andybonse Posted October 13, 2013 Report Share Posted October 13, 2013 Hello ,So my first ever treatment is on its way. 2.5mg tabs of Midodrine!!I am very excited and nervous at the same time maybe some relief from this?The past 2 weeks, I have been drinking 2.5-3l water/powerade and adding lots of salt to my drinks and food, and I have felt LOTS better laid and sat down etc..Not normal but I feel im there and almost normal!!I cant stand, well I can but I feel crap! and I feel crap after eating for a hour or so too,Now,I am going to slowly use the midodrine, like cut the 2.5mg into quaters for my first doses, since im scared of new drugs haaha.Since when I walk my hr comes down a little, I can only presume the midodrine will help and make this even more effective? especially when I get on my best dose.Whats the thoughts? Quote Link to comment Share on other sites More sharing options...
calisto_bee Posted October 13, 2013 Report Share Posted October 13, 2013 Can I just ask, how are you going about the salt thing?The hospital just told me to "apply salt liberally to my food" but I'm not a great fan and it's putting me off what little appetite I have. Are you adding salt to juice or do you buy specific drinks?Sorry to go off topic but you mentioned improvement with fluids and salt......I'm desperate for any improvement!Best of luck with the Midodrine. Quote Link to comment Share on other sites More sharing options...
andybonse Posted October 13, 2013 Author Report Share Posted October 13, 2013 I am just using table salt and adding it to food and also just adding it to my water and even my powerades lol, I dont measure it either just put it on! also crisps have like 0.5g per bag Quote Link to comment Share on other sites More sharing options...
E Soskis Posted October 13, 2013 Report Share Posted October 13, 2013 Good luck with the midodrine - I hope it works like a charm for you! I'm dependent upon plasma exchanges and have not been able to have one since the end of August due to on-going blood infections so, I feel kind of like death on a cracker right now - I'm increasing my midodrine daily in an attempt to keep upright, working, and maintaining consciousness. I don't know if such a low dose (quartering a 2.5mg tablet) will have any effect on you - sometimes, drugs in very low dosages from the normal don't have the intended result. Don't be afraid to increase your dose if you don't feel any improvement at first with the low dose. Just be aware of the side effects so you are not surprised by them - Right now, I'm taking 20mg when I get up in the morning, then 5 mg every 4 hours until about 4pm or 30 mg/day and I'll probably need more before I am able to resume plasma exchanges. I think it is a wonder drug and I couldn't make it without it - hope it really does the trick for you as well! - keep us posted....... Quote Link to comment Share on other sites More sharing options...
andybonse Posted October 13, 2013 Author Report Share Posted October 13, 2013 Thanks ,Does it lower your standing heart rate and make you feel more normal?I can stand up for hours usually but feel crap, literally rubbish with a heart rate of say 100-110, im hoping when I get up to say 5mg-10mg midodrine it will bring it down to a more normal level and feel tons better up. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted October 13, 2013 Report Share Posted October 13, 2013 Good luck Andy! I hope midodrine will help you.My experience with this drug has been brief; I was on it for only a month. Midodrine - in combination with propranolol - lowered my HR and increased my standing BP. The one thing my dr and my pharmacist forgot to mention was that I shouldn't lie down after taking it as it may increase the supine BP, so I did wake up from a nap in a bit of a hypertensive crisis (I was taking 15 mg midodrine at once though). Also, it has a short half life so whatever benefits you're getting from it are short lived, but then so are the side effects - should you experience any. As E Soskis mentioned above, 1/4 of a 2.5 mg pill is a really tiny dose, but you do what feels comfortable to you. I guess it's better to start low, see how you react to the medication and go from there. Alex Quote Link to comment Share on other sites More sharing options...
andybonse Posted October 14, 2013 Author Report Share Posted October 14, 2013 Thanks the 1/4 of 2.5 is just the first ever time, then next half a pill etc. I do it with everything lol.My main worry is sometimes my hr is 50-60 when layong or sat still, it shoots up if I stand or move my position etc so its not stuck there.Ive had all ecgs and cardiac tests etc.Im scared midodrine will lower it loads! Unless it brings it up and balances my system.Arghh lol Quote Link to comment Share on other sites More sharing options...
E Soskis Posted October 14, 2013 Report Share Posted October 14, 2013 I can't tell you if it lowers my heart rate upon standing - my resting heart rate is 20-40 so, I have a pacemaker to keep it 78-82 -When I stand or move around a bit, my heart rate actually bottoms out lower than the resting rate- midodrine does not seem to change how my pacemaker functions so, I assume it is not increasing my rate - but, it is not decreasing it either. The autonomic failure is what is messing-up my intrinsic heart rate. Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 14, 2013 Report Share Posted October 14, 2013 Hi Andy,The dosage you are on is low to start with. My suggestion is to start with the full dosage. My son had to go up to a very high dosage before he could experience the benefits. It will also help with your heart rate when you are walking and standing. My son could tell the difference when he was able to walk and stand. Hang in there. It may take a few weeks to get to the right dosage.Rachel Quote Link to comment Share on other sites More sharing options...
Chaos Posted October 14, 2013 Report Share Posted October 14, 2013 Good luck with the midodrine. I take 7.5 mg 2-3 x a day along with nadalol to keep my HR down and BP up. I didn't really think the midodrine kept the HR down much but when I tried going off it a couple months ago, I definitely found out how much it helps. While I've had some episodes of bradycardia, it's not been long lasting enough to be too worrisome. Quote Link to comment Share on other sites More sharing options...
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