Faintinggoat Posted March 31, 2014 Report Share Posted March 31, 2014 For those of you that this applies to: What do most people do if both Florinef and Midodrine failed? I was on the Florinef for a while, and started at .1. This dose was fine, and I did notice some positive things, but it really wasn't at all significant of a response. So we increased to .2 then .3 a week later. I started noticing very minute appetite changes on the .2, but when I got to the .3, I was having very bad reactions to it. I could not eat at all and when i would force myself to eat, I would be full very quickly. Shortly thereafter, I was not able to eat at all without getting sick. So we came back down to .1 in a tapper, but I was still having a lot of issues with eating so we came off of it all together. After that we tried the midodrine. I noticed no positive effects from the midodrine, and had just about every possible side effect that you could get, including extreme pain from it. So we came off of that immediately. Now we are at a place where we aren't really sure what to try next and are waiting to hear from my cardiologist. I only see my primary anymore (unless something is seriously wrong), which I prefer because the bouncing from doctor to doctor is very hard on me. I was just wondering if anyone else had major issues with those meds and what they tried next? I am already on a great beta blocker that I have had a lot of success from, but there is still room for major improvements in my life and functionality. Thanks! Fainting Goat Quote Link to comment Share on other sites More sharing options...
Appleblossoms Posted March 31, 2014 Report Share Posted March 31, 2014 I failed Florinef and midodrine also. Other than side effects I got no help from them. I take mestinon and it helps me immensely. Quote Link to comment Share on other sites More sharing options...
amyksmith Posted March 31, 2014 Report Share Posted March 31, 2014 Right now my neurologist has me trying prescription (obviously) amphetamine salts. I do not recommend this at all. It feels dreadful. I'm on week 8 and I'm about ready to beg to quit. Also, it's not particularly effective. Quote Link to comment Share on other sites More sharing options...
looneymom Posted April 1, 2014 Report Share Posted April 1, 2014 My son had this problem with the Midodrine. Our cardiologist put him on Desmopressin for about 6 weeks, but his blood pressures got much worse (lower). So he put my son back on Midodrine at his normal dosage of 40mg 3 times a day. The Midodrine kicked in again and started working. So maybe his body just needed a break from Midodrine. Who knows?However, since we have found the immune issues ( Micoplasma P and neuro-brain antibodies) connection with Tyler's POTS. Tyler's blood pressues have been staying up since he has been on Bixan 500 mg 2 times daily. Instead of taking 10-12 grams of salt a day with the midodrine dosage, he is now down to taking 1-3 grams of salt per day with the midodrine. Quote Link to comment Share on other sites More sharing options...
Macca Posted April 1, 2014 Report Share Posted April 1, 2014 I didn't tolerate Florinef and had a lot of trouble tolerating Midodrine (but for some reason finally started getting positive effects from Midodrine and limited side effects after six months of off and on trying). The most useful drug for me has been Mestinon. I also find liquorice root helpful too. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted April 1, 2014 Report Share Posted April 1, 2014 My daughter is on Midodrine and Nadolol. Her blood pressure numbers are improved but she still has migraines, abdominal pain, nausea, fatigue, prostration etc. We are going to a specialist and hoping for more answers. (not hopeful).June Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted April 2, 2014 Author Report Share Posted April 2, 2014 Thank you all for your responses! Today I was told basically that my only options are: to accept things the way they are and hope that they get better over time (not likely since I am barely functional), or to accept a referral to a bigger clinic out of state since I was turfed from the clinic that diagnosed me. I was SOO frustrated to say the least. Accept that I am 24 and not functional, heck no. So I started spam calling all the cardiologists that I could find at bigger medical centers in Pennsylvania and I found a Cardiologist in my town that has expertise in treating patients with POTS. So, I figured what the heck to I have to lose, and scheduled a new patient appointment for the 18th. Quote Link to comment Share on other sites More sharing options...
corina Posted April 3, 2014 Report Share Posted April 3, 2014 Well done you! I bring my doctor articles on meds I would like to try, for him to read and discuss later. I'm glad he's open to work like that it makes us work very well together. Also I like to participate and anticipate in the treatment we choose! Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted April 3, 2014 Author Report Share Posted April 3, 2014 Corina, that's pretty much what I did with my doctor. Both the Florinef and Midodrine were suggested by me, we both did research and decided together to give them a shot. But its nice to have found someone that has had experience with POTS. Quote Link to comment Share on other sites More sharing options...
corina Posted April 3, 2014 Report Share Posted April 3, 2014 I agree! I hope this new doctor will get you on a well working treatment plan! Quote Link to comment Share on other sites More sharing options...
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