Midrodrine

[Bamboot]

hi everyone my husband has just started midrodine after taking fludrocortisone for a couple of months. It hasn’t stopped him falling. He has postural hypertension and falls a lot from standing after sitting. The neurologist has now put him on midrodrine as well as keeping the fludrocortisone. He is feeling very dizzy now since being on it and he is on the lowest dose at the moment. My question being is this normal when you first go on this medication. He has fallen every day since being on it.

[Purplegoth]

I thought I had replied to you but can't see my post. Did you have anything come through?

[Bamboot in reply to Purplegoth]

Hi purplegoth ……yes you did reply last time, and Thankyou. But just want to know about being dizzy when first going on it.

[Morganthreewheeler]

Hi

Sorry to hear about your husband, my wife was on 2-3 pills of Midrodrine per day before physio or mobilisation and she never fell as she used a zimmer frame and had me or a carer supporting her

My wife broke her hip when getting out of bed at 5.30 am to go to the loo on her own. She never had another fall but sadly she passed away 8 months later

Best wishes

[Bamboot in reply to Morganthreewheeler]

Hi Thankyou for your message so sorry about your loss, it’s a terrible illness to cope with.

We are finding the meds aren’t really making a lot of difference my husband is still at a high risk of falling. He can’t walk very far even with his walker before his blood pressure drops so I’m always there to try and help with the falling. I have said he must have strong bones as he has had so many falls over the years !

[Purplegoth]

I replied to you this morning but I think it's got lost in the ether !!!!..... Husband has been on the highest dose of Midodrine for some time now along with Fludrocortisone and Octritide. He experienced goosebumps alot of the time when he first had midodrine but no dizziness. This cocktail of drugs still doesn't stop him fainting or falling though. X

[Bamboot in reply to Purplegoth]

Thankyou again for your help, I agree with you the meds don’t seem to help with the fainting or the falls. I have also been taking his blood pressure and it never really goes up to a normal level especially when he’s standing. x

[diyducky]

Hi,

My husband is on Midodrine and Fludrocortisone. He says he always feels dizzy.

I was going to ask the Neurologist about this at Dave’s 6 monthly review but unfortunately the appointment got postponed to next February. He hasn’t seen the Neurologist since June 2022 but I presume we must have a shortage of them here in Northamptonshire.

His worse time of day for BP drop is just before bedtime when we’re try to get from chair to bathroom and then to bed. He goes pale and gets neck pains.

Thank you for your post as it has made me realise that it’s probably the steroids that are causing the dizziness. Who needs doctors when we have this forum. 😁

Lorna

[Bamboot in reply to diyducky]

Hi Lorna Thankyou for your reply, yes at least we know we’re not alone in this. It’s terrible you have to wait so long to see a neurologist, have you seen a Parkinson nurse ?

We have an appointment in July which was cancelled from June. Fingers crossed it goes ahead. My husband has an appointment with the Parkinson nurse in May which we are hoping will be helpful. Weren’t sure if the steroids or midrodrine.

It can vary with the BP dropping worst at different times of the day and he suffers from the “coat hanger pain” as it’s called most of the day he finds spraying with freeze spray helps or the gel.

Best wishes take care

Doreen

[diyducky in reply to Bamboot]

Hello Doreen,

I don’t know what age your husband is but I don’t think it’s right that he is having daily falls. As one of the other contributors mentioned if a fall leads to a serious injury it can be devastating.

My husband is past the stage of being able to walk. He is only able to transfer with help. So he rarely falls now, thankfully.

We do have an annual visit from the Parkinson’s Nurse and they can be helpful at referrals to other services, in your husbands case that might be some input from a specialist falls clinic?

I hope he gets the support he needs. It must be such a worry for you always having to hover around waiting for the inevitable fall. If Dave does end up on the floor I have to get one of my sons to help lift him back up as I can’t do it alone and his mobility is too far gone for him be able to help.

If they get the balance of medication right hopefully you’ll be able to get out and about a bit this summer.

Best wishes

Lorna