end of my tether folks!same old story!

[persephone]

Hi to everyone,

sorry I've not been about for ages.

Last Friday I was rushed to hospital with chest pain which was stopping me from breathing- it was totally different in itds intensity to other POTS pains i've had before.

My GP put me on Oxygen for 90 minutes which helped but dind't make the pain go away, so he sent me back to the cardiologist at the local hospital- the one who Prof Mathias thinks should treat me- but who Prof Mathias has never actually entered into any correspondence with at all.

I've been there for 5 days. My TNI was up from 0.03 to 0.05. The pain shot down my arms and up my throat, was like pressure between my chest and back.

I wasn't put on a monitored bed this time. Had an echo which was ok. Wasn't given any meds except anti vomiting stuff as the pain made me puke.

By the way- any of you ever try cyclizine? It had me high as a KITE! I was off my NUT. I was seeing black angels out side the window!

Anyway, yes, so after 5 days, I've been told:

a) Some people get chest pain, we can't explain it

Why panic about POTS- some people have a sore leg and limp. They don't cry when their leg hurts. Or when they limp. Why don't you cope better with the pots.

And

c) Nothing the cardio can do til Prof Mathias tells him how to treat POTS, as he

s never had another patient with it EVER and doesn't want to do stuff that might harm me.

I don't know whoI'm angrier with

The ideas of some people miff me as well- the old ladies in my ward were lovely- I always get on with old people, but one middle aged woman was in and she was like "so, what's wrong with you then, is it M.E?" ARRRRRRRRRRRRRRRRRRGH!

I just cried when I came out, nad now don't know what to do.

I was meant to be going to St Andrews last saturday to see my mates and celebrate the funding coming through from the British Academy. Fat chance- have lost the flights, $200/?100 as I couldn't get insured...so my mates are all partying and I'm stuck down here out of pocket, out of breath, out of ideas!

Any feedback appreciated

[ariella]

Persephone,

Just want to let you know that I'm really sorry about what happened. Was in a similar situation earlier this month. It's bad enough you are feeling sick enough to be in hospital, but when they don't do anything to help you because they aren't sure what to do for you---that's totally unacceptable in my book. It's not like you're stuck out on a desert island hospital with no phone service. If the attending doctor isn't sure how to proceed, IMO he has a responsibility to consult someone who does. It should not be your job when admitted to also have to find medical care. Were they really out of monitored beds?

You probably also felt humiliated when they equated your POTS with some minor, inconsequncial thing...You deserve better than this.

I hope the food was at least edible...

sending love,

Ariella

[corina]

Hi Persephone,

glad to hear from you but not in this situation. You should have been partying with your mates!!!!

I have the chestpain as well. I'm on beta blockers whcih help against the racing (up to 180-200 when standing). I try to stay calm when I have the chest pain and because I know there's nothing wrong with my heart itself (because of all the testing I had) I succeed. The only thing is, that there's no blood coming from the left chamber to the right chamber, I don't have enough pressure in both chambers, so I lay down and wait until it's over. Usually that works.

I'm very sorry your having these problems. I think you better call Dr Mathias's office and ask (acutally I mean tell) them to contact the doctor that dr Mathias suggested so that you can make an appointment to talk things over. If that takes too long you can gather all the information you can get that is worthfull for your new cardio and make an appointment anyway to talk it over. You need someone to help you out in case of emergency.

Hope you'll feel better soon and that you can party with your friends again!!!

Best wishes Persephone,

Corina

[JaneEyre9]

Persephone,

I'm so sorry to hear about your awful trip to the hospital. It sounds like a nightmare. On top of it you lost out on money and time with your friends. I can totally relate to that feeling. Also, there is nothing scarier than pain in your chest. Just want to say I hope you're able to get some answers to get back on track.

Kristen

[Guest Julia59]

I'm so sorry Persephone,

I remember that Emtpy----out of control feeling I had when the ER discharged me without helping me. I felt my symptoms whirrling out of control and no one would help me. By the time I got help, I was already doing better on my own! Dr. Grubb was only 1 mile away from my home, and a lot of the medical professionals who worked in the same building didn't have a clue what was wrong with me----so therefore they didn't know any better to refer me to Dr. Grubb. Finally some smart woman intern had enough sense to order a tilt table test---and that is how I finally got into see Dr. Grubb----only one week after the TTT.

I'm writing this so you know I can totally understand as I have been it that scarey spot you are in right now. But the good news is that I made it through just fine, and ended up stronger for it. When times get tough----I get MAD---then cry----it does me a world of good to get it out of my system.

Please take heart that we have these spells in cycles, and the worst of it should pass soon. You should have someone there to help you manage those symptoms better-----and those Docs should have a much better understanding of your POTS.

I wish I could come over there to the UK and kick someone square in the you know what----or perhaps a lit fire cracker in the you know what ----that usually get's them moving. Prof Mathias needs to step up to the plate and help you.

I'm saying a little prayer and hoping you get the help you deserve.

Julie :0)

[Rita]

Persephone,

I am so sorry you have had such a hard time. The cardio doc seems really nice; however, I think I would try and locate someone who has some knowledge on pots. I know this is also very hard, you might even want to send this cardio doc the pamphlets that are new on the forum, or maybe print as much info on pots as possible and give to him to teach him about pots. If he is indeed a good doc you will know because he will use this info to educate him. Maybe this would be a better alternative , because I f he is caring you will have yourself a wonderful doc.

Good Luck,

Rita s

[Ernie]

Hi,

I am sorry you had such a bad experience again. I just don't understand why doctors don't know how to dial a phone number!

Hope you feel better soon.

Ernie

[Scooby2]

Hello Persephone,

I'm, also in the UK. I'm so sorry you're having so much trouble - everything here sems so slow and hard fought for doesn't it?

The only thing I could think of which might help would be to ask your Cardiologist (or as a last resort for you) to contact Prof's secretary and ask her to fax a copy of your last correspondence or clinical notes from Prof to the Dr with an outline of a treatment plan for you. At least there's a chance that things may get moving.

I have found that anything we need we have to action ourselves, this is wrong but soemtimes it's the only way. I always work on the assumption that people will NOT do what they say and so chase them up to get things done. Sad but true.

I have only dealt with Prof at St Mary's but have found Rita his secretary to be quite helpful, but I can't remember where you have seen him? Was it at the London Neurological ? Do you have a contaact there via his secretary?

I do hope you can get things sorted out, let us know how you get on.

(By the way I also get chest pain, find laying down and getting as cool as possible help for me. As others have said, I know for me it isn't harmful but is just distressing when it happens).

Take care and best wishes.

[becky]

Hiya pers,

i have already emailed you on this subject but it just makes me so mad that you have been treated like this again, this is not actually a good advertisement for the NHS is it? i can't believe that you have to see more than one doctor to get some treatment, and i don't thik that chest pain is normal not when you are throwing up and you can't breathe. ARRRGGH - wish i was there hun to give you hugs and kick some ***!!

see you soon hopefully!

becks x x x