dancer65 Posted May 10, 2016 Report Share Posted May 10, 2016 I am on week five of taking midodrine and seeing small improvements in a number of my symptons ( think it was Katy who said small improvements across the spectrum of symptons make a difference ) and it is the first time in two years I am actually feeling like this may work for me if I can get the dose and timing correct. I am still getting pre syncope attacks a few times a week but that's better than a few times a day! My question is ( excuse my lack of understanding on these matters ! ) if you increase the dose which is what my pots cardio was proposing when I saw him, does the effects last longer? I really see a dip in function after thee hours and have been told to take it every four to six hours. I actually do four or I feel pretty yuk again. I currently take 3x5mg a day and he said on busy days I could take an extra dose which I do and it makes a big difference when I am teaching something I will mention to him as I have to e mail this week so far Bp is getting as high as 100 / 60 very occasionally 110/70 great improvement compared to 60/40 and my fatigue and stamina are improving very slowly . so far no goosebumps or scalp tingling only a burning itchy rash which seems to have calmed down hoping you all having a good week Quote Link to comment Share on other sites More sharing options...
DADofPotsSon Posted May 10, 2016 Report Share Posted May 10, 2016 My son#2 took midodrine for years and still occasionally takes it, though he currently relies on Florinef. Anyway no matter what his dosage was it always was 3 to 3.25 hours for the effect! He seemed to have better results with the original drug Proamatine usually 3.5 to 4.0 hours, of which his Dr. prescribed but the insurance company had a fit due to the increased cost! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted May 10, 2016 Author Report Share Posted May 10, 2016 Thank you for you reply that info is really helpful. I was on florinef for 18 months it did help in the beginning with BP but now I am off it I actually think I was beginning to have more side effects than I realised . I am in uk and my dr agreed to for fill my cardiologist request for midodrine I am grateful for that ! Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted May 11, 2016 Report Share Posted May 11, 2016 I am trying to get a hold of my daughter's cardiologist to see if he will switch her from Florinef to Midodrine. We are starting to link some very unwanted issues to the Florinef. She has good results (like not passing out in the shower), but the side effects are starting to really add up. Is midodrine something that we could substitute for the florinef? We will need something that would help keep her bp up, heart rate down, and help some of the other autonomic issues. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted May 11, 2016 Report Share Posted May 11, 2016 My drs have me on midodrine and florinef together. My neuro told me yesterday that they like to use them together because they work in totally different ways and are more effective together. (I'm on 0.1 MG florinef x2 a day and midodrine 10 MG x 5 a day. Take midodrine every 3 hours during the day until 6 because dr does not want it in my system while I'm sleeping.) Midodrine is a vasoconstrictor meaning it helps keep the blood from pooling in the extremities, while florinef helps the body retain sodium which expands fluid volume. So florinef is a longer lasting help but takes a little while to become effective over time, also needs to be closely monitored as it causes the body to waste potassium. It is also only effective if there is adequate salt and fluid intake. Midodrine has a very short half life so is great for times that require more orthostatic posture while not raising supine blood pressure too high. There are many people who experience a sort of "crash" at the 3 hour mark when midodrine is no longer effective whIle others do not. Dosage does not extend the half life of the drug for me. I am on a rather high doses of midodrine right now and they are discussing trying to get me down, without making me worse. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted May 11, 2016 Report Share Posted May 11, 2016 ANCY, Thank you for explaining this. It sounds like we are going to have issues if we take her off of the florinef. We think that the florinef might be causing a problem with an ongoing yeast infection and some stomach issues. In the literature, it makes it clear that you are not suppose to take florinef if you have a fungal infection (even just a simple vaginal yeast infection), and this is the only thing that we can think of that has been causing this ongoing problem. Yet, if we lower her dose, she starts passing out in the shower. We are really in a catch 22. Would love for her to try the midodrine though. My daughter has such trouble with blood pooling in her feet that I can imagine that this is part of her other problems. She can have her feet dangling for about 3 minutes and they start turning purple. You should see them after about 10! I'm also wondering if her vertigo might improve if her blood would circulate better. Thanks for the help! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted May 12, 2016 Author Report Share Posted May 12, 2016 Dizzy girls sorry to hear your daughter still having problems finding a balance with meds. I find it takes me a while in the morning to stabilise myself so water etc etc since being on the midodrine but once I am up and running I feel more with it clearer head, less tachy, and the muscle joint pain although still there is actually bearable I think these improvements are due to the better circulation. I think the florinef was causing headaches / migraines to a certain degree I also started to put on weight with it . Although the florinef helped me in the beginning I felt it had stopped working as well for me , my cardio said that can happen sometimes. ancy thank you for that info I hope you are doing well Quote Link to comment Share on other sites More sharing options...
shan1212 Posted May 12, 2016 Report Share Posted May 12, 2016 I must be a fast metabolizer because I need Midodrine every two hours. I generally take 5mg at 8am, 10, 12, 2, 4, and sometimes 6. I will also take a second pill after 30 minutes if the first pill has not alleviated symptoms. I average 25mg a day. I also take 0.1mg Florifinef. Quote Link to comment Share on other sites More sharing options...
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