RaniNightOwl

Hello again! I'm now in my fourth month with Corlanor (5 mg/2x day). For the most part it's been successful in bringing my heart rate down to 70s and 80s most of the time when I'm at rest, and keeping it reasonable (90s - 120s) when I'm being active. However, I'm still getting some adrenaline rushes and palpitations, as well as blood pressure that will suddenly spike and then immediately go down. My cardio is aware, and I've had the urine and blood tests for catecholamines and metanephrines. What I've been told is that Corlanor isn't a magic cure; it's just going to minimize symptoms but I still have IST. But the package inserts for Corlanor have all sorts of warnings about palpitations on the med, so I'm scared, which in turn is making things worse. Any reassurance would be helpful that this is par for the course. I have other health issues but dealing with this particular one is so new for me.

Hello everyone. <3 I have IST and some other issues. I'm on Corlanor which is helping a lot with the tachycardia, but I'm still getting a lot of exercise intolerance (getting overheated and having huge BP spikes) and adrenaline rushes from time to time. My cardiologist sent me for blood and 24-hour urine tests for catecholamines and metanaphrines. The blood tests came back fine, except for a low dopamine level. On the urine test, the dopamine was fine, but the epinephrine level was so low it was below the measurable parameter of the test. Anyone else ever have this? I'm thinking it might explain why the adrenaline rushes hit me so hard, but I'm at a loss to explain why. I'm going to chat with the cardio of course, but I'm curious as to whether this is a common thing for dys patients.

Hi @StayAtHomeMom, @Pistol and @statesof and thank you for your responses! It sounds as though meditation is something I will need to look into more. If it's helpful I would be so happy. And I will try the exercise you mentioned, Pistol! I'd definitely like to avoid adding any new meds to the arsenal because I already take a lot, and I know that some things dont' play well with Corlanor. I'm definitely having a hard time with it. Today I ended up calling one of my parents in tears because my heart rate randomly jumped to 150 despite the Corlanor (adrenaline surge, I'm sure), and they did their best to talk me down from the roof, but I was convinced I was dying on the spot. For the IST, my symptoms and the testing seem to fit that profile far more than POTS. I have not had the tilt-table test but I've never had rapid heartbeat or dizziness when standing. My heart rate will go up randomly and I'll get dizzy when I'm doing minimal physical activity, like brushing my teeth or sitting on the couch, and it will jump a lot when I do more than that. I see a cardio because I have a minor heart issue (very trace valve regurg that only requires an annual echo), and he's done echos and ECGs every year, plus several Holter tests and stress treadmill tests. I've also had two sleep tests where they monitored my heart overnight. The last 24-hour Holter was just under the Dx threshold with an average of 87bpm, but the cardio was also in the room when I was waiting my stress test, already hooked up to the ledes, and watched my heart rate shoot from 85 to 120 when I was calmly sitting on a gurney, doing nothing. The recent ER visit was the catalyst to go from watching it to actively treating it, though. I did have a very bad bout of Epstein-Barr four years ago that triggered a lot of health issues for me, and this seems to be one of them.

Hello, I was very relieved to find this website. I was recently diagnosed with IST, even though I'm sure I've had it for a while. I get adrenaline surges about an hour after taking meds (it doesn't seem to matter which), and last week I landed in the ER with a high HR that would not go back down. After my ER interlude my cardiologist decided to put me on ivabradine 5mg/2x day. I also have some other conditions like immune deficiency and PTSD, and receive IvIG. I am glad for diagnosis but I am having a really hard time with the fear. I am afraid when my HR goes up, and when I get adrenaline surges. I am afraid to take the meds because of possible side effects and afraid of what could happen if I don't take the meds. Every time my HR jumps up, it's terror for me. I'm aware it's not making things any better. I am trying to see if I can find a therapist who deals with people with chronic illness, but does anyone have any things that help them with dealing with the fear that comes from the HR and adrenaline jumps? I am not a spiritual person so that doesn't comfort me, and I don't have any friends nearby who care enough to stop by and check on me, so I'm on my own trying to figure out some coping skills.