ramakentesh Posted February 12, 2013 Report Share Posted February 12, 2013 This may be old news for some but I thought worth reposting:http://content.onlinejacc.org/article.aspx?articleid=1217866Peptides in Postural Orthostatic Tachycardia Syndrome: Title and subTitle BreakPlayers or Epiphenomena? Quote Link to comment Share on other sites More sharing options...
issie Posted February 12, 2013 Report Share Posted February 12, 2013 It's pretty technical - and I'm sure some would like a run down of what it means. Rama???????I find it interesting that they may be able to test whether or not a drug will work for us based on a test. That is an improvement of try this and see how it works.Also, I could have told them ----from experience, the hard way -----midodrine doesn't appear to work so well with with some of those who need to vasodilate and maybe have a hyper response. That was the absolute WORST drug I tried. Issie Quote Link to comment Share on other sites More sharing options...
anna Posted February 12, 2013 Report Share Posted February 12, 2013 Thanks Rama for the post.Yep Midodrine did not go down well with my children either Issie. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 19, 2013 Author Report Share Posted February 19, 2013 Midodrine was a freaking nightmare for me. Made me feel WORSE not better! And then made me feel super wired. Since midodrine does not cross the blood brain barrier I could not easily explain my reaction. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 19, 2013 Author Report Share Posted February 19, 2013 basically this study found increased levels of a peptide that reduces blood volume in some POTS patients. There are obvious problems with the study, such as the suggestion that a single dose of midodrine improved them for the whole day (with a half life of 3-4 hours)... Quote Link to comment Share on other sites More sharing options...
issie Posted February 19, 2013 Report Share Posted February 19, 2013 Oh . . . .I can honestly say that Rama and I were not good on it ---we both tried it at the same time. And I, for one, was not so wonderful to be around. I can't see how they say it won't cross the brain barrier cause for sure it seemed to affect me in that department. I was parinoid and couldn't quit crying. It was the WORST thing I tried. And it took a long time for me to get over it. Maybe for some of us we don't eliminate it like we should. Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 19, 2013 Author Report Share Posted February 19, 2013 It felt to me like it turned a nob in my body up full throttle and it took a few days to calm down afterwards. Some do great on it though Quote Link to comment Share on other sites More sharing options...
Relax86 Posted February 19, 2013 Report Share Posted February 19, 2013 When my BP was consistently low - waking up at 85/45 and never getting better than 102/60 (and symptomatic b/c I realize that's a normal BP for some) then Midrodine did help me significantly. I took 2.5mg at 8am and another dose at 2pm. I could feel it wearing off. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 19, 2013 Author Report Share Posted February 19, 2013 yeah it helps many people. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 20, 2013 Report Share Posted February 20, 2013 basically this study found increased levels of a peptide that reduces blood volume in some POTS patients. There are obvious problems with the study, such as the suggestion that a single dose of midodrine improved them for the whole day (with a half life of 3-4 hours)...It felt to me like it turned a nob in my body up full throttle and it took a few days to calm down afterwards. Some do great on it thoughRama- Seems like you're saying that you felt an effect that lasted several days even with the med that only had a half life of 3-4 hours. It's interesting because I wonder if, even though that's the half life, there isn't some other effect somewhere in the immune system/ chemical pathways that might lead to a longer term effect? I've been on it for 3 years and every once in awhile I try going off it to see if I can. Usually make it about 3 days and then my BP totally tanks and OI issues are a mess until I start it up again. Have been wondering myself how that can possibly be since it's got such a short half life. Interesting that you observed a similar longer term effect than the short half life should account for. Apparently the people in the study felt the same thing? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 20, 2013 Author Report Share Posted February 20, 2013 yeah maybe. Not really sure. the docs would say that any effects beyond 4 hours were in my head probably Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 20, 2013 Author Report Share Posted February 20, 2013 Buts its weird - i find that if i drink caffeine for several days the effect 'builds' on itself in a weird way. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 20, 2013 Report Share Posted February 20, 2013 Yeah, I was figuring the same thing, but my BP monitor says the effects are in my vessels as well. Have tried to be somewhat scientific in my approach to testing this with the midodrine and it seems to be consistently that 3 day mark, occasionally stretching into a 4th, before things crash. Guess that must be the limit to my psychological endurance, heh? Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 20, 2013 Report Share Posted February 20, 2013 Buts its weird - i find that if i drink caffeine for several days the effect 'builds' on itself in a weird way.Well, midodrine is a nervous system stimulant (according to my POTS neuro at Mayo), so caffeine may legitimately have a "building" effect on it. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 20, 2013 Author Report Share Posted February 20, 2013 Yeah they would combine - but in my case im talking caffeine without midodrine Quote Link to comment Share on other sites More sharing options...
angelloz Posted February 20, 2013 Report Share Posted February 20, 2013 I have the same build up issue. I am trying some things for MCAD. Sometimes the first dose works well..then by day three it begins to make me feel agitated or moody.....I am wondering if I should try a every other day approach. I have tried sticking with it to see if I can build up a tolerance...but gets ptogressivly worse.... why can't anything be easy!Angelloz Quote Link to comment Share on other sites More sharing options...
issie Posted February 20, 2013 Report Share Posted February 20, 2013 Angelloz,I found that with MCAS meds too. When I got the overload feeling, I started cutting back on things to see if lowering them would keep the good effects there without causing a crash. The first thing I cut back on was the H2 ---I only take 1/2 a pill. I also cut my GastroCrom back to only 2 times a day. I just slowly started cutting things back until I figured out what amount stayed more steady and level in my body and stick with that.Issie Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 20, 2013 Report Share Posted February 20, 2013 Rama- Given Dr. Klimas' research showing that a lot of her patients aren't able to break down meds normally, (don't have the normal detox pathways) wondering what role that has to do with this "build up" effect that so many of us seem to have. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 21, 2013 Author Report Share Posted February 21, 2013 The liver of patients with orthostatic hypotension were found to be poorly functional due to reduced blood perfusion Quote Link to comment Share on other sites More sharing options...
issie Posted February 21, 2013 Report Share Posted February 21, 2013 aren't able to break down meds normally, (don't have the normal detox pathways) I tend to have higher bp's but I guess there is orthostatic issues even though the drop isn't into low blood pressures ---but, I also have liver detox pathway dysfunction on P450 pathway.Issie Quote Link to comment Share on other sites More sharing options...
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