Regression

[Godsgal]

Hello forum family.....I'm feeling down today.

I had been doing pretty well for a couple months. Light cooking, light housecleaning, all done sitting of course. Not really driving or walking around much. I still use a wheelchair in public.

Every since Saturday I have been having episodes. Saturday and Sunday it was extreme sudden hot with feelings like I'm gonna pass out. Yesterday my live in nanny was cooking with cayenne pepper and I started getting burning in my throat, eyes, 130's hr, feeling faint. Today I am so nauseated I can't get out of bed. And I feel hot all over again, especially my face.

I just don't get it. I'm so thankful for how far I have come. I just want to know why the sudden setbacks. What did I do wrong? I was cheating for a week on my histamine free diet for my testing and then the weather turned hot down here in south florida and I'm not functioning as well. I did take a coated aspirin last night and I'm wondering if the dye in it caused me a problem. I also ate applesauce which I'm not sure....may have histamines b/c it's cooked. I don't know.

I know I have talked to several about the MCAD meds. I started taking a claritin for this several days ago and also Pepcid this morning. I'm on a beta blocker which obviously isn't good if I have MCAD but my cardio wants more testing done first to prove I have it.

Thanks for listening to the rant.

Jared

[juliegee]

Hi Jared-

A few more thoughts...your cardio needs to talk to your Mayo docs. Or, if that's not possible, you need to show your high histamine test results from Mayo to your cardio. You have the symptoms of MCAD, you have laboratory testing that confirms MCAD, and you are responding well to your MCAD med regimen. What more does he need???

I'm sorry you are feeling so badly. I suspect you could benefit from losing the BB's, and adding a stronger H-1 at night until you stabilize. I went through a period where I had episodes every weekend too. Only thing I could think of, is that weekends are slightly more stressful as we have more freedom of choice about schedule, etc. Even though it's good stress, it's different and our bodies whack out. Sorry

Hugs-

Julie

[ACB]

I'm sorry to hear about the decline you've been having. It can be so rough to go from being somewhat functional to losing what you had. The ups and downs of POTS are really difficult.

I'll be thinking about you and sending good thoughts your way.

[Sarah4444]

This happens to me too, and I drive myself nuts trying to figure out why. While I can take meds, control my diet, etc. there are factors to this that are beyond my control. I have to keep remembering that the relapses pass and that I'll be feeling better again before too long. It can get very discouraging - seems like 3 steps forward and 2.9 steps back, but at least overall it seems like it's going in the right direction. Hang in there.