persephone

Even those of us who feel really rotten now, like I do (I knew I would pay for my weekend in Scotland eventually!)...at least we are alive. I just found out that a girl in the year below me at University with epilepsy fell awkwardly, hit her head, and died. She wasn't found til the next morning when a friend came to find out why she was absent from class. she was only 21. Her parents are devastated. I feel so lucky- the worst injury I've sustained when falling is some wounded pride and a broken foot. How trivial and insignificant. Poor girl- what a shock for everyone. She was the life and soul of the party, they say. It certainly makes you get things into perspective when something like this happens. none of us know what's infront of us, but atleast we know that POTS won't kill us. It turned out that one of my closest friends at St andrews was at school with this girl, and went to the funeral. But she didn't tell me about it because she didn't want to upset me while I was there, because she thought it would put a downer on my weekend. how guilty do I feel now? The point of my post was just that we should all remember how lucky we are- I know it doesn't feel like that, when you're POTSy etc, but it's true--we're a lot better off than some people. Live each day as if it's your last- one day it will be.

I don't mind being told I look good if I feel good, but I think I have this deep rooted fear of not being believed, because, well, for so long, no one knew what was wrong with me. The subtle implication in my eyes was that my symptoms and the way I felt so rotten were visible only to me. I suppose it's reassuring to know, in a sense, that if we're feeling rubbish, other people see it too. Otherwise, I feel like I have to justify why I feel bad. I think most people with POTS have negative experiences form medics who've been cynical/sceptical at some point...

Thanks again everyone! I am paying for it, as I knew I would. I'm aching all over like I never knew was possible...it feels like I'm lying on a bed of nails But I went, I did it and it ROCKED!

Wow! you are a role model for all of us. Sometimes there's nothing else left to opt for but stubborn determination. You are hardcore though, getting through the burning sensation. That would've driven me nuts. just out of interest, do people with EDS often have difficulty taking injections or giving blood samples? I'm about to go get tested for EDS, and my veins ALWAYS collapse whenever I have blood done. It's not that I panic, it's that my veins do!

Can you split the dose? That's what I do when I'm on BBs...I take one tab at 8am or whenever I get up, and another one about 12 hours later. But then everyone is different, I guess Good luck! I know what you mean about feeling tired and weak It's a horrid feeling, but atleast it goes after a bit..

Anything by Kate Bush or Tori Amos. But when well enough, I enjoy a good old dance to some bangin' techno and trance

Hi everyone, just thought I'd let \you know that further to my very strange couple of days of high blood pressure and erratic pulse last week, I decided when I woke up on Saturday that the best thing to do was go to St Andrews and see all my friends. Man, it was worth it! I've never fitted so much into so short a time--I didn't waste a moment. And the nearer I got to St Andrews, the better I felt- I haven't been so active since before I got the flu and my POTS kicked in real bad in October. It was SO good to see everyone again--and the sun was shining. We had a garden party and a picnic, and we all drank champagne to toast my degree being finished at LAST! It felt GREAT! I must have seen over forty friends, and I even managed to pop into th eDepartment and see my favourite lecturers--I totally surprised them, as they didn't know I was coming! We painted my walking stick all the colours of the rainbow, and one of my friends took it upon themselves to write "Persephone is a sex goddess" in massive letters--atleast people will know who the walking stick belongs to if I leave it anywhere?!?! I'm so glad that I got a chance to say goodbye to people--it was all too abrupt when I got out of the hospital in March and my mum just wanted to take me home right away. Saying that, although I've had a fantastic couple of days up there, I do miss the life I had. And the flight back home-oh my god, I felt horrendous! As the plain took off my heart was beating so heavily- dunno if anyone else gets this- not so much fast as with a lot more pressure. It was almost painful. Hmmm. But I'm home now. and SO SO glad that I went, and didn't stay at home regretting not going, instead. Thanks for all your support when it was bad last week. I'm sure I wiull pay for my sins later this week, but its worth it for the beautiful time I had up there. I feel alive again!

Thanks everyone for being there. You are all awesomes! I wish there was a hug icon thingy! There isn't so I'll just put *hugs*! Cheers Love P x x

Hi everyone, I've been in touch with the nice cardiologist here in Bristol and he says I need to monitor my BP every couple of hours so we can talk again Monday, after having a series of rehular BP and pulse readings. he was the only person I could get through to, in the end. He says we'll need to see what happens next week- if I'm still so bad it'll need to be addressed. Just hearing the reassurance brought me down--the fact he didn't thoink it was urgent/lifethreatening etc etc. I think the adrenaline was making my readings even higher- you all know how it gets! I feel so much better now, and my bp is back down to 130/80. My pulse is stil running a bit fast at 110 sitting, but I feel a lot calmer, which is half the battle won, as I'm sure you can all appreciate. So...thanks for the concern, and sorry about making you all worry!I was worried too! But I feel a lot better now. Thanks for your help, guys You are all awesome Just sorry for caausing stress/worry *APOLOGETIC HUGS*

I'm so sorry to be disappointing you all after yesterday's great news. I felt on top of the world then! But I woke up today and felt like I had slept on a bed of nails. I ache everywhere. I took my blood pressure this morning and it was back to 196/142 and my pulse was 175. I rang my GP and simply got told to go to ER because they simply cannot treat me anymore. But that's pointless- there are no autonomic specialists here and they don't know what to do either. My flight to Scotland to see my friends is booked for tomorrow and now I don't know what to do--I would have a rotten time being all achy like this. But worse than that is my mum's attitude- dithering between concern and "ha! I told you so!" looks and comments. She's lectured me on booking yet another flight I can't manage....to be fair, I've had this happen a few times, where I'm too ill to make the flights and I lose the tickets, esp as the tickets are usually non-refundable. But still how do these comments help? It was MY money that's gone to POT (no pun intended, well, maybe a little one! ) and does she think I don't KNOW it's a waste? So: would you go if you were me, armed with painkillers? *Stay at home with your mum, and cry all weekend for the fun you should be having? *go to the hospital? *just sit and cry like I am now? *or something else? any suggestions gratefully received. Do you know, I'm starting to think the classical theory of hubris and nemesis is true. Atleast it is for me. EVerytime I have one good day, or something good happens, I *always* pay for it and then some! Seriously hacked off.

Hello hello hellloooooooooo! *bouncing off the walls!* Thanks guys for being so pleased--you've actually been more excited than most of my family and friends...one 'friend' was actually quite nasty about it. I love the puns- conGRADulations--how clever! and roselover- thanks for the very funky colours!!! I did an MA in English Language and Literature at St Andrews University, Scotland. Now (all being well) I'm going off to Oxford University to start their graduate masters programme in Medieval English, as this has always been my dream...they have al lthe manuscripts I want to look at, and the world experts. Loads of people think medieval stuff is dull--they don't know how exciting it is to unpick stuff and discover that actually, Lancelot is camper than a row of tents, Guinevere is more manly than Arthur, and Chaucer is some kind of rude dirty old man! I *love* Medieval stuff--it's so naughty!hee hee...the first person to use the f-word was William Dunbar in 1508 at the court of James IV--a Scot, no less- no surprise there then!!! Going back to St Andrews this weekend to party with friends like it's 1999. THanks again for all being chuffed for me--still a bit pained that it was more than some people I know could manage to be pleased...but you guys are, and my folks are...so WOOT!

Yup, I have first class honours! The highest grade you can get. Bring it on--ok, it took me an extra year to finish, but man, it feels worth it today! Isn't it great when something goes right for a change and you bounce back up to the sky and see the world, outside of the POTShole? Hurray!

I had a similar problem but within about a month of taking ProAmitine. I've been told to stop taking it when I feel well, so that my bodsy doesn't build up a tolerance/resistance to the drug. I would see the Dr and ask if something similar might work for you?

Believe me, I know how you feel! I had a neurologist in Scotland tell me I suffered from severe anxiety disorder just before I got my real diagnosis of POTS_-he made me feel like a circus animal- asked me to stand up and faint in front of him so he could film me with his camcorder! The letter sent to my GP sa a report was a disagrace- I have my own copy and i'm just waiting til I'm storng enough so I can sue this B**TARD's ***! He says all sorts of things- she "thinks" she has raynauds but all she's describing are her hands going cold in cold weather. uh.....no!!!! I thiunk this guy was a bit retarded personally--whenh he came in to see me, we had a ten minute conversation about left handedness cos he was left handed, like me. What's the FIRST thing he says in his letter? "THis RIGHT HANDED lady....." LIKE, HELLO?!?!?! I had been confined to bed in a cardiac care unit, and this neurologist came along and went "nope, she's nuts, sen dher home" and that was it- they threw my stuff in black bags and I was made to sit and wait for my parents to fetch me. Can you imagine what that did to me, to them? This guy made my own parents doubt me--made them think perhaps all this was self inflicted! I mean who the **** would choose to be like this?!?!?! He said that I hyperventilate myself into dizziness, again he was talking crap because half the time when it happens, I'm not breathing ATALL! So Morgan, I empathise completely. It's 6 months since I received this shocking treatment, and it still really upsets me. Somedays I can't do anything but cry about it--but I'm about to get even. I'm just waiting. Now my degree's out the way, things will get easier. My initial reaction was to go to the papers, but I don't know if all the stress of having people know this business will help. I just want this "doctor" to PAY. God, reading back over what I've just written, I sound like a right psycho! I'm not, honest! (well, only if someone tells me Colin Firth isn't beautiful )

Hi everyone, just wondered what you think about this. You will all know that I've had a great few days, been feeling fantastic and like I never had POTS in the first place. Now I've come back down with a bang. I didn't sleep too well last night, then I woke up today and got paler and weaker as the day went on. I felt like my pulse was going really slowly, and so I took a measurement with my monitor. It was fine- text book perfect- my bp was like 100/55 and my pulse was 70. Then I decided to take a reading while I was making a cup of tea in the kitchen because I could feel my heart pounding and my chest was really uncomfortable. The reading was 197/135 and my pulse was 131- not bad by my standards, but my pulse feels really SLOW--i don't understand this--it's not quick, I'm not getting rapid poundings, it's like a slow, heavy sensation. I don't get it. I went to bed for a bit to lie down, fell asleep and kept waking up- every time I did I felt so faint I thought I would die, and fell back into unconsciousness each time. My mum came up the stairs to see I was ok, and my eyes were flickering, my face was kind of twitching, I tried to speak and the words wouldn't come out. Then they were sort of slurred and jumbled, but then after a bout 30 seconds I was ok (before you asked, I'm not drunk! ) I feel a bit better now, but my chest doesn't feel right. I feel as bad as I did the day Iwas last admitted to hospital here, but it doesn't seem worth going back- there are no autonomic specialists, they won't do anything to help. So...anyone have any ideas of what to do, or what is causing all this? I came off all my drugs on the advice of the cardiologist here who said I would build up tolerances to them. Imagine if I had taken midodrine today with a BP that high! terrifying, or what? Sorry not to have brighter news Saying that, I have a job interview for Friday which might be quite exciting, but it's in a high pressured sales environment which would be like HIDEOUS for the POTS. You never know, I might be ok. Ican but go along and enjoy the experience of the interview!

At long last after about THREE HOURS of trying, I finally sussed how to upload a pic of Colin Firth to brighten all you folks up every time I post! Seriously, the whole techno thing...not easy, is it? anyone who can figure this stuff out should automatically qualify for free life membership of MENSA! Colin Firth...mmm....see how kind I am to all you lovely ladies? He is SUCH a dream boat...what I wouldn't give to have him catch me next time I faint! oh ho yes!!!! I'll just go to bed and dream of him now

I see what you all mean, now you come to mention it. I think the forum's really well moderated too, it was just an idea that I thought I'd share I guess our forum is smaller than the other ones I was referring to, so it doesn't really matter about the whole dividing up thingy. And thanks DancingLight for kind words--yup, I'm definitely feeling better with the whole bed tilting malarkey! Hope everyone else is feeling smiley too

Hi everyone! hope you're all fine n dandy! I find this forum really hard to use sometimes, like if there's a thhread that's not been bumped for a while and I have to find it again. From my experience of other forums, I wonder if it might be an idea to break things up a bit more? Perhaps different area headings/ categories would make it easier to follow? For instance, could we have different areas, such as one area for discussion of medication one area for discussion of alternative therapies one area for discussion of meeting up? one area for venting! (which we all need to do sometimes!!!!) Does anyone know how we could do this? As usual I'm th eone with the big mouth but I can't actually offer to do anything myself as I'm a bit inept when it comes to computers! Just wondered what you all thought, so I'm testing the water!

Isn't it weird how most people are from theUS? I suppose the fact POTS is still so rarely recognised here is a big part of it. THe ONLY person in the country offering treatment in Professor Mathias in London. Oh, and some electrophysiologist dude in Glasgow... Stop hiding people! It's ok, I'm vegan, I won't bite!

Thanks! 4 to 10 is a bit moderate--this cardiologist I saw was hardcore and had my bed tilted as high as I could stand it--I was at 45 degrees! I think I'm now about 30 degrees as that's more comfortable. You could give it a go, see if the sharper incline might help? I don't know if 4 to 10 degrees would really do all that much, as it's not going to raise you that much? Just a suggestion. . .

Hi everyone, I was thinking it might be an idea for us to meet in person and talk about treatments that work, health care and alternative therapies etc. I realise that might be difficult for most of the users here, as you live on the other side of the pond, so to speak. So with this in mind, I wonder if I could just ask how many British people use this site, and whether you might be interested in meeting up somewhere? I have no idea when or where yet, but I think the first step is to see if there are enough users to make it worthwhile? I'm in Bristol, which is in the South West of England. I could travel anywhere really. I think somewhere central like London or Birmingham might be best. Are there any Scottish users out there? I'vbe not found any through this site, although I was told in dundee there are 7 POTS sufferers in Scotland. Would be great to find some of you!

Sleeping with your upper half raised isn't enough. The point is, your whole body, and the whole bed needs to be on an incline. Your feet must be lower than your torso. seriously, it's working wonders for me! I've been out for 3 days with no stick no zimmer and no wheelchair! And all I get are some achy bits- I've not fainted once. It is AMAZING. I wholeheartedly recommend that everyone try tilting their WHOLE bed at night, just to see if it improves things. The only thing I'm unsure about is how long this may last for. I don't know if it is a temporary or permanent thing... Any ideas for bed tilting when I go stay with friends at Uni next weekend gratefully received! I'm dreading sleeping on a flat bed now!

I have an electric tilting hospital bed ant home and have been sleeping at a head up incline. I do seem to be fainting less, although my symptoms haven't vanished completely. Anyone else tried this and found it helpful (or harmful)? Opinions?

I sat in the library for an hour today in a hard back upright chair and by the end of the hour my head was very sore, and I was really thirsty. My neck was sore, my shoulders didn't feel right and neither did my back. I felt exhausted. I'm a bit worried about how to get rid of this, or lessen it. I thought maybe it was just cos I've been in hospital for almost a month, but when I think back on it, I've always had achy legs and just malaise after sitting in hard back upright chairs. I always prefer to sit cross legged or slumped in soft chairs. I don't think I'm just being lazy, but who knows? just wondered if this could be part of POTS or NCS? Any one else get like this with chairs?