Variable BP and breathlessness

[MCMLXIII]

My blood pressure seems very variable.

I use a hospital issued BP monitor and yesterday 3 readings taken at 5 minute intervals varied from 160/104 to a near perfect 121/88.

I take doxasosin , amlodopine and a potassium supplement.

I have noticed increased breathlessness recently as well.

Has anyone else experienced something similar and are the 2 related ?

[TheHud]

Hi

I noticed you had no reply to your request. I have just joined because I too have unusual BP. I wonder how many others do too but don't realise that when they get diagnosed, sat down in the doctors. Especially those who get diagnosed when young.

I still don't have a diagnosis and for many years it was all put down to white coat syndrome, because sat down, in the surgery, it was 145/85 but at home it was 110/70. I now still get 115/75 at home, but sometimes it will be 90/60 a minute later, but as soon as I stand up it starts to rise, and it carries on going up. Only moving around keeps it semi normal and thats not possible all the time. I have barely been able to sleep or relax for 10 years thinking I was going mad. No longer possible now I need to rest lol

Tilt table test last week had me over 270/140 sustained when at upright. Ambulatory monitoring shows me normotensive on average when moving but labile readings 190/115 down to 90/60 with nocturnal drops 82/58. But given my cardiologist seems only interested in average readings, not highs and lows, we seem to have hit an impasse.

I wish you much luck and hope someone else responds, I had hoped to find others on here with variable/labile BP and confusing results, people under investigation. Looks like its just the two of us

[MCMLXIII in reply to TheHud]

Thanks for your response ! It sounds very similar to my own situation. I am being investigated at the moment at

Addenbrookes hospital for a condition called primary hyperaldosteronism ( or connes synddome). It’s when your adrenal glands don’t regulate blood pressure as they should and low potassium and high sodium in my blood tests indicated this as a possible cause. With me it seems to be intermittent though and not constant. It may end up with me having surgery to take away the adrenal glands which should hopefully resolve the issue but that will only be a possibile if the various tests indicate that it is indeed the cause of the high blood pressure. Will just have to wait and see 😄

[TheHud in reply to MCMLXIII]

Thanks for getting back

At least someone is looking and you are in a good place.

I did think about that but my potassium seems constant and sodium only a little on the high of normal side. But like you, things are so variable. The only constant is staying still and upright, it rises and stays there. Have you had an MRA or anything to look for tortuous arteries that may have affected the baroreflex receptors in your carotids or aorta?

[MCMLXIII in reply to TheHud]

No - nothing like that but I have just had an echocardiogram a couple of days ago and am waiting to see if that shows up anything. Got really breathless back in November so I was admitted to hospital with a suspected primary embolism but the CT scan didn’t show up anything thankfully ! The echocardiogram is a follow up on that. I am lucky as you say that everything is being checked out. The NHS has not let me down yet 😄👍

[TheHud in reply to MCMLXIII]

I had an Echo over 2 weeks ago, tilt week last Wed, pretty bad result on up tilt, as you know, but I am not at a great hospital like you. My cardiologist was not interested in any background info regarding risks, history, family etc and made it clear in the letter to my GP after first consultation he thought me normotensive and the tests were just to shut me up and prove there was nothing wrong. However, I am seeing my GP this afternoon because given the tilt results he should have done something according to the NHS guidelines. It will be an interesting if nothing else. Now I just have to remain chilled, in control and smiling

I think they confuse white coat syndrome types. There are the ones who worry about being ill and those who are just fed up and downright angry (me) because they have been treated like the first. Even though they have all the evidence to put a diagnosis together and a treatment plan, if they would just listen and communicate with the other ologies.

The only 2 ologies I have met so far that actually do the right thing are my haematologist, who ended up having a phone battle with the rheumatologist who fancied he knew more than her, again, and the Ophthamologists who are very kind and looking after my dodgy eyes (uveitis).

I contacted POTs UK regarding Hyperadregenic POTs and there is a specialist at Manchester. Although I am thinking there may be a cross over with my problem, given the tortuous carotids. But first its convincing the Gods of ology, that its not the power of my amazing mind that makes my BP shoot up over 270/140, heart rate above 140 when I stand up, consistent, for as long as I don't move

Movement makes it bounce around but keeps it between 170/115 and 145/85. pulse 80/90.

PS my blood test cortisol during a high stress tachy etc was within normal limits, upper end, but not enough for adrenal gland investigation apparently. Although reading into it that is tosh because it fluctuates and depends on the time of day and how much you are using. But it did say it was not mental stress I was under which ruled out only white coat, which was then ignored by this latest ologist lol

[Rosiez1]

Hi there. Just recently I have had problems with my blood pressure not being stable or controlled despite having been on them for some time. Like you, the readings are up and down. I have had quite a number of changes of meds for either they just weren't doing the job or I had some issue with one or two of them. Just when I think I have it under control, away it goes again, up and down. I recently had a 24 hour ambulatory BP monitor and saw a renal doctor at the clinic. He says he saw issues with the result and changed my medication, adding Hygroton 25mgs. I believe this drug caused my bladder to go into rentention, so stopped it. Strange, its a diuretic. I also have had increased breathlessness, even when I was quite fit. Have told the doctors but pretty sure they aren't listening.