Goschi Posted April 3, 2015 Report Share Posted April 3, 2015 Hello to everybody,I am just starting an "experiment". For the last 10 months I have taken 5mg midodrine per day (2,5mg in the morning, 2,5mg at noon) - just as a kind of "routine"...Now I am no longer sure whether I still need it, re if it still helps me at this dosage (which is not the same, I know...-)I am now thinking about either tapering it down completely or even raising the dosage (to 7,5mg per day) - in order to see, which of these actions will bringany (and which?) results!Now my question(s):What daily dose of midodrine is everybody taking (if you take it at all)´?Did anybody have to raise the dose in the course of time? (Because it´s effect got weaker over time)?Did anybody taper down midodrine or even left it away completely eventually? (Because there was no longer any difference in how you felt with and without the med)?Thanks a lot for any replies in advance!I am wishing a happy and peaceful Easter to everyone!! Quote Link to comment Share on other sites More sharing options...
dkd Posted April 3, 2015 Report Share Posted April 3, 2015 I have been wondering about this also. I have been taking 5mg just once in the morning. My doc recently suggested I take 10mg twice per day because the recommended dosage is 10 mg three times per day.I have not noticed any difference in my symptoms, but I do have increased tingling on my scalp/head and goose bumps all over my body. That only lasts for a little while (< 1hr). I'm not sure that it's helping though, so this week I've started with 7.5 mg. The goose bumps are a little less with that dosage. Honestly, I've been thinking about not taking it anymore, so I'll be curious to hear other peoples experiences too Quote Link to comment Share on other sites More sharing options...
sideofsalt Posted April 4, 2015 Report Share Posted April 4, 2015 My usual routine is I take 5mg midodrine twice per day, sometimes supplementing with 2.5mg as needed. Recently, I did not feel the need to take the second dose, so I have been taking 2.5mg as needed. I just saw my cardiologist who said that he preferred I take consistent doses and spot treating is not recommended. If you are considering increasing your midodrine, there is one blanket recommendation I can make: INCREASE VERY GRADUALLY (titration is key). At the beginning of my POTS, it took me a while to understand how I felt on the medication and how to adjust. I made the mistake of literally doubling my dosage after my doctor instructed me to but realized after an unpleasant few days, that I should have gradually increased over a series of days. Some of us really do have to increase all doses, some of us just have to add a dose, and this even changes over time. I ended up just needing to add a mid-day dose. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted April 6, 2015 Report Share Posted April 6, 2015 I've been on midodrine for many years. I have adjusted the dosage up and down depending upon how symptomatic I am. My docs trust me to make the proper dose adjustment every day. I've been on as much as 70mg/day (absolute upper limit) and as little as 10mg/day. My current regime is 20mg when I get up in the morning, and another 10mg right after lunch. Occasionally, I have to take an extra 10mg depending upon flaring and other medical conditions. I don't find that the strength is any less over time - I think the manufacturer has more to do with how well it works. One manufacturer makes midodrine to dissolve mostly in the mouth and it enters circulation faster than the kind that must dissolve in the stomach or intestine. So, I can feel effects in just a few minutes or it may take an hour to kick-in. In 9 years, I have never made it all day without at least one dose of midodrine - the only time I've been that low on dosage is when I'm hospitalized and unable to take it like I need! Quote Link to comment Share on other sites More sharing options...
shan1212 Posted April 9, 2015 Report Share Posted April 9, 2015 I take about 25mg per day. I generally take 5mg every couple of hours while symptomatic. When very dizzy or symptomatic, I'll take another 5mg immediately. Most days I take 5 pills.I can relate to wondering if the meds you're taking actually help you. I'm currently weaning off of Zoloft, stopped taking Metoprolol, and am taking less Trazodone and Florinef. But Midodrine is the one drug that I know for sure helps me. The second pill has saved me many a time from what would have previously been a terrible battle to reboot my blood pressure. I will often be driving my kids to school and think, "Ugh, why am I so tired?" and then I remember that I haven't taken any Midodrine yet.I've taken to keeping a few pills everywhere -- there's a bottle in my car, one in my basement, one in my kitchen, etc. I even have a couple of pills tucked in my wallet in case I forget my medicine purse. It's the one drug I really need to have on hand at all times. Quote Link to comment Share on other sites More sharing options...
Goschi Posted April 11, 2015 Author Report Share Posted April 11, 2015 Thanks to you all, folks!!In the meanwhile I tried updosing as well as tapering midodrine (i.e., I went from my usual 5mg per day slowly up to 7,5mg and also slowly down to 2,5mg). In both cases I didn't notice ANY difference... Just as I expected. Don't know what to do with this, will have to think about it.(Docs are not really helpful though - two of them recently told me I should get rid of midodrine, as it is not thought to be useful in POTS, only for other diseases... LOL !!) Quote Link to comment Share on other sites More sharing options...
pooter18 Posted April 12, 2015 Report Share Posted April 12, 2015 my doctor never had me taking it on a daily basis..i can tell if my b/p is droping and then i take 2.5 mg if it doesn't come up in hour or so i take another 2.5 but that is about all i need anymore..i drink lots of fluids and G2 gatorade and extra salt and i get Iv's weekly that seems to work better than the meds..i maybe have to take it once a week now instead of daily ..plus it was so expensive it was putting me in the donut hole about september..i was in the hospital last week for problems related to dysautonomia and my b/p dropped to 80/54 they could not get the midrodrine but i had some on me so they let me take it..so it must be getting harder to come by glad i don't have to take it as much now..hope everyone has a great weekend Quote Link to comment Share on other sites More sharing options...
nomdeguerre0850 Posted April 20, 2015 Report Share Posted April 20, 2015 My Mayo doc started me on 2.5 mg of midodrine three times a day(tid), to be titrated up. Even this small dose really made a difference for me. Increased to 5 mg tid, for a while and then to 7.5 tid. The goal was 10mg tid. At 7.5, I had some significant spikes in bp, so I went back down to 5mg. I was on that dose until a month ago when I discontinued it to try Northera. What a difference. Midodrine was very helpful, but seemed to only last 3-4 hours, and I often felt "whipsawed" by the changes in my bp. The Northera seems to put a floor under the bp and wears off more evenly. It's only been a month, but so far it has made an enormous difference in many of my symptoms, not just the bp issue.Besides noting changes in how you are feeling, it is very informative and helpful to monitor your bp lying and standing. It gives both you and your doctor some concrete info that can be very helpful in evaluating your response to any drug that affects your bp or heart rate. Quote Link to comment Share on other sites More sharing options...
needafix Posted April 30, 2015 Report Share Posted April 30, 2015 I also take midordrine. I used to take 05mg 3 times a day now it is 10mg 3 xa day. but I have been told not to take it after 4pm. I passed out because I did not have any in my system when I was out one evening so now I take it when I need it no matter the time. Quote Link to comment Share on other sites More sharing options...
Goschi Posted May 1, 2015 Author Report Share Posted May 1, 2015 Is my impression right that most POTS patients who take midodrine (and can tolerate it and feel a positive effect in general) need to increase the dosage over time?Does this mean, this med makes you addicted and drives you into tolerance after so time?? I would not be so fascinated about that, to be honest. I'd rather quit taking it asap if this is what happens!! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 7, 2015 Report Share Posted May 7, 2015 Ive never had to increase the dosage but i sonetimes have breaks from it Quote Link to comment Share on other sites More sharing options...
Goschi Posted May 7, 2015 Author Report Share Posted May 7, 2015 Thanks, rama! This is in fact encouraging! Btw I recently "played" with my dosage and finally ended up actually reducing it. I am now on only 2,5mg once per day in the morning - that is how I feel best, twice 2,5mg was definitely too much.My final goal would be to come off it completely, as I have a gut feeling that this med may help a bit with POTS - but overall, I don´t feel really well on it... Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 10, 2015 Report Share Posted May 10, 2015 My pots is all over the place so often i dont take any - or i take 2.5 and on bad days i either take 5mgs or i take pseudoephedrine - my doc is fine with this regime. this is on top of florinef. Quote Link to comment Share on other sites More sharing options...
Arez2row Posted May 12, 2015 Report Share Posted May 12, 2015 I take 2.5mg 3x a day along with Florinif.. it is usually helpful, but sometimes it is it isn't enough. During flares, or days when I am over tired I still pass out. Quote Link to comment Share on other sites More sharing options...
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