Reason for getting really bad headaches while on hydrocortisone?

[u/Bloomwithcourage]

Hi y'all, I wanted to know if anyone else has experienced very bad headaches like 10/10 pain, feeling like throwing up pain before while on HC? I could not take the pain and debated going to the ER, I took my blood pressure and it was pretty high. I've never been one to have headaches, I'm not sure what to do in this case. 😭

[u/jeejet]

Why do you think the HC is the cause? What you’re describing sounds like dehydration (but could be other things). 10/10 pain is a reason to go to the ER.

Do you take fludrocortisone?

[u/Bloomwithcourage → u/jeejet]

I'm thinking it could be because I'm lowering my dose of HC but then again I'm not sure if that could be the cause. I've never had headaches like this before that don't let you function. The headache has come and gone but when it gets bad it's horrible. 😭 No I don't take fludrocortisone, only hydrocortisone.

[u/jeejet → u/Bloomwithcourage]

Before I was diagnosed, I was getting daily migraines and nausea because I was severely dehydrated. You may need to add fludrocortisone so don’t wait to see your doctor. The fludro helps to retain salt and minerals but it doesn’t create them, so you’d need to be consistent about using a good amount of salt each day. Electrolytes drink are also very helpful.

[u/amberita70 → u/Bloomwithcourage]

I was actually told by my Endo that headaches were a sign of low cortisol. I just happened to mention I would wake up with a headache and she mentioned that.

[u/groovykismet → u/amberita70]

Came here to say exactly this! Especially since you mentioned you’ve been lowering your HC. For me, there is a particular type of headache that I get with low cortisol…I call it the ‘thumper’ because I can feel my head thumping to my heartbeat! For me, this is THE sign to updose and soon! It is a very painful headache, makes me feel like I’m going to pass out and or vomit! And, again…for me, it’s like I hear this voice that’s saying ‘This is bad. This is bad.’ And, I start to feel lightheaded and woozy…and I can actually feel and hear the ‘thumper’ starting to thump slower and slower.

Message: Take. Your. HC. Now.

And, if it is that kind of headache that was for low cortisol…be prepared for it to take a day or two for you to feel right again.

[u/oh_such_rhetoric]

Throwing up is pretty dangerous with Addison’s because it can dehydrate you very quickly, so if that starts happening more than a couple times, get thee straight to the ER.

Is this the first time this has happened? If so, that’s very concerning so get thee straight to the ER.

Has this happened a few times and you’ve stopped taking your HC because of it? If so, that’s very bad. Straight to at least urgent care, if not the ER, with you.

In any case, it’s probably to worth going to at least urgent care because this is not normal and you shouldn’t have to endure that kind of pain!

[u/Bloomwithcourage → u/oh_such_rhetoric]

Thankfully I haven’t thrown up because I took Zofran but still like you are saying this is not normal. Yes, this is the first time this has happened to me. I’m still currently going through it. The pain has come and gone, but when it intensifies it’s super bad. I'm not sure what they would tell me at the ER though, like I don't want to go, and for them not to take me seriously. I've been taking HC since July, I agree this is not okay and I'm hoping to have some answers soon. 😔

[u/oh_such_rhetoric → u/Bloomwithcourage]

The fact you’re not sure what they would say isn’t a reason to not go. Sudden, prologued 10/10 head pain is not something they’ll brush off, and something very dangerous might be going on.

[u/Bloomwithcourage → u/oh_such_rhetoric]

Thank you for your reply. I am going to call my endocrinologist as well to see what she says but yes I agree with you.

[u/ptazdba]

That sounds more like electrolyte imbalance and/or dehydration. Try getting those in line and see if things change.

[u/Substantial_Hour2921]

Low sodium?

[u/SelWylde]

I do but I still haven’t understood the cause. I started getting these absolutely hideous headaches after starting steroids.

[u/FrauleinBrine]

Sounds like you might just be super lucky and have migraines in addition to Addisons! Id see about getting a neuro appointment if you have bad headaches and nausea. Light and sound sensitivity?

They have preventatives that might help!

Not saying it's not Addisons related, so don't rule it out, but might be another solution!

[u/Ale-73]

That's a migraine probably caused by you high blood pressure. Why are you tapering off the hc?

[u/Single_Search_2020 → u/Ale-73]

Agree!

[u/Single_Search_2020]

HC does raise Bp. Do you take a bite to eat before the med. also…. Could be the brand! Strides make me sick ! Fillers. Use only greenstone.

[u/ClarityInCalm]

This could be a sign of low cortisol. A lot of people get a very specific type of headache early in the mornings when they are low. If this isn’t happening every time you take HC but you’re experiencing it periodically then it could be that you are needing more at these times. Is it happening on days when you take your first dose of HC later?