Viv@clem.com.au

LDops Update: I got into a mess after the 'double blind' part of the trial. Couldn't seem to get back on the med. After stopping everything for a few days because of severe headaches I began very slowly with 100mgs. Having been on no medication for a few days I really was able to see the difference. Off meds and I was unable to cook a meal without sitting down every few minutes and I felt lousy all the time, most of you can relate to that. Because of the way my body seems to reject medication I decided to go very slowly with the LDops and have just been on the 100mgs for a few weeks, my body has taken it well and I feel okay when I am just sitting which as many of you know is in itself huge. Because of having surgery for another issue I will leave the LDops at the 100mgs level for the moment, I will have to increase it because I am still unable to walk far or do very much on the 100mgs, but just feeling okay when I sit at the computer or read a book is a relief for me. So I would like to be encouraging about Droxidopa, like many things it needs to be worked out for each individual and I think once it is released for general use there will be more flexibility for that, but I am finding it a help. Have a good day

I've been taking part in the Melbourne trial since May and i am still not sure it is going to work out for me, but want to try and persist. I have been diagnosed as Dysautonomia with OH, not POTS. Severe headaches and fatigue is a problem. Florinef caused the headaches to worsen, DHE helped a little but I needed large doses orally plus a daily self-injection. My doctor really felt that Droxidopa would be the one to put me back on my feet and get me back into life as OH is my main symptom. It certainly does increase the bp but it seems to increase the headache problem on the higher doses and I am still limited in activity despite the higher BP which is confusing. How have other people found Droxidopa?

Hi, I'm new to this forum but would love to hear from others who are taking part in the Droxidopa trials. I have been diagnosed as having Dysautonomia, not POTS. Orthostatic hypotension is a major problem as well as fatigue and headaches etc. I was unable to take Fllorinef because of the headaches. Was on DHE oral and injectable for months which helped a little but not enough. My doctor thought that the LDops would be just the thing for me and would basically restore me to be able to participate in life again and he was very excited about it which gave me hope. I have been taking part in the Droxidopa trial in Melbourne since May of this year, and it has not been quite as straight forward as I had hoped. How are other people finding it?