Midodrine

[AmberK]

Hi everyone,

I've just been prescribed Midodrine, and have a couple of questions if any of you wouldn't mind sparing a few minutes to help me please...

1) My concern is that I keep reading that you have to be careful when supine if you're taking it, but I lay down a lot because the symptoms are almost constant. Neither my GP nor consultant have warned me about this, so I figured you would be the best people to advise me about it. I try and lay propped up as much as possible, as I'm aware of how excessive laying down can worsen symptoms, but not laying down at all during the day just isn't an option.

2) The other thing that I wanted to ask, is could anyone tell me basically how Midodrine works please? I've read quite a bit about it but medical terms are used so often in these articles, that most of it has gone in one ear and out the other! Can anyone explain it to me in simple terms please?

Many thanks, Amber

(Edited to remove lots of unnecessary gabble)

[Guest Alex]

Hi Amber,

I am no longer on midodrine (my dr decided it wasn't the right drug for me) but I can tell you about my experience.

I haven't been warned about the possibility of my BP increasing while taking a nap either, so I learned the hard way that I should nap sitting...which i did for a while. Not very comfortable, but I had no choice as I was exhausted.

I am unsure if there is a potential for midodrine to cause supine hypertension if you just occasionally lay down for a short while several times a day, compared to a long nap or spending a long time laying down, but maybe your dr could clarify that for you, or someone else on this forum.

How does it work ... It constricts your blood vessels (that's why some side effects reported by most people, myself included, are goosebumps and itching ofn your scalp). By constricting your blood vessels it increases your BP and at the same time it reduces the heart rate. (this is how midodrine's mechanism of action was explained to me by a nurse in simple terms)

Hope this helps and you find midodrine beneficial.

For me the increase in BP was too much and I couldn't tolerate it well.

Best,

Alex

[puppylove]

For me, I also had to stop because of too many side effects. But, I know for some people it works wonders!

[diamondcut]

I must say i did ok on it. I was lucky that laying down didnt cause me any high BP's compared to standing.

I think its one of those drugs you have to try and just monitor yourself.

Good luck

[roxie]

Yes, you aren't supposed to lay down on it. That was hard for me to of how much I layed down before. I started with one dose &forced myself to sit up for 4 hours. I'd need to lay down for a few minutes here and there. It's slowing getting easier.

I haven't been able to nap sitting up. I just sit with my eyes closed and try to relax as much as possible

[AmberK]

Thanks for your replies. Is it that the people it helps, are the ones with very low blood pressure all of the time? My BP is "normal" most of the time, with frequent sudden drops.

It does sound important to try not to be supine too much, so thank you for the advice. I will try and sit propped up as much as possible. I've bought a BP monitor so that I can keep an eye on what's happening. Thanks again.

[Kay107]

I am on Midodrine and also have almost normal BP with sudden drops. I have only been on it for a couple weeks, my dr didn't warn me about laying down either. It has helped me so far, although I had to go to a higher dose.

[E Soskis]

not sure why MD's don't warn people about lying down after taking midodrine - perhaps they don't even know???? anyway....I've been on midodrine for years - it is very potent but, short-acting. It causes the blood vessels in the arms and legs to constrict (get smaller) in order to increase the blood volume available to major internal organs (heart, lungs, brain, etc) With the blood vessels in the arms and legs now constricted, the central blood pressure increases. So, instead of the sinking feeling with low blood pressure, you begin to feel better because your BP increases.

The reason we can't lie down after taking midodrine is because by lying down, blood begins to flow more freely to the internal organs thereby causing a further increase in blood pressure. Once a dose is taken, it begins to act quickly (usually within a few minutes) and only lasts a couple of hours at most. If you truly have low blood pressure that tends to stay low, midodrine is a wonder drug. The preferred position with autonomic failure is a semi-recumbant position - 30degree elevation of head, pillows under arms and legs (a recliner type position) This allows for maximum blood flow to internal organs without "rebound" hypertension or the low blood pressure from sitting up with feet on floor. I know some physicians even have recliners in their office for autonomic failure patients.

The high blood pressure resulting from lying down after midodrine also is why physicians should warn patients about not taking it close to bed-time. I had instructions not to take it after 4-5pm in the afternoon but, I go to bed pretty early. My concern for you is that you have "sudden" drops - are you sure you don't have a sudden heart rate drop then your BP falls because of that? This would be suggestive of another type of disorder - I have AAG and that is what happens to me.

Good luck - hope it helps you feel better. You can start out with a very low dose at first and see how it does - it is much easier to gradually increase doses than to get hit with a bang and have to back down......that can discourage you from continuing the medication.....

[roxie]

Mine is pretty labile

[looneymom]

My son has POTS with low blood pressure and has been on Midodrine for over a year. The first dose he was put on was not enough because his blood pressure would drop during the slightest physical activity. So his dosage had to be upped some more. His blood pressure is more stable and he is able do more than what he was one year ago. One year ago, he was unable to walk and had to be in a wheel chair. Finding the right meds. to help with the problem is a battle because you never know your body is going to react to the medication.

[AmberK]

Thanks everyone for your replies. I stayed propped up most of the time, but when I felt particularly ill I took my bp which was a little low, so figured I could shuffle down on the bed a little safely enough. I'm glad I got the BP monitor as it's been handy to make me feel a bit more in control and knowing what's going on.

[AmberK]

Just thought of something else that I was wondering... what dosages are you all on? I've started on the lowest dose of 5mg/day, doubling to 10mg after four weeks, although I'm not sure if that is going to be 10mg in one dose, or two separate 5mg dosages. Then I'm due to see the consultant again to review dosages further.

[E Soskis]

I generally take 10mg in the morning upon waking up (sometimes 20mg if I am really struggling). I take a second dose of 10mg about lunchtime. If I'm having a bad day, the second dose may be midmorning with a third dose of 10mg early afternoon. You will have to learn what a good dose for you is - some people need more, some less. Before I started plasma exchanges, my dosages were frequently up to 70 mg a day which really pushing the upper limits. It seems prudent to start low and go from there - just don't take it close to bedtime

[RichGotsPots]

i didnt read everyone's comments so i might be repeating what they said. But Midodrine simple raises BP by constricting blood vessels. The problem is does it for blood vessels everywhere. So ppl get pressure feelings in their head. Also it does it all the time in any position.

I am thinking of trying it but I heard much better things about Mestinon, which does the same thing but from one study they said it only raises BP mainly when standing and not laying down.. But it has it's own side effects too..

For either I would ask your doctor to make sure you're not hyperadrenic too. I have high BP and low BP and it's hard to tell unless you get a through testing, even while walking on a treadmill..

[rspry]

I have been on Midodrine 5 mg twice a day for 6 years. I personally have very few side effects. I was told to wait at least a half hour before taking a nap or laying down so that's what i have done. If I would like to sleep and its time for a dose ill usually take a nap and then take the medication when i wake up. Everyone is different so I would defiantly give it a try.