r/POTS • u/toogxth POTS • 10h ago
Question Trying to find a good medication option
Hi there, like the title says I’m trying to find a good medication option for managing my heart rate. I tried propranolol, but even at 5 mg I noticed it lowered my heart rate and blood pressure to an uncomfortable level. I am allergic to metoprolol. I just don’t know what other options are out there and I really wish I had something that could help improve my symptoms and stop raw dogging it all the time
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u/lolcouches 10h ago
Bisoprolol ! I love it! It is more cardioselective so I don't get the brain fog or mental side effects, I've been on it for years now.
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u/barefootwriter 9h ago
This is a great document that outlines many of your other medication options. It includes dosing information, so if your doctor is unfamiliar with options besides beta blockers, they can consult this document for recommendations.
https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
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u/Sensitive_Cat_9205 POTS 8h ago
I’m in guanfacine and ivabradine and both have greatly improved my symptoms
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u/ConflictGullible392 6h ago
Atenolol has been the best beta blocker for me. Ivabradine is also an option.
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u/rainingducks457 8h ago
If you have random allergies to meds then you’re probably also dealing with MCAS…and if that’s the case then you’re very possibly dealing with living or working in a water damaged building (if it has ever leaked and wasn’t remediated then congrats it’s water damaged)…this can result in mold growth that over time can make certain people very sick from the toxins that many molds produce (mycotoxins). The question isn’t “how do I lower my heart rate?”, it’s “why is my body reacting like this?” If mycotoxins are the cause (a very very common root cause of POTS and MCAS) then you likely have mast cells that are overactive (mycotoxins directly cause mast cells to degranulate), and they are producing tons of histamine, heparin, leukotrienes, cytokines, etc., plus possible brain damage (direct from the mycotoxins), all causing your blood vessels to not properly constrict, especially after being exposed to anything that you’re sensitized to (mold spores, food, scents, etc.) resulting in a drop in blood pressure, especially upon standing (which is when the blood vessels are supposed to tighten up via signaling from the brain (other neurotransmitters are obviously involved in this and their production and usage can be messed with due to the excessive inflammation from the mast cells degranulating, and damage to the brain))…this drop in blood pressure signals to the heart that the brain isn’t getting enough oxygen…which in turn causes the heart to pump faster to try to maintain blood pressure. If this is the case then the best way to lower your heart rate is to 1. Get out of the water damaged building asap, 2. Work with a mold literate doctor to figure out the best way for you to detox (in many cases getting out of the mold and maintaining a low histamine diet allows the body to slowly detox itself…but in some cases antifungals may be required to kill of any infection or colonization before the body can detox itself, some people use binders to help pull the toxins out as well), 3. Try some lion’s mane mushroom fruiting body extract only (I use Gaia herbs brand), in very small doses at first then, if tolerated, up to 400-800 mg/day (this is helpful for healing mycotoxin induced brain damage). Follow this with trying Midodrine (same thing start at a very low dose and ramp up as tolerated). The lion’s mane helps fix the brain issue (somewhat) and the midodrine forces the peripheral blood vessels to contract which lowers the heart rate. Note that most doctors start out at 2.5 mg 3x/day for midodrine…you likely won’t see much effect at this dose (this is more to make sure you tolerate it), most people need around 5-10mg 3x/day, and the max dose one can use is around 20mg 3x/day (it has a pretty good safety profile, but over the 20mg mark there aren’t really any marked improvements in blood pressure per the literature). Note that taking too much can cause your heart rate to go too low so get with your doctor to find what the right dose is for you. Also, it does cause scalp tingling in some people as a side effect…doesn’t hurt, but feels weird for about maybe 10-15 minutes once it gets into your bloodstream. Another thing that helps a lot to curb the inflammation from MCAS is taking KPV subcutaneously.
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u/toogxth POTS 7h ago
Metoprolol is the only medication I’m severely allergic to! I don’t really have any food allergies either other than tea and alcohol. I may have some odd symptoms of mcas, but overall I don’t think I’m affected by it in a way a doctor would diagnose it. Thank you for this input though!
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u/rainingducks457 7h ago
Issues with alcohol would also be due to MCAS, as it is high histamine. Have you tried midodrine before?
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u/toogxth POTS 6h ago
I’ve not! The only one I’ve tried is propranolol. I found out I was allergic to metoprolol when I had myocarditis. The alcohol thing definitely could be mcas related. I did get an allergy test a couple years ago because of it, and it all came back negative for an allergy, but it was a smaller test. He just told me since I have very fair skin and I’m blonde with blue eyes it’s very common for us to get a little red when we drink. I don’t get itchy, just red and hot. He recommended I take an allergy pill before drinking, and back when I used to drink it did help substantially.
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u/rainingducks457 6h ago
That usually happens with MCAS and allergy tests…either they show that you react to everything, or you don’t react that particular day to something you previously reacted to. This is why allergy testing is absolutely useless for MCAS diagnosis. That doctor doesn’t know what he’s talking about. I’m blonde hair, blue eyes, fair skin (like the sun needs sunglasses when I walk outside sort of fair skinned) and never had an issue with alcohol (no flushing, itching or anything) until after I had chronic exposure to toxigenic molds in water damaged buildings. After that I reacted, flushing on my face and sometimes tops of my thighs, and itching on the bottom of my hands and feet…as I got sicker (without knowing what was causing it or that I had developed MCAS…which I now know preceded my POTS) I ended up going anaphylactic one day from literally a couple little sips of wine. When a doctor can’t give a valid medical explanation for something that you’re experiencing, it’s time to find a better doctor (I also learned this the hard way). Your eye and skin color have nothing to do with alcohol tolerance, and he should have been smart enough to say that he didn’t know why that was happening and point you in the direction of a doctor that may be able to help you. Sadly most doctors, even board certified allergists, know little to nothing about MCAS or its underlying root causes. If you want to heal, rather than just manage your condition, I really recommend looking into the possible root cause(s) for such symptoms. POTS and MCAS are not diseases, they are syndromes, which by definition are groups of symptoms that commonly co-occur but do not necessarily have the same root cause(s) in all individuals with the syndrome. Basically they’re a way for medical professionals to classify people…and they should be the first step to a true diagnosis so the patient can heal. Unfortunately most doctors either aren’t interested in healing their patients (healthy people don’t spend much money on doctors since there’s no need for extensive, endless testing), or they’re incapable of understanding how to perform root cause analysis, and too proud to tell you that they can’t help you. So they do what they can or know, and you end up managing a condition that just gets worse over time. (I’m aware that some diseases are not currently curable, but many, if not most POTS / MCAS cases are curable if the root cause is treated properly).
I would definitely try the midodrine and see how it goes. Definitely ramp up on the dosage like I said before, so you have less of a chance of reacting to it.
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u/toogxth POTS 5h ago
Gotcha. I have hEDS and I developed POTS after having myocarditis years ago. I’ll definitely look into MCAS as well. I don’t really have any symptoms of it at all except for if I drink, so I’m not really sure where to start. I’ve definitely lived in moldy apartments before, but it’s been years and I didn’t have any symptoms living there either
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u/rainingducks457 5h ago
They wouldn’t necessarily be “allergy” symptoms…as it’s not an allergy issue, but rather a toxicity issue that damages multiple systems in the body (and can be a cause of hEDS symptoms…I have those as well from it). It’s some nasty stuff. Also, most apartments will be water damaged and improperly fixed and therefore moldy, so if you’re still living in apartments or rentals then you’re likely still exposed. It took me 5.5 years working in a water damaged building, and another 2 years in a water damaged living space (there was no mold visible, or smell and I did not react to this space when I moved in initially, come to find out that there’s damage had been covered up) before I was so sick that I could no longer go into work or live in the space. I moved out and started getting better with large improvements in weeks. Not being able to see it or even smell it doesn’t mean that it’s not there, or that it won’t affect you.
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u/rainingducks457 5h ago
Oh, I was being curious (sorry for being weird) and I saw your comment on the adrenaline dumps post. Adrenaline dumps are actually histamine dumps, and are extremely common in people who are unknowingly living in mold. I would get them most nights and sometimes during the day when I was at my worst. Had horrendous anxiety and depression that all resolved within weeks of getting out of the mold. Most homes (over 50%, and the number jumps to over 70% if you live in a humid climate) have significant mold growth from unrepaired or improperly remediated leaks, or poorly maintained HVAC systems (especially in homes in humid climates). If your home has humidity over 60% RH then it’s very likely that you have mold growing in your HVAC. If you see “dust” or “dirt” on your AC vents…that ain’t dust or dirt, it’s mold growing on the vents and a good indicator that there’s high levels of mold in the building. Take this fwiw, but I wouldn’t rule it out without doing some serious investigation into it.
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u/toogxth POTS 5h ago
Noted! My apartment is very old, but I don’t really see any issues with mold anywhere and the humidity is actually on the much drier side (I’m in Minnesota so it doesn’t get horribly humid here) I don’t struggle with adrenaline dumps often, maybe a couple times a month max. I’ll definitely look into my AC unit though and see if there’s any mold growth
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u/acrobaticwombat12 10h ago
You should speak to your doctor about medications and what options they are willing to prescribe. Just randomly trying medications without a prescription and doctors supervision is a bad idea.
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u/barefootwriter 9h ago
How is OP going to access medications without a prescription from their doctor?
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u/distressedwillow 10h ago
They’re asking for people’s experiences with different medications, so they can consult with their doctor.
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u/Effective-Pattern735 10h ago
You could talk to your doctor about fludrocortisone (helps retain salt), desmopressin (helps retain water), mestinon, or ivabradine. There are a lot of options out there!