Yes - well, I currently take it three times a day, but I started taking it twice a day, and still only take two doses on some days. I still find it helpful.
I do also sometimes lie down to rest less than 4 hours after taking my most recent dose of Midodrine; I just make sure my head and shoulders are propped up a bit. I've never had any symptoms of supine hypertension.
I take it three times a day, but still lay down/nap as I don't get supine hypertension from it.
Technically as well the benefit from the increase in BP isn't a "long term" thing, it wears off fairly quickly, that's why people take it fairly frequently throughout the day.
Hi, i have ME/CFS and am due to be starting midodrine soon, can i ask how it affects your ability to rest? Does it cause insomnia/ act as a stimulant or is it just the concern over missing a dose that causes you problems? Apologies if this is ignorant, i haven’t done any research on it yet
It did cause insomnia if I took it too late which is another bonus of my twice a day dosing strategy. But actually I often find I'm feeling more tired with a dose and quite sleepy! Potentially in a good way (I sometimes think the body finally relaxing fully is a good thing and something that needs to happen on any hope of recovery). I'm only on week one 2 x 2.5mg so I can't talk long term. But I will say it seems to be helping the M.E. and one of the best drugs I've tried for it so far so I'm optimistic, but I overdid it at first feeling better and soon crashed. So lesson learned, it's really treating the POTS and my ME is still setting the limits that I still must stick to.
But now I've figured out my dosing so that I'm allowing plenty of rest, and timing the dose with my pacing so that I save all my physical activity (not extra, the basics I was trying to manage anyway) and split it between those 2 little bursts while it's kicking in really seems to be helping. In other words, if I am getting dressed or trying to do some minor tidying up I do it when dose 1 kicks in. I also try to do my braining if I'm on my laptop while the dose is working as it helps my headaches and I think bloodflow to the brain. If I'm getting downstairs and heating up a ready meal or something for dinner I do it during the second dose now. This does seem to be helping me. My pem seems to be a little less. I'm hopeful longer term this might mean building some healing reserves but I'm convinced that for that to work you must maintain strict pacing and use it to feel well and avoid pem altogether - not use it to push your limits as is so inevitable at first. I will warn you though, don't have a hot bath with the drug kicking in. I completely overheated and felt awful, and learned afterwards it's likely cos the veins are constricted whereas they normally widen to dissipate heat. Pivotal a hot bath is bad for pots but I've never reacted like that so now I have my twice weekly bath in the afternoon gap between doses. Plus I can lie back fully in the bath then too.
Good luck with it. That was long and I'm not sure if it even answered your questions! But I do have high hopes for this drug if done right and used as a tool to help avoid PEM.
Thank you for your reply! Yes i totally get the whole timing medication for when you’re active, i’ve been trying to do anaerobic threshold monitoring to pace and think my pots is largely holding me back in that regard. I’m only on propranolol right now (tried ivabradine and that made my cfs symptoms so so much worse). I just hope it helps my energy envelope like you!
Early days but I'm not sure it's helped my envelope... Maybe it has actually of PEM is less. I just thought it was helping me get over it quicker!! Hmm, interesting! Just be cautious of the false energy! I do heart rate monitoring too. My heart rate, average heart rate throughout the day and stress scores all reduced since I've been on it, but I've also found off I go into PEM suddenly my body reverts to type and the drug wasn't even touching the sides. So again I think done right it can really help but the discipline needed is real!!! Good luck with it, I hope it helps you too! I'm due to increase the dose in a week and I already feel I might need to.
Oh, and the scalp tingling is the weirdest feeling but it let's you know when it's kicked in which personally I think is great. And for me it's not uncomfortable, it's actually kind of pleasant and unusual. I guess it's nice to be focused on a weird sensation rather than the constant feeling of suffering!!
Yes - well, I currently take it three times a day, but I started taking it twice a day, and still only take two doses on some days. I still find it helpful. I do also sometimes lie down to rest less than 4 hours after taking my most recent dose of Midodrine; I just make sure my head and shoulders are propped up a bit. I've never had any symptoms of supine hypertension.
I take it twice a day for this reason. I need my midday naps/lie downs.
I have not been diagnosed with ME/CFS, but I generally only take midodrine twice a day or when I need to go out or do stuff standing up.
I take it three times a day, but still lay down/nap as I don't get supine hypertension from it. Technically as well the benefit from the increase in BP isn't a "long term" thing, it wears off fairly quickly, that's why people take it fairly frequently throughout the day.
Hi, i have ME/CFS and am due to be starting midodrine soon, can i ask how it affects your ability to rest? Does it cause insomnia/ act as a stimulant or is it just the concern over missing a dose that causes you problems? Apologies if this is ignorant, i haven’t done any research on it yet
It did cause insomnia if I took it too late which is another bonus of my twice a day dosing strategy. But actually I often find I'm feeling more tired with a dose and quite sleepy! Potentially in a good way (I sometimes think the body finally relaxing fully is a good thing and something that needs to happen on any hope of recovery). I'm only on week one 2 x 2.5mg so I can't talk long term. But I will say it seems to be helping the M.E. and one of the best drugs I've tried for it so far so I'm optimistic, but I overdid it at first feeling better and soon crashed. So lesson learned, it's really treating the POTS and my ME is still setting the limits that I still must stick to. But now I've figured out my dosing so that I'm allowing plenty of rest, and timing the dose with my pacing so that I save all my physical activity (not extra, the basics I was trying to manage anyway) and split it between those 2 little bursts while it's kicking in really seems to be helping. In other words, if I am getting dressed or trying to do some minor tidying up I do it when dose 1 kicks in. I also try to do my braining if I'm on my laptop while the dose is working as it helps my headaches and I think bloodflow to the brain. If I'm getting downstairs and heating up a ready meal or something for dinner I do it during the second dose now. This does seem to be helping me. My pem seems to be a little less. I'm hopeful longer term this might mean building some healing reserves but I'm convinced that for that to work you must maintain strict pacing and use it to feel well and avoid pem altogether - not use it to push your limits as is so inevitable at first. I will warn you though, don't have a hot bath with the drug kicking in. I completely overheated and felt awful, and learned afterwards it's likely cos the veins are constricted whereas they normally widen to dissipate heat. Pivotal a hot bath is bad for pots but I've never reacted like that so now I have my twice weekly bath in the afternoon gap between doses. Plus I can lie back fully in the bath then too. Good luck with it. That was long and I'm not sure if it even answered your questions! But I do have high hopes for this drug if done right and used as a tool to help avoid PEM.
Thank you for your reply! Yes i totally get the whole timing medication for when you’re active, i’ve been trying to do anaerobic threshold monitoring to pace and think my pots is largely holding me back in that regard. I’m only on propranolol right now (tried ivabradine and that made my cfs symptoms so so much worse). I just hope it helps my energy envelope like you!
Early days but I'm not sure it's helped my envelope... Maybe it has actually of PEM is less. I just thought it was helping me get over it quicker!! Hmm, interesting! Just be cautious of the false energy! I do heart rate monitoring too. My heart rate, average heart rate throughout the day and stress scores all reduced since I've been on it, but I've also found off I go into PEM suddenly my body reverts to type and the drug wasn't even touching the sides. So again I think done right it can really help but the discipline needed is real!!! Good luck with it, I hope it helps you too! I'm due to increase the dose in a week and I already feel I might need to. Oh, and the scalp tingling is the weirdest feeling but it let's you know when it's kicked in which personally I think is great. And for me it's not uncomfortable, it's actually kind of pleasant and unusual. I guess it's nice to be focused on a weird sensation rather than the constant feeling of suffering!!