HopeSprings Posted February 8, 2012 Report Share Posted February 8, 2012 Sounds promising. Let us know how it goes. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted February 8, 2012 Report Share Posted February 8, 2012 Sorry - to clarify: My doc sent me out mestonin a month ago to try and it was so so. I am now trialling midodrine alone. First day it did very little, second day it did a fair bit, third day less side effects so Im kinda thinking its ok now. The eventual aim is for me to be on both mestonin and midodrine from what i understand.Good luck with the Mestinon. When they added Mestinon with me, I was ok on the twice/day dose (but some worsening nausea, bit of cramping, loose stools). I was to use a Mestinon in between if I felt the symptoms leading to near syncope as it kicks in within 15 min (per cardiac specialist--which I thought a little odd since if I start to feel pre-syncopal, it hits me quicker than 15 min, yet it might help me to move forward after 15 minutes with an activity) but that extra dose would have me doubled over with cramps and nausea not knowing which end I was going to chuck things. They had to take me off of it after being on it only 2-3 mos. The longer I was on it, the worse the episodes (nausea/cramping, etc. got). Quote Link to comment Share on other sites More sharing options...
goldicedance1 Posted February 8, 2012 Report Share Posted February 8, 2012 Midodrine does make my head feel itchy, gives the chills, etc. Never take it at night unless you know you are going to be upright for at least 4 hours.For those of you who said you come off of Mestinon abruptly--have you tried the slow release (I forgot what that is called). I take that at night at bedtime, per Dr. Grubb. That seems to work for me. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 8, 2012 Author Report Share Posted February 8, 2012 I hear good things about the slow release. Awesome tip thanks.My third afternoon on midodrine was intense. I felty super geared up and couldnt keep still. I had a glass of coke and the combo made me climb the walls... mmm...dont know what to make of it. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted February 9, 2012 Report Share Posted February 9, 2012 Quick confession- cant explain it at ALL because I'm always cold, all the time, and really hate being cold, but for some strange, odd reason I like the chills,cold, goosebumps feeling I get from Midodrine. If I'm not mobile, I cuddle up with a blanket and heating pad and it's kind of cozy to me. I'm sure you all think I've totally lost it, but for whatever reason, that side effect is pretty okay with me... But I have to say it jumped quite a bit this week going from 10mg 3x a day to 15mg 3x a day- side effects I mean and talk is to move to 20mg 3x a day in a month. Anyone take 20 mg 3x daily?Jen Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 9, 2012 Author Report Share Posted February 9, 2012 I dont like the cold but the goose bumps feel nice actually. Quote Link to comment Share on other sites More sharing options...
Wendy C. Posted February 9, 2012 Report Share Posted February 9, 2012 I am also on Midodrine for the first time for the past 12 days. I am only taking 1/4 of a 5mg pill, twice per day. The first 3 days, while only taking it one time in the morning, I felt great. I could really feel a difference in my lower legs, less pooling I assume. The 4th day it didn't seem to help at all, but the next 2 days it did. I have no idea why. The doc and I decided to try taking a second dose and it seems to help. I've noticed it is better for me to wait about 2 hours each morning before taking my first dose so I don't feel so wired. The other side effects for me are that it is much easier to stand, but harder to kneel or squat on the floor in the mornings, more frequent urination (didn't think that was possible-just drinking more liquids to compensate) and very cold hands for a few minutes off and on throughout the day. Running my hands under hot water gets rid of it for awhile. Since none of those things are very bad, I will keep on using it. It makes showering, drying my hair, laundry and other things easier to do-Yay! Quote Link to comment Share on other sites More sharing options...
goldicedance1 Posted February 9, 2012 Report Share Posted February 9, 2012 10 mg x 4 times a day. I guess it depends what you're blood pressure runs without it. I have the unusual type of POTS where I run high blood pressures. That made it hard to diagnose.My personal feeling--goosebumps, scalp tingling, chills--those are all very common side effects of midodrine. Believe it or not, I was in the clinical tirals of Proamatine many years ago. Again, my personal feeling--you put up with those things, if it gives you the ability to function. It enabled me to continue to function and lead a professional life.I used to tell my colleagues at work--if you see me scratching my head, it is not because my hair is dirty, nor is it because I have lice, it is because of the medicine I am taking.Elfie raises a good point..the "crash" that you may feel at the end of the day is probably the result of your return to your usual POTSY self. The good thing about Midodrine is that it is extremely short lasting. My doctor tells me that once you get used to taking it you can tweak your dosage. You may feel you need more in the am if that is the point at which your symptoms are worse. For me, generally, the mornings were the worse and as the day wore on and my body became more "fluid loaded" I began to feel better and later in the evenings worse again and tired as well. Listen to your body with midodrine. I must be the unusual bird but I am willing to put up with some strange side effects if it enables be to function. If I get no benefit in terms of being able to be upright, then that's a different story. Goosebumps, itchy scalp, chills, anxious feeling..heck that's nothing.Crampy feeling..hey, I can live with that.V8 is another good way to start the day--has plenty of sodium.A good cup of caffeine-laden coffee helps too.Some of tips that kept me going until I retired.I did have flare-ups, for sure. But I kept working until I developed breast cancer and being eligible to retire, I thought enough is enough.Retirement did help since I can take rests. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 9, 2012 Report Share Posted February 9, 2012 It is interesting, Rama, that you noticed a correlation between success on mestinon as well as midodrine. I wasn't able to take either med. They cause worse high BP and chest pain, and the midodrine worsened my pernio/raynaud's. Also, I know the midodrine only lasts a few hours in our bodies, but I'd have hyperadrenergic side effects for a good 24 hours after taking just a 2.5mg dose. I can't tolerate any stimulants, caffeine included. I often feel fabulous after I try a bit of coffee or a small dose of midodrine for the first hour after taking it (really awake), but the chest pain, fatigue, nausea and palpitations that follow aren't worth it. Quote Link to comment Share on other sites More sharing options...
issie Posted February 9, 2012 Report Share Posted February 9, 2012 Thankful, my experience with midodrine was very similiar - one of the worst emotional roller coaster rides I've been on. Don't know why it affected me that way.Issie Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 9, 2012 Report Share Posted February 9, 2012 I feel ya, Issie! I did feel emotionally "on edge" while I'm taking midodrine too, but thankfully nothing like you described. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 9, 2012 Author Report Share Posted February 9, 2012 I felt physically on edge and it seemed to last longer than the actual dose. My second dose was supposed to wear off at 6.30 yet at 10.30 that night my body was buzzing and tense. Quote Link to comment Share on other sites More sharing options...
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