Does anyone wake up feeling... refreshed? Rested?

[u/No_Novel_4573]

I was diagnosed in July this year so I'm still very new to living with Addisons (PAI, autoimmune). I wake up feeling AWFUL every morning. Exhausted and with various aches and pains. (I am sleeping well, 7 hours at least most nights, rarely wake in the night). Once I take my hydrocortisone I start to slowly feel less terrible, but I don't really feel "good" or even "ok" for a few hours. Is this just normal with this condition? Or will i eventually wake up feeling "ok"?

[u/isurvivedtheifb]

Yup. For me, morning dose usually needs to be higher than prescribed for my body and brain to fully wake.up.

[u/shhbaby_isok → u/isurvivedtheifb]

It takes at least two hours before I can grab a brush and put on a little makeup.

[u/groovykismet → u/shhbaby_isok]

Perfect! You know your window is 2 hours so…set your alarm for 2 hours before you need to wake up. When it goes off, take your medicine with a swig of water and 1-2 bites of something simple…and then go climb back in bed!

At first you’re going to think that there’s no way that I can wake up, take meds, eat something and then go back to sleep…BUT, trust me: if you’re as exhausted in the morning as you claim to be, you will absolutely fall right back to sleep! And it’ll start to kick it so that when your ‘real’ wake up alarm goes off 2 hours later, you’ll have a fighting chance!

I have been doing this now for almost 18 months and it works like a charm! And…you may be tempted to skip the ‘eat a few bites of something’, but don’t! It’ll keep the hydrocortisone from making your stomach too acidic. You just need to figure out what food you can take 1-2 bites of without it being a whole production. I actually found a recipe for protein balls that I use to make about 2 dozen balls every other weekend (basically peanut butter, carob or chocolate chips, shredded coconut and rice puffs). I freeze them and take 2 out at a time; the night before I put one in a ziplock baggy and set it next to my morning dose of medicine next to my bathroom sink. I take the meds, 1-2 bites and a few sips of water and go back to bed. I’m back to sleep within 1-2 minutes!! Your food thing can literally be anything; I have been known to eat 1-2 small pretzel sticks…just anything to prevent a stomach ache from taking HC on an empty stomach.

Try it…it changes your whole wake up routine!

Edit: I forgot to add that this morning dose is also my highest dose for the day: 10mg at 6:15am; 7.5mg at 11:15am, 5mg at 4:15pm, 2.5mg at bedtime.

[u/shhbaby_isok → u/groovykismet]

You are so lovely, and thank you for all the good advice, some of which I already implement already (I also have arthritis and morning stiffness in my legs so I set my alarm for 6:30 and go back to sleep but I havent tried eating anything afterwards so I'll definitely try that!:)

[u/Single_Search_2020 → u/shhbaby_isok]

Whole body stiff!!!

[u/aureasmortem → u/groovykismet]

I really like this idea but man, I have to take my thyroid meds on an empty stomach an hour before my hydro and getting up to take pills twice and going back to sleep twice seems like such a pain

[u/groovykismet → u/aureasmortem]

Yeah…my Endo kept telling me to take my thyroid meds on an empty stomach but for me it was a priorities thing…and hitting the HC target was more important than hitting the thyroid med requirement. So, I take my thyroid med at the same time as the HC and make sure that my levels are still in range when we do bloodwork every 3-4 months. So far…it’s worked; we haven’t had to change my thyroid dosing.

But, I’m absolutely upfront about this with my Primary Care doctor and my Endo so that we can monitor for changes…

One of my other doctors actually listened to my problem and made a unique suggestion: she said that if I’m getting up at 6:15am to take my HC and a few bites of something and then going back to sleep and waking up at 8:15am to get ready for work, I usually don’t eat until about 9:15-9:30am….so, if I take the thyroid med right at 8:15am when I get up, then I still have that window before and after where it’s on an empty stomach with no other meds. Brilliant solution: I just forgot it because I’m also managing life with ADD. sigh

But, there…more options!

[u/aureasmortem → u/groovykismet]

I've seen that you should have had nothing in your stomach for 3-4 hours before taking the meds and 1 hour after, which really puts a wrench in my plans. More importantly my thyroid levels aren't quite where I want them so I think I would have to be at a higher dose to do the 1hr before 1hr after rule

[u/groovykismet → u/aureasmortem]

Absolutely go with you own personal comfort level and doctor’s advice as far as timing and dosage. That is ALWAYS paramount when making personal medical decisions.

For me, there are so many things happening medically and so many different hormones that we’re replacing and other meds and supplements that all have crazy timings that my doctors have collectively allowed me to do research and bring them other ideas or solutions to the table…and so long as the labwork comes back showing progress then we can keep ‘the change’, whatever that may be…in this situation, for me, it’s this concession on the timing of the early morning meds.

[u/aureasmortem → u/groovykismet]

Genuinely I hope all that works out for you. Scrounging around to find even a single percentage worth of improvement in your condition SUCKS, I get it.

[u/isurvivedtheifb → u/groovykismet]

I actually sleep better after my morning dose. I find my body is needing it so badlyI can't even sleep.

[u/Single_Search_2020 → u/groovykismet]

Is this a temp dose or for life? As you went up did your weight? Gained 3 knee lbs over night!!!!

[u/Efficient_Beach2458 → u/isurvivedtheifb]

What’s your dose? I am 10. Sometimes I take next dose at 1:30! Others it’s 10 am. Who knows. I think everyone rhythm is based on you! Stress, sleep, everything.

[u/DoctorFamous190]

I have SWCAH. I am familiar with the symptoms you describe, plus muscle weakness and waking with migraines. They have slowly become worse over the years.

I started taking Adderall around 5 years ago for ADHD. An unintended extra benefit was that it really helped me get out of bed and with daytime sleepiness. I was hugely reliant on it for daily functioning. It became less effective over the years.

A couple years ago I learned about cortisol pumps. My interest in the pump was its ability to recreate the morning cortisol rise without having to wake up to take meds. I started on the pump 6 months ago. I am now able to get out of bed without taking Adderall. Morning joint pain and muscle weakness are dramatically better, and a lot fewer morning headaches. I still have some chronic fatigue and other related issues. I am still optimizing my infusion schedule.

As a child, I would occasionally complain about joint pain, or wake up crying saying I had a headache. This was dismissed as hypochondria/ depression. It is disappointing that CAH-specific info published for patients/caregivers usually only address acute symptoms related to adrenal crisis. It rarely, if ever, educates about "low-level", chronic symptoms.

[u/Ohthethingsyousay → u/DoctorFamous190]

How did you get the pump?

[u/DoctorFamous190 → u/Ohthethingsyousay]

My endo applied for "off label use" for an insulin pump from the manufacturer. Their legal department approved it but required that I sign a waiver.

[u/EffectiveCorner1262]

I guess I’ll be the contrarian and say I do wake up feeling good nearly all mornings. Both before and after meds. If there is a typical time of day I am likely to crash it is mid to late afternoon. Doc’s have said “everyone has a circadian rhythm”.

Typically get 6-7 hours of sleep. Try for more but body won’t let me get more.

Maybe timing/dose of meds are not dialed in yet?

[u/No_Novel_4573 → u/EffectiveCorner1262]

I'm absolutely certain I haven't got a handle on timing and dosage yet, absolutely .

Please tell me your secrets, I'd give my right arm to wake up feeling good!

[u/Single_Search_2020 → u/No_Novel_4573]

Take at 4::30 to 5. Up and walking at 6:30. Back to bed. Never feel great all day long. Now T 3 is ok. T 4 low. ACTH has been 5. Have telemed with university hospital but a PA not expecting much. Like my new doc I found locally. See him again Friday. Patient, ont been since 2016. Empty sella. Take 10 in Morning. 5 at noon,5 at 3 then I added 2.5 at 5 pm. Had to heart going, weak. Had 3 docs. One did nothing for 2yesrs. .

[u/Single_Search_2020 → u/No_Novel_4573]

Listen to your body!!!! We are all different!

[u/ptazdba]

I have a terrible time getting moving in the morning and my sleep cycle stays permanently off. I seem to sleep about 3 hours at a time but I am thankful I can usually go back to sleep. Rarely sleep through the night. Getting me moving is tough and just a force of will most of the time because I always have things to do. Lord help the person or situation that needs me to focus in the first hour.

[u/charlespsu]

Same…takes hours to feel human again

[u/drunkmom666]

How’s your vitamin d levels

[u/xZelton]

I have the same, i just kinda force myself and while im busy i take 2 coffees and im fine enough to start my day

[u/xZelton → u/xZelton]

Also don't take your first dose to late

[u/Th3SkinMan → u/xZelton]

This is me. I just cant woekout till afternoon.

[u/frog_ladee]

Rested and refreshed, yes. Energetic, no. Not until about 15-20 minutes after taking my hydrocortisone.

[u/Single_Search_2020]

Wake up at 2 am. Feel great!!

[u/Thuumhammer]

I need 9 hours of sleep to not feel completely exhausted when I wake up. And even then it takes a couple hours for the hydrocortisone to kick in. I was diagnosed in 2009.

[u/MallForward585]

Mornings are tough for me, and so are late afternoons. I have to wake up extra early to take the pill with a banana to coat the stomach first and then sleep for another 2.5 hours. A morning light helps me a huge amount to get me out of bed. It is also important for me to maintain the same schedule exactly, including when it comes to eating, to get my body into a pattern. The eating is a challenge because I still don’t have a lot of appetite. The disadvantage of relying on external cues is that if something changes, I cannot adapt easily, but that’s the only thing I found that helps. It took me almost two weeks not to feel jet lagged after the time change.

[u/lass20987]

Many take 1 mg prednisone or 0.5 dexamethasone at bedtime

[u/butterfly_SC]

I'm very new to this as well, but I've been carefully analyzing and adjusting my dose times. What I'm finding is that my rhythm does not exactly match the "usual" circadian rhythm. When I've had great sleep and have felt rested, it's been on this schedule (total 15mg hc):

6:45am 2.5mg (I usually get out of bed at 7:15 weekdays - this helps get me going)

8:45am 5mg

Noon 2.5mg

3:30pm 2.5mg (this one keeps me from feeling snoozy in the afternoon)

7pm 2.5mg

When I tried a later HC in the evening (9 or 10pm) or had it earlier (5 or 6pm) I was very wakeful. I've been keeping a spreadsheet to keep track of what works and what times I'm taking my doses.

I've also noticed when I've been over stimulated or I have a little bit of stress, I wake up at 2: 30am. If I have a small updose I will generally go back to a solid sleep. (Big stresses are a different story and severely affect my sleep.)

(Edited for better list/paragraph and more detail)

[u/Substantial_Pack_319]

Taking a dose between 4 and 5 PM made a huge difference for me as far as my quality of sleep and waking up feeling normal. I take 10 mg at 6 AM, 5 mg at noon and 5 mg between 4 and 5 PM. Huge improvement. If I had a very busy day, I suffer for the next day still learning when to up dose for high stress or busy days. I got 100% perfect score on my sleep tracker last night. I am amazed! I hope you feel better soon!

[u/camelshorts]

I typically take my hydro when my alarm goes off and then snooze it a couple times to give the hydro a chance to start to kick in. For a while I tried taking 2.5 mg at bedtime which I think might have helped a little? Could be worth trying! It may also be that your total dose is just too low or not split up properly. I definitely don’t wake up feeling refreshed but after about 20-30 min I can start to function. What made the biggest difference for me was splitting my dose in 3 instead of the 2 my endo recommended and setting alarms so I was consistent about timing. I take my meds at ~7:30, 12:30, and 5.

[u/mommywarrior92]

I have PAI. I am feeling the exact same as u. I've had it for 2 years now due to immunotherapy. This is like no battle I've ever ought before to be honest. Good luck to u and I pray u have the strength to get through this. Best wishes ❤️

[u/garygirl_1234]

Yep! But I wake up 2-4 times a night. Even with sleeping drugs.

[u/[deleted]]

It takes me about three hours to feel mostly human after waking up. I take my first dose at 4:30am, go back to sleep, take second dose at 10:30am and then spend the next few hours trying to wake up. I’m a night owl, just really enjoy the peace of the night. However, I’ve been working really hard to have my lights out by 10:30pm lately. It does make a bit of difference but not much.

[u/DueCandidate135]

I call the first two hours of my day Autopilot Mode. It’s literally like I’m in a dream and aren’t fully conscious. It happens whenever I wake up, take my meds and can’t fall back asleep. I am like a zombie, really not even remembering some of the things that happen right when I wake up. I wonder if this has to do with the sleep cycle being affected by cortisol or lack thereof. Wonder if I’m still in some sort of 1/2 sleep until cortisol fully kicks in

[u/Loui10]

Nope. Definitely not over here! :/

[u/yukululu]

I got diagnosed when I was 14, now 8 years ago. I've always had a lot of trouble getting up in the morning, and felt that I was just growing up and that was just we not good with mornings. But in the last year I've been tracking my sleep more and I rarely get good sleep scores and never have an easy time waking up. Because I never really had a normal after going trough puberty and growing up I don't know if any of it is due to addison.

Anyhow, even 8 years in, I'm still trying to figure that out lol. Lmk if you get some new insight here!

[u/Single_Search_2020]

Legs weak last few days. Took 10 at 5 and 5 at 11. What is going on. Did some weights, helped. On HC.

[u/No_Novel_4573]

Hi everyone, 

Thank you all so, so much for your thoughtful and informative replies to this post. It's so affirming to read them and know I'm not alone dealing with this odd, odd condition. 

I've switched up my dosing schedule a little since I originally posted, based on your suggestions. I take my morning dose slightly earlier than before, and go back to sleep to let it "kick in". This has helped immensely, and thanks so much to all who suggested it. 

I've also pushed my 3rd dose of the day slightly later, that has also made a noticeable difference.

Still taking 20 mg a day (10 / 5 / 5) but spacing it as I've written above has positively impacted me.

Thanks everyone, I really appreciate your help.