Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Does anybody have any experience (positive or negative) with taking Midodrine? This drug was advised by my CFS doctor to be my next drug of choice. I have been doing some research and it sounds a little scary. Any thoughts would be greatly appreciated. Also, thanks to all who responded to my previous post. GenXAttorney Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 > Does anybody have any experience (positive or negative) with taking > Midodrine? This drug was advised by my CFS doctor to be my next drug > of choice. I have been doing some research and it sounds a little > scary. > > Any thoughts would be greatly appreciated. Also, thanks to all who > responded to my previous post. > > GenXAttorney The side effects seemed scary to me, too. Have you tried nondrug options: compression hose, increasing blood volume by drinks with electrolytes, and lots of water? Also, exercise that strengthens the legs can help. I climb stairs and use the bounce back chair. Oh, and salt tablets. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2005 Report Share Posted July 1, 2005 , WOW! I get pretty annoyed with my condition but it's rather even if I just take it easy and lay down or rest most of the day. I can't imagine what you have to deal with on a daily basis!!! You know, I honestly wonder how much these drugs they are pushing at us are really harming us? I have a weird thing with the vision in my left eye now since I have taken ProAmatine - even though it was only for a short period of time. I had forgotten this was were it originated until I was just reviewing my records from my cardiologist. It is like there is a sheer curtain or something to the inside of my vision on my left eye. Visual field tests do not pick it up but, in my opinion, that is because they use light for the dots. It's strange but during the visual field I can see the light from the dots coming through almost like a flashlight shining into a dark room - but I can't pick up dark things and they don't do any test to detect dark dots. Makes sense in a way that I can see the lighted dots since it is like looking through a dark sheer. Now, if anyone has a machine to test your visual field that pops up black dots, let me know! It might just show this problem. ly, I don't know why they don't. For people with neurological problems (MS) who complain of having a curtain or a sheer over parts of their vision it might just show these things better than the current method. I don't have any books that open up to letters made of bright lights but I do have a lot with flat dark print. Know what I mean? Anyway, back to the meds. Do you think your symptoms have changed a lot over the past 8 years in such a way that, maybe, some of these drugs they have given you may be partially responsible? I read the side-effects of these things and I resist them so much! It really just looks to me like some of these cardiologist have no real clue what they are doing and are just lab-ratting their human patients without much concern for the long term damage they will do them. I read somewhere that there are almost no animals that they can use comparatively to study orthostatic problems due to the 2 legs vs 4 legs issue. We have about 70% of our blood volume below our heart and brain while 4 legged animals have 70% at or above heart level. Think about that. The dog gets better blood flow to its brain but you have to go to work to support it! Maybe they can think better than we ever dreamed and they have secretly enslaved the humans and put them to work for them! heehee I'm sure, at this point , you probably feel quite a bit like I do. I just want everyone to take their heart and pressure meds and ...well, I just won't go there. I want a diagnosis and then, I want to be left alone. I can't handle meds very well and I lost one organ a year ago and even though it was 'only' a lonely little gallbladder, I mourn it's loss and have no plans to see other organs join in its departure. Some people just can't do these drugs. Oh! I have a study I am going to post a link to in a minute. Look for it. There may be some elements that relate to your problems. I think it relates to some of my problems -maybe not exactly - but about the closest I've seen because I'm can go for a walk but other than that, I need to basically be reclined. Since my diastolic pressure goes up when I am upright, lower body exercise lowers that pressure - thus I can do a walk with little problem. Talk about sending wrong signals to everyone who knows you are on disability!!! And yet, my computer even sits next to my bed because I can't stay upright at a desk and I have stools in the kitchen next to the sink so I can sit through washing dishes, etc. Anyway, I'll post the study. It may not be what you go through but it's worth a look. Look over these side effects of ProAmatine. It sounds like that cardiologist was annoyed and throwing something heavy at you to get rid of you. If there is anything here that he was aware of might be a problem for you - you may want to report him to the board for so irresponsibly giving you such a high dose of medication. Did he plan for a follow up far out in the distant future or did he make it sooner given that you had never taken this medication and have so much trouble? Factor that in as well. http://www.rxlist.com/cgi/generic3/midodrine_ad.htm Angie > Angie: > I definitely understand your anger and frustration. That's how I felt yesterday after having an appt with a new cardiologist. He was arrogant, wouldn't let me say anything and hadn't reviewed my records. Yes, I did have a positive tilt table although that was 8 years ago. I have low blood pressure (most of the time, however it does " spike " frequently and is shocking)......my BP normally runs 90/60, or if I am tired, it goes down to 70's/50's, then for no reason whatsoever, it will go up to 160/100!!!! Doesn't stay there long, but it DOES happen and there is something crazy going on (and has for years, but this is new, the high BP and especially the higher diastolic readings are extremely odd). I have NMH, POTS, low blood volume. My heart rate runs very fast.....100 - 120.....most of the time, although it will come down to 90, or even 80.....then it has gone over 200!!! Thankfully that stopped once I started getting IV fluids. Even with the fluids now (4 years), because I moved, and have been overdoing with lots of stress, I started having irregular beats again....my internist did a 24 hour holter and said it was extremely irregular and referred me to this cardio. At least I'll get an echo and a cardiolite stress test. He suggested doing the one where they inject you so you don't have to " walk it " ...speeds up your heart - NO NO NO....I declined. I'll " walk it " , thanks. I can't have anything trigger my heart to race, too frightening and once it gets up there, it won't stop. > > I have been warned for years NOT to take beta blockers....BP too low and with a 24 hour holter, I'm all over the place, going from bradycardia to tachycardia (in my sleep), BP dangerously low, then up it goes. This jerk yesterday tried to get me to take Florinef....been there, done that - it makes me VERY ill and I can't function. > I tried it twice - several years apart.....BAD NEWS. He said he has NEVER heard of anyone unable to tolerate Florinef.....well, he's met one now. I nearly walked out, but I did want the testing ordered. He wrote the prescription for Midodrine at 10mg.....I came home, looked it up and found that it is prescribed as low as 2.5 and 5.0....and he's starting me out HIGH????? And three a day? I don't think so. > > That prescription was over $350.00...........even the pharmacist has a strange look on her face...asked if I had taken it previously and then suggested she just fill a week's worth and see how I do instead of spending all that money on something that may not be useful. > > I REALLY appreciate your comments. Needless to say, I'm not going to take it. I can't afford to lose ground and be tossed back in bed. At least I am quite functional, just not terribly comfortable with the dizziness and irregular heart beat - it feels like " thuds " and can be so hard it nearly knocks the wind out of me. I did find that taking magnesium helps somewhat and I make sure I get enough potassium in my diet. Another doctor to cross off my list! > > Thanks again, > > > > Message: 12 > Date: Fri, 01 Jul 2005 18:23:42 -0000 > From: " toangiem " <toangiem@y...> > Subject: Re: Midodrine/Proamatine > > , > > Have you had a tilt table test? I would NOT take this script > without having a tilt done first. Read my post above that > starts " Tilt... " > > When I am sitting still, my BP often looks low, like I need to get > the pressure up. However, without any help from any meds, I have > discovered through those tilt results that my diastolic pressure > gets pretty darned high on its own. At the end of the test, my BP > failed and I went hypotensive but that was only at the end. I was > diastolically hypERtensive prior to that. > > No one EVER caught that the original cardiologist did not actually > view my tilt when he made my diagnosis (he used a report written by > the hospitals cardiologist that consistently stated my BP 10 points > too low!), blew me off, and started pushing fluid builders, > vasoconstrictors, etc. So, for 3 years I have been trying to > appease the medical community by constantly trying to increase my BP > to suit them. Again, when I am sitting, it often looks low. > Without a careful review of these results there is no way to tell > that my pressure was actually too high when I was upright. Thus, > the source of my fatigue problem. Orthostatic diastolic > hypertension. Not just hypertension or diastolic hypertension. > Only orthostatically. What a mess. > > Midodrine/Proamatine made my heart go crazy, I had a BIG headache > and I felt like I could not breath and I will NEVER take it again. > But, again, I already had too much pressure. Make certain that is > not the problem before you agree to take it. > > Good luck, > > Angie > > > > > > > > _____________________________________________________________________ ___ > _____________________________________________________________________ ___ > > > > Quote Link to comment Share on other sites More sharing options...
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