rondo Posted March 16, 2023 Report Share Posted March 16, 2023 Thanks. Will do! Interesting about the PVCS for sure. Those were what finally drove me to the cardiologist, who seemed genuinely puzzled that I was having such difficulty with them. He did also consider me anxious and hypertensive when I had never had those issues before. I do get nervous with new providers because I am afraid they won't take me seriously. Kind of a self fulfilling prophecy! 1 hour ago, Horizons1 said: Your symptoms are almost 100% the same as mine and also seemed triggered by covid. Let us know how your tests go! Quote Link to comment Share on other sites More sharing options...
Stitches Posted March 18, 2023 Report Share Posted March 18, 2023 This forum is so helpful for me. I have been to several physicians and experienced so much of what is being posted. I am still looking for a physician that can help me. Where I live there are no specialist listed and to get a referral to a clinic in another state is difficult. This site has been such a great help for me. With all the doctors I have been to I get a diagnosis of undifferentiated autonomia. They won’t order the tilt table test as I have shown to drop just by the sit to stand BP. Most of what I have learned has been online. Quote Link to comment Share on other sites More sharing options...
rondo Posted August 19, 2023 Report Share Posted August 19, 2023 Well here is a follow up in case anyone is interested. OI symptoms escalating slowly despite hydration, salt, compression wear and "taking it easy " as advised by my neurologist. (Those measures do help a little) Brain fog, lightheadedness and visual disturbances when upright definitely worse. July 6, they did an extended TTT with transcranial Doppler because they suspected OCHOS as the 10 min TTT back in April was normal. This time I did meet criteria for delayed OH and neurally mediated syncope. 6 weeks later we still don't have CBFV results. They started me on Midodrine 2.5 mg 1-3 x daily along with continued volume loading etc. Also they are going to do skin biopsies and other tests to look for neurodegerative disease and amyloidosis given my age. (I just turned 65) The effect of the Midodrine was quite surprising. I didn't realize how bad I'd been feeling. I call them my Wonder Woman Pills! It seems to wear off and produce symptom rebound at 2.5 to 3 hours. At that point I need to take a rest break. The doctor said I can repeat the dose at 3 hours, which I only do if absolutely necessary because I am concerned about building a tolerance to it, and I don't really have a diagnosis yet so not sure if overdoing it could cause harm. BP has been fine; they warned me to monitor. Has anyone else had Midodrine work this way for them? And if so, did you need escalating doses over time get the same effect? Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 20, 2023 Report Share Posted August 20, 2023 @rondo I was on midodrine for NCS at the beginning of my dysautonomia journey, and I can tell you that the effects last only for a few hours because of its short half life. Personally it was not the right med for me simply because of the type of dysautonomia I have, but I would like to encourage you to talk to your doctor about the good and bad effects when you take it, so they can advise you on any dosage or schedule changes that might be helpful. If it improves your symptoms that is wonderful news! Quote Link to comment Share on other sites More sharing options...
rondo Posted August 20, 2023 Report Share Posted August 20, 2023 Thank you. To me, short duration seems like both an advantage and a disadvantage, because it is out of your system quickly, and easy to take another pill if needed. But I see a lot of people commenting that they weren't on it for long , so I wonder if that's because it didn't work, or if it worked at first, but lost its effectiveness. The other thing is, if it works well at first but requires increasing dosage over time, is that because of tolerance to the medication, or because the dysautonomia is getting worse? So many questions! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted August 20, 2023 Report Share Posted August 20, 2023 12 hours ago, rondo said: Well here is a follow up in case anyone is interested. OI symptoms escalating slowly despite hydration, salt, compression wear and "taking it easy " as advised by my neurologist. (Those measures do help a little) Brain fog, lightheadedness and visual disturbances when upright definitely worse. July 6, they did an extended TTT with transcranial Doppler because they suspected OCHOS as the 10 min TTT back in April was normal. This time I did meet criteria for delayed OH and neurally mediated syncope. 6 weeks later we still don't have CBFV results. They started me on Midodrine 2.5 mg 1-3 x daily along with continued volume loading etc. Also they are going to do skin biopsies and other tests to look for neurodegerative disease and amyloidosis given my age. (I just turned 65) The effect of the Midodrine was quite surprising. I didn't realize how bad I'd been feeling. I call them my Wonder Woman Pills! It seems to wear off and produce symptom rebound at 2.5 to 3 hours. At that point I need to take a rest break. The doctor said I can repeat the dose at 3 hours, which I only do if absolutely necessary because I am concerned about building a tolerance to it, and I don't really have a diagnosis yet so not sure if overdoing it could cause harm. BP has been fine; they warned me to monitor. Has anyone else had Midodrine work this way for them? And if so, did you need escalating doses over time get the same effect? I’m so glad it’s working for you. That’s a low dose - they started me on 10mg and I can’t tolerate that much at a time. My condition keeps getting worse, so yes, I do need more and more of it. But I can’t handle more than 2.5mg at a time, so I take it almost hourly. I avoid side effects and still get the benefits even if it’s a total pain. I really wish they had a low dose extended release, so I could take like 30mg a day but have it release very slowly. It does help me, just not enough. That’s me, not the med. I am on a lot of other stuff, too. Did you have your testing done in Boston? I did! Quote Link to comment Share on other sites More sharing options...
rondo Posted August 20, 2023 Report Share Posted August 20, 2023 Thanks for the feedback. It seems many people need to come up with some variation of dosing that works for them. My testing has all been done at Stanford. They seem to have a pretty dedicated group of specialists there. It took a long time, but now my case seems to have piqued their interest, so I think I am finally getting somewhere. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted August 21, 2023 Report Share Posted August 21, 2023 18 hours ago, rondo said: Thanks for the feedback. It seems many people need to come up with some variation of dosing that works for them. My testing has all been done at Stanford. They seem to have a pretty dedicated group of specialists there. It took a long time, but now my case seems to have piqued their interest, so I think I am finally getting somewhere. That’s great, I'm glad there’s another place doing this testing now. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.