persephone

hurrah! I planned for us all to meet. Felicity is from Dunblane and Hayley is from somewhere near London. But other than that, I don't know who else is out there. Great to hear from you though, Mary Jo! I'm not far from you either- I'm in Bristol. Hopefully hear from some others soon

Thought it was time for a revival since we seem to have had a new influx of Brits lately...come on, don't be shy...make yourselves known!

Thanks Corina- you guys have all been so supportive. It means a lot!

just an update- he is MILES better now- sitting up, has colour- more colour than he's had since he was put on that stupid drug weeks and weeks ago.What a relief- he's still in CCU but I keep praying and I *Think* he just might pull through... Our GP this morning says on his dicharge letter from hospital a month ago they wanted a 'follow up outpaitnets' appt inSIX, yes SIX weeks time! Is six weeks without potassium long enough to do damage in a vulnerable person? Perhaps some of you could let me know. Thanks for your support guys.

Hey, if it's any consolation, I broke my foot- snapped two metatarsals in my left foot- just getting out of bed one morning. that's the thing with POTS- it takes away all of your control. I hope you feel better soon. The one thing about toes is, once they're broken, there's nothing a medic can do- they just have to heal on their own. Maybe go back to bed, taking it VERY easy, making sure you're not on your own much over the next few days. Hugs and stuff, P x x

Hi all. His resp rate is all over the place- up to 50 at times, according to the monitor. when I asked the nurse what they were doing about it, I was told "don't worry, those machines aren't accurate"- well why the **** used them then? his pulse is running at about 100. I don't know what's going to happen. Thre nurses say the 'infection' around his lungs and heart will ease off in a couple ofd days- how the **** do they know? He is SO tired he can hardly keep his eyes open. I don't know why all this has happened to me, to our family. Haven't we suffered enough?

Thanks Julia. We just can't believ so much could happen to one family in one year- what with the stroke he had last year, then my POTS and NCS and EDS. And mum's arthritis, Dad's arm and my uncle's MS! I just worry in case people don't believe me- I would be sceptical of someone telling me such a catalogue- I'm sure people must suspect me of exaggeration. but I swear it's all true. If only it WAS exaggeration! I don't know what to do about my graduation. Or about these inept doctors. Or to help my poor Papa I think you and I are going to break down together, Julia!

Thanks Julia. We just can't believ so much could happen to one family in one year- what with the stroke he had last year, then my POTS and NCS and EDS. And mum's arthritis, Dad's arm and my uncle's MS! I just worry in case people don't believe me- I would be sceptical of someone telling me such a catalogue- I'm sure people must suspect me of exaggeration. but I swear it's all true. If only it WAS exaggeration! I don't know what to do about my graduation. Or about these inept doctors. Or to help my poor Papa I think you and I are going to break down together, Julia!

Ok- now they tell me my grandfather's had a heart attack. I go in today and his sat levels are 90. His resp rate is 25-32 and he's finding it hard to stay with us. His pulse is doing 105-120. I am SO angry. He only got a potassium drip TODAY! They had him taking the odd tablet yesterday. What is WITH these people? I'm so worried about him! and my graduation is a week from Tuesday- the timing just could not be any worse (My graduation is in St Andrews- over 500 miles away!) What shall I do. I don't know what to do. I am angry with everyone. I want to sue. I want to help my mother. How could a vulnerable senior citizen be neglected and left to cope on his own with a drug known to cause potassium level defects.

Salt! And lots of water to increase blood volume. I know how you feel- I point blank refuse to go to the ER now because it's NEVER productive. I usually do what you do and drop my cardiologist a line explaining what's happening. Keep calm, make sure if it's possible someone stays around you? I know how frightening it is. Perhaps try and move little and often - I'm a firkm believe from my own experience that if you don't move, then it will get worse- your heart rate will end up going higher and higher and it's a vicious cycle. Keep us posted, dizzygirl, thinking of you! P x x

Poohbear, THANKYOU! this is brilliant. Just a quick question though- please could you post the URL of where you got this from? and to those who don't know, a punter is, in modern day english--a bit of a derogatory term used to describe people who gamble, drink or smoke to excess and generally are sort of no good. It's used to describe people in pubs a lot, and football hooligans. It's not a pleasant term. It implies people who you have to offer service to but don't want to- e.g a barmaid might say she hates having her cleavage stared at by punters, but that they are there for her to serve drinks to. My grandfather is the most austere fellow you could ever meet!

Ok, that *IS* interesting. I've always felt there was a connection between POTS and my hayfever/allergies. On days when I sneeze more, I faint more! I've just had to take my first midodrine in AGES because I've had 3 tips today (i call faints tisp= I tip over, like a jug of water and everything spills out everywhere!) I was fine until Monday. Which was-guess what- when I ran out of antihistamine! Then I began to get erratic pulse- had 40 and 160 in one day yesterday, and my blood pressure? Well....anything from 203/152 (a personal record!) and 76/41. I wonder what will happen now I have my antihistamine back. I'll take one tomorrow and see how I get on...I'll let you know, as this could be really relevant. When I told a neurologist in London about this connection, between allergies and POTS he replied that I was looking for patterns and finding them where there weren't any. Glad I'm not the only one who's found this. And congrats on taking the initiative and getting ball rolling with your Doc and the research!

**** florined! See my post about my grandfather, kitsakatsa!If I were you, I would get to a Doctor straight away. If anyone says anything anal to you, reply that you will make a formal complaint about their harrassment! should shut em up! And Ernie- you are WICKED!

Hi Catherine! I've been diagnosed by Prof Mathias (who I affectionately call the Messiah!) and Prof Grahame. They are really understanding. I too have EDS (III) and POTS. What's your MSc in? Which Uni? Are you from London? I'm 23 and I'm from Bristol. I've just finished an MA at St Andrews and am going to Oxfor din October to do an MSt. You're lucky that you had Doctors who knew what pots was. I had to fight my way to a diagnosis by using POTSPLACE myself, showing the literature from it to my GP and getting a private referral. I knew months before anyone else did that POTS was what made me faint every day in life, not any thing else! I'm currently in the process of filing a complaint against a hospital where a neurologist tried to say I was suffering from a panic disorder. If you ever met me, you'd laugh at anyone who said I 'panic' about anything! I'm the archetypal loud one who laughs, makes everyone else laughs and is the life and soul of the party! Glad you found us. how did you cope with POTS before you found POTSPLACE? without these guys, I'd be up a certain excrement filled creek withou a paddle! No one else really knows what it's like to suffer from POTS. I feel really welcome here and everyone is always so kind- they sympathise when I'm having a crap time, and celebrate the highs too...like when I got my degree a month ago So...welcome! I'm glad more British people are coming out of the woodwork. I only knew of one other person when I first logged on. There are lots more now...there's me, Jame (guvna2004), Emmasuffolk, Felicity (from Dunblane), andI tihnk one or two others. Another good resource for meeting British pots people seems to be www.hypermobility.org That's the EDS/JHS site. It has chat rooms and message boards. I've found quite a few other people there, too. So were you in London really recently in the National? Or did you se eProf at St Mary's? I was in the National 3 weeks ago for autonomic testing. I still don't have the results yet. They know I have pots, it would just seem that they haven't a clue why! though the EDS may go some way to explaining! Thanks for joining us- I'm all excited now tha tI've met another UK faintly ridiculous person! Keep in touch, hope to see you posting here often! P x x Edit: I forgot to add- I've been where you are now. I was in a wheelchair 3 months ago and thought I would be that ill for hte rest of my life. It comes and goes though, waxes and wanes. The trick, I find (speaking only from my own experience) is to keep moving about. Even if I can only manage a potter in the back garden. The longer you avoid standing/mobilising, the worse your pots will become. There are loads of treatments out there for you to try...I've tried betablockers and midodrine so far which work but only if I take them sproadically, as and when required, rather than all the time. Think of POTS as being like migraine- it would be impossible (I think) to suffer a pounding igraine evrey escond of every hour. It comes and goes, and can be controlled. That's how I view my situation. My POTS definitely gets worse with my period. I just need to try and adjust things accordingly- i.e- on the first day of my period, don't try and run up a flight of stairs. This would be suicide! Hope this helps.... Message or mail me if there's anything else you want to ask about...

Thanks for the kind words, everyone! It took another 6 hours for him to get potassium after the doctor said he needed it. Honestly, the British health care system is DISGUSTING sometimes. One of the nurses had a saline drip and chucked it on his bed. Then she turned and said to my mother "I know I should putthis up, but i've got another punter to see." Then she rolled her eyes. My grandfather was a senior civil servant for over forty years. He's worked hard all his life, has NEVER smoked, gambled or drunk alcohol. He is NOT a PUNTER! My mother is outraged. I've typed up a comlaint and been in touch with the Patient Liaison Dept. I told them I wanted a full investigation into the appalling treatment my grandfather was given. So I guess we'll need to wait and see what happens. Thanks again for your support, guys. I was VERY interested to read about potassium supplements being given, and regular monitoring of Potassium levels. Is this the norm in the states? Who should I complain against for negligence? The hospital Dr who put him on it, or the GP who never monitored potassium levels? Or just EVERYONE cos their uselssness always seems like a such a TEAM effort? I love my Papa, I don't think I could cope if anything happened to him. Please pray for him.

Hey all, my gradnfather has a dysautonomia caused by his diabetes. His bp crashed when he stands so he was put on florinef about 6 weeks ago. And epilim- which is **** pointless as he's not epileptic. But anyway. Today he was really pale and my mum rang the doctor because he just didn't seem right. They took blood and we got a call at 8.30 PM from a doctor in the blood lab saying they needed to come and get him now- when my mum got to my grandad's flat, there were 3 doctors waiting. His potassium level is down to 2! Isn't it meant to be like 140+? They said that if she hadn't taken him to the Doctor today he'd have died! They're saying it is caused by the florinef. How scary is that. OH MY GOD. I can't believe a drug could be so dangerous, or that no one would monitor him more closely to watch out for these things happening! Do Doctors just think that older folks don't matter? He's my gradnfather and I love him to bits. He matters to his family!

1) You learn how to think laterally and improvise! 2) You really appreciate any achievements 3) You stop taking things for granted 4) you can understand chronic illness more 5) I don't know about you guys, but since I was able to point my own Doctors towards the diagnosis and be proved right, I feel a bit more confident about knowing my body. Not that I ever WAS afraid to answer people back, mind It's just that now I'm even more determined to speak up. I have proof that my view does matter and IS right!

I feel so bad for you Ernie, what a terrible loss you have to deal with. I wish that I could take away the pain for you. All I can tell you is that whether or not you go- and only you can make that decision- SORROW IS NOT FOREVER; LOVE IS. If you can't go, it doesn't mean you care any less about your sister. I once couldn't go to the funeral of a really lovely feisty old lady I knew who died suddenly. When I knew I couldn't go to her service, I made arrangements to do my own thing, as I was in St Andrews. I got a single red rose (the lady's name was Rose, too) and I sat on the pier at St Andrews and talked to her, telling her how much I loved her. Then I dropped the rose into the sea and hoped that she knew how much I loved her. My mum still thinks that this was probably nicer and more personal than the service that was held for Rose. I guess what I'm trying to say is that you don't have to be there to show how much you love your sister. But of course, I can understand why you want to. I am thinking of you Ernie, and I am so sorry. If ever you want to chat, drop me a PM.

WOO! another person from the UK! It's great to meet other British people, as we seem quite few and far between. Greetings, welcome and hello! Good to hear from you, and glad you decided to introduce yourself! I'm Persephone and I'm 23. I graduate in two weeks from St Andrews, and I'm going to Oxford for a postgrad in October . I live in Bristol. I've had POTS quite badly for about 8 months now, but it looks as if I've been having symptoms from the age of about 11 or 12 I also have Vasovagal Syncope and Ehlers Danlos (III), a connective tissue disorder that means my joints are slack and I get quite achy. On a bad day my pulse does 180+ or 30!, and my bp can do either 200/150, or 70/40! As you can see, I'm a lady of extremes! I am quite stable now though- avoiding stimulants, following a vegan wheat free diet and making sure I walk each day and use the gym whenever possible is making a huge difference. I ended up in a wheelchair I was so ill 3 months ago. But now I'm heaps better! I'm still unable to work, but I'm determined to take up my place at Oxford in October. I'll go if it's the last thing I EVER do! Did you get diagnosed by Prof Mathias in London? H3e's the only UK expert on POTS. It took me ELEVEN years to get diagnosed as I was always told "some people just faint, and you're one of them." At least I have some answers now though- what a relief! What's your story? Hope to see you posting often here. Glad you have found us, and hope we can help you the way this group has helped, and continues to help me. I'd be completely despairing if it weren't for the POTSPLACE folks

It's funny you mention being sick/ fluy, as I was talking to my GP about this just the other day. I told him that I always dive straight into a POTS hole if I get any infections or viruses. I'm sure the immune system goes wonky in dysautonomia. But another thing I'm starting to realise too, is that if I take time out because a virus has knocked me flat- i.e I have to lie in bed for a bit longer than normal--then that can send me POTT(s)Y! It's the worst thing that can happen. Every time I get a MAJOR virus (I'm thinking last October and this February) my poor system goes MENTAL. And I invariably end up in hospital. so next time I get the flu, I will be prepared for a crappy ride. It would be useful if I could know what the best thing to do would be- to lie in bed so the flu passes and then get POTSy? Or to keep going and faint anyway cos of feeling so crappy generally? I don't think there is a right answer. So I share your frustration! Hope you start to feel better soon

I have had terrible squeezing and pressing aches in my legs on and off for years. I got told for a long time that it was growing pains (Still? At almost 24? I stopped growing at 11!). But I found out last month from a rheumatologist that it's joint and muscol-skeletal pain caused by Ehlers Danlos Syndrome. Have you been tested for this? I'ts a connective tissue disorder. Check out: http://www.hypermobility.org Other than that, I guess the lack of circulation can cause pain' my legs hurt more when they or I am cold!

I hate it when that happens! I've sort of experienced similar myself at times- so I can empathise. You must be so disappointed. It's just not good enough, especially as you came from far away Have a hug. wish there was more I could do...

Glad to have been of some help, Corina! When you're done learning where every state is, maybe you could teach me? Here is the extent of my feeble understaind of US geography: alaska is in the north texas the south california the west new york and washington the east. THAT IS IT! And now I'm going to hide my face in shame so you can't all laugh at me!!!!!

Hi Lisa, Sorry i've not been able to follow the saga of what's been going on--what was it you had the ablation for? One of my cardios has observed that I have a sinus node arrest with escape rhythms before returning to normal sinus rhythm. Is ablation done for this type o thing? My cardio told me it would be useless to ablate cos my bp would crash and I would simply be left with profound hypotension. What are YOUR thoughts, as someone who's just had ablation? I was so sad to read that your pulse is still way up even after the ablation- do you fell ANY different AT ALL? Do uyou feel there wsa any benefit to it?

Julia, i'm so proud of you for standing up for yourself and not giving in to these cretins. Can you email me what you wrote? I'm about to file a complaint here in th edUK; it would be useful to have something to compare with. Hugs to you, as ever.