Midodrine and Lying Down

[Jenny TipsforME]

I started taking midodrine yesterday. I'm after input from people who have ME and POTS and take midodrine.

When you take it you're not meant to lie down for 4 hours. Now for me that's quite a long time to not lie down/put my feet up.

Does taking midodrine at the right dose take away the need to lie down?

Do you take it less often for this reason? Eg my doctor prescribed it 3x a day but maybe I should take once a day and have a more upright 4 hours?

If I just keep my head elevated do you think this is enough?

I've just got a blood pressure monitor. If my blood pressure isn't high do you think it is ok to lie down? Is this the only reason for the advice?

I also take bisoprolol and ivabradine. This is in addition.

 

[KME]

I was hoping someone would answer your question as midodrine is on my potential wishlist and I am not able to be upright for longer than a few minutes, generally. I'd suggest asking the doctor who prescribed it for you, and/or a pharmacist. By definition they're prescribing this for many people who find it hard to sustain upright posture, so this has to have come up before. But it's possible that your prescribing doctor isn't aware of how much of your day is supine so I'd get in touch.

If you have no luck there, you could go out on a limb and email one of the ME specialists who are into OI/POTS.

From looking it up minimally the (only) risk seems to be supine hypertension. (I've only looked at simple things like http://www.mayoclinic.org/drugs-supplements/midodrine-oral-route/proper-use/drg-20064821) But of course sitting or standing up carries the risk/certainty of orthostatic hypotension and PEM!

This made me snicker "Midodrine should be taken during the day when you need to be in an upright position and pursuing activities of daily life." https://www.drugs.com/cdi/midodrine.html Chance would be a fine thing!

This seemed helpful: "Supine hypertension does not usually cause symptoms, but rarely people may experience chest pain, unexpected headache or blurred vision. If you develop these symptoms, you should stop midodrine and inform the prescribing doctor. Elevating the head of your bed may reduce the risk of supine hypertension." http://www.potsuk.org/midodrine

I'd be really interested to hear what advice you end up getting/what you end up doing - please post if possible!

 

[Jenny TipsforME]

@KME what I did today was I just took it in the morning because I had something to do. In the afternoon I felt like I needed to be fairly flat so I didn't take it.

I'm on a low starting dose. Perhaps as I increase I'll not feel the necessity to lie down in the day?

I did discuss it with my doctor. I think in the end we decided that if I increase the dose and it doesn't enable me to do more (not be lying down) I'll stop it and try fludrocortisone instead. But there'll be a couple of months of trying it and I'm not too sure how to manage the lying down thing in this in between.

 

[Sushi]

I started taking midodrine yesterday. I'm after input from people who have ME and POTS and take midodrine.

Midodrine seems to affect patients in different ways. It is a medication to monitor carefully. I was sailing along on it (2 doses a day) and finding a huge improvement in OI. I was careful about lying down. Then one day two weeks in I had a really adverse reaction (while sitting). At the time I didn't have a BP machine but in retrospect, I'd guess it was a spike in BP. It was quite scary and looking up the half-life I decided just to wait it out as my doctor was out of town and I couldn't reach him. When I did talk to him he said to stop the medication.

This is an uncommon reaction but I have heard of others having it too. Someone else I know actually had it lower her BP to dangerous levels (she went to the ER). But most do fine with it. From my experience, I'd just suggest that you monitor your BP and perhaps keep note of how it affects you so that you can dialogue with your doctor.

 

[ahimsa]

I started taking midodrine yesterday. I'm after input from people who have ME and POTS and take midodrine.

When you take it you're not meant to lie down for 4 hours. Now for me that's quite a long time to not lie down/put my feet up.

Does taking midodrine at the right dose take away the need to lie down?

I've been taking midodrine since 2003. I was taking a 5 mg tablet 3 times a day for a while and then I increased it to 4 times a day. (doses between 3.5 to 4 hours apart)

If it's a really bad day, and I'm going to actually be in bed most of the day (migraine, flu, something like that), then I skip the midodrine. It's really only useful (for me!) when I'm going to be upright, which is mostly either doing some small tasks around the house or going out to do errands.

What I do when I'm taking midodrine and need to rest is to lie back in the recliner with my feet up. In that way I'm not completely horizontal.

For example, right now I'm sitting sort of like the photo below, but I'm resting my head on a back rest (my chair is taller) and my hands/arms are more supported:



I should note that using the computer is NOT resting. I just had this photo handy since someone once asked me how I use the laptop. When I'm resting the position is similar, but even more reclined.

If I just keep my head elevated do you think this is enough?

I measured my blood pressure in this position and it seems to work okay for me.

On the other hand, while I try to do avoid lying down after I've taken my midodrine dose, there have been many times when I felt really sick and had no choice. I had to lie down in spite of the fact that I had already taking my midodrine dose.

I have a feeling that with my very low blood pressure this is not a huge problem for me. I've measured my BP while lying down and on midodrine and it does not seem to get too high.

However, just to be on the safe side, I do try to avoid lying down flat while I'm taking midodrine. But, as I'm sure you can relate, I can't always predict things.

I hope this is helpful. I think measuring your own blood pressure will help you figure out what works for you.

PS. I have not yet read the other responses. I wanted to go ahead and respond first while I was still thinking about this. Brain fog today....

PPS. I forgot to mention that I'm also taking 1/2 tablet of fludrocortisone (= 0.05 mg) daily and a prescription potassium (10 mEq = about 750 mg). [ At least, I think those dosages are right ] No other prescriptions other than pain relievers as needed (Rx for migraine).

 

[Kati]

I have used Midodrine for a few months, but didn't find it helpful. I too worried about my BP going up too high when laying down. What limited my usage of Midodrine were the side effects, shivers up and down my spine for hours and hours. And then my blood pressure was going up, too high for my own liking so I stopped taking it altogether, and I don't really miss it. My dosage was 5 mg 3 times a day, (after ramping from 2.5 mg) but I only took it mid morning when I knew I would need to go for groceries or something.

For POTS I am on Atenolol- and it's working fairly well. Not perfect but it works.

Everybody is a bit different about their POTS treatments and what worked for them. I tried fludrocortisone but another dr told me to stop as it raised my blood pressure. For some, fludro works well for them.

 

[ahimsa]

Hi @Kati - thanks for adding your input. I completely agree that folks can often react differently to new drugs so they need to be careful and watch for side effects. I'm always glad when @Sushi posts the warning about midodrine, for example.

FYI, I did not have POTS when I was first diagnosed with Orthostatic Intolerance. At least, not according to whatever diagnostic criteria were being used by my cardiologist back in Jan. 1995 (my first tilt table test). I did develop POTS later on.

At any rate, it could be that patients whose main problem with Orthostatic Intolerance is Neurally Mediated Hypotension (NMH, aka NCS neurocardiogenic syncope and a few other names) will have a different reaction to midodrine than those who have a primary diagnosis of POTS. And that's not even counting the various forms of POTS.

Plus there's a lot of overlap (and some disagreement) on the terms and diagnostic criteria for various forms of Orthostatic Intolerance. It's all so complicated.

 

[Sushi]

FYI, I did not have POTS when I was first diagnosed with Orthostatic Intolerance. At least, not according to whatever diagnostic criteria were being used by my cardiologist back in Jan. 1995 (my first tilt table test). I did develop POTS later on.

At any rate, it could be that patients whose main problem with Orthostatic Intolerance is Neurally Mediated Hypotension (NMH, aka NCS neurocardiogenic syncope and a few other names) will have a different reaction to midodrine than those who have a primary diagnosis of POTS.

Interesting. When I had the bad reaction to midodrine I had NMH, not POTS. Now I have POTS!

 

[Kati]

@ahimsa was POTS known back then? It seems like it is faily newly recognized

And yeah, the type of OI will dictate what the treatments should be, along with personal history. We are all slightly different.

i had to fly 7.5 hours away in order to get my POTS diagnosis. My doctor thought I was lazy and depressed, that's why I preferred to lay down in her office as opposed to sit.

 

[ahimsa]

@ahimsa was POTS known back then? It seems like it is faily newly recognized

I think the patient handout from Dr. Rowe, which I first read in 1996, mentioned both NMH (called Vasodepressor Syncope or Vasodepressor Hypotension?) and POTS. Also, the CFIDS Association web pages about Orthostatic Intolerance included both NMH and POTS.

I don't know when the Orthostatic Intolerance web pages were first created but they were there shortly after I went on disability in 2000 (maybe not there in the 1990s).

Here's a snapshot from the wayback machine from 2001:

https://web.archive.org/web/2001083...s.org/about-cfids/orthostatic-intolerance.asp

 

[Kati]

I think the patient handout from Dr. Rowe, which I first read in 1996, mentioned both NMH (called Vasodepressor Syncope or Vasodepressor Hypotension?) and POTS. Also, the CFIDS Association web pages about Orthostatic Intolerance included both NMH and POTS.

I don't know when the Orthostatic Intolerance web pages were first created but they were there shortly after I went on disability in 2000 (maybe not there in the 1990s).

Here's a snapshot from the wayback machine from 2001:

https://web.archive.org/web/2001083...s.org/about-cfids/orthostatic-intolerance.asp

Interesting. Thanks.
It's pretty sad though that science is just starting to be interested and that maybe physicians will know right off the bat what POTS means without having to pronounce the words.

 

[KME]

@KME what I did today was I just took it in the morning because I had something to do. In the afternoon I felt like I needed to be fairly flat so I didn't take it.

I'm on a low starting dose. Perhaps as I increase I'll not feel the necessity to lie down in the day?

I did discuss it with my doctor. I think in the end we decided that if I increase the dose and it doesn't enable me to do more (not be lying down) I'll stop it and try fludrocortisone instead. But there'll be a couple of months of trying it and I'm not too sure how to manage the lying down thing in this in between.

Hi Jenny,



Yes, it’s the troubleshooting-in-the-meantime that’s tricky, isn’t it? I bet you’ll try a few things out and figure out what works for you. It would be really super if it significantly increased the amount of time you could be upright for.



I asked a pharmacist friend of mine and she sent me this link https://www.drugs.com/pro/midodrine.html



Between that and people’s experiences on here, it seems like elevating the head of your bed (and anything else you rest on) is a good preventive measure.



It also seems like because of when the drug is most active in your body and when it wears off, it might be most important to be upright for the first couple of hours and less risky to sit/lie with elevated head later in the four hour period: “In a 2-day study, after open-label Midodrine, known Midodrine responders received Midodrine 10 mg or placebo at 0, 3 and 6 hours. One-minute standing systolic blood pressures were increased 1 hour after each dose by about 15 mmHg and 3 hours after each dose by about 12 mmHg; 3-minute standing pressures were increased also at 1, but not 3, hours after dosing. There were increases in standing time seen intermittently 1 hour after dosing, but not at 3 hours.” (from link above https://www.drugs.com/pro/midodrine.html)



But that is dose-dependent, so if your dose is low, it’ll wear off quicker, but if higher, it’ll last many hours:

“In a 1-day, dose-response trial, single doses of 0 mg, 2.5 mg, 10 mg and 20 mg of Midodrine were given to 25 patients. The 10 mg and 20 mg doses produced increases in standing 1-minute systolic pressure of about 30 mmHg at 1 hour; the increase was sustained in part for 2 hours after 10 mg and 4 hours after 20 mg. Supine systolic pressure was greater than or equal to 200 mmHg in 22% of patients on 10 mg and 45% of patients on 20 mg; elevated pressures often lasted 6 hours or more.” (from same link again https://www.drugs.com/pro/midodrine.html)



Maybe some planned brief little sits/semi-lies might prevent the need for prolonged lying down flat. I like Jen Brea’s sitting style – cross-legged in wheelchair. Might be a good time for more structured pacing too.



Thanks so much for starting this thread – this may well be relevant for me if I can ever get out of the house to see a proper OI person. It’s always daunting starting these things but ME (and POTS) make super-troubleshooters of us all – you’ll trial and error your way to what works for you. And if it doesn't work, well, on to the next thing...

 

[Jenny TipsforME]

"elevated pressures often lasted 6 hours or more."

That's longer than I expected

Right I can feel it working now. Going to test in the shower.

 

[Kbrown84]

Hi, i see people have covered everything but just wanted to tell you mine and my daughters experience. We see Dr Gall at kings in London for our pots and he told us to only take it if you know you're doing something. If you need a rest day don't take it. Also you don't need to take it 3x daily, again don't bother if you're planning to sit and watch tv.
He also said if I've taken it and need to lie down then try a recliner chair so you're not completely flat. But if you need to go to bed just kerp and eye on your blood pressure and if it raises then sit up for a bit.
How are you finding it so far?

 

[Jenny TipsforME]

No house too cold for shower, waiting for heating to work!

various forms of POTS.

Part of my interest in taking it is to get a better sense of the issues behind my POTS. eg if midodrine is helpful I might also prioritise expensive compression tights (have cheap ones now) because it would indicate vasodilation is important factor (does it also point to a neurology explanation because the vasoconstriction message isn't getting through? Whereas fludrocortisone being effective would point to lack of blood volume?).

I've heard it said that POTS is a bit like a fever: it is a measurable medical problem but more like a symptom which can exist for lots of reasons. This sort of makes sense in terms of so many pwme having it. It can be seen as an aspect of the condition that some people have (like muscle pain) and others don't.

Or there could be the same causal factor behind both eg autoantibodies, which there's evidence of.

that's why I preferred to lay down in her office as opposed to sit.

Like laziness would be the reason for that! You were either seriously ill or attention seeking and attention seeking is quite different from laziness

 

[Jenny TipsforME]

Well it is worth me having a tub of midodrine even if just for when I need to wash: my heart rate didn't go over 82, I had hot water on my head without feeling like I could faint and I got dressed straight away. I do feel tired now (and would prefer to lie down) but it isn't overwhelming. Usually washing is the last thing (sometimes only thing) I can do in a day, I'm in bed afterwards.

I have started to take showers again recently but my heart rate usually goes quite high and it doesn't feel like an amazing idea (though in some ways a standing shower is less involved than a bath or sitting shower, it is easier to wash). I watch my bpm carefully in the shower, last week it was consistently over 100, sometimes it is in the 90s. For over 4 years I was too ill to have a standing shower, so this isn't a small problem for me.

Also, this is probably a silly question thinking about it but is it abnormal to have red feet when you wash? I think I've always had this if water is above body temperature. Today only my toes went red (vasodilation). My partner apparently doesn't get red feet. This was something I'd just accepted.

 

[Jenny TipsforME]

Ha I don't think I need to be too worried about high BP. Currently 86/61 and midodrine still somewhat active. I'll try again it next 1hr in as that sounds like peak effectiveness of midodrine.

I definitely get a whitecoat effect with blood pressure so my low BP doesn't show up around medics.

 

[Seven7]

Currently 86/61

I am in the same boat, I know I am not supposed to lay down on it but my natural BP is so low to be honest I can lay down not issues at all. I started testing the waters, at hour 3 I would lay and nothing happened. But one day I crashed that I just took 20mg of midodrine and went immediately to bed and I have no issues. I take 60mg a day (max dose a day). I lay when I need to.

The drug is about 4h supposedly, Mine runs out about hour 3 (I start feeling symptomatic then) so you can test the waters and see how your body behaves. Be careful, and monitor it. I am not doctor just my experience. this is serious drug so be careful.

 

[Jenny TipsforME]

@Kbrown your reply didn't show up earlier for some reason. That sounds like practical advice from your doctor. After the shower success I'm feeling optimistic (but also trying to keep my hopes in check as you learn to do).

 

[Jenny TipsforME]

I'm finding I actually feel sleepier on midodrine, which makes this general issue more difficult. On this thread it is suggested that this is to do with oxytocin. I can see that this sort of fits the sensation. I am able to stay awake though unlike @Gingergrrl

I'm also in a crash like state. I've been very weak for the last few days. Going into that not totally awake but not asleep way of existing which I associate with severe ME. I'm wondering if sitting upright and standing more via midodrine has been worse for my ME? IIRC other people have had this type of PEM midodrine issue.