Anything that goes into or on my body gets carefully researched first. I’m not speaking about only medications, supplements and cosmetics, but also foods, shampoo, chapstick, even what I wash my clothes and bedding in. This isn’t a brag about how I treat my body like a sacred temple; it’s something I’ve learned to do out of necessity because I’m a “trifecta zebra,” otherwise known as a person with Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS) and Postural Tachycardia Syndrome (POTS). If I fail to check a label, I could be facing days of hives and itching or I could end up with life threatening anaphylaxis. Reading labels and doing research is a matter of life or death for me. When it comes to using supplements for my health, these are all things I have to keep in mind, but there’s a great deal more to worry about with natural medications than if they’re going to cause me to react.
Whether or not you’re a trifecta zebra like me, if you’re using supplements without a complete understanding of what it is you’re putting into your body, you too could be risking your life. Take, for example, the rash of cardiac episodes I experienced recently. I now believe that had I taken the time to consider more carefully the ramifications of a simple supplement change, that I might have been able to avoid these episodes, and the ensuing angiogram, entirely. At the least, had I been paying better attention or working with either an integrated medicine specialist or naturopath, it probably would have been caught before resorting to an angiogram.
Just under three years ago, my former PCP and I made the decision together to treat my POTS, then diagnosed as orthostatic intolerance, with Oral Rehydration Salts (ORS). There was a study going on about it and we figured we’d give it a shot and see how much it helped with my symptoms. ORS contains different types of sodium and a healthy dose of potassium. Since my potassium was on the low side when my PCP tested it, he thought the amount would be fine for me to take and I felt much better when supplementing with the ORS than without it.
Though I’m now diagnosed with POTS and it is being treated with florinef and midodrine, I’ve continued taking varying doses of ORS daily to fill the gap in blood pressure that my medications still leave. While I experience almost no tachycardia anymore and few dizzy spells, my vascular cardiologist and I have been frustrated by my inability to tolerate upright exercise. I sometimes end up with shortness of breath and dizziness if I walk at what is really considered to be a normal pace or try to go up a slight incline. It seemed to happen only occasionally though, and since my other symptoms still had me mostly housebound, I was satisfied to take my exercise on my recumbent bike and take my time on my feet.
Then in October of last year these little attacks became more frequent and started to include terrible chest pain. There I would be, leaning against whatever I could get my mitts on, trying to inhale the world in one gulp, my chest feeling like it wanted to explode, head swimming. I happened to see my new PCP just after one such occurrence that scared me enough that I felt like I needed to tell him about it, though I’d been reporting the problem to doctors for some time. When my new PCP heard the details of these attacks, he ordered a stress test. It showed decreased profusion on the right side of my heart after exercise, indicating that something was blocking blood flow to the heart under stress.
In the six weeks it took me to get in to see the cardiologist, things went from bad to worse. I was no longer having attacks during exercise; they were happening while I was working on the computer or watching TV. Since I’d bought a pulse/ox monitor, I got to watch fearfully as my heart rate dipped to just under 40 and my oxygen fell below 94%. Several times we vacillated over ER trips only to have my heart rate rebound after anywhere from 20-90 minutes. I don’t feel I’m overstating things when I say it sometimes feels like a miracle that I came through this experience unfazed.
When the cardiologist performed my angiogram, my artery began spasming as soon as the catheter entered it. They had to back it out and insert a smaller catheter, which helped, but didn’t prevent the spasms entirely.
They found no signs of blockage and since they actually got to witness the way my arteries spasm during the procedure, they felt quite comfortable diagnosing my problem as CAS, coronary artery spasms. CAS is often treated as “benign” by doctors: However, it can cause both heart attack and stroke and isn’t exactly rare in EDS.
I don’t want to get off on a tangent, but it’s important to understand that arterial spasm can happen anywhere and could easily be major contributors to my POTS and my migraines. Two things now strongly point to my migraines being caused by arterial spasm; the evidence that it occurs in other places in my body and the fact that verapamil is the only medication to effectively treat my migraines besides topamax. I’ve tried over a dozen other medications.
Once I had that information, I began reading up on CAS and heart dysfunction in general. I started thinking about the role of electrolytes in heart health and wondered if my ORS could be interfering. I reasoned that if it was potassium causing the problem, then it would be easy enough to test out by withdrawing that treatment for a while. I discontinued the use of my ORS for a few days just to see if the symptoms changed at all. I went off of it for 5 days and amazingly my symptoms gradually faded and died away. After 5 days, I drank a half liter of prepared ORS and sure enough, I had an event that day. I stopped using it entirely, switching instead to adding Himalayan pink salt to my water a couple times of day. The longer I went without ORS, the fewer the attacks and the less severe they became.
What Changed in October that ramped up my CAS attacks? I started taking pure inner leaf aloe vera juice every night. One of the effects of aloe vera is that it increases absorption of nutrients. Since I’ve been fighting various deficiencies in vitamins and minerals for years, I have to supplement a lot of them, many at doses that make other people’s eyes pop out like a cartoon wolf’s eyes taking in a beautiful woman.
When I researched aloe vera’s properties, it was my own eyes popping when I read the claim that it can increase absorption by as much as 300%. I deal with supplements all the time. I see some pretty amazing claims, some of which I take with a grain of salt. In this case, I was hopeful that it was true, but my skepticism was raised; 300% is a huge claim. I decided to take it with a large grain of salt and a wait and see attitude. It was a mistake that could have been fatal.
If nothing else, my very expensive angiogram bill has taught me some very valuable lessons:
- Make sure you consider every angle when starting a new supplement
- Believe everything you read (that’s reliable) about a supplement (no matter how implausible it may seem) until you’ve proven otherwise
- No matter how long you’ve been taking something, it could still be affecting your health in ways you don’t know about.
This third item is important because I realize in retrospect that I was having these episodes before I ever began taking aloe. They were just a lot less dramatic and not so painful. In a way, I need to thank aloe for ramping things up and forcing me to examine the situation, because I truly thought what I was experiencing was part of my dysautonomia. I never dreamed it was medication related and that I’d tipped my potassium from low to where it was over-saturating my cells, contributing to an existing health problem of which I was never even aware.
I’ve written about this experience not to scare you out of utilizing supplements, but so that you use them with renewed deference for their power. We can all use an occasional reminder about respecting our herbs and remedies and apparently there are always new considerations to add. I have a procedure I follow for selecting and testing my supplements. I’ve been doing this for years, but I still have much to learn. Of course I’m not a medical professional; I have no degrees in integrated medicine or naturopathy or chiropathy. I and everyone like me would benefit most from utilizing such people, but not all of us have the privilege of being in the tax brackets that allow for such things and that shouldn’t mean we have to do without either.
You do have to utilize your smarts and be willing to do lots of research, in that case. Read and understand what supplements do and consider whether or not those are all good things for you. Check for contraindications for use, known side effects, drug interactions. See what research has been done on them. Talk to people who have used them or find articles written about them by people like me and see what their experiences were. Most importantly, pay careful attention to what your own body tells you about what you’re taking. For a full list of do’s and don’ts, check out Choosing Your Own Supplements.
Vitamin and Mineral Safety
Some vitamins and minerals accumulate in the body until they reach toxic levels. Potassium is one example. Vitamin D is another. Since my potassium was so obviously being affected by my use of aloe, I felt it was best to decrease my vitamin D. I’m glad I did. I tested in the high normal range 2 weeks after cutting my dose in half. We also retested my sodium and it’s no longer too high (it was just borderline high two days prior to surgery), however it is just under the bar for high, which means I can cut back on my salt intake as well.
Whatever you supplement, be sure you understand whether the excess is simply passed through the kidneys (and how hard the kidneys have to work to do that if they are at all compromised) or if it’s a substance that gets stored in our cells. If it builds up in the cells, it’s imperative that these levels be checked occasionally and that you’re aware of what the symptoms look like in the event of overdose.
Many people know that electrolyte imbalances can be dangerous, but most don’t know why or understand how potassium works. Potassium can be tricky as far as testing, so knowing the symptoms and paying attention are particularly important. When I discussed my ORS experiment with the cardiologist, he was amazed. I asked him if we could test to confirm. He told me that I’d already performed the best tests I could. He explained that what they test is the saturation of potassium in the blood and what was at work was a buildup of potassium in the cells. One can easily have a normal or high normal potassium test result (mine was in a high normal range two days prior to my procedure) and still have oversaturated cells. By the time its high in the blood, most people have already had a heart attack.
When I saw my PCP a few days after the cardiologist, he had a great theory about my saturation levels. He posited that we all have our “sweet spots” when it comes to nutrients and that’s why there’s a scale of what’s normal. Just because I started having CAS attacks with a potassium serum level of 4.5 doesn’t meant everyone would. It’s just too high for me personally. He really has an excellent point which I’ve seen demonstrated in so many ways. It’s not just being spoonies that make us unique. No two people have the exact same DNA and therefore we’re all a little different. We cannot be fixed like computers on an assembly line. This is one of the reasons why I constantly advocate for listening to one’s body and using one’s intuition rather than relying solely on textbook knowledge when it comes to the healing arts.
Such experiences can be scary and disheartening. We’re taking supplements, vitamins and minerals to feel better; of course we don’t want them risking one iota of our precious health. While some would be tempted to give up supplementation and treatments that are considered holistic, I look at this experience as an opportunity to learn and grow. After all, supplements didn’t cause my CAS. I simply made a mistake by not heeding the absorption potential of aloe as a warning as well as a benefit and giving it the respect it deserved. Natural medicine has given me far more than it’s ever taken.