veg

That's excellent news - I'm very very very pleased for you.

love, v

That's awesome news about your funding for Oxford - I'm really pleased for you.

Sorry to hear about your grandfather - I would write to the head of the hospital trust to complain. Is it an option to have him moved (though you would probably have to pay for a private ambulance to transport him) to another local hospital?

regards, veg

What I also meant to say when I started, but lost the thought somewhere!!! : I believe Prof Matthias does not believe in using any drugs on the TTT (spray under the tongue or drip in IV) as he thinks it gives a false result. 5 years ago if I had not had the spray under my tongue I would not have passed out and ended up with a pacemaker - which has stopped 90% of my fainting (first TTT showed showed hr dropped/stopped).

veg

Hi,

I don't come to this site very often - I have Vasovagal Syncope, not POTS, but wanted to throw my tuppence (2 cents!! <bg>) in.

I have a friend who has POTS and sees Prof Mathias (privately) she was on lots of meds (she's coming off them all now for other reasons).

I see another consultant at a different hospital. After years of passing out, on and off, and treking up and down to my local hospital I guess I got lucky at one appointment and saw a registrar (doc under consultant?) who had worked with an autonomic specialist and sent me for a TTT (this was 5 years ago). A month later I had a pacemaker. 6 weeks down the line the consultant (first time I'd actually seen him) basically told me I was better and blew me off. 3 months later I started passing out again, my subsequent conversations with the hospital, trying to get an appointment (gp told me to go see the consultant again), was like something out of a Monty Python film.

I've been on florinef, no longer; currently on a beta blocker and midrodine. I changed gp a while ago and recently had to renew my bb prescription. 20 million questions about why I was on it, when I tried to explain about autonomic dysfunction I got a raised eyebrow and a muttered "that's unusual" like he didnt believe me.

Anyway, eventually (sorry this is turning out very long - I'm having a hard time thinking straight tonite and let alone typing) the consultant said "I dont know what to do with you - I'm going to refer you to some-one else). The new guy is very good and put me on midrodene. Unfortunately my gp wont prescribe it so I have to trek up to this other hospital to get prescriptions so I only take it when needed BUT if I run out and need more (only get about a month's worth at a time) I can make an appoint at the pacing clinic, go see them and they will find a doc to prescribe it (I wont' necessarily see the doc). The pacing clinic is also excellent - I can call them at any time and get an almost immediate appointment to come in if I need to.

One other point, that quite depressed me, at my last appoint (different doc, needs to work on his beside manners) I got told quite bluntly that there's nothing else they can do for me - I need to just get on with my life.

I hope this makes sense and helped some.

I have the same problem - my GP flatly refuses to prescribe it (cited monitoring, and cost), so Consultant writes me a prescription (which he's not happy about, cost) which I get filled at the hospital pharmacy. The downside to this is that I then have to trek into central London to the hospital.

First time I ran out I called the Consultant's sec, who spoke to him and then told me to get my GP to write a prescription. Letters (and faxes) flew back and forth, but then I had a hospital appointment and they wrote me a prescription for 3 months. GP still refuses to prescribe.