It seems that Ivabradine is the “hot” drug for POTS right now, so I would be remiss to not mention it. I do not have any personal experience using Ivabradine, a.k.a Corlanor, for POTS, so I included an interview and a link to other POTSie’s experiences.

What is Ivabradine (Corlanor)?

Corlanor is an I(f) current inhibitor. It slows down the heart rate by making the body’s natural pacemaker, the SA node, fire at a slower rate. Corlanor is able to do this without affecting other cardiovascular functions. It is typically used in patients with heart failure to keep their hearts from working too hard in that fragile state.

What we know about Ivabradine use for POTS

Ivabradine is used off-label for POTS because POTS patients have an excessive increase in heart rate and Ivabradine decreases the heart rate. Studies and case reports show that Ivabradine can improve: tachycardia, palpitations, syncope, and fatigue.

In this study, mentioned at Dysautonomia International Conference, 38/49 of subjects experienced improvement of symptoms on Ivabradine. This review of studies demonstrates that Ivabradine improves symptoms for a significant percentage POTS patients. For example, one study demonstrated that 44% of subjects reported and improvement in fatigue. That is huge since most POTS patients experience profound fatigue.

Dr. Peter Rowe briefly discussed Ivabradine during the Dysautonomia International conference. The medication worked as a bridge to allow a 22-year-old patient of his to exercise. With the medication and exercise, she is doing significantly better and can even enjoy long (10 mile) hikes. If she stops the medication, her symptoms worsen again. So, the medication is not strictly a bridge for her, but also a long-term solution. A conference attendee asked Dr. Rowe about the long-term effects of Ivabradine and he said he feels it is safe.

Currently, there is a study in the early stages that will compare propranolol to Ivabradine in the treatment of POTS. Historically, propranolol has been the first-line choice for many physicians, so it will be interesting to see if this study confirms that choice or if Ivabradine is a stronger option.

Side Effects

Potential side effects include:

• bradycardia (slow heart rate)
• hypertension (high blood pressure)
• atrial fibrillation
• temporary brightness in the field of vision (this side effect seems to go away over time)
• blurred vision
• chest pain
• headache
• dizziness
• fatigue
• nervousness

The most common side effect is the temporary brightness in the field of vision. It seems that this is not very bothersome to most patients. I am not sure how common the other side effects are, so don’t panic if you see “fatigue” and are like “great, I already have enough of that”.

Experiences with Ivabradine from POTS patients

I spoke to the lovely Sheila, a POTS patient, about her experience with POTS and Ivabradine. She developed POTS after getting Empty Nose Syndrome from nerve damage due to a botched sinus surgery. After failed trials with beta blockers, her cardiologist prescribed Ivabradine. She has taken it for roughly one year. Her dosage started off at 5 mg, but now she takes 7.5 mg daily. Within the first few days on Ivabradine, Sheila noticed a “boost in a positive direction”. Ivabradine has been a useful bridge for her to be able to exercise. Without Ivabradine, exercise was impossible for Sheila. As many of us have experienced, exercise is key, so finding a medication that works as a bridge to be able to exercise is invaluable.

Sheila experienced some mild and fleeting side effects such as nausea, jitters, and a heart flutter. However, the most notable side effect she experienced was a severe headache. She said it came on “swiftly and mightily” within 24 hours of initiating Ivabradine. About a month into taking the drug, the headache resolved. Although this was a most unpleasant experience, Sheila says it was well worth the payoff.

Heidi from the blog Chronically Salty also wrote a detailed account of her experience with Ivabradine that you can check out here.

Have you tried Ivabradine? What is your experience with it?

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.

I recently trialed Modafinil, also known as Provigil, for POTS and ME. Modafinil can be used as a treatment for fatigue and brain fog. To my dismay, I did not magically become like Bradley Cooper in Limitless. Ultimately, this medication was not for me, but it can be potentially useful for others.

How it works in theory

The mechanism of Modafinil is still somewhat unknown. A Google Scholar search will show dozens of hypothesized mechanisms with some level of evidence. It seems that Modafinil stimulates multiple parts of the brain to encourage wakefulness and cognition. It is typically used as a drug for narcolepsy, shift work sleep disorders, and sleep apnea.

My neurologist recommended it for fatigue and brain fog. She will sometimes use stimulants such as Adderall or Ritalin for this purpose as well. Modafinil tends to bear less side effects, so my doctor opted for me to try it rather than the stimulants.

How it worked for me

Pros

• Less sleepiness in the afternoon

Cons

• Anxiety
• Worsened tachycardia
• Impaired focus
• Brief bouts of nausea (this wasn’t a major issue)
• Shaky

In my experience, there are two distinct types of fatigue: sleepy fatigue and ME/CFS fatigue. For me, Modafinil helped with the sleepy fatigue, but not the ME/CFS fatigue. Since the sleepy fatigue isn’t a major issue for me and it bore undesirable side-effects, I discontinued Modafinil.

The lack of afternoon drowsiness was nice, so I think I am going to revisit matcha. I discuss when I tried matcha in my post on natural stimulants. It wasn’t impactful at that time, but I feel like it is worth retrying. Sometimes the usefulness of certain interventions can change when other variables change.

Other common side effects

• Headaches
• Dizziness
• Insomnia

I did not experience any of these.

Dosage

I took 50mg first thing in the morning (4:45am) for one week, then I bumped up to 100mg each day.

Insurance woes

So, here’s a crappy part about Modafinil: insurance doesn’t cover it for POTS or ME. My insurance (Blue Cross Blue Shield) only covers it for narcolepsy, sleep apnea, shift workers, and multiple sclerosis-related fatigue. The full price is $722 per month.

Yes, you read that right, $722. Here is the good news, using GoodRX, a 30-day supply only cost $24! So, if insurance doesn’t cover one of your medications, get on the GoodRX train. I don’t know what kind of sorcery they use to accomplish the low prices, but it works.

Has anyone else tried Modafinil? How has it worked for 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.

If you keep up with the current treatments page, you may have noticed quite a bit of editing lately. I have been backing off of some of the vitamins and supplements that I was taking. There were a few that were not providing a benefit and just adding to the money pit that is chronic illness.

Many vitamins give you in the thousands of percentage of the daily recommended value. Our bodies can only utilize so much of a substance. The rest is waste that has to be filtered out. I don’t know for sure, but I can’t imagine that being a productive process for our bodies to go through.

Vitamins also have fillers and additives that are not well-regulated. We saw what happened to Zantac. People were taking it for years before finding out that it contained a carcinogenic compound. So, I have shifted my attitude from “why not” to “take only what I am deficient in or what demonstrates an obvious benefit”.

Vitamins and supplements I have discontinued

Vitamin B6

I started taking this at Mayo’s recommendation because in decreases inflammatory cytokines in the brain. Nearly everything I eat has vitamin B6, so I am sure that I am eating plenty to experience the benefits. The supplement I was taking has 5882% of the daily recommended value. That seems crazy!

Vitamin C

I began taking Vitamin C at Mayo’s recommendation to reduce inflammatory cytokines as well as boost the immune system. My immune system has been a disaster, so it certainly isn’t helping me in that department. Also, Vitamin C has to be one of the easiest nutrients to acquire. When is the last time you heard of someone getting scurvy?

Coenzyme Q10

I took the antioxidant CoQ10 for almost 6 months and it didn’t seem to provide any benefit. I discussed this with my neurologist and she said she’s only had one patient whose fatigue improved by taking CoQ10 every four hours. So, it’s not a bad idea to try since some people have success and its use makes sense in theory. But, since it didn’t make a difference for me, I stopped taking it.

Quercetin

Quercetin is supposed to relieve allergy symptoms by decreasing mast cell activation. My neurologist said that a few of her MCAS (Mast Cell Activation Syndrome) patients have had good success with it. I am glad I tried it, but it wasn’t effective for me. I tried it for about two months.

Multivitamin

I am not deficient in anything that was in my multivitamin and it had excessive amounts of many of the things in it. Look at Biotin! Dang!

Ginseng

I had to go off of this for a few days prior to getting allergy testing and I didn’t notice a difference going off of it. So, I’m going to see how I do discontinuing it. Ginseng is expensive so I’m actually hoping it doesn’t do anything for me anymore. Without a doubt, it gave me an energy boost when I began taking it. But, sometimes our bodies change and things no longer have the same effectiveness. For example, when I first began taking Propranolol, I saw a very mild boost. But, by the time I weaned off of it, there was zero benefit.

I am not refraining from all supplements and vitamins, just the ones that I feel are not crucial or impactful. It has been several weeks since I started this process of paring down what I take and honestly, I have been doing better (except for when I’m sick). So, good riddance.

Have you backed off vitamins or supplements before? What affects did you notice?

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.

I have been on Mestinon (also called Pyridostigmine Bromide) for over three months now. I have been sick for most of that time, but I can still see that Mestinon is having a positive effect.

What is Mestinon?

Mestinon is technically classified as a “muscle strengthener”. Our muscles utilize the neurotransmitter acetylcholine to contract. Mestinon inhibits the activity of the enzyme called acetylcholinesterase that breaks down acetylcholine. So, the muscles can contract with more strength. Typically this medication is used for patients with Myaesthenia Gravis, an autoimmune disease that is characterized by muscle weakness. However, some studies and anecdotal evidence have demonstrated the benefits of using Mestinon for POTS as well as ME.

How does Mestinon work for POTS?

Both the parasympathetic and sympathetic nervous systems utilize acetylcholine, but the parasympathetic nervous system uses it to a greater degree. So, the “rest and digest” nervous system, which we need more of, has more fuel. This may reduce the tachycardia found in POTS and improve symptoms.

People with POTS can also have muscle weakness. That can make it more difficult to exercise. Mestinon may improve this muscle weakness, improving the ability to exercise. Exercise is one of the most effective POTS treatments we have at the moment, so Mestinon may help in this secondary manner as well.

How does Mestinon work for ME/CFS?

There is a lot of crossover between POTS and ME, but it is possible that Mestinon is useful in ME as well. There is currently an interesting clinical trial going on using Mestinon for ME. They are studying how Mestinon impacts hemodynamics and oxygen uptake, which are relevant to both POTS and ME. There’s also plenty of anecdotal evidence of people with ME responding well to Mestinon, such as Jennifer Brea (prior to her being in remission due to surgical correction of her craniocervical instability).

Mayo considers part of the etiology of ME to be the oversensitization of the nervous system, or too much sympathetic nervous system activity. Mestinon combats this by increasing parasympathetic nervous system activity (the yin to sympathetic nervous system’s yang).

As I mentioned under the POTS heading, Mestinon is a muscle strengthener. This can be useful for ME people as well as they typically have significant muscle weakness.

For me, it’s hard to know where ME starts and POTS ends. Therefore, a lot of what I talk about refers to both. If something helps me with POTS, it’s probably helping me with ME too. One day, we will understand these diseases better and I think the lines will be drawn differently.

How has Mestinon helped me?

As I said before, with all the sickness that I have had I do not have the complete picture of Mestinon’s effect. However, I can tell that it is helping with one of my most bothersome symptoms- “gassed muscles”. My muscles usually feel like I’ve been doing non-stop sprint repeats and this exacerbates fatigue and makes me have poor endurance. Mestinon improves this symptom. The first area I noticed it was walking up the stairs. I was no longer doubled over gasping for air.

I believe Mestinon also helps me with my biking sessions during the Modified Levine Protocol. As a muscle strengthener, this makes sense.

Mestinon really gets things moving along if you know what I mean. Gastroparesis is a common issue for POTS patients and Mestinon may help with that by improving gastric motility. I don’t have gastroparesis, but I still noticed significant improvement in this realm.

I just did a quick poor-man’s tilt table to give you a quantitative idea about what Mestinon does to heart rate. My resting heart rate is 56 and when I stood it went to 101. After a short time, though, it leveled off in the 70’s. A few months ago, when I did that same test, my heart rate leveled off in the 90’s. These things vary day-to-day so that’s not a bulletproof representation. N=1 as my scientist husband always says. True story, when I got pregnant with our first son and showed him the pregnancy test he said “Well, N=1, we need to get more tests.” Also, he took a pregnancy test as the “control”.

Another observation is that when I was biking this week, I physically could not get my heart rate over 115. My legs felt like bricks as I am still recovering from the sinus infection, so it’s possible that my muscles weren’t cooperating to get my heart rate high enough. It’s also possible that this latest increase of Mestinon has lowered my heart rate. Time will tell. Update- Time has told. Mestinon lowers my heart rate as I explained above. The increased cardiac fitness has probably contributed to this lowering as well.

Dosage

At the time of writing this (January 2020), I take 60 mg twice a day. I take one first thing in the morning right before I exercise, and then another tablet mid-afternoon. My neurologist said I could potentially add one more 60mg tablet. I would like to try that since I see a benefit of this medication. I very gradually increased my dosage like this:

• 15 mg once a day
• One week later I did 15 mg twice a day
• A week after that I did 30 mg and 15 mg
• One week later I did 30 mg and 30 mg
• I can’t remember how long I waited for the next increase but then I went to 60 mg and 30 mg
• Just recently I increased to 60 mg and 60 mg
• Update- Since writing this post a few months ago, I have increased the dosage. I now take 60 mg first thing in the morning, 60 mg around 1pm, and 30 mg around 5pm.
• Update– A couple months after the last update, I have increased to 60 mg three times per day.
• Update– Just kidding. 60 mg three times per day is too much. Ouch. I’ve been sore when I wake up for months which I have just been ignoring. When I increased Mestinon this last time, the soreness worsened, so I asked my doctor if there was a connection. She confirmed that Mestinon could be the cause of this. So, I will be backing off a bit. I’ll update when I land on a dosage.
• Update 10/2020– The soreness/stiffness continued to be problematic, so I had to continue walking down the dosage. I have landed at 60 mg in the morning and 30 mg around 1pm (the farther from bedtime I can take this second dose, the better). I feel the same POTS-wise as I was at the higher dosages, so that is good. My neurologist said that she would not consider Mestinon to be a “forever drug” for me. She would like me to try to wean off of it this fall/winter and see how I do. I may find that I don’t need it anymore. I’ll keep updating this part as I go along.
• Update 11/2020- I am currently taking 30mg upon waking and 30 mg at 1pm.

Side effects

I have had minimal, temporary side effects from Mestinon, which is fantastic. Midodrine and Florinef did me dirty, so I was pleased to react well to Mestinon. When I increased dosage in the beginning, I would have some temporary nausea and diarrhea. After a few days, my body adjusted, and I was fine. My doctor told me to be on the lookout for muscle twitches and hypersalivation. Those are signs that the dosage is too high.

Update– I do not know how common this is, but as I explained above, I experienced sore and stiff muscles after waking up and for a few hours after. This began with the highest dosages that I tried. I also get some minor muscle twitches at the higher dosages. My doctor was not concerned with that because it was pretty infrequent and didn’t bother me at all.

Note- A reader brought up an important note in the comments that I want to add here for visibility since it asthma is common. Asthma is listed as a precaution/precaution to taking Mestinon. Patients with asthma may react poorly to Mestinon and have difficulty breathing. Some doctors may still prescribe it at lower dosages for patients with mild asthma, but as in the case of the reader that commented below, it may still cause trouble. So, make sure you discuss this with your doctor if you have asthma and be cautious with it.

Which POTS group is it best suited for?

In my neurologist’s experience, she has seen Mestinon work best in the subset of POTS patients that can exercise and have mild-ish POTS. That doesn’t mean it never works for people outside of that subset, that just tends to be the most common group with positive results.

Mestinon doesn’t increase blood pressure and only mildly lowers heart rate, so it is not considered a “first-line” drug. Doctors will typically try beta-blockers (ex. propranolol), vasopressors (ex. Midodrine), or blood volume expanders (ex. Florinef) first. If you have exhausted the first-line options, it may be worth asking your doctor about Mestinon.

Have you tried Mestinon? How has it worked for 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.

Fluids and electrolytes are important when you have POTS. Some people with POTS have hypovolemia (low blood volume). In addition to that, the blood is not being pumped properly due to the dysfunction in the autonomic nervous system. Fluids increase blood volume and electrolytes help you retain the fluids that you drink. Therefore, increasing fluids and electrolytes are a useful treatment for POTS.

Fluids

I typically drink between .75 and 1 gallon of water a day. I fill up a pitcher of that size in the morning and pour from it throughout the day. This is much easier than trying to keep track of how many cups and water bottles I’ve drunk.

Electrolytes

Saltstick Vitassium

Saltstick Vitassium is an encapsulated electrolyte supplement that contains sodium and potassium. It is formulated to be gentle on the stomach. I like it because I don’t notice any GI side effects and the amount of electrolytes is perfect. I take 2-3 capsules with each meal depending on how hot it is.

The great thing about this company is that they offer a 20% discount program called the Vitassium Club to people who use Saltstick Vitassium as a medical supplement for dysautonomia or cystic fibrosis. You also get free shipping on orders over $75, so I order a 3-4 month supply each time.

Oral rehydration solutions

Since I already take Saltstick Vitassium, this is redundant for me. However, I occasionally use oral rehydration solutions for “emergencies”: major energy crashes, excessively hot days, and special events. To be honest, I don’t know why I do this. I think it makes me feel better like I have an extra trick up my sleeve. They do seem to provide a little boost when I need it.

I am not a fan of using these regularly because they tend to have unfavorable ingredients like: flavoring, sugar, and artificial sweeteners. Sugar and artificial sweeteners promote bad gut bacteria growth and added flavors can be irritating to the GI system.

I have tried a few oral rehydration solutions and they all work, but I have a clear preference for Drip Drop. It is the best tasting in my opinion. My favorite cold flavor is watermelon and my favorite hot flavor is spiced apple cider. Liquid IV in the watermelon flavor is also pretty good. The benefit of Liquid IV is it is among the most economical, especially if you can buy it at Costco.

I tried out LMNT in Raw Unflavored. It has a great ingredient list, but I ended up never wanting to use it because it tastes like saltwater. I learned that there has to be some tasty factor for me to reach for it. LMNT makes other flavors, so that may be worth checking out if you don’t mind stevia. I also tried Hydrus in the orange flavor. It’s a no from me. However, I detest the taste of stevia and the aftertaste of this was full-on stevia.

In 2023, I have found two elecrolyte drink recipes that I like to use after running.

Vitassium FastChews

As a disclaimer, Vitassium reached out to me to share information on FastChews and provided me with samples of the product. However, my opinions are honest.

The FastChews are hard tablets that you can each chew quickly or suck on to dispense electrolytes. They provide 125mg of sodium and 25 mg of potassium per two tablets. They come in Fruit Punch and Grape flavors. Both flavors are good. So good that it is hard to stop eating them! I recommend sucking on the tablets because they taste better that way vs. chewing it fast and getting a roundhouse kick of salt to your mouth. I believe the product also absorbs better when you suck on them since there is more contact of the product with the tissues in your mouth. FastChews smartly work with the fact that the buccal mucosa (tissues of our mouth) allow for quick electrolyte absorption.

I will be using these FastChews for my “emergency stash” of electrolytes. I don’t use electrolytes regularly anymore (March of 2022), but I like to have something like this or Drip Drop on hand in times of illness or more strenuous days. These FastChews are perfect for me to have at work because I don’t always have water on hand, there is no fuss, and they work quick (about 5-10 minutes to enter the blood stream).

If I was looking for a daily option, I would choose the original Saltstick Vitassium instead. The amount of electrolytes per dollar is about 4-5x greater in the original Saltstick Vitassium. FastChews also contain sugar, natural flavoring, and stevia. As I mentioned when discussing oral rehydration solutions, I moderate my consumption of those ingredients, so FastChews are better for occasional use for me.

Why I do not drink Propel, Gatorade, etc.

Similar to why I only use oral rehydration solutions occasionally, it is because they are chock-full of unfavorable ingredients. Sports drinks typically contain artificial colors, sugar, artificial flavors, and artificial sweeteners. Now, is the occasional Gatorade a big deal? No, of course not. However, I would have to consume a mega ton of Gatorade every day to meet my sodium and electrolyte needs and that wouldn’t be good for my body.

How to hydrate optimally

This information is newer to me. Chugging a glass of water has a less hydrating effect than sipping water slowly. Drinking quickly overloads your kidneys and you will pee most of the water out. An article in Time magazine explains this finding.

The article also explains that our body is more efficient at hydrating if we consume food along with it. Food contains minerals that help our bodies retain water. I was recently asking my nutritionist for advice about how I tend to crash and get shaky in between meals and then feel better after I eat. She told me that is typically due to blood sugar dropping and high fiber and protein meals help. However, in the case of POTS, it is typically due to blood volume dropping in the absence of enough electrolytes/minerals. She recommended that I eat a salty/mineral snack in between meals. I always have roasted/salted pumpkin seeds on hand for when I am running on E. Pumpkin seeds are rich in fat, protein, sodium (if they are salted), potassium, and magnesium. These will all contribute to the retention of fluids.

A word of caution about eating salty snacks is that it has a tendency to create a “taste bud ping pong” effect. If you eat something very salty, your taste buds typically crave something sweet afterwards, and vice versa. It is good to be aware of this if you are trying to control sugar consumption. This is why most of my sodium comes from tablets (the Saltstick Vitassium).

How do you do fluids and electrolytes? How has it impacted your POTS?

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.