Do NOT go off your meds w/out telling doc

[ggreg]

Folks, this is a BEWARE post.  Do NOT go off your meds out of nowhere.

See, I take hydrocortisone, and at my suggestion, my doc and I agreed I would very slowly go off the hydro and see if my own adrenals might kick in.  Well, I went off the doc's list he put on a paper to follow, and about three weeks in, my memory was gone and I was put into the hospital.  ALL SUMMER I don't recall what happened!  I don't know where I was.  I live in the mtns of NC, hundreds of miles from the beach, and I thought I had been to the beach.  At one point, I thought I was in dog training school.  Another time, husband was called to come get me, and while he was waiting in the hallway, I lost it and threw a chair and raised hell, where SECURITY had to be called, and hey, I don't recall that either!

When I finally got home, I was saddened.  You see, after a variety of psych groups in the hospital (and not at the beach!), I was FINALLY put back on hydrocortisone, and then I was released from hospital and spent weeks in a community home rehab situation, with a couple hundred patients, nurses and docs and visitors and meals and sleeping in a nice building, and as the hydrocortisone built up in my system, my spirits lifted, I began to recall day-to-day things, my parents visited me nearly every day, which in the beginning I was asleep a lot, and later Lord knows what I talked about, but I was at least able to communicate somewhat normally.  I knew where I was.  And when I was finally released and husband got me home, I nearly cried in relief, a whole summer gone, and to where?  I don't know.  Well, here's what I wanted to tell you.  Husband said my bathroom's condition was something else.  I had a look and I'm telling you, a three-year-old couldn't have done a better job of messing that bathroom up than I had.  I don't recall it, of course, but toilet paper was everywhere, my pull-up diapers, a filthy toilet with I don't know what in it, stacks of clothes... Husband explained to me that when I was picked up by the EMT people, I was wearing:  A diaper and a skinny-string-topped T-shirt.  No shoes, no pants, and it was all I could do to put that charming outfit together.  Good grief.

Now, I'm being somewhat amusing because I can laugh now.  But I DO remember the very heavy feeling of not knowing where I was, dream-walking I guess, not recalling one bit about the security being called thing, losing a summer with zero memory except for the bits I've mentioned here... SOOOOO, I wanted to tell you folks out there with Adrenal Insufficiency, this is a somewhat rare and very, very serious health problem.  The drug many take, hydrocortisone, is mentioned by some experienced nurses as a "miracle drug." so apparently having something to help with this health issue is major.  I mean, try to remember, if it goes untreated, you can go into a coma and DIE.  This almost happened to me twice the year before they figured it out and all that summer stuff happened.  The two visits to hospital year before, I recall nothing of those days, went into the hospital in a semi-coma state, is how I felt, and no one knew what was wrong until my second hospital visit.  I guess IV's and critical care helped me get through the first visit.  I now know what delusions are.  Saw a dead man in a little cardboard box.  SCARY!

So, my message should be loud and clear to you:  If you are seen by an endocrinologist or even a regular doc who decided to test your adrenals, and they put you on medicine (there are several types), then STAY on that drug until hell freezes over.  You can always talk to your doc or your team nurses if you're having a problem with it, and they can perhaps arrange for you to try another medicine that is less bothersome.  Me, I have to take extra tranquilizers because the hydro makes me jumpy  (originally for panic disorder from a car wreck), and I have to double my antidepressant because this med can make you lose all hope (also car wreck), and lastly had to increase one of my pain meds (spine fracture from wreck) because my bones hurt so bad.  Those are some of the side effects of the drug... diff people have diff ones.  

Yup, after my wild summer experience, no way will I ever go without my hydrocortisone.  It's a life drug for me, and I'm getting a medical bracelet with that at the top of the list of stuff I'm to take.  And I'm sharing this sometimes personal stuff because YOU who are newly diagnosed or are sick of hydrocortisone or any other drug, will act responsibly and treat your adrenal problem with great seriousness.  I mean, think about this as a type of cancer.  You will do whatever it takes to keep it from killing you.  And that is how it is for adrenal insufficiency and especially the meds you take for it.  Oh, and my bloodwork tests for cortisol in the beginning always showed it BELOW the bottom number of normal.  And I DO think it was going down steadily for a number of years, since more and more I didn't feel like doing anything.

But I'm a happy camper now, no problems at all, best I've felt in years!  And I ain't messing with going off my hydrocortisone, no sir-reeee!!!  You, too, do the same!  Gail

[ggreg]

You're right, Rumpled.  Actually, the winter before that year, I was hospitalized twice, and first time I was in a semi-coma, because husband finished fooling with the computer, and when he came into the living room, I was sleeping on his recliner (I never do that) and I had peed on everything, plus he could not wake me up!  So, he called the EMT, they had to come get me out of the chair and onto the hospital.  I have very little recollection of a few weeks before I went in, and NONE of the week or so before going to hospital, and still NONE of being in the hospital.  I don't even remember coming out.  I had to ask husband what happened with my birthday and Xmas, and right now I still don't remember because when he told me, I was still in that zero memory period.  They had not figured out my endocrine system was screwed.  So, within another month, I went back into the hospital.  Someone gave me a drug, I don't recall what it was, might have been hydrocortisone for all I know, and two weeks in, I "woke" up, altho I thought I was in another city 200 miles away, I thought Al Pacino was filming a movie down the hall and he came and saw me and I hollered out his name in surprise and he just laughed, that sort of stuff kept dragging along behind me, until about two months after I got home, I felt well enough to go see my doc, and he sent me to an endocrinologist, which is when I first started my hydrocortisone.  Figured you'd take an interest in the idea that I actually DID almost die in the winter of 2013-14, and then last summer was very scary too.  Gail

[rumpled]

Yeah. If you need it, you need it.. You are actually lucky you did not die. Salt is a helper for most of us as well...