Hi all - I feel that I want to delve more into the mood swings that go with CAH and what I think is  the result of  low cortisol - I would like to start a discussion on this.

This last week I was under a lot of stress due to my class having to plan a Mass for the school - and I had to play the piano for the Mass - well I ended up with a yeast infection from too many carbs and the stress. Thursday night I was in a state - nothing was right - I felt bad though I had taken my usual Dex of .375 that day. like the world was ending and how could I possibly make it. Then I noticed that I was just so up and down - I could see in my face that I was washed out looking - no color in my face and everything irritated me. So I made it through Friday - Friday evening I drove about 150 miles  to Portland to see a friend and Saturday we went hiking. My friend noticed my moods were up and down - we hiked 9 1/2 miles (far further than I should have gone) and by the time I was 1/2 way there I was worried about my health. My friend kept stopping to see if I was alright and I really wasn’t. I stopped and took more steroids several times - actually going to 1.0 of Dex which is the most I’ve taken in a while. I did make it back - and by the time all the Dex kicked in and I got back to the truck and sat a while I felt happy again and ok. Interesting though how on Sunday I ended up taking more than usual just because of how much I had taken on Saturday - .375 wasn’t even close to enough for just a normal day. So I took about .5 - then Monday - same thing - about .5 and the same today. I just wish to God that we had something like a glucometer to check cortisol. I never know how much extra to take and probably take too much sometimes and definitely too little others. Anyway - my moods have been affected since last week. When my cortisol kicks in I’m ok - and happy - but when it’s low I’m yawning, I"m having trouble keeping my eyes open, my face feels drawn, I have a headache, and no energy - also things irritate me far too much.

The mood swings stuff is for real. It’s not made up - it can’t be wished away, etc. I have to watch my temper at times because I loose contol when cortisol is too low. I’ll occasionally cry and will lash out - because I feel so terrible. Lately  (well - for a long time actually) I fight with dizziness in the morning (after taking steroids) - I really hate it - I’ve kinda learned to live with it - but it’s awful not to be able to think clearly - I mix up words occasionally (the kids point that out to me) and frankly CAH is really crappy to live with at times (actually quite often) - just having a normal life where you didn’t have to always think of your cortisol would be nice. To go on a hike and be normal - tired - but not worried about a crisis and making sure you have enough food, etc with you for small meals all the time. Not having to pace myself so much would be nice too.

So - I’d like to hear from others - parents, adults, etc who deal with this. This is not just emotions - it’s linked to cortisol - I’d bet my life on it.

 

Susan A.