I've been taking midodrine since 2003. I started with a long, rambling history of how I came to learn about my dysautonomia before I realized that I should start with answering your questions ("executive summary" so to speak, LOL!) and then provide background later.
Of course, he wants me to increase fluid/salt intake and the med is to help raise my blood pressure. I've read about the risk of Midodrine increasing BP while laying down. What other side effects should I watch for? I don't take other meds, but are there interactions with any supplements?
The main side effect from midodrine that I've noticed is a feeling of my hair standing on end (goose bumps). I get the feeling mostly on my head but sometimes on on my arms. That side effect has greatly diminished over the years (or maybe I've just gotten used to it). The only other side effect I've had is an occasional increased urgency to urinate. It happens mostly if I've been sitting in the recliner resting for several hours and then I get up to do something around the house. Just as soon as I stand up I realize that I must go use the bathroom before doing anything else. So, for me, those have been quite minor side effects (I know that I'm fortunate that it has worked well for me).
I take some supplements (mostly vitamins and minerals, also evening primrose oil) but I have not read about or noticed any interactions between supplements and midodrine.
When I first started to take midodrine I monitored my blood pressure pretty carefully but I've never had a problem with even slightly high blood pressure. Even now, so many years later, I can go to the doctor for a mid-morning appointment, after I've taken midodrine, fludrocortisone, two salt tablets and a cup of coffee and even with all that in my system my BP is normal, generally about 100-110/65.
I do make sure that I take my final dose at least 4 hours before I lie down to go to sleep. And if I'm very sick with a virus or flu of some kind, and I'm actually in bed lying down flat, then I'll skip it. But other than that I'm not very worried since I don't seem to have any tendency toward high blood pressure. Whether you are at risk of BP going too high probably depends on your family history and other medical issues that you may have.
If you are a drug like Midodrine, are you on it forever?
I don't have any idea but my guess it that the answer is yes. My understanding of this drug is that it is a vasoconstrictor. It treats the symptom of low blood pressure by helping the blood vessels constrict more. But it is not a cure so if you stop taking it then, unless you have eliminated whatever the underlying cause was for the drop in blood pressure, then the symptoms will come back.
Okay, now for some background.
I had my first positive tilt table test in 1995 and was diagnosed with NMH (Neurally Mediated Hypotension, aka Vasodepressor Syncope, Vasovagal Syncope, Neurocardiogenic Syncope, etc.). I did not have POTS (at least, not at the time). On the tilt table I passed out after about 20 minutes with no isoproterenol (a drug that they sometimes inject in phase 2 or phase 3 of the tilt table test if there is no abnormal reaction after a certain amount of time).
Shortly after this first tilt table test I started trying to treat the problem with a combiation of fludrocortisone (Florinef), salt tablets (5-6 per day, Thermotabs or the equivalent) and increased water intake (2.5 - 3 liters daily). I got reasonably good results for a while. But over the years the the treatment became less effective (not sure whether I got worse, fludrocortisone effects started to wear off, or what).
In 2003, while fighting with the evil disability insurance people (anyone who has fought to get LTD benefits under ERISA laws in the USA will know what I mean), I had another tilt table test. Exact same results except this time it took 30 minutes instead of 20 minutes.
After this second tilt table test the cardiologist recommended adding midodrine (ProAmatine) and reducing, but not completely eliminating, the fludrocortisone. The other change my primary care doctor made, which I think has been quite helpful, was to add a prescription time released version of potassium (e.g., K-Dur or Clor-Kon). I was taking over the counter potassium before, and having my electrolytes measured yearly (fludrocortisone can deplete the body of potassium), but I think this works better.
One last comment, probably unrelated to your midodrine questions, is that I may have POTS now. A few months ago I wanted to measure my standing blood pressure the first thing in the morning
before taking my first dose of midodrine. So I did this almost every day (a few days I was just too wiped out) for about three weeks. My blood pressure monitor measures heart rate as well as blood pressure. My blood pressure was all over the map but what really surprised me was that my heart rate was consistently fairly high just from that 1-2 minutes of standing still to wait for the blood pressure machine to finish. My heart rate ranged from 113 to 150. I guess I have gotten used to this high heart rate, too, because I would never have guessed it was that high.
My body
really does not like standing still. I still remember how the technicians on that first tilt table test had to tell me to stop moving my feet. I was fidgeting without even realizing it. And after all these years the number one treatment for me is to avoid those things which cause problems (no standing, avoid heat, and limit sitting upright as much as possible - sit with legs elevated, either crossed legs or in a recliner). I have chairs all over the house - bar stool in the kitchen, chair in the bathoom, and even a seat in the shower. And for me, air conditioning is a necessity, not a luxury.
I hope this is helpful information. If I missed something, or you want to ask a specific question, feel free. It may take me a while to get back to it (e.g., this took me maybe 40-45 minutes to think about and type in) but I will answer.
Good luck with treatment options. This can be very difficult to treat. I do better on midodrine than without it but I am not back to normal by any stretch of the imagination.
