autonomicreg Posted October 26, 2019 Report Share Posted October 26, 2019 New to the forum, hello everyone! I was officially diagnosed with dysautonomia due to "low blood volume and inappropriate norepinephrine response" about a month ago by a wonderful cardiologist. Before seeing him, I was taking Florinef for about 5 months. It actually worked very well for me. I went from being unable to walk to eventually going out dancing at clubs 2 weeks ago, in those 5 months. However, my cardiologist recently switched me to midodrine, as he stated that Florinef can have negative effects on bone density and other areas over time (which I have looked up and confirmed). So I agreed to switch. It has not been a good experience the last few days so far. Yes, it "works". But it only works for 3 - 4 hours at a time. You're supposed to take it 3 times a day, so that's 9 - 12 hours of semi relief from symptoms and being able to stand. What about the other 6 - 8 hours during the day that I'm awake? Am I just supposed to suffer through symptoms daily at peaks of highs and lows between dosages? And what about in the middle of the night when the medication has completely worn off, and I'm suffering from tachycardia, sob and anxiety? And every morning I have to wait an hour after I take my first dose to get out of bed? I never had these issues with Florinef, as it lasts quite a long time in your system. I would just take it once each morning. And I could wake up the following morning and get right out of bed before even needing to take my next dose. But with midodrine, it's like you're only getting a sporadic 9 hours of relief during the day. Has anyone else experienced or is experiencing these issues with midodrine? I know some people swear by this drug. But I don't see how this is even sustainable with such a short half life...especially for people that are symptomatic even when sitting or laying down. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted October 26, 2019 Report Share Posted October 26, 2019 I've been on florinef for 15 years. I think some doctors overreact. My bone density scans are within range for my age group... the low side of normal. Curious about other people. I'm on another med for something else that people panic about, but my doctors said it was reformulated and it isn't an issue anymore. This seems to be common. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted October 26, 2019 Report Share Posted October 26, 2019 I didn't have your luck with Florinef (more side effects than helpful effects for me), but have been on midodrine for years. I'm on a lot of other stuff with it. Nighttime is one of my worst problems, too. My BP is so low that I bet I could safely take midodrine before laying down, but I won't. What I do is take 2.5mg every 90 minutes when I need to. That dose gives me no side effects and I can keep a fairly steady level.... I am allowed to take up to 60mg a day but I wouldn't. The side effects from taking 10mg at a time are too much for me. Its too bad there isn't a sustained release 8-12 hour version. You may need to talk to your doctor about something else to take at night or possibly something like licorice root to take the place of Florinef. That has been the best answer for me, including a beta blocker at bedtime. I am suspected to have low blood volume as well. Good luck! Quote Link to comment Share on other sites More sharing options...
CarolS Posted October 26, 2019 Report Share Posted October 26, 2019 Licorice has very similar actions to florinef but without the negative side effects. A tsp pure ground licorice root dissolved in a cup of milk or plant milk every morning along with a little (1/8tsp, or so) salt has worked really well for my daughter. Not good if you have high bp but otherwise it might be worth a try if approved by your doctor? Quote Link to comment Share on other sites More sharing options...
Lily Posted October 28, 2019 Report Share Posted October 28, 2019 I would tell all this to your doctor at your next appointment, or even call and leave a message about it today. You made a reasoned decision to try Midodrine, and it doesn't work nearly as well as Florinef, and you want to go back to F. Since it works so well for you, perhaps increased attention to weightlifting and intake of calcium, and vitamins D and K would be a reasonable alternate to not taking it. My mom managed to reverse osteopenia by eating lots and lots of dairy products, so surely we younger folks can, too! Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted October 28, 2019 Report Share Posted October 28, 2019 I agree with Lily. I get a bone density scan every two years to make sure nothing bad is going on. They monitor me, but let me stay on the med. If things start to go wrong with my bones, then they would reassess. Quote Link to comment Share on other sites More sharing options...
yogini Posted October 28, 2019 Report Share Posted October 28, 2019 On 10/25/2019 at 10:43 PM, autonomicreg said: New to the forum, hello everyone! I was officially diagnosed with dysautonomia due to "low blood volume and inappropriate norepinephrine response" about a month ago by a wonderful cardiologist. Before seeing him, I was taking Florinef for about 5 months. It actually worked very well for me. I went from being unable to walk to eventually going out dancing at clubs 2 weeks ago, in those 5 months. However, my cardiologist recently switched me to midodrine, as he stated that Florinef can have negative effects on bone density and other areas over time (which I have looked up and confirmed). So I agreed to switch. It has not been a good experience the last few days so far. Yes, it "works". But it only works for 3 - 4 hours at a time. You're supposed to take it 3 times a day, so that's 9 - 12 hours of semi relief from symptoms and being able to stand. What about the other 6 - 8 hours during the day that I'm awake? Am I just supposed to suffer through symptoms daily at peaks of highs and lows between dosages? And what about in the middle of the night when the medication has completely worn off, and I'm suffering from tachycardia, sob and anxiety? And every morning I have to wait an hour after I take my first dose to get out of bed? I never had these issues with Florinef, as it lasts quite a long time in your system. I would just take it once each morning. And I could wake up the following morning and get right out of bed before even needing to take my next dose. But with midodrine, it's like you're only getting a sporadic 9 hours of relief during the day. Has anyone else experienced or is experiencing these issues with midodrine? I know some people swear by this drug. But I don't see how this is even sustainable with such a short half life...especially for people that are symptomatic even when sitting or laying down. Finding the right treatment for dysautonomia involves a lot of trial and error. Most treatments only work for a small subset of people. While midodrine definitely works very well for a subset of dysautonomia patients what works for someone else might not be right for your body . If you saw improvement florinef without the drawback of florinef that you mention, would it make sense to go back on florinef? Quote Link to comment Share on other sites More sharing options...
fotofem Posted October 30, 2019 Report Share Posted October 30, 2019 On 10/25/2019 at 7:43 PM, autonomicreg said: New to the forum, hello everyone! I was officially diagnosed with dysautonomia due to "low blood volume and inappropriate norepinephrine response" about a month ago by a wonderful cardiologist. Before seeing him, I was taking Florinef for about 5 months. It actually worked very well for me. I went from being unable to walk to eventually going out dancing at clubs 2 weeks ago, in those 5 months. However, my cardiologist recently switched me to midodrine, as he stated that Florinef can have negative effects on bone density and other areas over time (which I have looked up and confirmed). So I agreed to switch. It has not been a good experience the last few days so far. Yes, it "works". But it only works for 3 - 4 hours at a time. You're supposed to take it 3 times a day, so that's 9 - 12 hours of semi relief from symptoms and being able to stand. What about the other 6 - 8 hours during the day that I'm awake? Am I just supposed to suffer through symptoms daily at peaks of highs and lows between dosages? And what about in the middle of the night when the medication has completely worn off, and I'm suffering from tachycardia, sob and anxiety? And every morning I have to wait an hour after I take my first dose to get out of bed? I never had these issues with Florinef, as it lasts quite a long time in your system. I would just take it once each morning. And I could wake up the following morning and get right out of bed before even needing to take my next dose. But with midodrine, it's like you're only getting a sporadic 9 hours of relief during the day. Has anyone else experienced or is experiencing these issues with midodrine? I know some people swear by this drug. But I don't see how this is even sustainable with such a short half life...especially for people that are symptomatic even when sitting or laying down. Quote Link to comment Share on other sites More sharing options...
fotofem Posted October 30, 2019 Report Share Posted October 30, 2019 (edited) I am definitely having those issues with Midodrine! I took it to mean that my BP was falling like a rock but suddenly I started to wonder if I have a huge tolerance problem. I've increased my use of Fludrocortisone, no satisfaction yet. It is disturbing that my cardiology docs say Shut up and take your medicine when I ask What's my diagnosis? What's wrong with the data I'm showing you? And disturbing to be told these are the only 2 meds available even if you get an answer as to the cause from a Dysautonomia specialist. "The treatment will still be the same." -->For those of you who have seen such a specialist, is this really the only treatment they advise? My next doc [at Stanford] has March 2020 as his first new patient appointment, and I don't know how I can make it to there. What else should I be doing? My low BP problem started abruptly suddenly when I had a (single lifetime) kidney infection. I went from chronic "low normal" to needing Midodrine 2.5 and testing with a cuff during the day. It has continued to head towards the 60's/xx and I might have had a long period of unconsciousness without Midodrine. But now I am frightened by Fludrocortisone, seems to be a wild card but I need something to put a barrier, like a basement below which my body won't go. I take Lyrica and Doxepin, and I'm going to try to cut back. Edited November 6, 2019 by fotofem additional info Quote Link to comment Share on other sites More sharing options...
yogini Posted October 31, 2019 Report Share Posted October 31, 2019 1 hour ago, fotofem said: I am definitely having those issues with Midodrine! I took it to mean that my BP was falling like a rock but suddenly I started to wonder if I have a huge tolerance problem. I've increased my use of Fludrocortisone, no satisfaction yet. It is disturbing that my cardiology docs say Shut up and take your medicine when I ask What's my diagnosis? What's wrong with the data I'm showing you? And disturbing to be told these are the only 2 meds available even if you get an answer as to the cause from a Dysautonomia specialist. "The treatment will still be the same." -->For those of you who have seen such a specialist, is this really the only treatment they advise? My next doc [at Stanford] has March 2020 as his first new patient appointment, and I don't know how I can make it to there. What else should I be doing? Hi, there are many medicines and other treatments and lots of information on the Dinet website which you can print out and bring to your doctor. There is also a list of doctors that have experience in treating dysautonomia. If you post about your symptoms and diagnosis on the forum in a separate post, people can also share their ideas on what might help you. Florinef can take several weeks to take effect. But if your blood pressure is low, have you tried compression hose? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted October 31, 2019 Report Share Posted October 31, 2019 It is incredibly disturbing not to have a diagnosis and to have meds thrown at you in hopes that they might help. It's better than not being allowed to try therapies that could work, but it's still very hard to swallow. I'm on just about every possible therapy for dysautonomia and low BP... I don't know if I'm that refractory, or all the doctors are on the wrong track. They don't know what my issue is, but the meds should still be helping more than they are, and my problems keep creeping so that I'm consistently, slowly getting worse over time. I'm grateful for the small benefit I get from my treatments, of course. You are not alone! Quote Link to comment Share on other sites More sharing options...
isa5 Posted November 2, 2019 Report Share Posted November 2, 2019 I take midodrine 10mg 5x/day (every three hours)--while the tests that led to FDA approval tested the 3x/daily dose, my cardiologist tells me most POTS doctors think 60mg/day is the max reasonable dose. Another cardiologist at a national center I just consulted with said the same thing. Something to consider--if cardio is really committed to no Florinef, then maybe a closer midodrine dose would be an option. Quote Link to comment Share on other sites More sharing options...
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