes in a previous post about hydration, but this is an important topic that is worth looking at more in depth. Plus, my POTS journey has been evolving and my relationship with electrolytes has changed. While my personal approach has changed, I don't feel this discounts any previous tips I have provided on food or drinks that provide you with your high sodium needs. I do believe there are times or stages of dysautonomia (especially in the beginning) where you simply can't function and need quick fixes. If these traditional methods of salt intake and downing Gatorade are working for you, then please keep doing it. If it isn't working for you, then you may want to consider trying a different route.
Why are electrolytes so important? Electrolytes are key components in hydration and cell function within our bodies. An article by Dr. Lynne August explains that our cells act as batteries within our body and electrolytes are what recharge these batteries. (1) When these batteries aren't able to work at their full capacity, it can cause or exacerbate issues with irregular heart rate, dizziness, muscle contractions and fatigue, just to name a few.
POTS patients tend to be more prone to electrolyte imbalances and depletion. For one, many of us suffer from low blood volume (hypovalemia) and/or blood pooling, which is a contributing factor in low blood pressure and tachycardia. The true marker of a POTSie diet -- increased salt intake -- is meant to help increase our blood volume and blood pressure. In addition, the salt helps us hydrate as too much water, without taking in salt and other electrolytes, will flush the body of its electrolytes and cause further dehydration.
This is where the Gatorade, Pedialyte and Nuun recommendations come in. I used to drink 32 ounces of Gatorade a day, but the amount of sugar I was consuming just through sports drinks always made me uncomfortable. I kept reading that refined sugar was bad for your nervous system, which made me fear I was taking one step forward and two steps back. When I shared these concerns with my PCP, she agreed, but didn't know what alternatives to offer since I didn't feel I could survive the day without Gatorade. This is where my ND stepped in to help me find those solutions.
What are the primary electrolytes?
When we think of electrolytes sodium and potassium usually come to mind since they are prominent in sports drinks. In addition to sodium and potassium, the other four primary electrolytes in the body are magnesium, chloride, phosphate and sulfate.
Sea Salt
Instead of table salt, I am now using sea salt exclusively. Sea salt not only provides you with your sodium needs, but it is less processed or unprocessed (depending on the source) and doesn't include the additives of table salt. As a result, sea salt contains trace minerals -- including traces of the primary electrolytes. Even though the type of salt I am using has changed, my use of it has not. I still generously salt everything I eat.
Personally, I have been using Celtic Sea Salt at my doctor's recommendation.* This brand has no additives and is unrefined and unprocessed. I really like the flavor it provides. While it is pricier than standard-issue table salt, a one-pound bag will last me at least four months.
Electrolyte Drinks
Obviously, even if you choose to forgo sports drinks, you will want to make sure you drink more than just plain water to help maintain and replenish your electrolyte balance. Sometimes I simply add a pinch of salt to my water bottle. In addition, Emergen-C is a good way to add electrolytes to your water. My doctor has me using Emergen-C MSM Lite* to keep the sugar intake low. Aside from providing three of the six primary electrolytes, it also gives me my daily vitamin C for immune support and B vitamins for proper metabolism and energy.
While I haven't used it, so I can't speak to its palatability or effectiveness, I did notice in researching for this post that Selina Naturally (the brand that produces Celtic Sea Salt) has an electrolyte powder. This powder is sugar-free, gluten-free, non-GMO, vegan and contains all six primary electrolytes. The nutritional facts and ingredients look good, so I plan on asking my ND about it during my next appointment. When I am having a "POTS attack" or an especially weak day, I sometimes feel like the jolt from Gatorade is the only way out, so I would love to have a more potent, natural electrolyte mix for times when I am really struggling.
Magnesium
As POTSies, we talk a lot of about sodium, but I have found magnesium to be a very important electrolyte for me. When I first got sick, I went to my PCP, and she ran a full workup to see what she could find before deciding which type of specialist I should try to see. Based on my bloodwork, she suggested I take vitamin D and magnesium supplements. In the beginning my muscle twitches, tremors and tachycardia were constant. I was not diagnosed or on prescription medications, but I would notice if I was extra shaky or my tachycardia was out of control, my system would calm down to more bearable levels shortly after taking 250 mg of magnesium.
According to an article by Dr. Christiane Northrup, magnesium is essential for over 300 enzymes in the body which work to "produce, transport, store, and utilize energy". Some of these functions include protein synthesis and vascular, nerve and muscle health. (2)
Supplementing by taking magnesium orally is one option, and something I still do from time to time when I am extra "shaky". If, with your doctor's support, you are supplementing with magnesium, it is best to take smaller doses at different times of day as magnesium can have a laxative effect in large doses. For daily therapeutic effect, I soak my feet in an epsom salt bath. (I will do a separate post all about epsom salt later this week.)
Making a point to support your body's electrolyte balance may not be a cure for POTS or other chronic conditions, but an imbalance can certainly contribute to your symptoms and feeling unwell. As Dr. Lynne August said, "Use a chronic condition as an indicator light on your dash -- it's time to cultivate health, starting with charging your cell batteries." (1)
And since the "Electric Slide" has been running through my head the entire time I was writing this...
Illness is hard. I mean, really hard. It assaults every fiber of your being... physically, emotionally and mentally. Invisible or visible, it doesn't matter. Suffering is suffering. Ideally, no one would have to struggle with and feel the pains of illness, but unfortunately that is not the reality of our world.
On the plus side, however, illness gives everyone involved -- the afflicted and their friends and family -- a chance to put love, mercy, faith and compassion into practice. Really when it comes down to it, those four things are the essence of life. We should embrace the chance to allow them to flow out abundantly from ourselves unto others.
Personally, being ill has honed my recognition of love, goodness and beauty in the world and the people I encounter. I'm more reflective. I see people and situations differently. Even people I know well, I feel myself caring for them more deeply and seeing their true beauty shine through.
It is very true that illness will show you who your true friends are, and not everyone will make the cut, but those who do stand by you will become all that more dear to you. While I have certainly felt the hurt of being sick in a healthy person's world, and I can tell some people don't "believe in" my symptoms, ultimately I have had a group of friends really stick by me and try to understand. They will never know how much that has meant to me and how much I love them for it. Additionally, my family, especially my mom, has been so amazing and loving. I know that they have my back and will stand by me, even when it is hard on them too. Yes, I am so very blessed.
What really breaks my heart are all the stories I hear from fellow POTSies whose family is annoyed with them or don't believe in their illness or friends who disappear because "they aren't fun anymore". There are numerous stories of eye rolling, passive aggressive comments, or physical and emotional abandonment. This really and truly saddens me that anyone would be treated this way.
So for any doubters out there, let's set the record straight...
POTS is real. It is not anxiety. It is not hypochondria. It is a true syndrome with an unpredictable onset of symptoms, pain, exaggerated physiological functions and daily inconsistencies. Many of the symptoms, while not life threatening, are very scary and often mimic life-threatening events. Please believe your loved ones and trust that they understand their own body. Even if you can't truly understand what someone is going through, offer them compassion and don't try to invalidate their illness or their limitations. We are entrusted with people in our lives to take care of each other, so please accept that responsibility for those around you and be kind to one another.
Let us all try to make a concerted effort to keep those who are ill or struggling in our thoughts and prayers and reach out to them. I can tell you from my experience that there is no greater renewal of hope than a card, visit, text, email or phone call from a friend. It keeps me going and gives me a reason to laugh, smile and know that I am still a part of the world around me.
See the resources below if you know someone with Dysautonomia/POTS and want to learn more:
I guess I took another blogging sabbatical. As usual, it was POTS' idea, not mine. Oh well, let's dust ourselves off and get back to it.
Integrative medicine. Holistic medicine. Naturopathic doctors. I know these phrases may make some skeptical or uncomfortable, but I have to say, I am becoming a believer in these alternative options. Of course, as with anything, there are probably some quacks out there; but let's be honest, I have felt that way about some of my Western medicine doctors as well.
I began going to an ND in May of this year. I was originally referred to her by my PCP, who dabbles in holistic medicine. My PCP wanted me to go for a nutrition consult, since my vitamin deficiencies were a wreck, and my symptoms were all over the map.
Since I was a new patient, I had to fill out the health history forms, mark down my symptoms, diagnoses, etc. I walked into her office, and she hit the ground running. This was no longer just about nutrition. She said it seemed pretty clear that I was suffering from adrenal fatigue. Since that first visit, we have also began treating intestinal issues (which started up about 3 years prior to POTS), yeast overgrowth, chronic sinusitis and, most recently, gall bladder issues. So she and I have a lot of balls in the air and of a lot of rebalancing to do in my body. For anyone considering the holistic route, here are some things you will want to consider up front:
1. Find a doctor you can trust. This is super important. Do your research and trust your gut. If you during your first visit with your ND, you don't feel comfortable and trusting, then find another doctor. In my case, I like the ND I was referred to. She immediately started putting a treatment plan together, AND she knew what POTS was. My ND had been an MD previously, but then went back to school to become an ND. For some reason, this makes me more comfortable with her since she has experience on both sides of medicine. Also, she is so accessible and responsive. I can email or call with any question or issue and have a reply within a few hours. It is just a much more personal experience.
2. Be ready to put in the time. Even with natural medicine, there is not a magic bullet. Healing takes time, so you will have to be patient. After 3 months with my ND, am I all better? Nope. Is my life still really limited? Yep. Have I turned some corners and made slow improvements? DEFINITELY. A few examples, I am off my side-effect-ridden beta blocker now... for real, and my BP and HR are stable more often than not. I can spend most days sitting on the couch instead of laying on it. My blood doesn't pool as severely or as quickly in my feet. I can shower more than once or twice a week. I can prepare my own meals. Sure, these are simple things, but they are wonderful.
Aside from giving yourself time to heal and being patient with slow progress, the process itself is very time consuming. My diet is pretty strict, which takes time and preparation. I can't just go grab the first salty, processed thing I see in the kitchen. In addition, I am on a lot of supplements right now. I take about 48 capsules a day, plus medicinal teas. This, along with eating on schedule, quite literally takes a lot of time. Taking this approach to healing is a big commitment.
3. It is not cheap. Nothing about this is cheap. Between the doctor's appointments, supplements and "health food", there are a lot of out-of-pocket costs, which are not covered by insurance at all. This is definitely a financial strain when there is no income. But, honestly, none of my doctors who are covered by insurance have been trying anything at all to help me, so I feel it is worth the money if I am able to heal my body in the long run. I mean, I spent thousands at Cleveland Clinic last year and that really only got me a diagnosis.
4. Be open. You will need to open yourself up to a different perspective and to the idea that natural products and diet can be used as medicine. The famous quote by Hippocrates, "let food by thy medicine and medicine be thy food" is really what this is all about. But if it isn't something you truly believe in, it will be a waste of your time. Also, be open to learning new things about your body and how it works. My doctor is very good at explaining the process at work in my body with charts and diagrams. I actually really enjoy learning in such a practical way... plus I am much better at answering biology and anatomy questions on Jeopardy now.
Have you considered taking the natural route or had any successful experiences with holistic medicine?
Life with POTS is all about being paradoxical. I'm overheated, but my feet are ice cold... My heart rate sky rockets, while my blood pressure plummets... I'm beyond exhausted, but I can't sleep. Then comes the real kicker... you are too dizzy to stand or even sit up most days, but your doctor wants you to exercise. According to a heartwire article about research done by Dr. Benjamin Levine, exercise helps to improve "upright hemodynamics, normalizing renal-adrenal responsiveness, and improving quality of life in patients with postural orthostatic tachycardia syndrome (POTS)".*
I understand fitness, and my workouts pre-POTS consisted of hitting the park or the treadmill for a 3-mile run. POTS is a game-changer though. My body and heart no longer work or respond the same, so just pushing through a standard workout isn't the answer.
I was referred to the cardiac rehab program at Cleveland Clinic. The head doctor and the exercise physiologists in the rehab department are great! You can certainly do your exercise training at home if insurance, money or location/transportation doesn't allow you to work with a professional. However, I would highly recommend at least consulting with a cardiac rehab program if you can. They helped me plan a course of action and determine my optimal heart rate targets for my current condition.
8 Tips for Working Out with POTS: 1. Start slow! Obviously there is a certain amount of mind over matter in all of life's challenges, but the typical athletic mantras of "just do it" or "no pain, no gain" aren't applicable to reconditioning with POTS. Don't try to do too much too fast. Even if you can only do a few minutes at first, that's ok. Just build from there at a pace you can handle.
My HRM even knows to wish me Happy
Birthday!
2. Use a Heart Rate Monitor. There are various heart rate monitors on the market from basic to those with more advanced functions. My exercise physiologist told me the Polar brand with a chest strap was reliable and accurate so I bought a Polar FT4 from Amazon. I love it! Not only can I make sure I am not pushing myself out of my prescribed heart rate target, it is nice to see when a certain exercise intensity and duration is becoming too easy. This helps me gauge when it is time to move to the next level. 3. Monitor Blood Pressure. During cardiac rehab they would take my blood pressure reading before and after my workout and once during. This isn't as easy to do on your own, but if you buy an at-home blood pressure cuff, you can at least check it before and after. Keep track of these numbers along with your heart rate readings so you can monitor progress. Remember if you are suffering from low blood pressure after your workout, elevate your feet while you recover and get some salt in your system. 4. Hydrate. Back in my running days, I would workout for 30 minutes or so and not even think of drinking water until I was done. Not any more. It is really important to drink water before, during and after your workout. It helps me fight off my heat intolerance, dizziness and unstable BP while working out. We just simply need more fluids as POTS patients, and it doesn't change during our workouts. If you use electrolyte drinks, definitely include them during your workout routine, or at least add a little sea salt with your water. 5. Wear Your Compression Socks. I am not always good about wearing my compression socks around the house, but I will not workout without them. You want to keep your blood from pooling during your exercise as much as possible to help support you from losing to your orthostatic intolerance. 6. Keep Cool. If you suffer from heat intolerance like me, heating up during exercise can induce lightheadedness and wear you out fast. Make sure you are wearing cool, breathable workout gear. I advise sticking to shorts and tees or tanks. When it comes to my exercise clothes these days, sweatpants and long-sleeved shirts need not apply. I also make sure to use a fan and even a cooling neck wrap if necessary. 7. Exercise Recumbent-Style or Seated. We already know that standing is tough on our vitals and causes increased blood pooling. This means working out on a recumbent bike, rowing machine or on the floor is perfect for POTSies. In cardiac rehab, I rode a recumbent bike before moving to the upright bike, and then finally I was walking on a treadmill. If you don't have access to a recumbent bike, doing stretching and strengthening exercises seated or on the floor is a great at-home alternative. I downloaded a 20-minute workout from Exercise TV on iTunes. It is called Gentle Pilates and is a floor workout. Some of the warm-up is done standing so I either skip it or try to modify it while sitting on the floor. 8. Be Patient and Don't Get Discouraged. You are not going to get stronger overnight. Even though I was able to build up to walking on a treadmill at a healthy clip for 45 minutes, it took months for me to reach that point. There were lots of hurdles and setbacks along the way. Nothing about it was easy. There were days I had to stop early or leave rehab in a wheelchair. If at first you don't succeed, try, try again.
Some closing motivation by Queen...
* Taken from http://www.theheart.org/article/1241927.do
