khaarina Posted November 9, 2012 Report Share Posted November 9, 2012 My doctor diagnosed me with NMS yesterday and I will be starting Midodrine today. I am a little apprehensive about it because I have tried so many drugs that failed me. I would be very interested to hear about your experiences (both good and bad) with trying Midodrine. I am wondering about side affects, how quickly it takes affect, which symptoms improved and which didn't, etc. Quote Link to comment Share on other sites More sharing options...
diamondcut Posted November 9, 2012 Report Share Posted November 9, 2012 I am very sensitive to meds, but luckily i could tolerate Midodrine, it brings my BP up and keeps it healthy for hours. Side effects were not too bad for me, after an hour my scalp itches like crazy but i can put up with that. I no other have struggled on it though. Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 9, 2012 Report Share Posted November 9, 2012 I've been on it for nearly 3 years. It's been very helpful. Initially I had a lot of side effects but now the only one I really notice is the scalp itching an hour or two after I take it. If I take too high of a dose, it's very agitating to my nervous system, but at the "right" dose (for me) it's been great. It made a pretty substantial improvement in my symptoms within a fairly short time, although I can't remember exactly how long it took at this point. It wasn't a cure but it was certainly a good step forward on the path to getting better when I was first diagnosed and continues to be an important part of my med regimen.Good Luck! Quote Link to comment Share on other sites More sharing options...
E Soskis Posted November 9, 2012 Report Share Posted November 9, 2012 Midodrine is my friend! I have a life back because of it. It helps my vasculature not be so floppy - it raises my very low blood pressure - helps me think better - lifts the "brain fog" - and improves my overall "well-being". The only side-effect I have is the very common scalp tingling. Occasionally, my BP will get a little too high and I'll hear a "throbbing" in my ears but, that is pretty rare. Quote Link to comment Share on other sites More sharing options...
Natops Posted November 10, 2012 Report Share Posted November 10, 2012 Midodrine helped me. No side effects. Helped rid me of my dizziness. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted November 10, 2012 Report Share Posted November 10, 2012 Made me feel much better, then after some time my BP seemed to return to normal and I no longer need it. I would jump on it again if I ever experience BP lows again. Quote Link to comment Share on other sites More sharing options...
westernmass Posted November 10, 2012 Report Share Posted November 10, 2012 I was on midodrine for a few months. I liked that it gave me more energy but didn't do much for my other symptoms and I eventually got sick of the side effects (itchy scalp, crawling skin, goosebumps all over and afternoon headaches) and figured I'd rather deal with the fatigue than those. Good luck though! Quote Link to comment Share on other sites More sharing options...
khaarina Posted November 10, 2012 Author Report Share Posted November 10, 2012 Thanks for your comments. I have some interesting (and exciting) results to report from my first day on Midodrine. Within about 30 minutes of taking it, my head felt like a plasma ball--you know those glass balls with the lightning looking stuff inside that follows your finger when you touch it? Literally, the tingling followed my finger when I touched my head! It felt really bizarre but it was no big deal. In fact, I kind of liked it because it told me that the medicine was working in my system. The other side effects were a dull achiness in my chest and goosebumps all over that came and went, but all that pales in comparison to the benefit I've already noticed. First of all, my headaches disappeared. I hadn't realized how often they occurred until they were gone. Second, my hands and feet visibly shrunk (I could make a proper fist!) and I no longer felt like a big overfilled water balloon. And third, I had tons more energy and tolerance to standing and walking. I went with my husband to the grocery store and I got through the whole thing without having to find a bench and sit down. When we were finished, I wasn't lightheaded, drenched in sweat, or short of breath for the first time in a year! I'm definitely not 100% but the difference is amazing. I only wish I could take it at night too, but the doctor said I would get high blood pressure if I lay down while on it. So, I guess the next step is to figure out how to deal with this insomnia. Quote Link to comment Share on other sites More sharing options...
khaarina Posted November 10, 2012 Author Report Share Posted November 10, 2012 Oh, I forgot to mention, I also got a substantial amount of color back in my skin (especially my face) and I was able to think more clearly. Not bad for my first day on a new medicine! Quote Link to comment Share on other sites More sharing options...
arizona girl Posted November 10, 2012 Report Share Posted November 10, 2012 What great news kr!!! I'm so happy for you and pray that this continues to work well for you. Amazing what we live with and think is normal. Quote Link to comment Share on other sites More sharing options...
abbyw Posted November 10, 2012 Report Share Posted November 10, 2012 Sounds amazing! I hope things go uphill from here! Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted November 11, 2012 Report Share Posted November 11, 2012 I ADORED the positive effects of midodrine. i was completely devastated when it elevated my BP to dangerous levels and caused really bad urinary retention. My doctor made me go off it. I still think of it and wish I could feel that way again. It made me feel 'normal'. Was a beautiful beautiful thing, while it lasted!Glad you are having a good time of it! Quote Link to comment Share on other sites More sharing options...
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