Dealing with fear

[RaniNightOwl]

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. 

 

[StayAtHomeMom]

I meditate. I have always been able to drop my HR by at least 10 points just by doing that. When I first got sick that was my go to. Even now I have gotten to the point that I mediate almost all the time to a point. 

Finding my answers has also helped alleviate my fear some. 

I would talk to your doctor and see if there is a medication you could try that would help your fears, or even see a therapist to help walk you through trying to not be so fearful. There are also natural supplements that work as an anti-anxiety that may help. And the natural supplements may react better for your body. 

[Pistol]

Hello @RaniNightOwl - I understand exactly what you mean, I too have the anxiety with the surges. It is a normal symptoms of fight-or-flight. I used to get them at work and my doc told me to go into a dark and quiet room and lie down or sit reclined until everything stops. Sometimes that worked and other times it would start right up again when I stood back up. I am disabled now and can lie down in bed when it happens, so it much easier now. I did talk to a friend who is a counselor and she taught me the following exercise that helps a lot: when your symptoms start sit down with your feet firmly on the ground. Close your eyes and take deep, slow breaths through your nose and out your mouth. While you are breathing imagine you are a tree and you soak up calmness through your feet from the earth ( like roots ) and it spreads through your body all the way to your fingertips. --- It sounds completely out there but it works - and I am not into this kind of thing. But between the deep-breathing, the sitting down and the concentrating on the tree and diverting your anxiety it completely calms you down by both physical and mental ways. --- I think it is a good idea to see a therapist who can teach you stress-relieving methods as well as listening to you. It is a LONG journey learning to cope with this - or any - chronic condition. --- One question: why did your cardiologist determine IST and not POTS? As far as I understand with IST the resting HR is also elevated, in POTS it goes up when you stand. Has he done orthostatic VS to differentiate between the two? 

[statesof]

Hi @RaniNightOwl I had the simialir fear related to taking new meds because neither my doctors nor me knew how they would affect my body; I've found for myself that desperation or just being irritated at my progress was the thing that made me say 'screw it' and try different meds, I also start with much lower doses of any med just so the potential 'side effects' would be less severe, and my body is really sensitive to many meds.

As far as anxiety/ fear, similar to stayathomemom I do the meditation thing, that and over time getting used to the repeat symptoms of this condition and trying to live a normal life while applying solutions to mitigate those symptoms in my everyday life. Not everything is in my control, but I do know if I do x, y or z I will always feel bad so finding a workable solution around those is where a lot of my mental time goes to. 

[RaniNightOwl]

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.   
 

17 hours ago, Pistol said:

Hello @RaniNightOwl - I understand exactly what you mean, I too have the anxiety with the surges. It is a normal symptoms of fight-or-flight. I used to get them at work and my doc told me to go into a dark and quiet room and lie down or sit reclined until everything stops. Sometimes that worked and other times it would start right up again when I stood back up. I am disabled now and can lie down in bed when it happens, so it much easier now. I did talk to a friend who is a counselor and she taught me the following exercise that helps a lot: when your symptoms start sit down with your feet firmly on the ground. Close your eyes and take deep, slow breaths through your nose and out your mouth. While you are breathing imagine you are a tree and you soak up calmness through your feet from the earth ( like roots ) and it spreads through your body all the way to your fingertips. --- It sounds completely out there but it works - and I am not into this kind of thing. But between the deep-breathing, the sitting down and the concentrating on the tree and diverting your anxiety it completely calms you down by both physical and mental ways. --- I think it is a good idea to see a therapist who can teach you stress-relieving methods as well as listening to you. It is a LONG journey learning to cope with this - or any - chronic condition. --- One question: why did your cardiologist determine IST and not POTS? As far as I understand with IST the resting HR is also elevated, in POTS it goes up when you stand. Has he done orthostatic VS to differentiate between the two? 

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.