Dealing with a POTS Diagnosis: Seeking Advice and Support

@Beetlejuul 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.

@Beetlejuul Diagnosing*

@Zemi 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!

@JustRachelle 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

@Belugabear 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!

@RobinGFellow 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 :)

@RyeRyeBread 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!!

@RyeRyeBread 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!

@Bellea606 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! 💛💛

@Sweetpea22 I think I will try looking for a local doctor who maybe has more experience and knowledge about pots, thanks for letting me know!

@Teee 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 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!

@Brokenbodyclub 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 🙂

@LovelyLane 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!

@Bird1620 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 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!