Forgive My Ignorance

[lieze]

Yes I keep having these flashbacks.......because I'm still trying to work it out in my head what is wrong with me.

Is it physical? Is it psychological?

Well what I'm figuring out so far is two incidents one of my first where my heart did not feel right. I had gotten up out of bed quickly and went to the potty. It felt like my heart was in a pattern of beating four times and skipping it was unnerving. It has not done that since but I think it was as my ER diagnosis stated palpitations and anxiety. I think maybe I was only feeling the first 4 beats as palpitations and that it triggered anxiety and what happened after was it scared me into a panic attack. When the ambulance came I was fine I only showed up as mild tachycardia. There were no skipped beats on the telemetry. So at that point I imagined I converted while waiting. Maybe I was never in that pattern to begin with.

Also anything like gas or low blood sugar also triggers me and I think perhaps triggers anxiety. The pressure of the gas gives me palpitations and a strange sensation. Next I get anxiety and the bad feelings that come next I think are more related to my anxiety. I start to tell myself that something is wrong and start to imagine it is going to get worse and even that I am going to die right now.

I think I do need to reverse the self talk to I'm okay.

I never really had a problem with these things before and they could very well be POTS associated or POTS symptoms but I think I need to get over this fear that I'm going to die every single day of my life. I think the anxiety is what takes me there and not what is actually happening with my body.

When and if the anxiety gets bad enough then I start in with the adrenaline surges etc etc and it all goes down hill from there.

If anybody can help me with this I would appreciate it. It is affecting my mental outlook in a very negative way.

I am afraid to do anything. Afraid to eat etc. I try to avoid episodes at all costs and I don't even know guys that I am really that sick. I need help.

[skiberthoud]

What does your doctor say? What have you done to try to help yourself? Have you seen a psychologist or tried meds? You clearly need someone who can help you. It's not ok that you live with that kind of fear and anxiety day in and day out. It's not fair to you or the rest of your family - you should be enjoying your life, not fearing your death. I'm really sorry for where you are at right now - I hope you are able to find some help soon. Remember, you need to do this for yourself - no one else can. Take care, Lieze.

[Sarah4444]

Hi Lieze - This summer when my symptoms were very severe I felt anxious and afraid as well. I don't think it's "just" psychological, instead I think it is part of the physical processes going on. So far I have a POTS diagnosis as well an a connective tissue disorder, but I suspect mast cell issues are involved for me as well. When you read about anaphalactic episodes they often mention feelings of fear and doom accompanying the other symptoms. It makes sense, because these episodes can be really dangerous, so our bodies probably have an emotional way of making sure we are paying attention. Since starting some meds for mast cell disorder I think I am starting to do a bit better - I am taking the antihistamines Mack's Mom recommends, but have noticed the most help from oral sodium cromoglycate, which I dissolve in water before I eat. I have no allergies that I know of, but have been having a lot of trouble with reactions to eating since things got bad.

The anxiety is hard, because even if it comes from what your body is going through, it is compounded by that feeling of having to do a bunch of things that feel impossible when you are so unwell. Staring to make some sense of this, getting some relief from symptoms, and having lots of help so I can take some time off to recover and not have to force myself to do things even when I can tell it makes me sicker, all seem to be helping me a bit. I hope things turn around for you soon.