Guest lakegirl43 Posted December 7, 2015 Report Share Posted December 7, 2015 Hi everyone. I am new here and am hoping for any thoughts/insights/recommendations for my 14 year old son. I am surprised at how the doctors here in Georgia (at least the ones we have dealt with) seem to have no experience with this. Of course, as momma bear my frustration grows for my son.Here are my son's symptoms:- Wakes up in morning and heart rate is high (for him) - 90-105 upon waking.- Passes out within 30 minutes of waking and is out for about 1 min.- Comes to with a very bad headache and dizziness (can't walk unassisted). This lasts until 3-5PM. When his headache is gone the dizziness is too.We have had many tests done (blood, EKG, MRI, etc). Doctors diagnosed at one point with POTS and put him on Florinef. It worked great for about 5 weeks and he had no episodes but then they began again. Doubled florinef- it didn't help. We did the tilt table test and based on that, the cardio said he didn't think it was POTS and basically told us not to come back. Thankfully neuro is willing to work with us. Neuro actually called my son an anomaly and doesn't know what is causing it but is willing to keep trying different meds. He started Propranolol. After 5 days it started working and we had 1 week of no syncope. But now it's started again. They upped his Propranolol to 120 MG (extended release). Today is day 5 but again when I woke him this AM he passed out within 5 minutes and now has headache and dizziness.His BP is fine. It's not been an issue. Only HR. When it is high we know he will go down. And I realize his "high" heart rate is not all that high but that is how we know if he is going to pass out. Does this sound familiar to anyone? My husband and I are happy that the neuro is willing to try some things rather than dismissing us but part of me worries that we aren't getting to the underlying issue and are just taking stabs in the dark with various medications. If the Propranolol doesn't work the neuro's next thought is to try Mitrodrine. Should I find a new doctor with more experience with this type of thing? From what I am reading of other posts, I need to work on getting paper copies of all the tests he has had done so far.Thank you for your help. I can't believe how much seems to be unknown about POTS/Dysautonomia etc. Quote Link to comment Share on other sites More sharing options...
Nicola Posted December 7, 2015 Report Share Posted December 7, 2015 Not terribly experienced with symptoms this severe, but Midodrine is not a risky medication and has helped me greatly so I would not worry about trying that. Be sure to check the physician lists on various Dysautonomia/POTS sites to see if there is a better option by you and check them out. I would encourage you to try new doctors for second opinions at least. Sorry I can't help much more, good luck to you and your son! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 7, 2015 Report Share Posted December 7, 2015 Welcome to the forum. It sounds that seeing a cardio specialist would be best if this neurologist is not a specialist in dysautonomia. Have you looked at our physicians list to see if someone is nearby?http://www.dinet.org/index.php/physician-listI saw two cardiologists who completely dismissed me, and was undiagnosed and untreated until I saw a specialist (an electrophysiologist with specialty in dysautonomia). Quote Link to comment Share on other sites More sharing options...
statesof Posted December 7, 2015 Report Share Posted December 7, 2015 It may be good to seek out an autonomic specialist who may have more experience with cases similar to your son's. Does he wear compression stockings at all? They may not solve the problem of passing out but it might be worth a try to see if they are helpful. Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 8, 2015 Report Share Posted December 8, 2015 I encourage you to get copies of all the labs and diagnostics. Specifically, a copy of the raw data of your son's tilt test as well as the report. The raw data will allow another doctor, preferably an autonomic specialist, to form their own opinion about the results.The doc that wrote the report on my ttt totally missed the POTS dx but I asked my cardiologist to review the raw data and she diagnosed the POTS immediately. Quote Link to comment Share on other sites More sharing options...
Guest lakegirl43 Posted December 8, 2015 Report Share Posted December 8, 2015 Thank you all. DINET recommended a doctor in Jacksonville, FL which is drivable for us. I am going to call his office today and see if I can get an appointment set up along with working to get all test results in my hands. Thank you all for your support. Sometimes you just need someone to say, yes, go get a second opinion. Quote Link to comment Share on other sites More sharing options...
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