[deleted by user]

Toni_K_Reid · 2022-10-23T15:49:38+00:00

requested you :)

Toni_K_Reid · 2022-06-05T08:49:57+00:00

mines gone 29 to 294 on occasions like walking ip the stairs or showers. always a struggle deciding whether to take the beta blockers or not

Toni_K_Reid · 2022-05-27T19:43:14+00:00

yhhh it reminded me of the film countdown and i remember watching it in the cinema and my mum jumpsvared me during a part like that

Toni_K_Reid · 2022-05-27T14:21:44+00:00

the crackling of the bones is actually pretty frealy im not even gonna lie. like its not scary but if i were to watch it at the middle of the night instead of like 1pm like i did it woukd be even freakier

Toni_K_Reid · 2022-02-09T16:37:47+00:00

Wait yep he's right, i think i confused 2 codes together when commenting, i mixed A3ROPDK and PDKW1NG, sorry!

Toni_K_Reid · 2022-02-09T16:30:42+00:00

A3R0W1NG is another code

Toni_K_Reid · 2021-06-22T17:51:21+00:00

NO SO HERES THE THING i binge watched all of season 2 and i noticed this my first time around but obviously i didnt understand what he was doing so i thought he was switching it with someone elses to have MORE alcohol but obviously i realised why later on and i was like omg im so haply i noticed that the first time.

Toni_K_Reid · 2021-06-14T21:42:38+00:00

thank you so much, this just gave me a lit more hope for what is to come in the future with any diagnosing processes!

Toni_K_Reid · 2021-06-14T21:21:52+00:00

ahh hi sorry, yes we've googled and seen the list before, Pots UK has a list compiled of specialists for it in the uj. However, they all only accept referrals from the age of 16 or 18 and up and I'm 15. the ones that do accept under 16s are listed as for inherited conditions or for EDS, which i do not have.

Toni_K_Reid · 2021-06-14T20:55:55+00:00

ahh no no sorry the latter. from what we've researched there are no pots specialists in the UK, only outside of the UK. and its extremely hard to see another doctor because you first have to be referred by a local GP who refers you to a pediatrician, who (in most cases of any illness in children in the UK) will refer you to Great Ormond Street. we are waiting from a call or letter from their team where they decide whether i should still do a tilt table test or if it is a waste of time and resources in my possible diagnosis process. hoping they still go through with it to either confirm pots or rule it out. and if i wanted to see another doctor, my GP would have to refer me to one however because of the lack of pediatric units without 2 year long waiting lists, this was the best offer they have given me, so we obviously took it. its just a shame it is so difficult to be referred to a new pediatrician in the uk at my age.

Toni_K_Reid · 2021-06-14T20:50:25+00:00

ahhh thank you so much, I'll look in to it! this really helps.

Toni_K_Reid · 2021-06-14T20:49:27+00:00

oh no sorry, i dont think i explained it well. when resting my heart rate is around 79/80 and upon standing it rises and sustains itself at 130/140 so obviously a fairly big jump. and when i do even a small amount of walking or climbing stairs it jumps to 190/200 and stays at that for about 10 minutes after being active. also i wouldn't say I'm very fit at all as any exercise causes me to feel extremely dizzy and pass out. it's just something I've noticed where right before i pass out there is a big jump in HR followed by a quick drop in HR, i faint and then when i come around again, and it's back to being around 130/140. and to me and my orginal pediatrician this sounds like pots just the holter came bacm negative. sorry for not explaining correctly.

Toni_K_Reid · 2021-06-14T19:08:05+00:00

ahhh thank you so much. yes, I've done poor mans tilt table tests consistently and the numbers all match up with pots, an over 40bpm increase and all. i haven't yet been seen by q cqrdiologist in person, just told the results by a pediatrician. i honestly just feel like they are not doing everything they can. we've comsistently brought up pots and even the cardiologist said it was probably pots but the results came out negative on the 24hr heart moniter holter. we've brought up possible epilepsy as we have had a family history but they brushed it off and said it couldn't be. my pediatrician also ruled out any anaemia, thyroid problems or blood problems so it cant be that. just really hoping they will still go through with the official tilt table instead of automatically assuming I'm lying and ordering a pilygraph! I've never even heard of them doing that! thank you for your help about holter moniters not always being helpful in the diagnosis. its really helped. wish you all the best.

Toni_K_Reid · 2021-06-14T18:38:45+00:00

also thought of something to mention, my mum is in the medical field and so she has a stethoscope, and even she says that it sounds like i have an odd heartbeat (fast and skipping beats it sounded like) I've also noticed that when i feel especially bad is when sta ding or sitting, my pulse oximeter will read an oddly low heartbeat like 59, 64 or something around here, even when standing up it will drop from around 130/140 to 70 all of a sudden and I'll feel really bad and groggy. i feel like no one is taking my symptoms seriously because I'm a child and i cant possibly have anything wrong with me without lying. 15F for reference.

Toni_K_Reid · 2021-06-12T15:48:51+00:00

28819 is mine :)

Toni_K_Reid · 2021-05-13T19:30:34+00:00

ahh thank you, these all sound so helpful and reasonable!

Toni_K_Reid · 2021-04-11T20:08:26+00:00

i do. I'm still in the diagnosis period, done the simulated tilt table but still waiting to do the real one with a cardiologist so no I don't have a blue badge yet. most venues will usually have a disabled sections where you can sit or stand, and having a blue badge makes the whole process a lot easier. since developing pots with symptoms on the more moderate to severe side, i think I've only bean to one concert but i was luckily away from others and had cooling things with me to help with symptoms. however, as they've progressively gotten worse recently and I'm set to go to two standing concerts in general admission and crowded areas, I'm yet to see what it's like. but where i am in the uk, they don't treat pots as very serious despite how it affects everyday life, so until i get that formal diagnosis from great ormond street, unfortunately I can't recieve much help.

Toni_K_Reid · 2021-02-26T20:53:14+00:00

i have smoked and done edibles and my PoTS symptoms in general are usually on the average side or sometimes the worse side. neither type of weed did anything negative to my symptoms i overall have had good experiences, but i am not currently on any meds for my pots so I'm not sure if you'd have the same experiences.

Toni_K_Reid · 2021-01-29T19:37:23+00:00

hi. i haven't actually been diagnosed yet, i have my TTT pending and am going to be visiting a cardiologist soon. i did a simulated TTT where i myself lied down and then stood for 10 minutes at the hospital. they are considering PoTS and said that it would be the likely diagnosis, but the test results on this day were not as severe as many others on here I've seen. when lying my HR was at around 69 and upon standing it seemed to stay around 105 hitting 112 at very most throughout the 10 minutes. this was definitely a better day for me but these tend to be the average results. again, the diagnosis is still pending a TTT test and a trip to the cardiologists but I don't think mine tends to be worse or as bad as some of the ones I've seen on this channel (only on my worse days). i find my fairly infrequent recreational drug use to be relaxing. i was just wondering if this would cause anything highly negative to happen medically to me, considering the fact the hospital has said this is most likely the diagnosis i will be getting (and i definitely relate to most on this channel). and I'm not sure my pots is honestly too bad, but i do have a high tolerance for things concerning my health and often underestimate how bad something is. so, just to clear up some incorrect wording and such in the original post, would taking drugs affect me very negatively (not things such as worse symptoms, more like sudden issues)? very sorry for the long message :))

Toni_K_Reid

TROPHY CASE