midodrine : Hi everyone my husband has... - Multiple System A...

Multiple System Atrophy Trust

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midodrine

Bamboot profile image
11 Replies

Hi everyone my husband has hypertension one of the symptoms of MSA and been taking fludrocortisone. It hasn’t helped so the doctor wants to change it and try Midodrine has anyone had any experience with this drug.

like all medication it has its side effects if it’s not going to make his blood pressure come up a bit what’s the point!

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Bamboot profile image
Bamboot
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11 Replies
Ruffner profile image
Ruffner

Hello Bamboot, Does your husband suffer from low blood pressure (hypotension)? It might be worth trying a different drug as people react differently. My husband took Midodrine for a period of time but because he also suffers from supine hypertension and tends to spend a lot of time in bed now, he had to go off those type of drugs completely. We now use position change to help him with his severe fluctuations. I take his BP several times a day and if it is very low he lays down and if it is high he sits up. For sleep, he has a hospital bed and we adjust it to a height that keeps his BP somewhat stable at about 140/90. Lots of other factors come into play but in general that is how we manage it. Good luck, it's a struggle.

Bamboot profile image
Bamboot in reply to Ruffner

Hi there Thankyou for your reply, yes he has postural hypotension has had it for years. The neurologist over the years thought it was his carotid artery and so he had a few stents done which didn’t work then he had his carotid artery opened up and stented but again didn’t work. Eventually in 2022 the neurologist decided to do a Datscan which showed up Parkinson markers, then this year they think it maybe MSA ! Well we will try Midodrine as fludrocortisone hasn’t worked and he had tried it 10 years ago. Just hope it helps him for simple things like getting to the table to eat and toilet without the risk of falling. Best wishes

Purplegoth profile image
Purplegoth

Hi Bamboot,

My husband has been on Midodrine for some years and is now on the highest dose along with other medication as well. He suffers with Pure Autonomic Failure of which one of the many symptoms is extremely low blood pressure. He also has supine hypertension but that isn't caused by the Midodrine.

Bamboot profile image
Bamboot in reply to Purplegoth

Hi Purplegoth Thankyou for your reply he has had postural hypertension for at least 10 years had several stents and carotid artery opened up but nothing worked. So hoping Midodrine helps such a worry when they are at a risk of falling as soon as he gets up ! Take care

Purplegoth profile image
Purplegoth in reply to Bamboot

My husbands symptoms started around 10 years ago. He become dizzy when standing from a crouching position. It was first noticeable when he was doing his 1st wife's shoe laces up as she had had 2 catastrophic strokes. And it has developed from there. Sadly she passed away from cancer. When I met him he struggled a little but I guess we shrugged it off. Now he is much worse, the Midodrine amongst others keeps him upright sometimes!! He has had several fainting and falling episodes. He had an extremely bad fall where his blood pressure crashed and he fell, hit his head and still can not remember what happened for about eight hours.

leroybrown profile image
leroybrown

My wife used Midodrine for low blood pressure, and very quickly went up to max dosage. It worked very well for her. No more passing out after eating, and sit to stand was much less problematic during the day. Supine (high) blood pressure was certainly a side effect, but neurologist was less concerned about this.

Bamboot profile image
Bamboot in reply to leroybrown

Hi letoybrown Thankyou for your reply hoping Midodrine will help, such a worry when ever he gets up he is likely to fall, has ended up in hospital several times with various cuts and damage to his self. Fingers crossed. Take care

5456partner profile image
5456partner

Hi Bamboot,My husband has MSA and suffers greatly from postural hypotension. He has had lots of fainting episodes and falls, but thankfully has never hurt himself too badly - I think he's made of rubber! Also I've caught him and steadied him on many occasions. He was diagnosed with MSA in Dec 2022 and immediately put on 3 x 0.1mg hydrocortisone tablets first thing in the morning and 5mg midodrine 3 x daily. This has helped him enormously and he's had much fewer and less severe fainting episodes. He still falls sometimes but I think that's more due to lack of balance and tiredness. We're currently in the middle of adjustment of amount of midodrine as it was increased to 7.5 mg 3 x daily, but his BP went too high then . His specialist is monitoring it at the moment and trying out different combinations of dosages. Hopefully we'll get somewhere with it all soon, but it's not an exact science. I do hope your husband finds some medication that works for him soon, all the best.

calebsmum profile image
calebsmum

Hello, he will actually have hypotension which is low blood pressure. My husband has been on Midodrine for about a year and hasn’t had any side effects. It keeps his BP up and stops him having blackouts, although we had to increase the dose when he started having them again.

TK-67 profile image
TK-67

My mum struggled with midodrine. She couldn't control her BP at all, so if she was taking it and her 'normal' BP was high, it could then go very high. As her disease progressed this got worse so her nursing home did have to regularly check her BP and then decide if she should have the midodrine. It was quite the balancing act.

Hi

My wife also was prescribed Midrodrine after being on 2 different medications

It worked well with no side effects, she took it 30 minutes prior to physiotherapy or any other occasion when she would be upright for a while. She took a maximum of 2 pills a day and NEVER after 3-4pm when she was in bed or about to go to bed.

It is designed to counter drops in BP which happens when she stood upright and was in danger of a fall

I hope this helps

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