Sarah4444 Posted August 17, 2011 Report Share Posted August 17, 2011 Hi everyone,I recently saw my POTS doctor and he recommended that I change the way I take midodrine. I currently take 10 mg every four hours and he thought I should try 15 mg twice and then 10 mg. When I tried taking 15 mg it made me feel awful - tight chest, head pain, and just really strange (seemed like worse OI). Has anyone had any luck with 15 mg doses of midodrine? Side effects seem manageable at 10 mg (although even that took a bit of adjusting to) and I wonder if taking 10 mg every 3 1/2 hours might work better than the 15 mgs all at once. He said the most I should take in day is 40 mg. He also suggested I try Mestinon, but said he had no experience using it in patients with MCAD. I would be interested to know what kinds of things people have dealt with when they first started Mestinon, so if I have any side effects I can maybe figure out if they are common ones or if they are particular to combining Mestinon with mast cell meds.Thanks in advance, and I hope everyone is having as good a day as possible. Quote Link to comment Share on other sites More sharing options...
mwise Posted August 18, 2011 Report Share Posted August 18, 2011 Hi Sarah4,I take Mestinon and Midodrine. I have had no side effects or problems taking Mestinon. I take 60mg 3xday (9am-3pm-9pm) and Midodrine 7.5mg 3xday (7am-12pm-5pm) and adjust them accordingly if I am going to be out & up late in the evening. I also will take an extra Midodrine dose sometimes especially when it was extremely hot out to help keep me upright and walking. I get the usual Midodrine side effects of itchy head, skin crawling & tingling, feeling cold-goose bumps and yes urinary frequency. The benefits of walking out way the side effects. I have noticed since it has been cooler-70s in Ohio that I am feeling better. I definitely can't tolerate the 80s. I get so much weaker and tired quicker. I feel both medications seem to wear off faster when it is hot out. I do try to hydrate more with salt products which does help. BTW-I had asked my Neurologist what would happen if I would & could build a tolerance to Midodrine? He shared that he has had patients on Midodrine 20mg 3-4xday (Total of 60mg-80mg a day). Good luck Quote Link to comment Share on other sites More sharing options...
bensman Posted August 18, 2011 Report Share Posted August 18, 2011 Hi Sarah,I am interested in the Mestinon question as well. I am still waiting for my results of the mast cell tests I had. But I saw Bev at Dr. Grubb's office yesterday and she intently listened to all of my symptoms, response to meds, chance of mast cell issues, etc. She seems to really understand the impact mast cells have on the body, and is very anxious to get my #'s from those. In the meantime, the only med she prescribed was Mestinon. She told me to take the 60 mg pill and split it into 1/4 tablets. I am to start out with 1/4 of a tablet with food in the morning, then after a few days add in 1/4 at dinner, and gradually work my way up. If I get really bad stomach issues, she said to skip a day and let my body adjust. The goal for me is 1/2 a tablet in the morning and evening. She was hoping I could work up to that by the time I see Dr. Grubb in mid-October. Of course I am freaking out about a new med with my history of meds. I had to laugh because Bev must know my type well. After she went through everything, she said, "You'll probably take a few sprinkles and put it on your oatmeal to start."I hope you find out some more answers!Have a good day,Kate Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted August 18, 2011 Author Report Share Posted August 18, 2011 Thank you both very much, that is helpful information - will let you know if anything really weird happens! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.