Sushi Posted September 17, 2021 Report Share Posted September 17, 2021 On 9/15/2021 at 11:13 AM, cmep37 said: What sort of tests did you have? I had a full complement of autonomic testing except for sweating as they didn’t have that equipment. I don’t have POTS but rather neurally mediated hypotension. @Rexieposted the relevant information. I don’t have any symptoms of ADHD so it was prescribed off-label my my autonomic specialist. I took a low dose (took me about a month to titrate up to the lowest dose as it can give a lot of side-effects if you jump right in.) I had no problem with lying down as for me the half life was short and I took it twice a day. Half an hour after a dose I could be upright and walk normally but I doubt if it would work for the majority of POTS patients as it increases norepinephrine in the synapses. Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted September 27, 2021 Report Share Posted September 27, 2021 @CallieAndToby22 Glad you are getting help. My dysautonomia doctor retired and I need a new one. I would like to try UAB. Who did you use? Did you just call and make an appointment? Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted October 30, 2021 Author Report Share Posted October 30, 2021 On 9/27/2021 at 4:19 PM, KiminOrlando said: @CallieAndToby22 Glad you are getting help. My dysautonomia doctor retired and I need a new one. I would like to try UAB. Who did you use? Did you just call and make an appointment? I haven't even seen a doctor appointments were way out. You can get in quick for the testing but I haven't seen anyone and I'm wondering if it's worth the trip at this point, I'm so sick. Quote Link to comment Share on other sites More sharing options...
Jessica Posted October 30, 2021 Report Share Posted October 30, 2021 Callie&Toby - do you mind sharing the dysautonomia specialist you saw in Jacksonville? I am looking for one in the area. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted October 30, 2021 Author Report Share Posted October 30, 2021 36 minutes ago, Jessica said: Callie&Toby - do you mind sharing the dysautonomia specialist you saw in Jacksonville? I am looking for one in the area. Sure. I've been seeing a cardiologist named Dr. Robert Luke and he's nice and mostly knows about POTS. So far we've only tried midrodine. He did do a 24 hour halter monitor which had never been done. I found a wellness center near my house that is run by a NP and does all sorts of infusions including saline but it's always booked. I guess people are really desperate for certain things that aren't readily available... Wish I could be of more help. Quote Link to comment Share on other sites More sharing options...
Jessica Posted October 30, 2021 Report Share Posted October 30, 2021 Great, thank you for the info! Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted October 30, 2021 Author Report Share Posted October 30, 2021 On 9/27/2021 at 4:19 PM, KiminOrlando said: @CallieAndToby22 Glad you are getting help. My dysautonomia doctor retired and I need a new one. I would like to try UAB. Who did you use? Did you just call and make an appointment? I self referred but you may get in sooner with a doctor's referral. The neurologists who do neuromuscular are the ones also treating dysautonomia, if you call they can give you a list of those neuromuscular neurologists or it's on their website. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Jessica Posted October 31, 2021 Report Share Posted October 31, 2021 Ok, perfect! I have a list of physicians and I’m planning to go through and see who I can get in with the soonest. Thanks again. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted November 8, 2021 Author Report Share Posted November 8, 2021 On 10/30/2021 at 8:04 PM, Jessica said: Ok, perfect! I have a list of physicians and I’m planning to go through and see who I can get in with the soonest. Thanks again. I'm still searching as well. I was too sick to go to UAB and my current doctors don't use things like mestinon, etc. I'm having trouble with constant adrenaline and I can't sleep or rest. I'd be interested in seeing your list and I think in general many patients are having trouble finding doctors that are extremely knowledgeable in autonomic dysfunction. Quote Link to comment Share on other sites More sharing options...
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