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04/03/2010 09:37 PM

New Thread for Sleep

LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1817
Group Leader

This isn't my biggest priority at the moment, but I'm going to throw it out anyway. Some of you have already given me some suggestions, but I'm open to any and all.

Bob said: Your "schedule" is in fact your diurnal Cortisol curve...

I'm not 100% sure what that means, but I assume it means my body thinks it is nocturnal? I was always late to go to bed and get up during the summers growing up, so staying up until 2am was nothing. And even while working, I would still go on auto-pilot and do that on weekends and holidays. So I think part of it is natural.

I am taking my pred at around 10am, give or take. I am only taking it once per day, so no later doses. I tried at one point, at someone's suggestion, getting up every day for a week at 7am and taking my meds, but that didn't work. But maybe I should try that again?

Because things have seemingly changed so dramatically, I wonder if I should re-try some things and also try new things if we can think of stuff. Trey is trying to help me, but he's out of town next week, so it may be a good time to implement some things. Plus, since he's gone, I'll be sleeping in the bed, and maybe that will help things too. Living and sleeping in the same room is probably messing with me, too!

What would you do in my situation. I'm not looking for a dramatic change at this point, but I would like to gradually get this better. I'd take 12-1am in a heart-beat! That would be early enough to allow me to sleep in the bed again without worrying about waking Trey for the morning!

I am more active during daytime hours, which I think is helpful. Kind of like having the lights all on and not being quiet during the day for a new baby is what it makes me think of! LOL

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04/03/2010 10:13 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Cynthia

The diurnal cortisol curve - what peaks normally an hour after waking and drops during the day is driven/controlled by the CRH stressor hormone from the hypothalamus. It apparently knows about day and night from neural connections to eyesight etc. This is the same stressor hormone that rises for emotional and physical stress. This kicks the pituitary, which kicks the adrenals etc etc. In a roundabout kind of way HC/Pred/Dex stress dosing emulates this CRH action.

If you take Pred at all you are going to override this normal day/night action. In other words your Pred dosing is replacing the diurnal curve action. You remember me talking about no jet lag by altering my HC? Same logic. I mean you have primary so you are totally in control of your cortisol levels. Your recent mega doses will throw sleep patterns out because your body expects low cortisol levels to snooze by! Your current 10AM probably makes your body think its waking at 11AM. This is where the two dose (smaller one later) idea comes from as it hopefully does a closer emulation of a normal curve.

My suggestion? In the absence of other problems clouding the issue (and they are) you might consider slowly bringing your dose time back by maybe and hour a week. If you get fatigue issues before the end of your normal waking day consider breaking the Pred dose (say) 75% first, 25% second roughly 10 hours apart. Not sure how effective this will all be on the inflated dose size as you might still have a lot of cortisol floating around at later than normal times. Cant see the dosage time shift being an issue though.

Bob


04/03/2010 10:42 PM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1817
Group Leader

Okay, I understood that! (I'm feeling smart today. Watch out!) I like the slowly moving it back - I think that would work better than just changing it to 7am or something. That way my body has time to adjust.

I will try the full dose in the am and see how that goes, then keep in mind the splitting if I have evening problems. But right now, I wake up in the evenings. Weird.

I'm pretending I don't have the other issues for now (as related to one another), and I am addressing each issue individually. Otherwise I will go more insane than I already am.

I am considering seeing the IM doctor from the hospital in her office. She was pretty aggressive, and she told my endo to "do this, do that". He's a great doc, always open to another set of eyes, listens to the advice of other docs. My GP is a puppet to my endo. He would never call and say, "I think you should do this or that." What do you know about IM docs? Do they replace GP's, or do you still use the GP for upper resp infections and stuff, then go to the IM doc for your crazy stuff? I think as complicated as this crap has gotten, I need another really good doctor. I never posted about this IM doc, but she was evil when I first saw her, but as soon as she heard "changed medications and three days later started this decline", she was all over it. She became my biggest advocate. I generally don't like women docs, and my first impression of her was as negative as it gets, but I really ended up liking her in the end. I think she and my endo would do really well together (and she's the one he called to admit me, so they obviously have a good prior working relationship.) She was the only one who could "disconnect" from the ologist viewpoint and see the med cahnge as a possible problem, even though the textbooks say no. Any thoughts on that?

Or should I just check myself into the Clinic for Crazy People Who Are Prime Candidates for Medical Journals? Wink

Cynthia


04/03/2010 11:24 PM
kgo
kgo  
Posts: 603
Member

Sleep is such a strange thing these days. Miss Mara seems not to be able to wake early. It is 1am easter morning and I am still awaiting her to fall asleep. Maybe that extra HC is too much? I dont think so though, seems she needs it to wake but then the afternoon dose keeps her going...but only some days. Does this impending holiday at gramma's have her hormones on high? I know she makes partail of everything. Seems like not enough of anything. She used to be my early to bed early to rise girl. As soon as she was out of her crib, she would come to me in the early mornings and poke my face and say in her sweet soft little voice "its morning time". Although I was not at all ready to get up myself it was the sweetest moments of my life Smile

Now I never sleep more than 4 hours at a time. Not because I dont want to, its just something seems to always get me up or keep me up. I am so dang tired all the time. Pepsi is my best friend.

If I forget to give her the afternoon dose until say around 7pm. Should I NOT? Or is it essential that her doses stay on track daily more than the late dose? Did that make any sense?

Happy Easter to all who Love Him and Happy sunday to those who do not celebrate.

~~~~HUGS~~~~

Kim

Post edited by: kgo, at: 04/03/2010 11:27 PM


04/04/2010 12:29 AM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1817
Group Leader

I can't really answer your questions, but I can tell you this - they put me on a sleeping pill. It is not helping me fall asleep that I can tell (or if it is, God help me!), but I wake up nice. I have always been EVIL in the mornings, and I wake up smiling, and Trey is completely freaked out and considering therapy! Tongue It doesn't even matter if I only get 4 hours. And I've always required 8+. Bizarre!

Steriods completely screwed me up. I was on those dose packs I think four times from September until November, not to mention the reason for them also kept me up late. Finally I got on the pred regular dose, but by then I think it was too late. High doses, like the dose packs or the load dose I got recently, will completely throw everything off. Especially if the doc orders 90mg at 2 in the MORNING!!

I'm sorry that's all I have to offer. I would guess HC at 7pm is probably pretty late, but I'm the last person who needs to tell people about HC!!

I hope she gets straightened out. I KNOW how horrid this sleep issue is. It's 2:30am here, and I'm still quite awake. I asked Trey to wake me an hour earlier tomorrow, so I can start with Bob's advice. I'm not going to try and go an hour earlier each day or every other day, but probably an hour earlier each week. In two weeks, if it works, I'll be back to sleeping in the bed. I'm concentrating on the positive!! (At least trying to...)


04/04/2010 01:00 AM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Kim

Try to think in terms of what HC does to blood and cellular cortisol levels. As a rough kind of rule the higher the level the more likely Mara is to being awake and alert. In the absence of cortisol production from any other source, a tablet on waking does a reasonable job for the first 4-8 hours. It is however suppose to be a huge peak on waking. It really is stretching it to get a good cortisol curve on only two tablets a day. If you do though that would be roughly 9 hours after the morning pill and about 1/2 the size. This is why I use 3 doses/day 20/15/10 at waking, midday and 5:30PM. Remember though that I am a big guy and need much more of it! Despite changing countries and a timezone difference about 2 weeks ago I am pretty close to matching things. The other factor I employ is that the first dose has to be without food (for 15 minutes) and my next doses with food so that I get a smooth curve. The cortisol levels "decays" as it is used up and you dont want it to drop too low.

Remind me if Mara has Secondary or Primary... If she had secondary you may have altered things enough that her partially working morning peak isnt as high as it was. ie she no longer wakes early. This isnt necessarily bad, just needs some thinking.

A 7PM dose is a hard call to make. If you dose her you will likely shift her body clock so she'll be awake too long. If she is super fatigued though what do you do? I hate to be picky but I think you have to ensure that the dose cant be late at all. If you get "caught" a smaller/later dose might help sleeping but she might need a bigger boost the next morning. ie what you didnt give her last night you add to the next morning dose.

My suggestion is to go to three doses/day and employ some kind of method to keep them on track. If you insert variability into dosing it will upset sleep and energy cycles. You also get brain speed problems which isnt a good thing to do to a learning child.

As usual, my opinion so get some ideas from others.

Bob


04/04/2010 02:12 AM
bob3bob3
bob3bob3Posts: 4213
Senior Member

To be honest Cynthia I dont know what a definition of an IM doctor is. My GP's in the US were IM doctors but I didnt see them as any better than a GP. I guess that like any profession the edges of competency are kind of blurry. I'd suggest you simply struck doctors that have differing levels of related experience.

I dont think IM's exist in Oz at all. GP's refer direct to specialists. Gail?

I wonder if you are still producing cortisol at a low level? This is an irritation for me that affects my dosage patterns under stress! If that is happening in the evening that might be an answer. Have as think about other body processes that might indicate a pulse of cortisol at that time. That might be a sudden energy burst, feeling of hunger, emotional response, feeling of well being etc.

Bob


04/04/2010 09:44 AM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1817
Group Leader

All I know is IM docs spend their residencies concentrating on adult illnesses, whereas GP's do stuff in pediatrics, ob/gyn, etc., in addition. So IM docs are a little more well-versed coming into the profession...I found an article written by an IM doc addressing that question. Trey agreed I should probably try to see her. She can tell me if I need to keep my GP down here for little stuff.

There is nothing sudden at night, I'm just gradually more awake. It may still be the flip-flop, but the vampire theory is easier than still producing cortisol. My cortisol numbers were SO LOW, it's hard for me to imagine my body is producing any on its own at this point. Especially after what happened with the HC switch! But say it is - is there anything I can do? Or do I just need to do the same thing I'm trying to do now. Get up an hour earlier each week, and go through all the routines of trying to get to sleep a little earlier.

If I get any sudden energy bursts, it will be post worthy! Wink


04/04/2010 07:35 PM
kgo
kgo  
Posts: 603
Member

Thanks Bob,

She is definalty secondary since hers was caused by a pituitary tumor.

I am still reluctant to give her much. I am wondering if she isn't just making more of her own htese days. She is hard to read some days.

The problem is, if she is making her own, I will suppress natural function by giving it to her.

Perparing for holidays, and tomorrow we are going to visit great gramma who is at end of her life will be a very difficult day. Much stress and I dont seem to need to give her the afternoon dose. So are the stressful days helping her make her own? Should i leave well enough alone?Unsure

I read that article (cant remember who posted it or on what thread) about synthroid being given at bedtime, that made loads of sense to me too.

I wish there was a monitor like a diabetic tester for us to know. I wonder if that would even work.Wassat

Thanks again Bob

Kim Wink


04/04/2010 07:41 PM
tamika65
Posts: 277
Member

Its funny because I have been saying that to people around me too. I wish there was a machine that could test your levels so that you would know that you are lower at a certain time than another.

Sue

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