#sz# #sz# I know we all talk about fatigue here but how many of you experience it on a daily basis? No matter how good I sleep at night I cannot last through the day without a nap. I'm not talking a little nap...I pass out for 2 to 3 hours. Then come bedtime I sleep like the dead again. When I first got sick I swear I slept 20 hours a day for 6 months. So I guess I shouldn't complain...it could be worse.

Maureen

Hi Mo,

You've been under a lot of stress lately with family problems, and I think your body just needs the rest. I don't know if you upped for stress, but even when I up for it, it still takes its toll. Addison and his ****** disease! I hope you get caught up soon and get to feeling better. Take all the time you need! :)

:wub: (grh)

Hi Mo,

I TOO am TIRED/EXHAUSTED ALL THE TIME. I also, tho, unlike you have a very hard time FALLING OFF to sleep. Once asleep, I sleep like the DEAD, but have to take Sleeping pills, PLUS melatonin, PLUS sometimes more just to FALL OFF even tho" I'm DEAD on my feet. I also CANNOT nap, so by like 8 PM I'm ready for bed. I go to bed usually by around 9 pm, but I usually do NOT manage to FALL OFF (asllep) until 10 or 10:30 on a good night, Midnight or later on a bad night.

I have complained about this to ALL my dr's, but noone REALLY listens - soemtimes even w/ the sleeping pills, I have to take 2 to actually knock me out. The other night it was 3 am when I F|INALLY gave in and took a second Ambien so that I could at least get 5 or 6 hours before I had to get up and start my day!! Thank God it finally did it, and I got a few hrs rest which I so DESPERATELY needed.

I think it has something to do w/ our "Diurnal Pattern" being messed up. Also the fact that Steroids in themselves, are somewhat of Stimulants, and the RESIDUES still in our systems.

Not really sure what the problem is, but I'd PAY a MILLION dollars to FIX the problem!!

Before I started the guai protocol I HAD to take a nap everyday and it was a 2-3 hour nap. I would usually sleep a good 9-10 hours a night as well. Now I usually only nap once a week if that....and there are still times when the exhaustion slams me and I sleep 12 hours in one night. But the fatigue is sooo much better.
There were some tricks I did before the guai that helped though....
One is that I wouldn't fight the nap. I would just plan on taking it and not feel guilty. I just slept when the body said sleep. Not fighting it seemed to make the naps more restful and often times shorter. Then when I awoke I tried to do something as active as I could, whatever exercise that I could tolerate. That would give me a boost of energy that would often last till bedtime. You might try that.
I beleive the reason we are so tired is because of the lack of quality of sleep. Do any of you remember the Star Trek the Next Generation episode when there was this alien race trying to communicate with the Enterprise and in doing so was interupting their REM sleep? Everyone was having halucinations and/or going crazy, were dead do tired etc... Well basically the same thing happens to us. There was a study done (that I used to have bookmarked but can't find it now <_< ) by a doctor studying sleep problems and addisonians. He found that cortisol rised in the second half of the sleep cycle...at around 2 a.m. That is also when we go into the most restful sleep cycle or REM sleep. REM sleep is essential to rejuvination and rebuilding of the body. This doc found that because addisonians cortisol is lowest during the last half of the sleep cycle that most addisonians were getting less REM cycles and they were of shorter duration. Therefore we are getting less restful restorative sleep. That is why I wish they would hurry up and ok that time released cortisol. That I think would help lots of us. I've tried taking a small dose of pred or cortisol when I go to sleep at night but it was a bit harder to fall asleep I thought. But there are times when I wake at 1 or 2 and am having a hard time getting back to sleep that I take some extra then and I sleep like a log. I feel so great and rested on those nights.
So maybe trying a small dose of HC, like 2.5 or 1 mg pred might work for you also.
It just sucks being in a daze all the time! I told the docs for years that the two worst things for me about addisons disease was the constant muscle cramps and having to take a nap everyday. Well I've fixed the muscle cramping and almost eliminated the naps, no thanks to the docs....hee hee. But life is tons better this way.

(grh)

(I sure am blabby tonight aren't I?? sheesh)

I was going also to ask if you have tried taking 2.5 rt at bedtime? If not, give it a try......I sometimes do that if I know I have overdone in the day....keeps me from waking in the night w/ the low hc 'breathing thing'.....
But I think you will also need to take the hc and the sleeping med...as if you just stop the ambien you may very well have rebound insomnia and won't be able to tell if the hc works.....

Interesting that the sweating has gotten somewhat better w/ the Mexo.......??

I am always amazed at how well you cope, Kathy, w/ all you have going on, and working, etc, etc....
Diane

That;s interesting Shelley about the REM Sleep. I'll have to ask my Doc about that next time we renew my sleep meds.

I've tried the Cortef at night thing - it just keeps me awake more. I also think since so many of my Allergy Meds have stimulants in them, that doesn't help. My body has a real hard time "WINDING DOWN" (so to speak).

Back to that "INterrrupted REM Sleep thing" when I do wake during the night it's always around 2 tp 3 am & I can't go back. Interesting. May ask the Doc to try me on a small amt of PRED. Just for night time useage, and take right at bedtime & see if that does any better.

Just factor it out of my daily dosage. HMMM

Do you have a bedtime routine Kathy? It seems to help me unwind from the day, then when I take my Melatonin, I'm already relaxed and ready to go to sleep within 20 minutes or so. I usually watch something happy on TV - cooking show or design program. Just a thought. (grh)

...maybe try the melatonin and valerian.... And have you tried taking 2.5 when you wake at 3 am?
Lack of sleep is such a bad thing for us.....just adds to a viscious circle of the deprivation impacting hc needs....and the hc impacting the sleep...
Diane

Waking in the early morning is usually low cortisol...I take a small dose at 4:00 AM...it is part of my daily dose.

Have tried Valerian - not sure if it's my other meds or what, but Valerian knocks me out COMPLETELY!! A FIRE Wouldn't wake me when I take it. And the Hang Over the next day - for me - is GOD AWFUL!!

I DO have a bedtime Routine, and I try to stick to it as much as possible. My mom told me recntly about a "Walnut Shake" where you grind (1/4) walnuts in the blender & add 1/4 to 1/2 c. low fat milk (or soymilk) w/ Cinnamon, Flax if you like, Vanilla extract. Put all in blender & make a "MIlk". It REALLY does make you Sleepy!! So I've been doing that lately. Along with my Melatonin & Ambien that usually will work.

They say the walnut milk replaces "Seratonin" in our system.

I've tried the Cortef at 3 am too - it keeps me awake.

I wasn't sleeping restfully since the dx of AD. My dr. suggested taking the 2.5mg at bedtime because of the link of cortisol to REM sleep. Makes a huge difference for me. I sleep much better and rarely nap.
Rebecca

Yes, I thought about it today. I take my first dose of HC at 6:30 to 7 am. My next at 1 pm to 2 pm. I am going to TRY doing 2.5 mg at 6 pm WITH my supper. Hopefully the food will absorb az little leaving just enough to help me go out a little easier.

I will do 17.5 mg in the AM instead of my normal 20 - still 10 mg at 1-2 pm as I need this "BURST" to finish out the afternoon at work & make it home safely. But then I still have a little leeway for the 2.5 in evening. Hopefully soon I'll b e able to cut back to 15 mg. in the AM. But I have tried it in the past & it just wasn;t enough to get me thru my busyn mornings at work. On w/e's I can do it. But not during the week with work and all.

Kathy I take my last dose at 6:00 pm...works for me. :)

Kathy for all you do...what is your total daily dose then ...(when you can stick to it that is...) You work hard and long....

When I say to take 2.5 at night I meant bedtime...I do that when I think I have overdone and am trying to head off being beat the next day. When I do this it counts as extra...not off my daily amt.....The same concept would go for the prednisone...it would just kick in later in the wee hrs.....I tried 1 mg pred for a while but I think it was when my insomnia had many different causes besides hc. I do keep some pred handy and use it when I am traveling or instead of my afternoon hc when I know I need to have more hanging in there power later in the day......

I find that if I take hc around 5ish...it will keep me from getting to sleep sometimes....

Diane

Oh...re-read...sounds like you take 30/day? Why do you want to lower to 15??!
Diane

I'm the same way...what is a really good night's sleep...I wish I knew. I've tried everything...have a hard time getting to sleep, wake up early...Today, I am extremely tired and somewhat nauseaous from not sleeping much...stress exhausts me, and sometimes when I am extremely tired, I get silly and wired. I know it sounds like an oxymoron, but that's the way I am. I lose stuff all the time, can't think straight...feel like I'm going to throw up from exhaustion. I feel lilke my body is totally confused, I'm confused. It will be interesting to see what my blood tests show on my upcoming physical...also started taking magnesium, but it will take a little while to absorb in to my system. I get upset when I'm tired and someone asks why I'm so tired, and I tell them I can't sleep, then they say, why can't you sleep...welllllllllllllllll, I don't know............I try not to b the bword and don't think I am, but I am a little edgy. I did read after Shelly's post that the magnesium may help the symptoms I've been having so I am going to continue taking it and it should be kicking in soon. Maybe I should take straight magnesium and not the combo I'm using. I lost a book, for example, for my computerized sewing machine/embroidery...searched all over for it, couldn't find it...sure got things cleaned up and got rid of stuff...still couldn't find it...several days...Then I asked Chuck if he'd go out to the camper to get a novel I had taken camping. He found the sewing manual...I told him "Oh, my gosh!!!" and hugged the book. Why did I hug a book, you must think? Cuz I had called the sewing store and it would have cost $129.00 to replace!!! Before Chuck found it, I shot off an Email to the company and told them that was outrageous. Does anyone else get this confused and forgetful from lack of sleep? I feel like a nut!!! Why in the world was my manual in the camper? If I put it there, why did I forget? It's scary. Thank goodness I'm still good at Sudoko and crosswords or I'd be afraid of Alzhiemers.

Patti

Patti I lose things and forget way too much. Something else I take which is supposed to help brain function is acetyl-LCarnitine. I order Doctor's Best from Vitacost. I take seperate magnesium about 750 mg. per day...

I really feel for those of you who are having trouble sleeping...I've been there in the past and it is so tiring. You do get to the point you can't function. (grh)

No, I take a TOTAL of 30 Mgs a day. I currently take 20 in AM (Around 6;30 or 7 am) balance (10 mg) at or about 1;30 or 2 pm.

Thinking of trying to change to 15 at 6:00 - I have to get up EARLIER in summer & go into work EARLY due to extreme heat, LEAVE EARLIER so I'm not out in the HOTTEST POINT of the day.

Anyway, 15 mg at 6 or 6:30 am, 10 mg. around 12 or 12;30 pm and 2.5 at 5-6 pm.
I'm afraid 5 mg. at 5-6 pm WOULD keep me awake. So I will have to EXPERIMENT a little. I go to bed fairly early. 9;30 or 10 pm.

I take my Ambien approx. 20-30 min's BEFORE Bed, and lately I've been taking 2 mg. TIMED RELEASE Melatonin along with the Ambien, THEN AT GOING TO BED - I take an extra 3 mg. (or can cut to 2 mg. as it's 1 mg. tabs) Quick Acting Melatonin to help me fall off easier. So far, what I've been doing with the sleep meds (also including the walnut shake on night's I feel I need a little EXTRA help going off).

See, even tho' most nights I'm TOTALLY EXHAUSTED, I still sometimes can't fall off. Those are the really horrible nights. Because you're so Exhausted, it hurts to even think!!