persephone

Thanks guys! Bg love to all

I'm sorry everyone- you all saw a pretty negative side to me this time--I'm going to delete my ranty comments from earlier, definitely made worse by total and utter lack of sleep! But thanks for your words of support, everyone. After a massive crying session this morning, I am now back to my old self. Catharsis and all that... love you all! x x

deleted cos I was on an insomnia rant- sorry everyone!

No wonder you're down- I've experienced the same thing- just last week. Sometimes I get cross, sometimes I get so down I don't see the point in living anymore. I dunno what to say, I wish I could do something. We're all here for you. I tihnk it's fair to say that for most of us, POTS is a very up and down kind of condition- while it's terrible to have relapses, sometimes it can be a pleasant surprise if you have a mild or brief remission for a bit. I guess I just live for those times...

Sorry not to be jollier, guys.

Electric wheelchair, definitely. I was told I needed one last week on the NHs, but then the person added words to the effect of "hame you can't have one"--the wait is too long for me to get one in tme for university. Solution: I have to be wheeled about everywhere by someone else as I get too weak to wheel myself on off days.

Well folks, the title says it all. my pulse today has been down to 37, my bp up to 228/163 and I felt rotten- really miserbale all day, just out of sorts.

Hi Gayla, Just today I had a bp of 228/163!!! This is my highest ever- and it was AFTER taking betablockers. I have had chest pain today and a pulse of 37 at one point- but like my mum said, what's the point in going to the hospital- they just do nothing So here I am- at 1.30 am (UK time) unable to sleep cos my chest is hurting so much and I feel so off. I should be somewhere where I can be watched- but if I go, no one does any watching anyhow. Because in the UK, it seems, no body really cares. At all. I don't know if it could just be the autonomics going off on one in both of us- my usual bp is 90/60 ish. I don't smoke, drink or eat any animal products, so I know I can't be hypertensive cos of lifestyle. I guess we're just weirdos! Or POTSy! Or both! Big hugs P x x

Thanks for all the advice folks. Just a little note to update- I got a letter from th eCardio saying yesterday that actually, a pm would be a bad move. At least he tried to find out about it. and acknowledged that my care thus far has been pretty feeble. I can't get any treatment from anyone else--nothing new. Just carrying on with my midodrine and betablockers. Thing is though, in the UK midodrine is taken under a consultant only, not a GP as it's unlicensed. I don't seem to actually HAVE a consultant who would be prepared to prescribe it for me when this lot runs out. (long story) So I don't know WHAT to do. What is it the Queen songs says....? ANOTHER ONE BITES THE DUST!

Oh, Tearose! this is awesome! i've missed you- you were always so kind to me and about me in your posts! I am just over the moon that you're working again and have gotten better. You are the hope we all need! Especially that *I* need I'm so pleased for you- what a wonderful day, the day that you get your life and identity back. I'm sure I speak for many here when I say it's something we dream of achieving. Brilliant news- thankyou SO much for sharing, Tearose! You rock the house! big love P x x

I don't know why I'm getting so worried- I lived away for 5 years for my first degree, but I guess I wasn't so ill then, I could manage. I'm going to be moving in with two people I don't know from Adam- I've never met them before, don't even know if they're male or female and won't til the day term begins. It's going to be hard enough to move away after the year I've had, but to move away to somewhere that isn't particularly close to things or helpful is going to make a difficult time tougher still. Any ideas or advice? A slightly nervous persephone x

I just thought I'd ask while we're on topic and there seem to be a few students floating about... I'm going to be moving in with two people I don't know from Adam- I've never met them before, don't even know if they're male or femalem and won't til the day term begins. Any ideas or advice? A slightly nervous persephone x

Ahhhh! that's so odd! my mum says my eyes (or rather the whites of my eyes) go 'pink' when I have a funny turn. I don't know why, and can't find anyone else who does, but your theory sounds quite logical. Strange but interesting... P x

rooting for you, love! or as we say in the west coast of scotland, hen! (as in chicken!)

Bisoprolol for me, but only with midodrine. otherwise my pulse seems to crsh through the floor for days afterwards. Interesting you mention insomnia= I get really cold and sleepy. but we're all different, and god knows our ANS's are wired differently at the best of times Good luck with it all- there are loads of different ones you can try

I'm sure florinef can do good things for people. I've not taken it myself. But another member of my family did to quite bad effect. Just make sure your Doctor monitors your blood regularly- my grandfather's potassium levels went through the floor with this drug which led to a heart attack.

Hi Ariella-- Sorry you're having a rubbish time. I've heard of myasthenia gravis- is that where you fall down because your muscles aren't strong enough? Perhaps you could clarify for the simpletons like me on the board Sending big hugs your way, and hoping the tests are ok big love P x x

Emily rules

I'm not looking for indepth discussion, just a possible list of treatments that could alleviate my tachy and brady episodes and erratic bp....anyone out there found a treatment that has really helped their POTS to the point where they can go back to living like they did before their POTS got real bad? Thanks in advance guys, you're all awesome P x x

Hey Blackwolf. I just thought I'd offer some support here. I'm 23 and I have a wheelchair, walker and stick. Oh, and a perching stool for the kitchen, a board for the bath when I can't stand and an electric bed which tilts so I can sleep at an angle. Mycardio thinks it might reset my baroreceptors if I lie at a tilt. It works sometimes, but not others. I get all this from the NHS, so luckily don't have to pay for it. I'll never forget the day the Occupational Therapists took me over to the 'assessment centre' it was while I was in the cardiac ward. Talk about depressing- the only other person there was a 93 year old woman who didn't know what day of the week it was. I felt so angry at first- utterly humiliated that I had been reduced to this. I usually trry and manage with my stick, or if I'm really bad, go out on wheels.But in the hospital my walker was really handy. You've GOT TO be positive. This is your key to independence. If you need it, it's great you've got it. And you can have some REAL fun with ignorant people who stare. Some examples might include: In the supermarket, a shop assistant asks if you can sign your name when you pay for something by card. Smile blankly, nod and say "yeah, I can even pull up my pants and tie my shoelaces! amazing, huh?" Another one would be if people stare at your walker, say "I know, i'm sex on legs...would you like an autograph?"

I am the same. I was admitted to hosp last month with a pulse of 37 cos the heat makes my pulse go mental- really high then low, or low then high. I get better once extreme heat passes though- heatwaves are just the worst. It lowers bp too, as people get dehydrated easier. Don't you find extreme cold makes you bad too, though? Or is it just me.

Is the midwest hot?My own view is that extremes of temperature could be to blame for higher incidence of pots- you know they discovered that the further north of the equator you live, the more likely you are to suffer from MS. Weird. Though I defer to the font of all knowledge (also known as Ernie)--it could just be that there are more specialists there. I'm in the Uk, incidentally. Iknow of about 20 sufferers here.

You guys are all AWESOME! You make me feel so much brighter when I get isolated with this- it really helps knowing you're going through this with me. Nine- you are awesome, laydee! And Lois- thanks for the advice. I know what you mean about drugs. I just can't understand why no one will give me any. I sent my cardiologist th elist from potsplace a few weeks ago, and while I was in hospital this week he just said he hadn't the time to look at it right now. Then he said that he would have to double check evreything, because it is, after all, just a list a patient downloaedd and printed off the internet He also said that chances are he won't even manage to WRITE to me before I start at OXford, let alone see me! I think the nice Cardiologist in Dundee is consulting the ep in Glasgow with 6 other POTS patients about the theory that a pm plus betablockers might lessen the wide range of my pulse- i.e- instead of it dipping between 24 and 200+, perhaps it could be more like 60-140 or something? I'd just like to say thanks again to everyone for their honesty and their feedback. I think it's something I'm really going to have to talk about with the cardiologist. It makes me so mad that once I go to Oxford, I will probably have to be moitored by the Scottish Dr as he is the only one who is prepared to DO stuff--he's 500 miles away from Oxford! And in another country! Yet the people on my own door step just can't find the time to help. Just goes to show- the difference between England and Scotland is ALWAYS evident. (Not that I'm at all biased, being a devout Scot myself!)

Wow- 10mg 4 times a day? that's pretty hefty! the max my cardiologist would prescribe was up to 15 mg for the WHOLE day!

If you feel your heart beating slowly when you stand and you get lightheaded this could potentially sound more like Vasovagal or Neurocardiogenic Syncope- tht means your heart beat and blood pressure drop when you stand, rather than the rapid pulse (tachycardia) you might expect with POTS. Has your Dr ever measured your pulse lying, sitting and standing? If not, get them to do this- it may offer some more insight into what's going on when you change posture. I usually get a rapid pulse on standing but it can go through phases of being REALLy slow when I stand and then, like you, I feel the slow strong beats in my head and my chest. Good luck for getting it sorted! P x x