lhough20 Posted December 3, 2011 Report Share Posted December 3, 2011 Hi guys,My first post! (34yrs male, UK)Hope everyone is ok?I have Ehlers Danlos Syndrome and last year (2010) was diagnosed with POTS after a tilt table and 24hr ECG.I'm now on fludrocortisone 200mcg, Voltarol 75mg and sodium chloride 1.2g twice a day.A few days ago I also started Midodrine. Currently on 2.5mg three times per day which will probably be upped to 5mg.I'm slightly furtunate in that I've never had a particularly low BP even when standing, but my pulse does rise dramatically (up to 180 sometimes).I also get the usual head rush, headaches, lethargy, pale face, etc. This is as well as the EDS stuff as well.My question is what can I expect with the 2 drugs together? is this usual?I'm already getting the skin crawling, goose bumps etc. I dont mind this though and can easily tolerate it.Thanks a lot for any help. I've read many posts before joining.Lee Quote Link to comment Share on other sites More sharing options...
Chaos Posted December 3, 2011 Report Share Posted December 3, 2011 Welcome to the forum. Glad you found us but sorry you had a need to look for help!I have used both midodrine and florinef together. We are all so different it's impossible to say what your experience will be. Personally I've found the midodrine to be helpful but didn't like the florinef. I had a really hard time handling Florinef for the first month with the side effects and then didn't feel like it was that helpful but did give it a good 8 month trial.I'm curious why they are putting you on these two meds if your BP is stable? I was put on them because my BP dropped into the 30's over 20's on 3 different TTTs. My understanding was that they were trying to keep my BP higher to help keep the HR lower. Hopefully you'll keep monitoring you BP to make sure it doesn't start going high. I was also on a beta blocker to keep my HR lower which did fine by me for several years until I had another surgery and had a whole cascade of increased symptoms. That was when they had to add the midodrine etc.Hope you can find some treatments that help you out. Good luck! Quote Link to comment Share on other sites More sharing options...
lhough20 Posted December 4, 2011 Author Report Share Posted December 4, 2011 HI thanks for the info and reply.I think I'm on the meds as my BP does drop a bit when standing but not so much that I faint. They think I have a really good cardio response so the heart rate goes up to 160-180 to conpensate for the drop, although becasue of the heart rate, the BP reading is still 110/80. This is on sodium chloride and florinef 200mcg.I do still get all the symptoms of low BP though (headache, wooshing, hearing loss, dizzy, fatigue, mild tremor, etc.) but without the actual recordable drop in bp.Weird!Lee Quote Link to comment Share on other sites More sharing options...
Chaos Posted December 5, 2011 Report Share Posted December 5, 2011 "Weird"Lol. That's what all my doctors have been saying about me forever!!! Nothing ever seems to add up like they think it should with my body. Seems to be a common theme amongst the lot of us. Quote Link to comment Share on other sites More sharing options...
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