L4UR3N Posted June 6, 2012 Report Share Posted June 6, 2012 After the recent research article was published on the use of DDAVP in POTS, I am wondering if anyone has any personal experience with taking this? If so, was it helpful? Any side effects that were intolerable? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 7, 2012 Report Share Posted June 7, 2012 There are a few. Firewatcher for a start, another that does a blog. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted June 7, 2012 Report Share Posted June 7, 2012 I've been on it since January of 2008. It is tricky at first, especially if you are a large volume drinker since you have to ONLY drink when you are thirsty. You need to be monitored closely at first to make sure that you are keeping your electrolytes in balance...if you don't you can end up in the ER in a matter of hours. It totally regulates my HR and BP during orthostasis.It does NOTHING for the tremor or sympathetic overdrive. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 7, 2012 Report Share Posted June 7, 2012 Firewatcher, is your tremor constant? Quote Link to comment Share on other sites More sharing options...
Birdlady Posted June 7, 2012 Report Share Posted June 7, 2012 Yes. It didn't help me, but I'm not your typical POTSy with hypovolemia symptoms. As firewatcher says, you absolutely must be monitored. If you drink a lot of water now, you cannot do that when on DDAVP. You will send yourself to the ER and it can be fatal. This isn't a medication you can just take and do whatever you want with fluid intake. I found the balance absolutely annoying. Since I didn't get any benefits from it with the high potential risk of low sodium, I dont take it anymore. Funny enough I was on DDAVP for my first TTT and I still had a 170 HR. Clearly not doing a darn thing! Anyone who goes on it, should look up the symptoms of low sodium so they know the warning signs! Quote Link to comment Share on other sites More sharing options...
firewatcher Posted June 7, 2012 Report Share Posted June 7, 2012 Sue1234- My tremor is orthostatic and a recent thing compared to most of my POTS symptoms. I used to have very steady hands, but now it is only controlled with Inderal (Propranolol.)I totally agree with Dana: dDAVP is NOT a drug to take lightly. If it is appropriate for you, it will make a world of difference. If not, it can kill you! (Just like any other drug.) Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 8, 2012 Report Share Posted June 8, 2012 Im currently finding florinef helps with the orthostatic issues but not the sympatho stuff. But betas tend to make me dizzy. Typically... Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted June 8, 2012 Author Report Share Posted June 8, 2012 I am wondering what a beta blocker combined with DDAVP would do... I am dizzy on beta blockers too, although I assume the root cause is from decreasing the heart rate without correcting the blood volume issue. Rama have you tried a beta blocker with your florinef? Quote Link to comment Share on other sites More sharing options...
issie Posted June 8, 2012 Report Share Posted June 8, 2012 Im currently finding florinef helps with the orthostatic issues but not the sympatho stuff. But betas tend to make me dizzy. Typically...Try clonidine - really helps with the sympathetic stuff . . . a whole lot. Only, as you know, anything that calms down the sympathetic system will increase fatigue. But, it's so worth not having all those surges and anxieties.Issie Quote Link to comment Share on other sites More sharing options...
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