Dysautonomia and Salt: A Love Story

Disclaimer: My degrees in the Humanities do not constitute a medical degree, and I cannot provide medical advice. Discuss any treatment you pursue with your doctor first

One of the first things you will hear after your diagnosis of Dysautonomia is to increase your fluid and salt intake. There’s nothing quite like the cognitive dissonance when your cardiologist tells you to begin a high sodium diet. The mechanisms that cause this problem are complex though simple: when you stand your body must compensate for gravity by increasing your heart rate to keep blood flowing to vital organs; your blood pressure drops a bit and your heart rate increases slightly. The autonomic nervous system regulates these automatic functions that happen in our bodies. At least this is the case for those who do not have a broken nervous system. With POTS, the body cannot compensate for gravity quickly enough. Blood pressure drops and the heart rate accelerates rapidly to keep blood moving to vital organs. With Dysautonomia, the longer you stand, the more blood pools into your legs and feet, making it difficult for the body to get blood to your heart and brain. This is why syncope (fainting) can be so common.

Low blood pressure can be very common with Dysautonomia. Salt helps the body hold onto fluids and raise blood pressure to allow the body to maintain some of the homoestatis the Dysautonomia-free take for granted. Many with Dysautonomia have hypovolemia, low blood volume, as well. Often salt and fluids are the first lines of defense doctors mention even before they discuss medication to manage the symptoms. Many with the condition receive regular saline IV infusions. I'd cut off my left arm to get access to this therapy, but my doctor has forbidden it. My doctor is a leading expert on POTS and has said he is wary of the efficacy of this therapy. I hope he changes his mind someday honestly. 

When I got ill and didn’t know I had POTS, I was weak, I lost about 15% of my body weight, and I could not stand for longer than a few seconds without feeling like I was going to faint. I went on an extreme diet of quinoa and vegetables for a few weeks to see if that would stabilize my system. Absolutely no sugar and no salt. I know now that was a mistake. I wasn’t receiving any medical care besides being told I was just crazy, so I was taking matters into my hands out of desperation. That entire time I craved bacon. I just wanted handfuls of bacon all the time (who doesn’t, right?). I think that was my body telling me I needed salt.

Bacon forever

Since getting a diagnosis, I’ve tried to perfect my regimen of salt and fluids and I wanted to share what I’ve learned over the last few years. Managing symptoms is often filled with trial and error—for the patient and the doctor. Since Dysautonomia presents uniquely for each individual, finding the right regimen can take some time. I’ve tried many forms of electrolytes and salt. Every single day is a desperate quest to get hydrated and be cool and upright like everyone else. I always have at least one drink at all times and usually 2-3 I'm drinking at once. Husband calls it "getting my drank on." This is how a POTSie parties. 

Salt

Salt may be your new BFF and trusty companion. It will always be there to help you get back up and keep fighting. My doctor recommended adding salt to my meals and I keep some sort of salty snack with me at all times.

Many with Dysautonomia become salt connoisseurs, purchasing different types of salt beyond the standard table salt. One type that many love and has become popular with the health-conscious is pink Himalayan salt. It looks like bath crystals but it’s actually salt. It’s been touted as a wonder product in the health community but I can’t find any reputable sources that provide specific evidence for the health benefits (if you know of any please let me know). Pink salt has other minerals besides sodium, making it closer to an electrolyte than a pure salt. I have started using it but haven’t noticed a difference with Kosher salt, which is what I usually use.

The drug most commonly used to treat Dysautonomia and its many forms is Florinef. I have a love-hate relationship with this drug. Many are completely dependent on it to treat syncope (fainting). It helps the body hold onto salt and fluids, which raises blood pressure. Some are advised to take salt pills in addition to the Florinef. I use Salt Sticks because my doctor explained they are less harsh on the stomach than ThermoTabs (which I have but haven’t tried yet). They are designed for athletes and have other minerals in them. My doctor also recommended taking one before I exercising. There is no hope of exercising without salt for me and for many with the condition.

There are drinks and snacks you can use to get salt as well. Some drink broth, pickle juice, eat pretzels, or pour salt onto fruits or vegetables. I drink at least one V8 a day, and when I’m feeling my worst a V8 provides instant relief. V8 has potassium and other vitamins in it as well, giving it some electrolyte properties. I keep a can in my purse at all times because I’ve had too many emergencies without it. I also eat salted almonds all day long.

Electrolytes

Our bodies rely on a careful balance of electrolytes to function, and with Dysautonomia the body struggles to maintain this balance. Drinking excessive amounts of water can flush the body of minerals, and Florinef may help the body hold onto salt but it can leech potassium and calcium from the body. Salt and water are not enough to maintain this balance, so electroyltes are essential in your arsenal of functionality because they give the body a mix of sodium, potassium, calcium, magnesium, other minerals to hold onto fluids and keep this balance. This is a list of different electrolytes I’ve tried but I recommend experimenting to see what works for you.

I’ve tried so many different types of electrolytes through the years that I’ve lost track. The most popular electrolyte on the market is Gatorade. I CANNOT stand the taste of Gatorade so much that I would drink it only out of pure desperation. In fact, during my last ER visit the doctor insisted I drink Gatorade before I could leave and I forced it down begrudgingly. It’s also filled with sugar, which is a common problem among the popular forms of electrolytes out there.

Finding the perfect electrolyte has been a Goldilocks endeavor to figure out which one is just right: not too expensive, provides lasting relief, tastes ok, not too much sugar, and easy to access. Pedialyte has been my go-to electrolyte for two years. It has all the minerals, lower sugar than Gatorade, and makes me feel instantly human. The problem is it’s prohibitively expensive. One bottle costs about $5-6. I would typically drink at least ½-1 bottle a day and on the days when I can’t get off the bathroom floor, I would drink two bottles. I don’t have a Starbucks habit anymore, but this Pedialyte habit became just as expensive.

This is about two months worth of Pedialyte bottles I drank

So I’ve been trying to find something else. I used to use Heed, a powder electrolyte, and mix it in tea and put it in a tumbler when I was teaching. It became less effective and didn't provide what I needed. That’s when I switched to Pedialyte. Powder electrolytes are great for mixing into water or other favorite drinks, and they have the added benefit of portability.

Many in the Dysautonomia community swear by Normalyte. From what I have seen, it seems to be the most popular. I gave it a try a few months ago and only made it through half a cup of it. It was too harsh on my stomach. My insides hate almost everything, and the GI symptoms are my most difficult POTS symptom. I believe it was the citrus flavoring that was the problem. I let my husband try it and he immediately proclaimed, “it tastes like the ocean!” I did not like it but many people use it exclusively. The makers of Normalyte are even working with Dysautonomia International to create a product designed just for Dysautonomia patients. When they do, I will happily try it again in support of this effort.

I also tried RecoverORS, which is marketed as “Pedialyte for adults.” Perfect, right? I also only made it through part of a glass of it. It was also a little harsh on my stomach. If you don’t have a delicate flower of a digestive system like me, these may work for you. They meet all of the other requirements, but I just could not tolerate them. I’ll keep them on hand for emergencies.

I had read that many also use Nuun tablets as their go-to electrolyte. I decided to give it a go about a month ago. Well, I haven’t had any Pedialyte in all that time. Nuun made all my dreams come true! It meets my Goldilocks standards and I haven’t looked back. I like that it’s also portable and comes in many flavors. It’s also much less expensive than Pedialyte at about $17 for 4 bottles of 12 tablets on Amazon. I’ve been drinking 1-2 tablets every day.

If you want a significantly cheaper option, you can also create your own electrolyte solution. You can find many recipes online, such as this one. 

Some drink coconut water regularly as well because it also has electrolyte minerals in it. You can find coconut water in most stores so it is very accessible. 

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So if your doctor tells you to increase your fluid and salt intake, you have a lot of options to do this and help your body try to reclaim a semblance of homeostasis. I recommend experimenting to see what works best for you and don’t give up hope that you can find a regimen that can help you manage your symptoms.

Trying to fix feeling terrible and faint-y with some Nuun, V8, and tea. From my couch to yours, cheers!

One More Test

I’ve been dreaming about quitting my day job as a disabled couch barnacle to be a more productive member of society again, go back to teaching or become an archaeologist, a scientist, or a jazz vibraphonist. Or all of the above.

But in the meantime, I’ve still got work to do. I’ve been writing about the saga of getting a firm diagnosis for likely Myasthenia Gravis for some time now and mentioned that I had another test last month at Stanford.

I had hoped to come home maybe with something definitive. A label to provide a tangible explanation.

But it didn’t happen.

I haven’t written about it because I needed to try to get my brain around it, try to logically work through the anger and frustration, so that I don't unleash it into the world. No one needs to see that. I was in a dark place last month and the holidays weren’t the real reason I took some time off from writing. I was seriously depressed. I’m doing a little better now but it waxes and wanes. It’s something I’ve battled my whole life and this strange ride through illness really amplifies it. Not even all the chocolate in the world can pull me out of it, but a little doesn’t hurt.

My husband and I made the long trek to Stanford so that I could do a Single Fiber EMG, an EMG that is specific to MG diagnosis. It wasn’t the test that disturbed me (more giant needles. Been there done that. Whatev). My doctor said that I couldn’t take Mestinon for 24 hours. I’ve mentioned before that I’ve been having a lot of difficulty with breathing, a common symptom of MG. More than anything, the Mestinon is helping this symptom. I’ve grown fond of breathing. I’m accustomed to it now. Please don’t take it away.

I had already cancelled this test once. It had to happen. I booked us a hotel for multiple days. I can no longer make the trip to Stanford in one day. The hospital is only about 2 hours away, but with Bay Area traffic, we often spend 6-7 hours in the car. Along with a few hours for an appointment, it’s just way too much for me now. Sadly, my body requires that I treat it like the delicate flower that it is. I needed extra days this time so I didn’t have to travel while coming off the Mestinon. I bought some oxygen designed for athletes. I packed some books, some movies, my shower chair, my wheelchair, and we said goodbye to our cats and headed out.

My husband is a master organizer and packer. All those years paying Tetris really paid off for him

I splurged a little on the hotel since we had to stay there a few days, and it was worth it. It was an adorable little hotel and each room had it’s own enclosed patio. They even gave us the handicapped room, though I think the only difference was that it had a shower chair. We ate over-priced, underwhelming take out, re-watched The Lord of the Rings, my husband slept all day, and as the Mestinon wore off, the breathing difficulty and weakness intensified. Yet, I didn’t have to do anything but sit in that hotel room, read, and hydrate. It wasn’t a vacation but it was definitely ideal.

On the day of test, I put on my finery (workout pants and a loose fitting sweater) and we headed to Stanford.

They called me in and told me to lie on the table. I had flashbacks to exactly a year earlier when I did autonomic testing and a regular EMG in the same room. I thought that EMG was a breeze. They warned me that this one would be more painful and take much longer. They weren’t kidding. The needle had to be placed deep in the muscle and held for 20-30 minutes for each reading. I had to slightly flex my ankle or leg so they could get a reading of how the muscle was responding. By the end, I was convinced I had sprained my ankle. Once they removed the needle, it snapped back. It was fine.

They told me to dress this way so I couldn't get my #hospitalglam on unfortunately

My doctor oversaw the test but it was a different doctor I had never met before who performed it. My doctor came in periodically, making jokes and being jovial as usual. When they finally finished, he read the results. “Slightly delayed but normal.”

 Everyone in the room turned to me and said “Aren’t you relieved?”

I was not. No. I was not. It didn’t matter what the results were. There’s no way that I can accept losing most of my mobility rapidly over a year as “normal.” Or waking up repeatedly in the middle of the night because I’m not breathing as “normal.” What I’m living is anything but “normal.”

Honestly, I wanted to scream. I had made a detailed list of my symptoms before the test since I hadn’t been able to talk to this doctor since May. I wanted to tell him about how much I have declined since then. How I can barely leave my couch or bed. I just wanted to be heard.

Someone in the background said “your next patient is here.” They wrapped everything up and my doctor started leaving. I asked him to wait and tried desperately to compose myself. I was angry and frustrated. I hadn’t gotten a chance to say anything. All those notes I made and I had to try to quickly condense it into a few seconds.

I work hard to maintain a calm, collected exterior in appointments and tests. This is important so you can communicate and to avoid that pesky label of being “overly-anxious.” I lost my cool. When my doctor looked at me, he must have seen it because he asked me, “are you going to punch me?”

I tried to explain the symptoms I was experiencing and my confusion. I had tested positive for the antibodies for Myasthenia (which aren't a false positive for anything else), I had the symptoms, and they were already treating me successfully for it. If it looks like a duck, quacks like a duck, isn’t it a duck? He explained he was hesitant to provide that diagnosis right now. He doesn’t want me to have to start taking a long-term steroid. I understand this, but I don’t understand why we can’t just put aside the song and dance and just finally label the darn thing. 

He said we should do the antibody test again and perhaps the results of that would change the diagnosis and mentioned I should do pulmonary function testing. The results of my antibody test showed that they have doubled. I should probably contact him to ask about it, but I haven’t. 

I knew better than to have such high expectations for one test. This was one test in years of endless testing. I forgot that this is a process. There are often no delineating lines between symptoms, testing, diagnosis, treatment. They overlap and intersect. But this one time, I just wanted something solid. Just this one time. For once.

I was in bad shape at the end of the test. I was off my medication for over 30 hours, had just been tortured, and was exhausted. Yet, I still deeply regret losing my cool. Often when you are doing testing and even during appointments sometimes, you are just a body in a room. Doctors talk about your body to each other in front of you. Motion to your presence. You sit there silently trying to absorb the medical babble to listen for something familiar or understandable. The process can be incredibly dehumanizing.

I don’t regret trying to make my voice heard. The physical and financial costs for me to get to that table were significant for my husband and I. I don’t get to see this doctor again until May. I can’t keep waiting. I can’t keep suffering with no answers and no response. I wanted to be heard. I wanted to maintain my humanity and give voice to the experience of this body.

Another disappointing test. I cried most of the way home. My husband keeps asking “why does a diagnose matter so much?” I wrote a post about it here, but there’s more. There’s something very material about a diagnosis that counterbalances the nebulous, invisible experience of illness. It’s an explanation, a satisfying answer for my broken body and spirit. It isn’t the end game, but it’s a means to move onto the next stage in the journey, open possibilities for treatment, and I could finally put the label on documentation.

So I came home and went back to my job being a couch barnacle. Maybe I’ll make employee of the month soon. I'm still waiting and waiting for some answer. Still dreaming and fighting for a better tomorrow still.

Next week I have another test, pulmonary functioning test. I hope that I can finally have some proof for my breathing difficulties, but I’m not holding my breath (see what I did there). One more test. Not the last surely. Not the end of this journey, with miles to go before I sleep.

The Invisible Decline

I am working on other posts, especially ones that I think are helpful. I’ll start one and then abandon it. I guess I need to honestly discuss what I’m living. I don’t want to talk about this but I think I need to get it off my chest before I can move on—this is real. This is true. This is now.

I’m living the invisible decline. I was hoping when I left work that things would plateau a bit or I could at least regain some sort of control, but I’m still learning that control is an illusion. I have always thought since this thing started a few years ago that things would eventually improve. Many of those with chronic illness live with this hope despite declining. I want to pretend that everything is ok all of the time and be a rock star and just go with it.

I see friends, family, acquaintances, doctors, people, and I look the same to them. I look like the same person I was three months or a year ago, but I’m not. I continue to decline—decline with no real explanation. The things I could do just two months ago, I can’t right now. I’m still hoping to reclaim them and am continuing to work hard to do so. My symptoms continue to worsen. The bright spot is the medication I recently started is abating some of it and physical therapy is giving me some strength back. I still have hope that my doctors can make more sense of this puzzle.

I’m grieving and I’m adapting and it’s a slow, painful process to live through. But the decline isn’t completely invisible. If I leave the house, I need the wheelchair almost all of the time. My energy only lasts in short bursts and then I crash very hard and don’t recover for hours. I at least have cats who are willing to snuggle during that recovery time and a husband who never questions what I am experiencing.

I had a wonderful, beautiful Thanksgiving with my family last week that I am immensely thankful for. That day was a real gift. At 8:30 I hit a wall really hard and my sister said, “When I got here you looked good, now you look completely different.” It wasn't invisible. I peeled myself off the couch and my husband drove us home. I feel so much gratitude about making it that long and getting to really enjoy that time.

I don’t always feel sad about this invisible decline. A lot of the time, I’m just trying to adapt to it. I wasted a lot of energy the last year or so fighting it. I don’t have the energy now and maybe that’s a good thing. Honestly, I'm feeling more content with life than I have in a long time because I'm learning how to accept and adapt.

A few weeks ago, I wrote this is in my journal as I way to try to cope. It’s mental dumping to just say what I need to say about it so I can analyze it more clearly. This is the harsh reality of living the invisible decline. I know there are many Spoonies out there in the world who also are living it. So many of them out there. I've heard their voices and joined their struggle. The sense of powerlessness can be overwhelming, but take comfort that all of us, every living thing on this earth is powerless in some sense, and that’s ok. We don't have to succumb to it. Powerlessness doesn't have to define you. I hope these words find you well.

Sinking. Like I’m sinking into quicksand and I’ve lost the strength to pull myself out. Every time I try to adapt to what I’m able to do, the peg moves lower.  Is this life now? Sometimes if I look into the future, it will swallow me whole. I can’t think about it. I can only adapt to each moment. The decline feels like some sort of moral failure. What am I doing wrong? Am I not doing enough? I push myself so hard every day to try to reclaim my treasure, always searching for what I’ve lost but it’s left no trace. No crumbs to follow. Like a weight is tied to my shoulders and I’ve been thrown overboard. My markers of identity have been washed away in a sea of illness. My achievements, my titles, my earnings. Let the tide just pull me in. Wash over me. Let the strings of the universal design pull and guide me. Because I can’t fight it anymore. There’s a new path somewhere. If I hold on. Just hold on.

Feel this tug in the back of my navel. But that’s not what it is. The darkness wants to subsume me. But that’s not what it is. This is grieving, growing pains, and the phoenix rising from the ashes into something new. Something transformed. Sometimes the choice is made for you and you have to make your life into the shape of something new. I’m still pondering that shape, or the universe is pondering it for me. It’s an exchange, a collaboration. The darkness stares back at me, always trying to win. Always trying to cheat me and lie, make me believe it’s too much. That there is no winning. The darkness can win sometimes but not all the time.

I have faith. Such faith because I’ve seen the darkness many times and made it to the other side, sailed a ship straight through it to a serene shore.

I’ll wake up tomorrow. Open my eyes and let the day take me where it will. I will feel gratitude for everything I have and everything I’ve been given. I’m free to accept that this is what’s happening to me. This is what life is. We continue, beating on, against the currents. There is strength and power in this.

I’m figuring out what this path is. What is the journey that lies ahead. Keep listening to the messages of the universe and they will plot a course. Find a way.

And hold it. Hold fast to it.