Blood pressure

[sunset709]

Hello

I have been told after tests that I probably have MND and I am awaiting further tests.

I have also had three falls since August 20 which the hospital diagnosed as due to postural hypotension. So my GP
has been very reluctant to change my medications to reduce my normally high blood pressure. Every month I am told
to take sitting and standing readings for a few days and send them to the surgery. Each time they say wait a month and
repeat.

This week I am taking the readings and both my sitting and standing blood pressures are very high. I wrote to the Neurologist ta few weeks ago with my last readings and he replied that m y neurological condition would not affect my blood pressure me .This morning my sitting bp was 174/111 and standing 186/119 ??

Has anyone else been in this position with regard to high blood pressure.

I am not sure what to do and who to seek advice from

Thanks for reading

Steve

[LindaB]

Hi sunset709 just from my experience when my BP was consistently on the high side I was referred to Cardiology...could your GP refer you if not done so already?
Good luck
I hope your tests for MND find it's not🙏

[Lynne K]

I had high blood pressure and dodgy heart temporarily when I went for my first MND Smart assessment. But I hadn’t worn inappropriate clothes which were a mammoth task to get off so wore me out. I then had a series of tests which my GP organised and they all came back in a normal range, I learned from this to not overdo anything. I hope the your GP or Neurologist can give you some effective treatment x

[Ellie]

I have been told after tests that I probably have MND

Steve, in an earlier post you said you were diagnosed with "Probable MND" - I just want to explain that the term is a diagnosis in itself and it does *not* mean that you "probably" have an MND. The two words are very similar, so all too easy to get mixed up but if you were told you have a "Probable MND", you should know what the term means.

Love Ellie.

[Ellie]

I have also had three falls since August 20 which the hospital diagnosed as due to postural hypotension. So my GP
has been very reluctant to change my medications to reduce my normally high blood pressure.

Did the hospital tests replicate postural hypotension events Steve?

It's just that loss of balance and unexplained falls are part of MND so, if whoever saw you in the hospital was unaware of that fact, postural hypotension may have been mistakenly blamed as the cause of your falls.

Notwithstanding the falls, as you say, your BP is very high, so I wouldve have thought that your GP would want to lower it.

Raised BP and heart rate can be associated with ALS, though not necessarily at high rates, due to decreased blood oxygen levels and nerve damage.

Love Ellie.

[sunset709]

Thanks for your comments

I had the egm tests 1st August. The doctor said it looked like mnd but would need to be confirmed by another test in three months time

[sunset709]

I guess I will wait till Monday and telephone GPS. Very little optimism only telephone call appointments a different GP each time and over the last 12 months just want to avoid advice and decisions and refer me to the hospital

[sunset709]

To be honest I am scared and confused . The only support my brilliant but stressed wife. So all the stress probably not helping my bp

[LindaB]

sunset709 stress is indeed damaging....for both of you in this difficult time. Sounds like for now youre best to get back into your GP Monday about your stress and high BP...maybe also e-mail the neurologist advising of your concerns?
It's a most difficult time & not knowing is scary....but once services kick in the support is immense. (IMO).
Hang in there...🙏👍

[Mary C]

sunset709
I had medication for high blood pressure for years.In June I was in hospital 11 days and the consultant took me off BP medication as my BP was low.
It did concern me as GP said as time of prescribing tablets for high BP I would need to be on them for life .
Palliative nurse said to stay off the medication .
Hope you get yours sorted.
Best wishes
Mary

[sunset709]

Thanks for comments and kind words

[Olivia H]

I have blood pressure of those high readings when I go near a hospital, especially the Neuro dept. I am on low dose meds for it - when I take readings at home/my own GP it is within normal range, started after I was diagnosed with mnd, but is no link as far as I have been advised, and hypertension with no obvious cause is generally more common middle age. Sadly with mnd you cannot exercise to the same degree to help try to lower it. Hope you get sorted.

[LindaB]

Olivia H my BP also through the roof in hospital settings....white coat syndrome😬😏

[matthew55]

I have been in hospital more times than I care to think about. But what it taught me is that obs are flexible. You get your obs at all times of the day and if something isn't right they try everything to get it right. Even if that doesn't work
no one gets worked up. If you're unlucky enough to get MND there's far worse things than high blood pressure to look forward to. 😀🤗😘😍xx

[Ellie]

High BP can cause strokes.