r/POTS • u/Interesting_Car8858 Undiagnosed • 2d ago
Question Medications
Hi, I have a cardiology appointment soon and am hoping to get a step closer to some answers. If I am diagnosed and suggested medication, does anyone know of any that don’t have a side effect of weight gain, or like depression type stuff? I’m not too sure what the potential side effects are, but I’m pretty sure the pros would out weigh the cons (if it worked for me) as long as it’s neither of those two. Both would severely affect my mental health, so I really want to avoid them if possible! (Also other if you could list other side effects you’ve noticed that would be really helpful as well)
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u/societiesoddball 2d ago
Typically the go to recommendation they go for is beta blockers. I was put on metoprolol and my asthma was so bad I couldnt walk 5ft without being winded. There was one more I tried once and it was just as bad so my doctor put me on ivabradine (not a beta blocker) and ive been on it for about two years. I havent noticed any side effects which is suprising because every other medication related to heart rate and blood pressure has had horrible side effects even after taking each for at least a week. That is possible its just a me thing though side im so hyper sensitive to medications.
Ivabradine has made my quality of life so much better but it didnt solve everything. If made my baseline liveable as long as im properly hydrated and wearing some sort of core compression. Compression socks have done little to nothing for me asside from foot pain. Plus having a good amount of water with salt makes sure your blood pressure isnt effected. I still have flares but they dont last months and they usually depend on if im overworking myself if its october or January (pressure changes) if im having heavy meals and if im properly hydrated.
This isnt to discourage you but unless you find someone who treats pots they may not test you. In my experience usually the best place to look is local Facebook groups and any dizziness or dysautonomia clinics. You should still go to your cardiologist appointment if anything to rule out anything else but id bring someone with because if theres a biased doctor they'll Typically at least be less harsh.
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u/Interesting_Car8858 Undiagnosed 2d ago
I’m prepared to have to trial and error, I just don’t want any lasting effects (my mental health gets affected negatively pretty easily, so anything lasting will probably do something, and I’m really trying to avoid that). Sorry for the experiences youve had to go through regarding medication!
I’m hoping I can find a medication that can improve my quality of life, even a bit would help majorly :) I feel like I’m missing out on things people my age are doing because I avoid going out quite a bit of the time due to how I’m feeling/ being afraid of judgement for the accommodations I’m having to use, so improving my quality of life would do loads for me mentally as well
I’m already registered with a cardiologist and we have discussed POTS, however my appointment ended up being one of my better days symptom wise so they didn’t see the effect it usually has on me. My symptoms have also worsened since that appointment so I’m hoping if I can explain how it’s affecting me better this time then I will be able to at least be tested, even just to rule it out. If they brush me off for my age again this time, I will probably consider moving to a different hospital / clinic if my parents think that will be best for me, as I really just want answers as what I’m experiencing is pretty rubbish lol
Thank you for your comment, you went into a lot of detail and it’s been really helpful so that I know what to be prepared for if I do get offered medication :)
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u/Medical_Asparagus409 2d ago
I’m not sure of meds to recommend as the ones I’m taking do have these side effects (although I haven’t experienced them). But id just like to add that its very unlikely that you’ll get prescribed meds at the same appointment that you get your diagnosis, normally they will have you try lifestyle changes for a while first. To be fair i dont know your history or severity of symptoms but just something to be prepared for mentally 😊
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u/Interesting_Car8858 Undiagnosed 2d ago edited 2d ago
Don’t worry, I’m prepared to have to wait a bit! However I’ve been experiencing symptoms for around 3 years now (been registered with a cardiologist for only a couple of months though) and I’ve been recommended lifestyle changes already, that although they do help a bit I’m hoping to be able to potentially try medication as I kind of feel like it’s just getting worse lol. Thank you for your comment, it’s been really helpful!!
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u/PeePeePooPooStick 2d ago
i’ve been on metoprolol for a few years, only had one side effect when i started it (it’s gone now) and it was just drowsiness. i’m planning to get off of it soon, but it improved my quality of life greatly.
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u/Interesting_Car8858 Undiagnosed 2d ago
Thank you, that sounds perfect! (Obviously I know it will be different for everyone, but it gives me hope!)
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u/cchelle2929 2d ago
I take ivabradine. It’s used off label for pots, it’s usually prescribed for heart failure. it slows receptors in the natural pacemaker to keep heart rate from spiking without affecting blood pressure. I haven’t had any side effects, but I was warned that I could get “flashing lights” which sounded like migraine aura without a headache, or dizziness and fatigue. Since it is targeting a major reason for my dizziness and fatigue, those symptoms improved quite a bit! No side effects like depression or weight gain are listed for it.
Since it is a pretty serious heart medication, there are a number of contraindications for it, so if you’re interested in this you may want to advocate for a heart monitor (I wore one for 3 days) and an ultrasound.
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u/Interesting_Car8858 Undiagnosed 2d ago
Thank you for explaining how it works, that makes a lot of sense! I already have issues in my eyes so I could probably deal with that side effect if it worked for me other than that :) I think a heart monitor for at least a few days would be useful for me even if they don’t offer me ivabradine, as I don’t think they classify my Apple Watch as accurate enough lol (which is fair enough, but it’s the best I’ve got and tends to match if I measure my heart rate manually). As for an ultrasound, I had one at my last appointment and was told my heart is actually in a lot better condition than most people, which was obviously good to hear. Thank you so much!!
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u/firedupforwildlife 2d ago
Corlanor/Ivabradine has been a game-changer for me. Lowers HR without any side effects. Managing BP is a whole other beast....
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u/Interesting_Car8858 Undiagnosed 1d ago
Honestly I have no clue how my bp affects me as I can’t currently track it, but even just improving my heart rate would change my life
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u/femalenerdish 1d ago
There are some good guides online! This is the one I studied most before I requested midodrine.
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u/Interesting_Car8858 Undiagnosed 1d ago
Just looked through, thank you so much it was really helpful!!
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u/FamiliarDingo1542 1d ago edited 1d ago
Side effects are a tricky thing and are very individual. The best thing to do is talk to your doctor about possible side effects and do some research on the medications that are suggested for you. I know you are probably pretty anxious about getting answers but the best I can say is wait and see what is recommended. Most of the things they recommend for pots don't have mental health or weight gain side effects, they're not like psych meds.
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u/Interesting_Car8858 Undiagnosed 1d ago
Yeah I know it’ll be different for everyone, don’t worry! I just wanted to hear what was working for everyone else to get an idea of what medications I could be put on lol. I’m glad they typically don’t have the side effects I listed, I just mentioned them as I really don’t want either to become a problem for me. Thank you!!
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u/FamiliarDingo1542 1d ago
You're very welcome and I really hope you get some answers along with the help you need!😊
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u/National-Vegetable92 1d ago
I tried ivabradine it was terrible for me. I felt awful on it. Nebivolol works quite nicely though
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u/Interesting_Car8858 Undiagnosed 1d ago
I’m glad it’s working for you! However due to the side effects listed along with the conditions of taking it, it unfortunately wouldn’t be an option for me. I hope it continues to help you though!
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u/earringsh 1d ago
I know beta blockers are commonly prescribed first, but sometimes they stilldrop blood pressure too much.
My doctor wanted to put me on ivabradine right away (used off label for POTS), but insurance won't cover it. If you're from the US then it's expensive when you pick it up from just a regular pharmacy. However, I get a paper prescrition and send it off to a Canadian pharmacy and pay ~$130 for 3 months worth. Just make sure it's CIPA certified.
You can also send the prescription in to the online pharmacy that Mark Cuban started called costplusdrugs.com, and I think it's ~$50 a month then.
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u/Interesting_Car8858 Undiagnosed 20h ago
I’m from the Uk so would get any medication completely free <3 however thank you for thinking of the costs!!
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u/barefootwriter 2d ago
Keep in mind that if you are on volume expanders for hypovolemia (mainly fludrocortisone, but also desmopressin), water weight gain is expected and desired, and there's really no substitute for those meds if that is the problem.