My husbands main problem is fluctuating bp. His bp is lower in morning with symptoms for about 3 hours. He was advised by nurse here to start slowly on madopar at night to see if this helps with eyelids closing involunarily and worsening movement issues but not affect bp too much.
Last night after dinner his BP went down to 118/66 which at 6.1ft led him to sleep deeply from then on. He also didnt make it to bathroom at 5.00am this morning for the first time and his walking on 1 tablet a day very laboured.
Do we stop meds or increase ?
Totally lost and caring has become full time job as have to look everything up.
He signed DNR yesterday at drs and can understand why he did.
Thanks for any advice
Catherine
Hi Cat,
We’re sorry to hear things are especially difficult for your husband and you, currently. As with any change relating to medication, please contact your medical team for instruction. You can also reach out to our helpline, who are all highly knowledgeable in this area and happy to help. As a reminder, the number is 0808 800 0303.
Please accept our sincerest best wishes,
Jason
Forum Moderator
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I was actually going to post to see if other people had problems with their BP dropping very low.
My husband also has issues with massive drops in BP. There have been times when his systolic BP has been as low as 65, which is very low.
He’s had issues with postural hypotension for a number of years, but in the last year his systolic BP has been randomly dropping below 90 more frequently for no obvious reason, which is naturally a worry. He had a change in meds a few months ago but his BP issues started getting worse before this.
Now he often goes an ashen colour when it drops and on a number of occasions his oxygen levels also drop to around 90 at the same time.
I don’t know if it is just his Parkinson’s causing the problem or if something else is going on as well.
Hi,
My Husband has had hypotension for several years but it was only investigated fully when he was in Hospital last year following a fall, they noticed his BP was frequently low resulting in him passing out and becoming ashen, he was prescribed 0.1mg Fludrocortisone am and Midodrine 7.5mg am 5mg lunch and 5mg teatime it improved the situation greatly, it can still be a problem but less frequently, when this happens I get him flat with his legs elevated. He is on Madopar 4x day and Rotigotine Patch which is currently being reduced we have been told both of these can affect BP significantly in some PWP.
Have done a lot of research and think BP fluctuations can be related to Parkinsons.
Been advised by PD nurses on here to drink lots of water and consume something salty so now has marmite on morning toast
Slight improvement but need more help with problem still
Since my last post my husband is in hospital with problems with his BP dropping everytime he stands up. It’s been dropping by as much as 50 each time. Up until a few days ago it was random , not like now all the time. Has anyone else known Parkinson’s to cause this?
Hello Parkywife, my husband was noted to have very low blood pressure by paramedics after he’d had a fall at home three weeks ago. He was in hospital for a few days. They took his BP regularly on the ward. I’ve no way of knowing if it was this that caused the fall, although UTI was ruled out.
He’s always been on the low side with BP long before Parkinson’s was diagnosed 7 years ago. I’m the opposite and have to take meds to control high blood pressure! From what I’ve read low blood pressure does seem common in Parkinson’s. It’s yet another worrying symptom to deal with in this most cruel and complex disease. Hope all goes well going forward. Best wishes. Jean
I think the medication used can affect BP I noticed that my BP went down when I started LD 50 mg 3 times a day?
My husband has had Parkinson’s for well over 30 years now. Although his BP does drop at times it’s not been like this week where it’s been constantly droppimg significantly every time he stands.
Hi parkywife1993,
My Husband has had severe low BP for couple of years but its become more frequent and he faints regularly the last week or so it’s been more often and so I have kept him in bed because soon as I stand him he has started to faint, today I checked his BP while in bed and it was ok so I got him up into his wheelchair into the lounge no sooner had I got him into the chair he passed out, I raised his legs high and as soon as it started to come up I got him back in the wchair and struggled to get him into bed as he was faint again, he is on Fludrocortisone and Midodrine for this which he was put on last year while he was in Hospital, I have noticed a link between the Madopar and his low BP but obviously he can’t not have the Madopar. My OH’s BP can be as low as 60/30 and I’ve been told by the PD Nurses they can go into a total respiratory collapse, it’s a frightening thought. Is your husband on medication for his low BP?
Thank you all for your replies.
The doctors are thinking of starting Midodrine but they want to do more tests to make sure the problem is related to his Parkinson’s.
Over the years he’s had BP drops when standing but they came and went, but at the moment it’s dropping every time he stands, as far as I’m aware the lowest his systolic BP has been is 65, not sure about diastolic.
He had the same problem earlier this year but that was caused by multiple pulmonary embolisms after Covid , which was treated.
Even with all his Parkinson’s issues he is still big and strong but he has severe balance issues amongst many things , he can’t be left for any time as he even falls out of his seat. He changed from Pramipexole to Rotigotine around 7 or 8 months ago. He’s been on Stalevo for at least 12 years.
It’s how rapid it’s become constant which is unusual. Normally symptoms start slowly, I’ve never known in all the years he’s had Parkinson’s (well over 30 years) for a symptom to start happening all the time so quickly.
Hi,
I wonder could it be the Rotigotine, it is one of the side effects if you look at the leaflet that comes with it. My Husband was on it for several years he was taken off it due to hallucinations, it has to be tapered off steadily. Let us know if they find another cause for his BP other than PD.
It seems hubby’s hypotension is related to his heart. He’s been put on Midodrine which has helped reduce how much his BP is dropping.
Hi. New on here. My Mum has long standing PD ~ 15 years. She’s developed hypotension. She has had ~ 20 falls this year, most resulting in a visit or admittance to hospital. Thsnkfully no major damage, just cuts and bruises. When monitored at hospital, her BP drops dramatically from sitting to standing and drops further on standing. GP reluctant to do anything. Her care home is good but cannot monitor her 24 hours a day. Is there anything I can do to get Mum’s BP looked at before she falls and does some real damage?
Hello Gingergirlie, and welcome to our community forum.
We’re sorry to hear about your mum’s recent difficulties. We found some information on managing low blood pressure here: Managing low blood pressure and Parkinson's | Parkinson's UK. We also have a free and confidential helpline staffed with friendly, knowledgable advisors who can help you find medical care in your area, so we would strongly recommend reaching out to them when you can, on 0808 800 0303.
Aside from that, we hope you will find this forum useful, and take some time to have a look at the countless wonderful moments of shared advice from our community members.
With our warmest welcome,
Jason
Forum Moderator
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