Thursday, April 2, 2015

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!


7 comments:

  1. Did you ever try ELETE electrolyte concentrate? It's basically just concentrated sea water, nothing else added (good for my daughter and I because neither of us can tolerate anything artificial), that you add to your drinks. A couple of POTSies recommended to me and it served her well for years, but she doesn't need it so much now that her POTS is controlled enough to have weaned Florinef.

    For myself, I just discovered that ALKALINE water with electrolytes works far better for me than regular water with electrolytes. I think the alkaline water gets into the cells better, but I'm not sure.

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    Replies
    1. I have not! But I will look into it for sure. I really love Nuun but I want to keep trying other things too :)

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  2. Stephanie, are you a floxie by any chance? (Fluoroquinolone Toxicity)

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    Replies
    1. I've never heard of this before. What are the symptoms?

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    2. I've never heard of this before. What are the symptoms?

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    3. The symptom list is LONG, but many suffer with POTS as a side effect. If you type fluoroquinolone toxicity into a Google search, you can find information. The most common culprits are Cipro, Avelox and Levaquin antibiotics.

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  3. New Diet Taps into Innovative Plan to Help Dieters Lose 23 Pounds within Only 21 Days!

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