Please anyone with pots??

[Anonymousxo]

I went to a&e yesterday and I constantly feel faint and dizzy more so when I'm walking and standing still but it also happens occasionally when I'm sat up, doctors speculate pots as when I stand my heart rate shoots up to 130/140 but when I'm sat it goes back under 100 - however what worries me is that I'm symptomatic all the time!!! It doesn't matter if my heart rate is low or high I'm always symptomatic except when lying down :/ this is making me think what if it isn't pots and it's something else....can anyone please tell me if you can be symptomatic with a normal heart rate with pots? :( also I suffer everyday, there's not a day that has gone by since august where I haven't been faint, I had a holter monitor which also showed these abnormal spikes.

@Anonymousxo Yes, it's normal for it to differ and vary. There are also some other conditions very similar to pots that they'll likely want to check you for at some point, just because it may affect which meds you get, but for all of these some fluctuation is normal.

I'm sorry if I came off as medically oneupping you! I didn't mean it like that at all, was just trying to give context of what my pots is like day to day. For what it's worth, I think yours is affecting you more at the moment - that matters far, far more than the exact number of the high rates. I remember being untreated and I felt very like you describe. It's awful and I really sympathise with you.

I was diagnosed with pots post Covid (March 20) and recently reinfected and pots symptoms are back . They had died back over about the past 8 months after the vaccine. I think it’s when I’m post viral that pots flares for me. Things that seem to help:
Daily antihistamines, inc prescribed famotodine for suspected MCAS (pots service said this is likely underlying cause for me).
Making sure my iron is not low (ferritin - shouldn’t be under about 50 - GP may just say it’s fine but you need to actually see your ferritin number as there’s a lot of undiagnosed iron deficiency among pre menopausal women).
Compression stockings, fluids, salt as basic starting points.
Smaller meals, limited caffeine and alcohol. Ideally cut out.
There is some research about link between pots and gluten sensitivity. Any dietary sensitivities that aren’t managed?
When I was most symptomatic I couldn’t sit up for long, had to take breaks to lie down, if I was sitting eg in a meeting I had to sit cross legged or regularly flex legs to stop blood pooling and symptoms.
If you can do short walks that will help, also recumbent bike and swimming. I can’t manage that yet as still close to second COVID infection but I’m gradually able to be more active.
Potsuk website is really good.

Agree also with Pp , don’t become preoccupied with numbers as if/when you see a pots service they will hopefully do TT test but are guided by symptoms

[quote Innocenta]@Anonymousxo Yes, it's normal for it to differ and vary. There are also some other conditions very similar to pots that they'll likely want to check you for at some point, just because it may affect which meds you get, but for all of these some fluctuation is normal.

I'm sorry if I came off as medically oneupping you! I didn't mean it like that at all, was just trying to give context of what my pots is like day to day. For what it's worth, I think yours is affecting you more at the moment - that matters far, far more than the exact number of the high rates. I remember being untreated and I felt very like you describe. It's awful and I really sympathise with you. [/quote]
Hey no not at all, it's just I see a lot of people with pots have a ridiculously high heart rate and mine is never really high to that extent, makes me feel that maybe it isn't pots but obviously I do get the raise in heart rate and it does go into the 100's
Thank you for letting me know I can be symptomatic without a high heart rate, that makes me feel a lot better...a&e doctors and cardio suspect it but it's just such a long waiting list just to get some help regarding symptoms :(

@TiddleTaddleTat

I was diagnosed with pots post Covid (March 20) and recently reinfected and pots symptoms are back . They had died back over about the past 8 months after the vaccine. I think it’s when I’m post viral that pots flares for me. Things that seem to help: Daily antihistamines, inc prescribed famotodine for suspected MCAS (pots service said this is likely underlying cause for me). Making sure my iron is not low (ferritin - shouldn’t be under about 50 - GP may just say it’s fine but you need to actually see your ferritin number as there’s a lot of undiagnosed iron deficiency among pre menopausal women). Compression stockings, fluids, salt as basic starting points. Smaller meals, limited caffeine and alcohol. Ideally cut out. There is some research about link between pots and gluten sensitivity. Any dietary sensitivities that aren’t managed? When I was most symptomatic I couldn’t sit up for long, had to take breaks to lie down, if I was sitting eg in a meeting I had to sit cross legged or regularly flex legs to stop blood pooling and symptoms. If you can do short walks that will help, also recumbent bike and swimming. I can’t manage that yet as still close to second COVID infection but I’m gradually able to be more active. Potsuk website is really good.

Hey so yeah unfortunately it really affects my life to do any type of exercise especially swimming I would worry I would faint tbh :( atm I'm trying small walks but the more I exert myself, the worse my symptoms get :/

Yes I was similar for a good year but it did improve . There’s a pots Facebook group which is helpful for ideas, I know a lot of potsies swear by recumbent bikes (lying down and pedalling). Or any sort of flexing of the ankle/calf is going to help. You really need to see a specialist cardiology dept though as you may find it is only medication that will help you start exercise , build leg muscle, and get out of the vicious cycle. Deconditioning is really unhelpful for pots but at the same time pots often occurs alongside me/cfs and overexertion worsens symptoms. It has to be a very delicate balance unique to each person. I was nearly prescribed ivabridine which I know helps a lot of potsies but they will need to rule other things out first and ideally do a tilt table test.

@TiddleTaddleTat

Yes I was similar for a good year but it did improve . There’s a pots Facebook group which is helpful for ideas, I know a lot of potsies swear by recumbent bikes (lying down and pedalling). Or any sort of flexing of the ankle/calf is going to help. You really need to see a specialist cardiology dept though as you may find it is only medication that will help you start exercise , build leg muscle, and get out of the vicious cycle. Deconditioning is really unhelpful for pots but at the same time pots often occurs alongside me/cfs and overexertion worsens symptoms. It has to be a very delicate balance unique to each person. I was nearly prescribed ivabridine which I know helps a lot of potsies but they will need to rule other things out first and ideally do a tilt table test.

Dr Lim recommends the Mirafit recumbent bike, starting with an extremely small amount (less than half a minute if necessary). I'm not able to use mine at the moment for reasons unrelated to my POTS, but I did find it helpful as a safe exercise I could build up in the past.

I am on midodrine, fludrocortisone, ivabradine, sertraline as an adjuvant therapy (not so common but I think it's mentioned on the potsUK site!), and beta blockers PRN. Plus MCAS meds and so on, which same as for you, might be related. It's definitely helpful for me, the more diligently I can manage my POTS. Even with the meds I'm on, we are not at the final ceiling of care quite yet - still a handful more options.

A new POTS diagnosis can be very scary, largely because of the hyperbolic Americans who present it v dramatically online - but it truly is a very manageable condition in the medium/long term, and there may well be spontaneous improvements as well as loads they can do to help, OP!

@TiddleTaddleTat

Yes I was similar for a good year but it did improve . There’s a pots Facebook group which is helpful for ideas, I know a lot of potsies swear by recumbent bikes (lying down and pedalling). Or any sort of flexing of the ankle/calf is going to help. You really need to see a specialist cardiology dept though as you may find it is only medication that will help you start exercise , build leg muscle, and get out of the vicious cycle. Deconditioning is really unhelpful for pots but at the same time pots often occurs alongside me/cfs and overexertion worsens symptoms. It has to be a very delicate balance unique to each person. I was nearly prescribed ivabridine which I know helps a lot of potsies but they will need to rule other things out first and ideally do a tilt table test.

Yeah exactly, mine definitely gets worse on exertion, any type of walking and then stopping my heart rate will easily go into the 140's...:( thank you though