just call me yoyo girl! bp goes from 162/100

[persephone]

Does this happen to you guys often? I keep wondering if I should go to the GP--stupid me, can't get rid of that "help me Doc, I'm scared" reflex, even though they've told me there's no point in going ot them because they can't help--now I'm being told to go to hospital right away. Although I still find that pointless- there are no autonomic specialists here in the area.

I feel weird, it's all different to how it was before. I know I'm paying my dues for the weekend, but it's not so much that my heart races, it's the HUGENESS of the beat- it comes right up into my throat and even my head. Really odd.

and sometimes the beats are so big in my legs tha tit's like electricity, or tingling, and very disorienting.

Managed to catch a full faint on my BP cuff today- I went down to 76/46 and my pulse was just 110, but I think I must've slowed by the time it was caught. I'm not sure though. But then it's all over the place. I've had lots of diastolics above 100 for quite a while now- which I find odd because if anything I've always had low blood pressure. Should I see my GP about this? But then, if I take stuff to lower it, I'll get faint again won't I? I mean, I'm a vegan, don't smoke or drink (well, this weekend I had champagne and wine, but for **** good reasons, and that was the first time I'd drunk all year!)

Could anxiety cause this? I definitely feel "wired", which is stupid- I have my degree, and nothing really to worry about...except of course, being at home, having no friends nearby, my mum's bad health, our whole family's bad health come to tihnk of it , the future, wondering when I'll be seen by the London specialist, that type of thing

I guess i'm looking for the only reassurance I can get- that someone else out there has been through the same and can tell me I'll be ok

Big love to everyone, wherever they may be in terms of POTSiness.

[MightyMouse]

I suppose anxiety could cause all that. however, I have a bp and hr all over the place. I've been told by my cardiologist not to worry about the really hard beat that happens to me from time to time...he described it as the heart basically resetting itself if the rythmn gets out of whack.

It's worth asking your doctor about it if it's not "normal" for you.

Nina

[MomtoGiuliana]

Persephone

I don't know if my response will be of help at all, but I have had the same thing happen--bp all over the place, when I feel my worst with POTS. I use a low dose beta blocker even so. It keeps the really high bp under control, which I think is good. My doctor says I can use it on an as-needed basis--I don't use it every day anymore--only when I have significant tachycardia and/or my bp is soaring. What has really helped me I think is a low dose SSRI--it seems to even out my autonomic system and reduce the intensity of symptoms. I don't know if you and your doctor have tried either of these medications. They are very commonly prescribed for POTS in the US. It is frustrating that your doctor says he or she says there is nothing more they can do to help when there are a whole slew of possible meds that might help you, for example.

Take care,

Katherine

[Ernie]

Hi,

Could you go to prof Mathias or prof Kenny?

Ernie

[persephone]

Hi,

Could you go to prof Mathias or prof Kenny?

Ernie

<{POST_SNAPBACK}>

Hi Ernie,

You're on the ball!

I saw Prof Mathias in January- he diagnosed me with POTS . I'm on a list to see him again, that's all I know. I don't know when it will b or what it will do. My GP has tried to find out, so has my cardiologist, but no one is really able to tell us anything.

It's reptty frustrating- he has so much knowledge and expertise- I know that he could sort me out!

I can't afford private treatment--it would run into thousands! And I don't have health cover.

As for Prof Kenny, I heard that she specialises in Vasovagals rather than POTS. And the waiting list on the NHS to see her would probably be similarly horrific.

I wish someone could let me know what's going on.