Some vitamins, supplements, etc. have been useful to me or have enough scientific evidence to prove their worth in my treatment plan. I will discuss a few that I have tried in this post. This is not an exhaustive list as I will discuss some other things that I have tried or currently take in separate posts. To see a list of everything I am currently taking visit the current treatments page.

What I currently take

Vitamin B6

I take one tablet of vitamin B6 per day at the recommendation of the Mayo Clinic. They explained to me that vitamin B6 decreases the amount of inflammatory cytokines that are found in excess in the brains of people with ME. I started taking this when I started several other treatments, so I wouldn’t know if it does anything. However, I know I have no negative effects, so I continue to follow Mayo’s recommendation.

Iron

I have been taking iron for years because I am prone to being anemic. This helps me stay at a healthy level of iron. I take generic slow-release iron tablets. They have worked well for me and not caused any GI issues.

CoenzymeQ10

My nutritionist recommended that I take this. It is an antioxidant and is used by the mitochondria to produce ATP (energy for your cells). People with ME have been shown to have a deficiency of CoenzymeQ10 and it is thought that this deficiency contributes to the fatigue, autonomic symptoms (think POTS), and neurocognitive symptoms of people with ME. I have not noticed any benefit since starting this. However, the science makes sense to me and I have no negative effects, so I will continue to take it. I think this, Vitamin C, and Vitamin B6 are all about playing the long-game. I may not see a short-term impact, but perhaps they will be helpful in the long-term.

Multivitamin

Why not, right?

Vitamin C

The Mayo Clinic recommended that I take vitamin C because it (like vitamin B6) decreases the amount of inflammatory cytokines in the brain. I do not notice any benefits of taking this, but it doesn’t hurt so I continue to take a small amount daily.

Vitamin D

I was slightly low on this at one of my initial blood tests, so I take vitamin D each day. I just take the super cheap Up and Up tablets from Target. It boosted my levels by quite a bit when the blood work was repeated.

What I no longer take

Licorice Root

My neurologist recommended that I take this as a natural alternative to Florinef. Licorice root increases blood pressure and therefore may alleviate some symptoms for certain POTS patients. I tried it out for a month at two different dosages, and it didn’t do anything. I even did some comparison blood pressure measurements; it really did not do anything. I no longer take it because it didn’t work for me and I see this as less inert than say for example, vitamin C. There are clear warnings on the label to not take it for high dosage long-term use. I used to drink a licorice root tea that said not to consume it for longer than a month. So, I won’t take my chances.

Probiotics

I have taken them on and off for years, but I do not currently take any probiotics. I wasn’t sure about the efficacy of them, so I asked my nutritionist. She said, they can help, but eating fermented foods is better (and cheaper). She said all it takes is a forkful of sauerkraut a day. I do not eat any fermented foods because I think they are nasty, but I eat in a way that promotes good gut health. The nutritionist also said that probiotics can worsen SIBO (small intestine bacteria overgrowth), which is a common problem for POTS patients. Probiotics do not seem to be worth the cost for me as I have never seen any benefit while taking them.

Allergy medications

I mostly outgrew seasonal allergies, but had to go back to taking allergy medicine again this year. I have tried Xyzal, Zyrtec, Flonase (over the counter and prescription), Allegra, and Claritin. Allegra and Claritin work the best for me, but they still only half-treat my allergies. No matter what I do I constantly swallow 103948230984 pounds of mucous a day. Post nasal drip for life.

Speaking of post nasal drip for life…when I was a kid I used to gag all the time from it. I figured out that mints helped me not gag. I was a super weird kid, so I would fill up a mini White Sox fanny pack full of mints so I could have them at my disposal.

I am trialing a new POTS medication called Mestinon right now and my doctor suggested going off the allergy medicine to minimize the chance of a drug interaction. She said that since the allergy medicine isn’t super helpful for me anyway, I might as well go without to give the new POTS medication a better chance. That makes sense to me so I’m currently going without any allergy medication.

What vitamins/supplements/OTC medications do you take and how have they impacted you?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

These natural stimulants are ways to potentially increase your energy. These have all been recommended to me by my doctors, but may not be appropriate for you depending on your situation.

Coffee

I was excited to try coffee because who wouldn’t want to have to drink that warm deliciousness as part of their treatment plan? I have never been a coffee drinker in the past because I didn’t want to become addicted to it. I’m way beyond the point of giving a crap about caffeine addiction now, so I was all on board. Unfortunately, coffee gave me a jittery and anxious feeling, but no real energy. That was a disappointment. I also tried half-caf and it didn’t accomplish anything either. Caffeine may increase heart rate, so there is some concern that it could worsen POTS symptoms. My neurologist says it is different for everyone, so she considers it worth a try.

Matcha

I’m going to just come out and say it: matcha tastes like fish food pellets mixed with fresh cut grass. It’s a very popular flavor right now for some reason. People, stop trying to make matcha happen.

Matcha in theory is actually quite magical. It has around half the amount of caffeine as coffee and contains the amino acid l-theanine, which has a calming effect. The result is supposed to be a boost of calm energy. I tried matcha for a couple weeks and I can’t say that it did much for me. It doesn’t give the anxious and jittery energy that coffee gives, which is great, but there was no noticeable energy boost either. The ceremonial grade, organic, radiation free etc. matcha teas can cost a pretty penny. I can’t justify the price for something that doesn’t have a noticeable effect and has a taste that makes me shudder.

Ginseng

Ginseng is the winner for me. It provides a small energy boost without any jitters, anxiousness, etc. The Mayo Clinic recommended that I take it. The doctor explained to me that the benefit of ginseng is two-fold. First, ginseng has been shown to reduce the inflammatory cytokines present in the brains of people with ME. Also, ginseng has been shown to increase energy. Mayo Clinic used ginseng capsules in a study with cancer patients experiencing fatigue and there was a statistically significant improvement in the group that used ginseng. There are issues with quality and purity in ginseng, so Mayo recommended that I purchase it from here the Ginseng and Herb Co-Op in Wisconsin. I use the recommended amount that is on the label.

Have you used any of these natural stimulants before? How have they worked out for you?

To see what else I take along with ginseng visit the current treatments page.

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

In the year since I have been diagnosed I have tried the three first-line POTS medications: Propranolol, Midodrine, and Fludrocortisone. For the most part, these have not worked well for me, but that doesn’t mean you will have the same experience. It’s always worth discussing all the different options with your doctor.

Propranolol

Propranolol was the first POTS medication I started after I was diagnosed. It is a beta blocker so it lowers the heart rate. In reducing the heart rate overall propranolol also reduces the dramatic elevation of heart rate upon standing in POTS patients. My dosage was 20mg in the morning and 10 mg in the late afternoon. I feel propranolol is a decent “bridge” drug. It may take the edge off symptoms as one works on becoming more active and conditioned. By the time I was diagnosed (over a year after the onset), I had become extremely deconditioned. In fact, I couldn’t fathom exercising more than 3 minutes at a time.

Propranolol gave me a very slight boost that helped me tolerate beginning an exercise regimen. After several months on propranolol, my local doctor thought I should see how I do off of it since propranolol can exacerbate fatigue and decrease blood pressure. I gradually weaned off propranolol and can confidently say that I do not notice any difference between being on it and being off it in a more conditioned state. It’s effects were limited to when I was deconditioned. I did not have any side effects from this drug, which is always a major pro.

Midodrine

In the spring of 2019 I was no longer taking any POTS medications. I wanted to try something new so I asked my local doctor about midodrine. Midodrine is a vasopressor. It works by constricting peripheral blood vessels so less blood pools in the lower extremities of POTS patients. I initially tried a dosage of 5mg 2-3 times per day. This drug did not work for me at all. Midodrine did not improve any of my symptoms; it just made me dizzier.

I was surprised that midodrine affected me that way, as it is certainly not common. I experienced the usual side effects of midodrine like goose bumps and a tingly scalp. Those side effects were not a big deal, though. If the drug would have worked for me I would have happily welcomed the tingly goose bumps. I retried midodrine at a half dosage which eliminated the extra dizziness. However, it was still ineffective at tackling any POTS symptoms.

Fludrocortisone

Fludrocortisone AKA Florinef is a synthetic hormone that causes the body to retain more salt and therefore retain more water. Through this water retention Florinef increases blood volume which can help with some of the orthostatic intolerance that POTS patients experience. WTFlorinef! This drug was terrible! After a few days on it my muscles became progressively weaker until they were completely gassed. In track we used to call this phenomenon “booty lock”.

I never thought I would get booty lock from walking across the room. I was on Florinef for less than two weeks. A couple days after I discontinued the drug, my muscles went back to feeling their POTS normal.

Has anyone else experienced this effect with Florinef? What experiences have you had on these first line POTS medications?

More information

To see what I am currently using instead of these medications visit the current treatments page.

To learn more about the various POTS medications check out this overview by Standing up to POTS or this one by PoTSUK.

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.