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Florinef And Midodrine Failed


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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

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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.

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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.

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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.

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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!

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