lemonmoon

28d

i was diagnosed with POTS this week and my doctor told me that there's nothing that can be done for it other than increasing fluid intake and salt intake, as well as making sure to eat regularly. she said there's no medication for it and basically gently broke it to me that i'll just have to learn to deal with it. it feels kind of disheartening and maybe it's because i was diagnosed with two chronic and untreatable conditions at the same time, but i just wanted to hear about other people's experiences... does it improve? is there anything that you've found helps? even if it's just something little that you do to ease symptoms. it's been affecting me a lot at work and i really hoped there'd be something that would prevent that from happening so often

Propranolol

Chronic Tachycardia

Nadolol

Dizziness

Propofol

Fludrocortisone

Midodrine

Chronic Nausea and Vomiting

acute lethargy

Metoprolol

Asthma

Ivabradine

Feeling of choking

Excessive Sweating

Postural Orthostatic Tachycardia Syndrome (POTS)

Recurrent Syncope

Bisoprolol

Dehydration

Syncope

View all
  • LovelyLane

    28d

    There is medication to treat specific symptoms. I'm on midodrine and fludrocortisone for the low blood pressure, and on Metoprolol (a beta blocker) for the tachycardia. Propranolol also worked for me, Metoprolol is just better for asthma.

    • lemonmoon

      28d

      Do you find they help? I generally always had lower than average blood pressure and was told (by a migraine specialist) a long time ago when searching for the right migraine medication that propranolol wasn't a good option for people with low blood pressure? Perhaps I'm misremembering though so I'll definitely ask my GP about what you've mentioned, thank you so much!

  • Bird1620

    28d

    I take fludrocort, propranolol, and do saline infusions to help my POTS. Most people don't need this much treatment but it's what works for me. There's definitely options and beta blockers can be extremely helpful alongside increased sodium and fluids

    • lemonmoon

      28d

      True, everyone needs an individual approach, but I'm really glad you found something that works for you, I know how hard it can be to find the right mix of treatments! I'm going to ask my doctor about the treatments you mentioned so thanks for letting me know more about them!

  • LovelyLane

    28d

    Also if you get dizzy and lightheaded, lay down with your feet up on a wall! It helps get blood flow back to your head. As time goes on you'll learn to recognize warning signs before the big symptoms start and will be able to prevent them more effectively

    • lemonmoon

      28d

      I do get dizzy and lightheaded a lot and have fainted a number of times at work now, which is getting really embarrassing. One thing that I noticed before I fainted this week was random onset of excessive sweating, from my forehead and neck, just before I started getting lightheaded, so maybe that's something I can look out for in the future. I struggle to lie on the floor due to my sciatica but I think I can adapt it when I'm at home at least by lying on my bed and putting my feet up against the wall that way. Thank you for the advice!

  • Brokenbodyclub

    28d

    I would recommend a second opinion, POTS is often very treatable and can even go away with time (depending on some things) you can definitely take medication, I take two for mine, although it’s just sometimes not the first step. Don’t get down about it do some research into other doctors near you that might be able to help you better! Message me if you want some more info! Good luck love 💗

    • lemonmoon

      28d

      Thank you so much! 💛 I think it was definitely an element of initial panic and pessimism, but I'm starting to feel much calmer and maybe hopeful about it! Your reply definitely helped with that :) I'll look into it more and find out if any local doctors have more knowledge and experience with it. Thanks again, I really appreciate it 🙂

      • Brokenbodyclub

        25d

        that totally makes sense, any new diagnosis is scary and navigating it is never easy! I’m glad I could help even a little, you got this!💗

  • Sweetpea22

    28d

    I take propranolol for mine. I also use compression socks to help. And I was told all we can do is manage the symptoms.

    • lemonmoon

      28d

      Do you find propranolol helps and are there any side effects? Obviously a lot of the time the side effects are worth the sacrifice but it's always good to ask someone who's experienced taking it anyway. I have been suggested compression socks in the past due to something else so maybe I should actually try them now. Thanks for the advice!

  • Teee

    28d

    There is medication options for you! Propanol,Metoprolol, Fludrocortisone, ivabradine (not sure if that’s correct) I know there is probably more but that’s a start. I’m so sorry :( and I’m sorry your doctor just left you hanging thinking there’s nothing you can do!!

    • lemonmoon

      28d

      Thank you so much! I honestly didn't realise there were that amount of options as the doctor really made out that it was a "learn to live, manage and cope with it" kind of condition, but it definitely helps to know that there are options I can try! I was diagnosed in the hospital by a consultant, and I got the impression she wasn't incredibly invested in the outcome of my care, so hopefully my local GP doctor will feel a bit more productive about helping me

  • Sweetpea22

    28d

    There is also doctors that you can go to specifically for pot's. My cardiologist said that he will try sense propranolol is helping me but if it dosent anymore he will send me to another doctor.

    • lemonmoon

      28d

      I think I will try looking for a local doctor who maybe has more experience and knowledge about pots, thanks for letting me know!

  • Bellea606

    28d

    I would definitely get a second opinion! There are so so many ways to treat POTS. I was first told mine was untreatable too. But then I got a second opinion. Mine was covid exasperated so it was worsened from.the virus but I've always had it. Hopefully it'll lessen in time ❤️

    • lemonmoon

      28d

      The doctor who diagnosed me actually told me that mine had likely been worsened from a viral infection too, as I've had the general symptoms for a long time but was looking in the wrong places for answers due to not being very informed about POTS (I'd been suggested I may have hearing issues affecting my balance etc). I had to be hospitalised three times since 2020 due to collapsing and then having massively fluctuating heart rate and blood pressure when being checked over afterward, but only this last time did someone actually figure out what it was. I'm definitely going to speak to my local doctors more and find out if any of them are more knowledgeable about it! 💛💛

  • RyeRyeBread

    28d

    eehhh i feel like it's kind of misleading to say there's no medication for it, as most POTS patients are on medication that significantly help 😕🤨🤔 I'm not Nadolol (a beta blocker), and it has helped SIGNIFICANTLY. It literally makes the difference between me being able to function daily or not. Prior to my medication, I was unable to stand for 10 seconds without having horrible nausea, dizziness, lightheadedness, etc. I was feeling sick and unable to function most of the day. After medication, I can stand for an eternity lol but comfortably, about 20ish minutes if I'm distracted 😂 Some days it's better than others, depends on hydration, temperature, movement, etc. --- but on average, i won't have any symptoms until 2-5 minutes into standing still - and when I do, it starts out way slower and is mainly only sweating and barely lightheaded. Nadolol slows my heart rate, so what used to be 130-170+ is now 80-90s 😁 ((Different for everyone and every medication, but for me my only side effect has been worsened temperature regulation [raynauds and cold/hot shit is just really shitty now] -- but most of my obvious symptoms are low or gone altogether )) highly recommend maybe finding a 2nd doc, or bringing up meds (if ur interested) with your current doc because.... They exist, and they help [sometimes a lot!!]

    • RyeRyeBread

      28d

      Also, i highly recommend looking into things to help you cope with symptoms if you haven't already --- cooling towels, HR smart watches, sun hats, heated blankets/socks/gloves/vests, compression socks, hand warmers, depending on severity and symptoms possibly mobility aids like seat canes and rollators, journals (digital or paper) for symptom tracking, LiquidIV (if you can tolerate the taste, they taste like splenda and its gross imo lol), salt tablets or salt snacks (personally, can't stand salt enough to devour it, so i dont at all), etc. There's a lot of cheap, good things on Amazon that can really make things easier!

      • lemonmoon

        28d

        This is really helpful!! Thank you so much again!! I do have really bad blood circulation and hand tremors so luckily I'm already usually equipped with hand warmers and gloves and thick socks.. I found this really great brand where you can choose the tog level of your socks and I wear them over a standard pair when my feet are very cold! I've been using migraine cooling patches as a makeshift cooling patch for the excessive sweating I've been having as a symptom but maybe there's bigger ones or better shape ones I can look for! I've actually gotten into digital journaling the last few weeks and have started keeping track of my symptoms (it's actually really helped me remember to take my meds for my other conditions too) so I'll add on another page and keep track of my symptoms for this now too, as my I mostly keep track of pain levels for my other conditions due to having them for quite a while now. I have a walking support stick that I use for my back condition sometimes but I think I need to be more proactive and confident about using it, especially with how dizzy, lightheaded and nauseous I've been getting when standing at work. I should really wear my FitBit more often, but I've been planning to get a smart watch instead anyway, so maybe this is a push to actually get one now haha. I'll have a look on Amazon too! Thanks again for being so friendly and helpful about all of this! It feels so good to be heard and actually given advice!! 😊😊

    • lemonmoon

      28d

      First of all, thank you so much for writing such a detailed reply!! 😊 It honestly helped me feel so much calmer about this whole situation so I really really appreciate you taking the time to help! I've been getting very very similar symptoms to what you described and it's been making my life at work really really difficult as I work in a gallery and have to stand a lot, which means unfortunately I've passed out more than once there. I'm glad you found something that helps you!! Finding meds that work for you is like a miracle most of the time! I'm going to ask my doctor or try to find a new local doctor to speak to about possibilities like this so thanks for going into detail about your experience, definitely helps to hear from someone who gets it!!

  • RobinGFellow

    28d

    I have no official diagnosis yet, but I deal with many of the same Symptoms as POTSies and my own Dr prescribed me propanolol. I've also been keeping salt packets on me whenever I'm feeling lightheaded, drinking a lot of water, and wearing compression socks. I'm nowhere near where I was but I'm able to function much better and be upright significantly longer than before- aka. while it's not completely gone, I'm getting some normality back. Your condition may not be curable, but it is treatable and I know you'll find a way to work around it.

    • lemonmoon

      28d

      I'm glad it's helped you get some semblance of normality back! That's really good to hear! I do need to improve my water intake so I think that's the first step I need to address, but carrying salt packets or products around is a good idea so thanks for that! My blood sugar drops often so I usually have a sweet in my pocket at work but I'll have to add something salt based in there too! Propranolol has come up a lot in other replies so I'll try to speak to my doctor about it! Thanks for helping reassure me about everything :)

  • CoffeeBeanC

    28d

    I'm on medication therapy (fludro, propranolol, salt tabs) but also compression socks are a huge help! I also use mobility aid (wheelchair or rollator) on long trips that might trigger flare ups.

  • Lau36

    27d

    I was told the exact same thing! Just that it was a case of learning to live with it, it’s so disheartening but i’m slowly starting to find ways to make my life a little bit easier. eating smaller meals makes a huge difference for me personally

  • Belugabear

    27d

    Medication can help! I’m on midodrine for low blood pressure and it works pretty well, but I also liked fludrocortisone (it just had some side effects for me) but in addition I’d recommend compression socks and saltstick tablets! Both have helped way more than I expected

    • lemonmoon

      27d

      I've just bought some Salt Stick chewables (could only find these, not the tablets/capsules but have heard these work well too) and I'm definitely going to try compression socks too, so thanks for the recommendations! It's good to hear that small changes and products can actually have a big improvement!

      • Belugabear

        27d

        oh I meant chewable a sorry! They taste strong at first but you get used to them. I wish I had more suggestions but hopefully even those small things help!!!

  • JustRachelle

    27d

    From my understanding there are different types of POTS. So depending on which types of POTS you have that could be the reason you were told that. There isn’t any medication that’s going to “cure” POTS however depending on the type there is medication for certain symptoms. I take a beta blocker called Zebeta. Yes it helps with heart rate and sometimes I think it lowers it to much.. but it makes my fatigue so much worse I’m starting to not want to take it.. it doesn’t do anything for the other symptoms at all. 🤷🏽‍♀️

    • lemonmoon

      27d

      That's true, and honestly, meds aren't always productive or helpful for everyone so I completely get that trying other things is a better first option. Thanks for telling me about your experience with Zebeta though, it's always good to hear how medication affects actual real people rather than just seeing statistics on medical sites etc

  • Zemi

    27d

    There ARE medications you can take. Not specifically for POTS but for the symptoms. There are beta blockers like bisoprolol or other meds like midodrine and ivabradine that are used by POTS patients, including myself. Beta blockers lowered my blood pressure too much and Midodrine did absolutely nothing for me personally, but I found Ivabradine to be the most helpful. My cardiologist has given it to his other patients with POTS with great success. However keep in mind that it is VERY expensive without good insurance as it is a newer medication so make sure your doctor labels it as medically necessary. Mine would've be $600 for a 30 day supply without insurance.

    • lemonmoon

      27d

      I'm sorry to hear that it's not available without good insurance, it's honestly so alarming that people can't access medication that could truly help them, but I'm glad you're able to access it and that it works well for you! I'm in the UK so most meds should be available via the NHS depending on if they're approved here or not. $600 a month would be so unbelievably cruel!

  • Magpie3

    27d

    Dude I feel you, my doctor told me that there was no medicine and that I’ll out grow it with time

  • Beetlejuul

    25d

    I’m kinda in the same boat, the disagreeing doctor didn’t tell me much other than drink water and eat a lot of salt. My cardiologist however switched me to a medication that works a lot more than propranolol did and has treated other pots patients. I also have friends with pots and they helped me figure out some things to advocate for.

    • Beetlejuul

      25d

      Diagnosing*

    • Zemi

      25d

      Having good water intake can definitely help with POTS but for some people, that's just not enough. Some of us need medication on top of diet or lifestyle changes.

  • CoffeeAndDogs

    25d

    Yes, there is no known cure for POTS as it is an autonomic disorder. However, you can work to manage symptoms as best as possible. Many do benefit from medication, but not all and there is only a couple of medication types that can be beneficial. Diet including fluid intake and electrolytes can play a big role. As you've stated your BP runs on the lower side, increasing sodium could help significantly with this. Low BP is often a sign of low blood volume and dehydration. For many raising a low BP and keeping HR more steady through fluids and electrolytes can greatly reduce the frequency and severity of symptoms such as dizziness, tachycardia, presyncope, and syncope.

  • Holz

    24d

    I went to a POTS specialist who diagnosed me His tips: “It can’t be cured but it can be managed” Compression socks Exercise (lying down) Lots of fluids More salt Medications Be patient with yourself I’ve only been diagnosed for just over a year, it’s a lot to process and for a while I had to grieve the life I thought I would have and that’s okay. A year later and I have an assistance dog in training who is helping me with it. POTS can be hard to deal with but over time you work out please don’t let that doctor discourage you, you’re doing amazing, first step is diagnosis now you can learn to manage it :) you’ll be okay and try to talk to a doctor that you know will be on your side, I’m so sorry for what you’re going through but you’ve got this! It does get easier to understand x

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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