dancer65 Posted March 29, 2016 Report Share Posted March 29, 2016 (edited) So was advised to watch supine BP, I was suprised to see it sitting about 85/48 -95/52 hr 59 ish I am on 1 x2.5 Three times a day with the possibility of it being increased in the near future. During the day BP seems to be fluctuating when I have taken about 3times a day, but not that low although I almost fainted in the supermarket ( on the floor not able to speak or see you know the drill ! ) however this is not inusual for me but was hoping midodrine would help alleviate this problem hate these scenes !! I have only been on midodrine for a week so I know it's early days , just wondered if others experienced low supine BP and not really sure if I should let them know this now or in the two weeks I was advised to update them , feeling pretty yuk and sooo tired today Edited March 29, 2016 by dancer65 Posted to soon Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted March 29, 2016 Report Share Posted March 29, 2016 Hi Sara! Like your dr. mentioned, mido can cause supine hypertension, so I'm not so sure why your having low BP with it. In another post you had talked about going off the florinef and switching to mido, my only thoughts are maybe your body is adjusting to that? Since Florinef makes your body hold onto Salt, do you think you maybe you have to play around with the amount of sodium intake throughout the day? That always makes a huge difference in how I'm feeling. Sorry you aren't feeling well -- gotta be hard to teach dancing feeling so dizzy and w/ low #'s! Hang in there! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted March 29, 2016 Author Report Share Posted March 29, 2016 Hi Sarah um not thought about the salt you may have a point there I have lost 5 kilo this week which I presume was fluid retention from the florinef I am going to the bathroom every half hour! I do drink salt water every morning and add loads of Salt to my food so I will try to add some more see if it helps thanks . tonight the sweats and that surging feeling throughout my body is unrelenting will hang in there as best as I can ? excuse any bad grammar really brain fogged and difficulty speaking ! Fortunately I am on the last week of Easter break so got another week to get my brain functioning before back teaching Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 29, 2016 Report Share Posted March 29, 2016 Hi! I tried midodrine when I was having chronically low bp and low pulse pressures. It did not increase my bp at all. I also didn't have any adverse effects from it either. I just think we weren't getting at what was causing my issues. But, if those sitting numbers are low for you, I would call the doc. I also agree with Sarah that maybe your body doesn't appreciate being off the florinef. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted April 3, 2016 Author Report Share Posted April 3, 2016 Thanks to both of you for your replies, been a difficult week not be able to leave the house however seen a small improvement today and was able to do a few chores . I agree think my body didn't like bring off florinef so quickly seems to have found a better equalibrium today all week been taking on more salt and although I always drank about 2 litres I am at about 3, the increase in salt has made that easier I did e mail the syncope unit but they are on holiday until tomorrow hopefully they will reply Quote Link to comment Share on other sites More sharing options...
TaraMascara Posted April 6, 2016 Report Share Posted April 6, 2016 I'm sorry that you are feeling unwell. I know you are a week into midodrine now. It took a good 7-10 days before my midodrine fully kicked in. Has your doctor considered putting you on iv fluids on your extremely low bp days? Quote Link to comment Share on other sites More sharing options...
dancer65 Posted April 6, 2016 Author Report Share Posted April 6, 2016 Hi Tara thank you for your reply. No they don't offer fluids where I live the UK the way I was feeling last week I wish they did ! I spoke to syncope unit they have increased my midrodine as my low bp was causing an increase in symptons and they weren't happy with that. Day two of increased dose defiantly feeling more alert and less pre syncope episodes hope this improvement will continue ! The nurse was really helpful, asked me loads of questions of what was going on and gave me some very constructive advise. Going to make the most of pottering around at home with loads of rest breaks Quote Link to comment Share on other sites More sharing options...
yogini Posted April 9, 2016 Report Share Posted April 9, 2016 When are you measuring your BP? If after sleeping the numbers you report may not be unusual - hypotension. BP generally drops during sleep. If you just started midodrine and it is not increasing your BP enough, maybe you need to talk to your dr about adjusting the dose? Also, it might not be the right medicine for you. The challenge with POTS is that many of us have more normal BP when sitting or lying down. Midodrine increases your BP in all positions - so maybe your Dr was concerned about the midodrine making your BP too high when you were sitting and lying down. Quote Link to comment Share on other sites More sharing options...
Amalia01 Posted April 11, 2016 Report Share Posted April 11, 2016 Just a question. Can a patient take both Midodrine and florinef? Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 11, 2016 Report Share Posted April 11, 2016 I was on florinef when I trialed Midodrine. Quote Link to comment Share on other sites More sharing options...
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