"Hydrocortisone is Life" Babs
If you've got Addison's, the above statement is absolutely, positively no exaggeration.
In my story about Fran dying from complications of Addison's, I mentioned crisis. Erin asked this question in the comments:
So do you Addison's folks think these "stomach bugs" people get are actually bugs/viruses? Or are they triggered/originate from heading into an Addison's crisis? I've done a ton of reading about people's experiences with crisis, and "stomach bug" seems to be the most common beginning of a crisis. Just wondering if it's actually a bug, or if it's just the first symptom of the crisis.
It got me thinking about the Addison's crisis. We act as if, wham-bam-thank-you-ma'am, we go into crisis with no warning what so ever. One minute perky and happy, the next minute passed out on the floor needing an ambulance. Realistically, I think the truth is somewhere in between.
In my case, my crisis was preceded by a migraine, too much alcohol, a two week stomach ache that I ignored or thinking that herbs and positive thinking (as opposed to antibiotics) were going to cure the feeling of peeing glass that was actually a kidney infection.
In each and every case, I knew a crisis was coming and probably didn't abide by the mantra, "Hydrocortisone is Life" and worked well within the detrimental boundaries of "Steroid Guilt". All it got me was an Addison's crisis and an expensive trip to the ER. I think if I had been rational, I would have doubled or tripled my HC as recommended by my mentor Wanda on several of the above occasions, and avoided the trauma and expense of the ER.
Signs of under replacement that can lead to a crisis:
- nausea and/or vomiting
- weakness
- heavy arms and legs
- fatigue
- low blood pressure/head rushes upon standing
- salt craving
- joint and muscle pain
- headache
- craving salt
When you're not feeling well for any reason, stop being tough or worried about taking too much steroid. Double up and avoid a crisis and trip to the ER. If you can't hold down fluids, give yourself the damned shot and head to the Emergency Room!!
6 comments:
Hi Dusty,
I haven't been at your site in a very long time. Boy, am I glad I read your blog today!!! I definately have "steroid guilt." My Dr. and pharmacist are so alarmed at how much cortef I take. They are constantly telling me to cut back. At present, I'm taking 50mg each day and still feel awful all day long. But, I do feel better than when I take only 20 or 30 mg. I think I may need more than 50mg but am afraid to take any more. How will I know if I am taking too much? My heart is constantly racing. Can that be an indication? Or maybe the racing heart is from dehydration? I don't know how to determine how much cortef to take. I never feel "good." What might happen, negatively, if I took 100mg just for one day to see if I would feel better?
Debbie,
Great questions. Go to my forum www.addisonssupport.com and post your question there.
My opinion is that you've got something else going on. Do you take florinef? Are you eating enough salt? 100 mg for one day won't do anything bad. 50 mg for too long can have negative side effects. Please post on my forum, there are lots of smart, knowledgeable people with great opinions and suggestions.
:) Dusty
Dusty,
Great post, as always. In hindsight I think I could have avoided my recent ER trip (in December) by immediately doubling my steroid at the first sign of the impending flu. But....I waited too long and then doubling wasn't enough....and to the ER I went.
Good Blog. I had reason to stress dose yesterday. It all happened so fast but thankfully I do not have steroid 'fear' and had hubbie close by. It started as a 2 hour fasting blood test for lactose intolerance that the pathology lab extended into 4 hours ( for no reason). I took minimal HC to manage the 12 hour ( then 18 hour fast). I drank water above and beyond the norm. At the 3 hour point at 11 am I still felt fine - then the lactose 'bugs' hit me. Within the hour I was unravelling but thought no one would notice. I finished the test, ate, and drove home. 10mg extra dose. I felt funny at home so had more food, some coffee and a lie down. Within 15mins I was shaking from head to foot, cold ...SO cold... and unable to move... Luckily hubbie heard me and gave me 10mg more then checked and another 10mg... I slept for hours... and was a limp rag until evening...
Bottom line - don't be scared to stress dose! I hate to think what would have happened if hubbie was not home yesterday...
Great post! My crisis was sudden and fast as it was precipitated by surgery, so very little lead up. I didn't even have nausea, seemed to me like I just spontaneously started vomiting. Even as I was sick, I was just so surprised by it.
Also, have you thought about including the 'anomaly' of some people have high BP with crisis? There's you, me and a Cushing's patient now online with recorded high BP.
M
M,
If you do a search on www.addisonssupport.com forum, you will see that many of us present with high BP during crisis. Crazy, huh?
Good luck to you today!
Dusty
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