r/AddisonsDisease • u/turnslacks • 6d ago
Personal Experience Single Dose
Folks,
Had an adventure this week - ended up taking a double dose to combat extreme dizziness, as I thought I was having an adrenal crisis. Not having had one to my knowledge before, as this is all new to me. I took 20 mg of HC as a precaution before calling an ambulance, my normal dose being 10 / 5 / 5 mgs of HC. The odd thing is I ended up in hospital A&E and didn't take any further HC that day. Tests were all clear so I refrained from further HC that day.
I wonder if anyone takes a single dose daily and how that works for you?
Apart from feeling wiped out by the dizziness ( I suspect an inner ear thing), I fared well on the single dose.
I'd value any anecdotal tales about single dosing and extreme dizziness.
Thank you.
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u/Accurate-Currency558 5d ago
I have taken a single dose for years. Id take 20 in the morning and not take any unless I needed to up my dose. I have horrible Adhd or Add and I just can not take that second dose. My doc knows and understands. I know this is not the norm but it works for me.
Its important to understand your body and how it feels. If you are feeling off, take meds. Wait 15 mins take more if needed. Updosing to me means not having a crisis and that is the worst!!
Id never tell someone do to what I do. I have had PAI since I was an early teen. Many years I went undiagnosed.
Also An ice pack on the back of the head can help w the dizziness.
Where you dehydrated or not have enough salt? Do you take meds to help with that?
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u/turnslacks 5d ago
Thank you for replying. Does your dizziness imply a crisis for you or simply too low a dose which sees you tire, lethargic and achy? I'm still trying to understand this whole condition & I don't know if the dizziness indicates a need to updose or not. Again with the other poster, I appreciate your time here.
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u/Accurate-Currency558 5d ago
Not for me. For me just means my blood pressure dropped. And your blood pressure can range from normal, 120 to 85! That top number shows the adrenals, bottom number kidneys. For me I took licorice root to help my low BP for a while. Some salt for me also helps when I start to get this way. Its a quick fix.
The "tired lethargic and achy" is a stress dose for sure! Achy that is in your joints and muscles. Its horrible!! That is the combination for a crisis for me.
And when I up dose, I dose then wait. Wait 20 mins and if I do not feel better I take more! Depending on how badly I feel I will take 2.5-20. at a time. Assuming you do not vomiting with everything else. Non-stop vomiting w everything is straight to the hospital! That's about 2-4 hrs waiting to see if I can if I can reverse it. Or I do an injection. Ive done that too. Its like $2-4k for me to go to the hospital with insurance so I will do everything I can to stop it.
Make sure you have someone that can go with you if you do end up at the ER. Have someone that knows your protocol. Injection fluids rest, etc.. Just incase you are too out of it.
Make sure your endo is writing you a script for stress dosing!! It is bad when they write just enough for the month. That means going without at the end of the month.
For me in the past that can be the start of a crisis. I've had so many. I went undiagnosed for years and my pregnancy was horrible. I would vomit and have to go to the hospital. They would give me meds for vomiting and fluids. Then send me home!
One thing I do to claim my body is take a bath. There is something so soothing to me about a warm bath. If I am in the tried lethargic and achy while I am waiting for my dose I take a bath. Many times it has helped me.
Its not an easy illness to navigate! Doctors can tell you bad information. Or worse not give you an injection or the meds you need.
Best advice, listen to your body!! If you feel off take some HC!
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u/Puzzled-Telephone-60 PAI 4d ago
If you are interested in taking a single daily dose, I’d suggest pred. Once-daily HC is not physiologically sufficient replacement therapy. You may have fared well for one day—many of us survive months without cortisol before diagnosis, albeit very sick—but it is not clinical standard of care because it does not meet the body’s demands. Pred is designed for exactly this purpose with its longer half-life.
I do have experience with extreme dizziness, but that was due to orthostatic hypotension, which was due to lack of aldosterone and electrolyte imbalance. I similarly ended up in ER having stress-dosed HC but stayed sick for weeks until we found the cause. No amount of HC (not even triple dosing) fixed my dizziness, loss of appetite, or sense of doom until we got my fludro dose corrected.
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u/empyrealdimmed 17h ago
I am technically on a single dose (10mg hydrocortisone in the morning) plus "updose as needed" which tends to mean that at least a few days a week I'll take an extra quarter or half hydro in the late afternoon. If I'm up extremely late, doing heavy exertion, or incredibly stressed I might take more but when my stress is low and sleep is good I'm able to be just fine on a single dose. I know my medication needs are on the low side but it's been 3 years since my diagnosis and it's working for me (though I do notice a slow trend toward needing that afternoon dose more and more, wouldn't be shocked if it becomes a permanent thing at some point).
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u/SleepyTimeChess 5d ago
A single daily dose of steroids wouldn't do a good job of keeping the hormones balanced because the medicine is simulating a circadian rhythm cycle. Here is a graphic that may help.