helen.t Posted August 16, 2006 Report Share Posted August 16, 2006 I have been diagnosed with POTS for the last year and have just been prescribed midrodine. has anyone tried it and did you have any success in helping you recover. Can you tell me how it helped you and what kind of relief of symptoms did you experience. I will be grateful for any info. anyone can give me on this.Thanks a million!! Helen Quote Link to comment Share on other sites More sharing options...
lalalisa Posted August 16, 2006 Report Share Posted August 16, 2006 Hello Helen,Welcome!!I have taken Midodrine every day (three times daily) now for 4 years. It helps me to be able to stand - at least for short amounts of time. It helps with the lightheadedness and wooziness - especially when I stand. If I had to pick a medicine that I couldn't go without it would be midodrine. Obviously everyone is affected by meds differently but I'd say it's definitely worth trying. I did have to get used to having "goose bumps" a lot of the time...kind of a weird sensation...but definitely worth it.I take 10 mg - three times daily.Take care and let us know how things go,Lisa Quote Link to comment Share on other sites More sharing options...
Ernie Posted August 16, 2006 Report Share Posted August 16, 2006 Hi,I went from fainting every time I stood up to twice a week. Quote Link to comment Share on other sites More sharing options...
ariella Posted August 16, 2006 Report Share Posted August 16, 2006 Helped me (a lot) for a while and then stopped working. As did mestinon. Ariella Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted August 16, 2006 Report Share Posted August 16, 2006 Many here have found midodrine to be useful, myself included. It worked wonders for me at one point. I no longer take it b/c my fainting or near fainting episodes are able to be managed via a longer acting medication (for blood pressure control). However, I wouldn't hesitate to take it again if what I'm taking now ever stops working. You will find it to be a common drug used to treat dysautonmia and many people here have tried it, or are on it now.Remember though, that everyone is different, so it may or may not work for you. The saving grace of midodrine is that it only stays in your system for 4 hours per dose, so if you have a bad reaction it'll be over quickly and completely eliminated from your body within a few hours.Nina Quote Link to comment Share on other sites More sharing options...
MNsue Posted August 16, 2006 Report Share Posted August 16, 2006 I tell my husband that I am chemically sustained by Midodrine. It is a real life saver. I went 15 years undiagnosed. I can now function most days. I am not perfect, but I am definitly better. Rhonda Quote Link to comment Share on other sites More sharing options...
marnian Posted August 16, 2006 Report Share Posted August 16, 2006 Midodrine has really helped me. Like others have said, everyone seems to act a little differently, but it makes a huge difference for me. It also lets me be on a higher beta blocker dose than I'd ever be able to tolerate without it. But oh...the goosebumps and the chills...At first it seemed harmless that half the day I had goosebumps and the other half the day just pressing on my skin caused goosebumps. Then I tried shaving my legs.... yikes!!!! I suppose fuzzy legs and summer sweaters are a small price to pay for being able to stand though Quote Link to comment Share on other sites More sharing options...
lthomas521 Posted August 16, 2006 Report Share Posted August 16, 2006 I take midodrine once a day, first thing in the morning, because that's when I have the most trouble. Then I drink a liter of water with 1/2 tsp salt, 1/2 tsp baking soda, 1/2 tsp potassium chloride (salt substitute), 1/2 tsp sugar, and some licorice extract (with glycyrrhizin) that I got from the health-food store. I drink another liter of that mixture at night. Quote Link to comment Share on other sites More sharing options...
helen.t Posted August 17, 2006 Author Report Share Posted August 17, 2006 Hi, Thankyou all for your replies! You have really given me some hope and encouragement. I have been ill for so long and just going downhill continually that any relief will be welcomed. So far meds haven't helped so I feel this is my last hope of something having real benefit to me. I hope I will have some positive news to report to all you guys next time! Lol Helen Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted August 17, 2006 Report Share Posted August 17, 2006 I only took it once....I took it in the morning, but when it was time to take it at noon, I had felt awful and didn't take it again. Should I have waited and gave it more of a chance? For me, that one time I took it I felt worse? Probably just me, but was wondering. Amber Quote Link to comment Share on other sites More sharing options...
helen.t Posted August 24, 2006 Author Report Share Posted August 24, 2006 Hi Folks. Thats me been on Midodrine for a week now. I am not quite sure how much benefit Im getting from it as it seems to have increased my lightheadedness but helped a bit with the collapsing/dying feeling that I get when sitting upright or standing. My eyesight is a bit more blurry as well. I really want to persevere with the drug as it took much hassle for me to get it and I am in such misery with my symptoms, that even a little help would be most welcome. The thing is, my GP who is monitoring me on it doesn't have any experience of it and she has told me to stop taking it if I feel any tachy or chest pain. The problem is, I have all these symptoms constantly anyway, so how are you supposed to know if it is a side effect of the drug?? I hope I am making sense but I would be grateful if any of you have advice on how long I should persevere. Also, I am more dizzy also when the dose is wearing off and at the start of the next. I have been monitoring my BP and it seems ok, quite low in fact when lying down. I am putting off saying anything to the doctor as I want to give it a fair chance. Do you think this is wise??Thankyou for your interest and I hope you guys are all coping!! lol Helen Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted August 25, 2006 Report Share Posted August 25, 2006 Hi,What dose of Midodrine are you on??? Maybe it is too high for you? I am on 10mg 3 to 4 times a day. It helps but I still do have periods where I get the dizziness @ times, but not as much as I did before.Jacquie Quote Link to comment Share on other sites More sharing options...
helen.t Posted August 27, 2006 Author Report Share Posted August 27, 2006 Hi,What dose of Midodrine are you on??? Maybe it is too high for you? I am on 10mg 3 to 4 times a day. It helps but I still do have periods where I get the dizziness @ times, but not as much as I did before.JacquieHi Jacquie, Thanks for your reply. I'm on the start dose at 2.5mg 3xdaily. I'm finding that I have to rest when the dose is wearing off and for the first 20mins of next dose. It seems to be helping me endure the really bad pain and stress that I have when sitting up and standing but the dizziness/imbalance is as bad and worse in between doses. I can endure it ok but I can't physically do much as movement increases the dizziness also. In what ways does the Midodrine help you and do you feel the effect wearing off before your due your next dose?? I am waiting to get further tests and scans of my neck/head as the Neuro I saw recently thinks I may have an illness (which I cant remember the name of!!) but which involves blocked arteries. I dont know if anybody in the forum would know what this might be??Anyway, Im glad that so far Ive had no major adverse reaction and I feel a little bit of benefit from the Mido Look forward to hearing from you soon. Helen Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted August 27, 2006 Report Share Posted August 27, 2006 2.5 is a very, very low dose. My average dose used to be between 5 and 12.5 mg per 4 hours of upright time.Nina Quote Link to comment Share on other sites More sharing options...
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