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bustersacc11

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  1. Hello Everyone! Been sick for 5 years now. When I asked about the type of dysautonomia I have, the responses range from SNS is on the exaggerated side, to hyperadrenergic, to psuedopheochromocytoma, along with slow heart rates. Basically, high BP and low heart rates with adrenaline surge (BP/HR spikes). High NE levels upon standing. Treat the slow heart rates I had a PM placed. Demand rate at 60bpm. Did not get the results I was hoping for. Little symptom improvement. Also, I have been on Methyldopa 250mg BID for 4 years and it did control the surges and maintain normal BP’s. However, the side effects are awful and really hasn’t improved the quality of my life. Recently my cardiologist and neurologist experimented with Toprol 12.5mg QD (off Methyldopa) this past Fall to see if it would help but unfortunately it did not work and made me worse. But it kept BP regulated and no surges. I tried coming off everything this winter to see what happens. BAM! Right back to where I was 5 years ago.. Increase intensity with heart beats. Intense pounding.Adrenaline overdrive. Couldn’t sleep more than 2-3 hours per nightJittery, and shakyBP started to increase right back to where I was before Aldomet (140-150/90). Intense adrenaline surges and BP/HR spikes 170/100 & HR 90-100’s were backAt times lightheadedness more intenseBack in ED r/t hypertensive crisis and back on Methyldopa the past couple of months. Just so tired of the same symptoms everyday. Lightheadedness and dizzy sitting and standing. Tired and Fatigued.Heart pounding (not tachycardic). Intense heart beats with no relief.Poor sleep. BP spikes off and on during the night with intense chest pounding.Slow heart rate. Won’t increase appropriately with activity (little or no variability)No tolerance for activity (every time I try an exercise routine, I fail miserably). Fatigued / tiredChest pain at timesNow, I am in a bit of a quandary. Cardiologist is willing to experiment with other BP meds. However, autonomic Dr. says stay on Methyldopa and added Inderal 10-20mg PRN for the chest pounding and stressors for adrenaline surges. It is not PRN for me because I have those symptoms everyday. So, I have tried to add the Inderal the past 3 weeks off and on at 5mg QD and can barely get out of bed. Nobody believes me. The combo of both just knocks me out. Autonomic Dr said there is something to be said about the Methyldopa controlling my surges so stay on it and doesn’t know if my brain will every get used to the two meds and if my fatigue will improve. Continue with meds. Maybe its false hope or an unrealistic goal but something tells me that there is something out there that can help me I just haven't found the right combo or single drug. I am asking for those out there what medications have you tried to help suppress those adrenaline surges and high BP. I understand everyone is different, has different types, and like everyone who needs meds to treat this awful syndrome you want to feel better with minimal side effects. Any input would be appreciated!
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