Lenna Posted January 18, 2008 Report Share Posted January 18, 2008 I wonder if anyone has experienced this. My son who has POTS started on 5 mg. of Midodrine and got a great surge of energy that lasted a few days, then petered out. When we raised the dose to 10 mg. he had another day or two of great energy. At 15 mg. he felt really sick so we started cutting back. We slowly cut all the way back to 5 mg. again, and to my amazement he felt so energetic that he pulled out the snow blower to clear off the driveway when we had a storm! Again, that energy surge lasted a few days and then trickled away. I'm thinking of taking him off Midodrine entirely for a few days and then putting him back on the 5 mg. dose for a few days to see what happens. It's okay to play with the dose like that, isn't it? (I know that's a question I should ask his doctor.) I'm wondering if he just takes Midodrine during the school week and takes a break on the weekends, will it help him get to school?Any thoughts or experiences would be appreciated. Lenna Quote Link to comment Share on other sites More sharing options...
DADofPotsSon Posted January 19, 2008 Report Share Posted January 19, 2008 My No. 2 son has NCS/POTS, he is 21 yrs old, his first problems began at age 17 1/2 and he is currently attending college as a junior. He has been on Midodrine/Proamatine for about 3 yrs, though he was initially started out on Midodrine, Dr. Grubb switched him to the non generic Proamatine. This was because the Midodrine was not providing the results Dr. Grubb was looking for, it did make a big difference. During the time when his POTS was at its worst he was taking up to 40 mg. to 45 mg. a day with midodrine. Once the POTS was stablized some what and he was switched to the Proamatine he was able to lower his daily dose to 30 mg. with the same or better results. As I recall Dr. Grubb saying some people respond differently with different brands of midodrine and some can even respond better with proamatine. Proamatine is much more expensive!As his condition is today he takes about 10 mg. to 20 mg. on an average day at college. And some days, mostly the weekends he takes less than that, especially if he is at the computer doing home work/studing (maybe playing games too) he only takes 5 mg. to 10 mg. a day. He now only needs it first thing in the morning, usually 10 mg. first then 2.5 mg 3 to 4 hrs later and 2.5 mg 3 to 4 hr after that if needed. He also keeps it at hand so if he has an immediate need he can take one or two 5 mg. as needed. He also takes 10 mg. just before he drives back to college (about a 1 hr drive), he claims it helps keep him more alert.He has tried not taking any proamatine and has had some success with this only on a weekend. Fluid and Salt loading is a must with him. He is also on Troprol XLI hope this helps you and your son, and good luck.DADofPotsSon Quote Link to comment Share on other sites More sharing options...
Lenna Posted January 19, 2008 Author Report Share Posted January 19, 2008 DadofPotsSon,Thanks for your reply about your son varying his medication dose. I don't know if my son is on a generic version of Midodrine or the Proamitine. I guess I could call the pharmacist to check. The label says Midodrine HCL 5 mg I/C Proamatine. It's probably the real stuff because it costs abour $2.50 per pill. Thank goodness for insurance! But anyway, the thing I particularly want to thank you for is your mention of the fact that your son is in college and drives back and forth to school. That is encouraging beyond words and has made my day!Lenna Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 20, 2008 Report Share Posted January 20, 2008 Hi!It sounds like you have the generic Midodrine. I too am a college student and don't have a problem with treatment traveling back and forth (an 1.5 hour drive). I tried Midodrine with no success, so I can not elaborate on the dosing. But, when I had asked if to reach the best benefit would I have to take it consistently (no skipped doses), the drs. said yes. I could not stand the tingling scalp (felt like my hair was being pulled out) and shocks down the side of my face. It would seem b/c it is making BP go up and down that going on and off of it, it MAY do more harm then good, b/c your body has to continously adjust to the BP fluctuations. I would talk to your dr. It may be that this is not the best overall med. for him, and may need to try something else.Good luck and make sure to discuss it with his dr. Quote Link to comment Share on other sites More sharing options...
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