Happy Easter all 😊 any info on orthostatic hypotension out there please

[Hazel1010]

Morning, it’s a beautiful day here in Bristol and I hope you are all having a good day 😊

Just had a letter from NHS that says I have Orthostatic hypotension with runs of supraventricular tachycardia, I know I walk like a drunken sailor sometimes and my heart beats crazy ……..but any imput out there because I’m not getting a lot of help or advice from anywhere else ps I know you are not doctors but I’d appreciate anything from people with similar, thankyou

[BobD Volunteer]

Try BHF forum as well.

[Bagrat]

Hi Hazel. Suggest you have a word with your GP if you aren't getting much info. I have no personal experience of the condition but back in olden days when I was a nurse, (at least 20 yrs ago!!!) I seem to remember half a pint of water every hour during waking hours if not contraindicated and support stockings could help. There is medication but I'm sure that would have been suggested if appropriate. Was the diagnosis the result of tests by GP or Consultant, that is, have you a further consultant appt in the pipeline?

[Hazel1010 in reply to Bagrat]

Hello and thankyou 😊 I am keeping up a good quantity of water 👍 etc I seem to be being dealt with by several different clinics that don’t liaise with each other and getting conflicting reports and no particular advice so I’m booking with my gp as soon as the holidays are over for a chat to see if I’m on the right medication etc 😊

[Bagrat in reply to Hazel1010]

Sounds like a plan. Also vaguely remember low salt diet is not good unless of course other issues demand it. If only life ( and communication between docs) was straight forward .

[Cat04]

Yes , I have had this. Every time I stood up feel so ill and nearly or actually pass out.So my GP reduced my blood pressure meds. I feel so much better but now have higher BP again. My cardiologist said that was the trade off one against the other. A no win situation.

[Hazel1010 in reply to Cat04]

Hello 😊 weird thing is my blood pressure if anything is slightly high and it seems to come and go , I can be all over the place for three or so days then it disappears for three weeks and starts again out of the blue …..off to the docs again 👍😂😂

[Cat04 in reply to Hazel1010]

Heading to gp too - woke at 2am and heart was racing, bp this morning 159/100 and heart rate 122....... why does it always happen on a bank holiday weekend!

[Hazel1010 in reply to Cat04]

Hello , please don’t take this the wrong way but because we are all different but I found that although we are trying to relax on bank holidays and social occasions some kind of underlying stress hits the heartbeat and raises the bp .I always thought I had no stress but over the past 18 months Christmas, going out with people starts me off …..It’s blooming hard to totally relax and it’s amazing how your body can respond, I hope you are feeling better 👍😊

[Cat04 in reply to Hazel1010]

No offence taken 🙂 and thank you for your good wishes. I haven't been able to identify any trigger in particular. I am feeling a bit wobbly & washed out from it now and a bit apprehensive my ablation has failed after 3½ years 😔

[mhoam]

Hi Hazel1010, I have just been diagnosed as orthostatic intolerant, the key indicator is the drop in BP between sitting and standing BP. My cardiologist suggested the following site:-stopfainting.com/

it is written by the clinical team and Imperial College NHS Trust and has an explanation as to what is happening in your body and practical methods of dealing with it.

Hope this helps you, it certainly helped me

cheers

[Hazel1010 in reply to mhoam]

Brilliant, thank you 😊

[CDreamer]

You want the STARS site but I’ll get some links for you:-

Go to the Arrythmia Alliance site & sign up for the on-line learning. I learned more in one day Patients Day than in a lifetime. They have links to the VERY few EPS who specialize. I had the same & went undiagnosed for about 30 years.

Best advice - essential you keep well hydrated & take at least 6g salt a day. Keep legs up & wear compression socks/tights if you need to. Avoid standing.

heartrhythmalliance.org/sta...

POTS UK are the other org - great info & list of specialists but they seem to have changed their website.

Sorry, but BHF we’re useless Bob - AA much more informative.