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-   -   never sleep through the night - need cortisone (https://www.healthboards.com/boards/addisons-disease/667445-never-sleep-through-night-need-cortisone.html)

luvthesun 01-31-2009 08:41 PM

never sleep through the night - need cortisone
 
Hi there- this posting is long overdue as I'm having a VERY difficult time managing my meds, moreover, my life. I was diagnosed w/ Addison's 3 years ago, and probably lived w/ extreme adrenal insuff. for a few years before that. I'm new to this forum and am hoping that someone out there might have some suggestions for how to get through the night without waking up in sort of adrenal crisis mode (EVERY night). I wake up every night/very early a.m and feel horrible; extreme nausea, lightheaded, fast heartbeat, and in need of cortisone, salt & food. It's making me extremely depressed because then when I do need to wake up, I am soooo wiped out. It is a battle to get to work by noon & I often am dragging myself through the day. I am 38, 5'4 and only weigh 96 lbs. This is another battle - if anyone has any ideas how to put on weight....I'd love to hear. I am very hypoglycemic and so need to eat every few hours, so my low weight certainly is NOT from lack of calories.
Currently I'm taking 25 mg of hydrocortisone divided into 3 dosed throughout the day, and then I take 1.5-2mg prednisone (equivalent to 6mg hydrocortisone) around 9p.m.... this usually carries me through until about 5a.m. I don't fall asleep until around 11:30 so getting up at 5 is not enough sleep for me, nonetheless, I wake up and have to deal w/ feeling totally screwed up... then I go back to sleep. Anyway, I don't want to babble too much, but if anyone has any ideas, suggestions, similar frustrations, etc. PLEASE drop a line.... whatever I am doing clearly is not working. Does anyone take time-released hydrocortisone or prednisone? This seems like it might be the answer. FYI - my last cortisol test showed cortisol less than 1. Obviously I'm pretty fragile.... sometimes it seems so unreal.

Thanks in advance for any advice.....

cossette2 02-01-2009 12:55 PM

Re: never sleep through the night - need cortisone
 
I may not be much help, but I can relate to a certain extent to what you're going thru. I'm not on cortisone at present, but taking adrenal glandulars. Prior to being on this supplement i would go to bed and sleep for a couple of hours then be up for a couple or so and then go back to sleep and I'd go on night after night with broken sleep. I kept a chart at the time and my sleep would average 3 to 6 hours per night and never in a row...always broken. Eating some protein would often help me get back to sleep, but not always.

Since I've been on adrenal glandular i sleep so much better, but on those nights when i have trouble sleeping i take a half-gravol which helps me. Another thing which often helps is eating a little protein like peanut butter or cheese on a cracker and that helps as well.

Having said all that, I'm wondering if, based on your post, you need more cortisol. A cortisol of 1 sounds low to me.

downen 02-01-2009 06:12 PM

Re: never sleep through the night - need cortisone
 
Hi there. I'm sorry you're feeling so poorly. I was diagnosed with Addison's a year ago, and I am also trying to get my meds balanced. I do think I'm fairing a bit better, though. My experience has always been that if I took my hydrocortisone too late, that's what kept me awake. I also need Fludrocortisone to keep me feeling well. As a matter of fact, I've found that the dosage I seem to need is nothing like the textbook protocol: Upon rising, I take .88 Synthroid (I'm hypothyroid, too), .1 mg Fludorcortisone, and 10 mg Hydrocortisone. THAT'S IT. That gets me through the day, and I've begun sleeping through the night, which I haven't done in years. Now everybody's different, and I'm not telling you to try what I'm doing, but I think you should listen to your body, which is clearly telling you that what you are doing is NOT working! I very much question why you are taking both Prednisone and Hydrocortisone, too. Seems like overkill. And it seems like you should be on Fludrocortisone, as well. Perhaps you need a second opinion? I hope you find the answers you're looking for. Take care.

cloud2 02-04-2009 04:57 AM

Re: never sleep through the night - need cortisone
 
Pretty much the same with me, with hypoadrenia, hypothyroid and still having trouble sleeping through the night, despite being minimally-managed with meds. Drop right off to sleep and sleep soundly for about 5 hours, then fitfully starting early to mid-morning. I'm taking cortisol morning plus a touch at noon, thyroid morning only, and have replaced fludrocortisone with licorice root. I'm intrigued about the adrenal glandular... Cossette2, what time of day do you take what kind of adrenal glandular? I'm seeing my MD next week and could discuss it as an option with her.

cossette2 02-04-2009 11:58 PM

Re: never sleep through the night - need cortisone
 
[QUOTE=cloud2;3873575]Pretty much the same with me, with hypoadrenia, hypothyroid and still having trouble sleeping through the night, despite being minimally-managed with meds. Drop right off to sleep and sleep soundly for about 5 hours, then fitfully starting early to mid-morning. I'm taking cortisol morning plus a touch at noon, thyroid morning only, and have replaced fludrocortisone with licorice root. I'm intrigued about the adrenal glandular... Cossette2, what time of day do you take what kind of adrenal glandular? I'm seeing my MD next week and could discuss it as an option with her.[/QUOTE]

Hi Cloud2,
It's a Canadian brand (made in Alberta, Canada) OTC called Adrenal and it's from the porcine adrenal gland. You can buy ovine adrenal glandular too which is from New Zealand, but it is more expensive. The porcine has worked out well for me. I would imagine you can find similar glandulars in the US.

Each capsule is 250 mg. I began taking them in Oct. 2005 after my naturopathic doc said I had weakened adrenals. I was not able to function at that time for the most part....pretty bad shape. Anyway, I started on one per day with food (at breakfast) and have gradually increased it. The bottle says take one or two, but recently i've increased it from 3 to 4 per day based on how i was feeling. I have tried weaning them twice over the years, but i feeling horrible. :eek:I can't seem to find a doc to prescribe cortef as the naturopathic doc is not an MD and the other docs don't think i have an adrenal prob :(. So in the meantime I'm ever so thankful for this supplement as i'd be a total mess without it.

Oh, btw, right now i take 2 at breakfast, 1 at lunch and 1 at supper.

Ironically, i'm writing this message at 3 am and i've been waking up around this time for about a week now. I'm guessing something will need to be tweeked a bit to get back on track with the sleep again. At least it's no where near as bad as it was when i had no glandular at all. That was pretty unbearable.


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