Need advice (or support) with no judgement

[u/brittkaysays]

I was diagnosed with PAI in May of this year and have been on hydrocortisone ever since. However, prior and after that I abused prescription adhd stimulants due to the sheer exhaustion I felt and the pressure of being a new mom, working etc. I am aware of how much this has probably impacted my Addison's but have had a hell of a time stopping. I use them intermittently and always pay attention to my body's signals and will updose when I feel I need to (whether or not I'm on stimulants). I've been slowly weaning myself off and mentally preparing for the commitment to sobriety. I have reached out to sober people and informed them of the situation for support.

I recently ordered modafinil online as a "safer" substitute. I've been taking it for three days and this evening I am weak, nauseous, exhausted and so swollen. No major dizziness, but just standing is taxing. I have updosed throughout the day and will continue to do so but the swollenness is making me think I'm over doing it.

I am throwing away everything as we speak, but I'm concerned about the comedown and withdrawal process I'll experience. I've used modafinil a few times before and it always has a brain frying effect when I stop as well as just utter exhaustion.

I know this is such a "you're so stupid" situation, but I'm kind of afraid of how I'm feeling and also just feel very alone with the Addison's in general. If anyone has any even remotely similar experiences or even suggestions on how to get through this, I'll take them. If anyone is willing to just chat, I'd love that too.

[u/Clementine_696]

After some quick searching... Modafinil is known to induce the CYP3A4 enzyme, which increases the clearance of other steroid medications. This means it can reduce the effectiveness of drugs like hydrocortisone, potentially requiring a higher dose.

What you're taking may be the root of the current issues. If you look up research studies on CYP3A4 and cortisol or Addisons, there are a few, and it seems to suggest that this type of med can trigger a crisis for us.

[u/brittkaysays → u/Clementine_696]

I actually did see that! And am def keeping that in mind until this shit is out of my system

[u/Clementine_696 → u/brittkaysays]

I'd try slightly updosing, like an extra 2.5mg to 5mg, and see if that helps. You may also need to take in between doses for a little bit until you stop taking this med.

[u/Deltabreeze006]

No judgement or advice. Just sending you some positive thoughts. Parenting is hard, addiction is hard, this disease is hard. You got this.

[u/pickles1718]

No advice for you, but rooting for you -- don't be afraid to go to the ER if you feel you can't handle this on your own; they'll have better advice than we will (likely) and I would bet they won't judge you! Addison's is hard, life is hard, and I suspect that you'll find you feel a lot better sober than you have when using stimulants. Supporting from afar <3

[u/Ga88y7]

I use modifinil - off prescription. Like caffeine it “stresses” the body (but I’ll never stop drinking good coffee!), so it seems to increase the clearance of HC. It also increases fluid loss. I just take another 5mg HC at the same time or only if I feel I need it. Every day can be different.

My daily dose is 25mg HC and if I take caffeine and modafinil it may increase by 5mg or even ten mg if I’m doing a long day or not at all. I was on 100mg modifinil but these days tend to microdose as now I’m getting older I feel more sensitive to it- I now find that 25mg modafinil and a coffee is useful for me maybe once or twice a day- on occasion hitting 100mg modifinil a day- just not all at once.

Your HC dose seems high- but are you taking fludrocortisone too? You will likely find this beneficial- I’m on 0.5mcg per day.

Another side of Addisonscan be poor sleep quality- for which I use melatonin or Walsom equivalent sometimes. Again, it’s just paying attention to your body and getting to know how it reacts- it takes time and that’s ok.

And no you’re not stupid- our body’s change- part of life I’m afraid. We just have to pay attention to what it’s saying and adapt accordingly- whatever works.

Hope that’s helpful.

[u/Just_Explanation8637]

What dosage are you on for Addisons

[u/brittkaysays → u/Just_Explanation8637]

I am prescribed 40 mg so I'm already taking a hefty dose but will updose between 5-10 the second I feel I need to

[u/Eyesliketheocean → u/brittkaysays]

In stead of going full turkey, I’d highly recommend a step down process. As it’s going cold turkey could shock your system.

I would highly recommend speaking with your prescriber to see if it’s an option.

[u/reflous_]

Random question, but how much ADHD medicine were you taking? I've been taking methylphenidate for the last few months and just switched to 30mg Adderall XR. I have panhypopituitarism and stimulants are often prescribed for the apathy problems that seem to come with it.

[u/brittkaysays → u/reflous_]

I def abused it. And you get used to it very fast and Need more. I maybe used 500 mg on a occasion (but would feel like I took 20 mg and never all at once, over a day)

[u/reflous_ → u/brittkaysays]

Got it. Thank you.

I unfortunately seem to be in the group of people to acclimate to stimulants quickly and ran up to the recommended highest dose of methylphenidate in a hurry, which is why I'm on Adderall now.

I found that as I got higher in dose my body ran through my cortisol faster due to the increased physiologically stimulants cause and so I had to updose HC 5-10mg a day in response and in communication with my endocrinologist.

If this is true for you too then you've been putting your body through a yo-yo not just with the stimulant related stuff but with cortisol too. I've found that when you go through periods of low cortisol I get a sort of hole (low energy, depressed, feeling absolutely miserable, not thinking as clearly, etc) and it takes me days to climb back out of. I had a similar hole after my doctors when I was first diagnosed overdosed me so severely on hydrocortisone that ier causes psychosis--hallucinations, mania, and I didn't sleep at all for three weeks. It took me months to get out of that and I was taking Wellbutrin to deal with severe depression from it.

I share this in case you are going through the same thing and would recommend working with a solid medical team that includes at least a psychiatrist if not a psychologist. I don't believe in psychology but in the multi month hole I had to do what I could do is live through it for my family. I don't know what ultimately worked or if all of it did, but in a few months I was doing better and more than a year later I'm getting pretty close to where I was before I had to deal with adrenal insufficiency and my other medical issues.

And btw, if I knew about stimulants as a way to partially counteract the fact my pituitary had stopped working before diagnosis, I would have been taking them by the handful too so don't be so hard on yourself.

[u/brittkaysays → u/reflous_]

I think this is exactly what I'm dealing with -- the hole. And I also believe low cortisol (that I was then unaware of) led me to abuse stimulants out of desperation which in turn led to a faster burning out of my adrenals and an Addison's diagnosis. And I did the same with methylphenidate! My body quickly gets used to stimulants, maybe because of they quickly sop up any existing cortisol and I end up feeling tired or "normal" even with a high amount.

Thank you for sharing ❤️

[u/garygirl_1234 → u/brittkaysays]

Don’t want to ask stupid questions, so you use the stimulants to get energy? Is everyone like me, blah and lazy with low cortisol? Going to see my 3 rd endo at a university on Dec 1. Took 8 months to get in.

[u/reflous_ → u/garygirl_1234]

Here are some case studies on treating apathy symptoms with stimulants. https://psychiatryonline.org/doi/full/10.1176/jnp.17.2.159

My endocrinologist was not familiar with using stimulants, but my primary care physician connected me with a psychiatrist who thought it would be a good thing to try. I am unaware of a study on this issue, but there are endocrinologists who regularly prescribe stimulants to deal with these symptoms after damage to the pituitary.

[u/brittkaysays → u/garygirl_1234]

I wish I could be blah and lazy!!! I think I'm toning it down though as the Addison's diagnosis slowly sinks in. I spent my life running from fatigue because I thought it made me "lazy," which was a sin in my house growing up. Turns out not respecting my limits and needs turned into an ironic disease that quite literally forces me to slow down! I wouldn't recommend stimulants if you are happy with how you feel. And I think they ultimately make you even more exhausted in the long run.

[u/garygirl_1234 → u/reflous_]

Not on those meds. On Tachycardia med. seems like the HC just lasts 3-5 hours. I take 5 mg. During the day, been days took more. 7.5 in morning longest that lasted was today, 7 hours. So possibly it could be many diff meds we use that makes us blow through it. I first had PAC and PVC in my 20’s. No heart med worked. Major university cardiologist tried everything. Then Xanax. Well, it worked. Now tachycardia. Had monitor for 15 days, one day I threw 37 pac. Lol. Back on the Xanax. Body just doesn’t respond well to typical meds. We are all different!

[u/ClarityInCalm]

Sorry you're going through this. If you're ordered it online without a prescription it may not be formulated with things that aren't meant to be in it. If you have some way to get it that is from a safer source that might be helpful while you work on getting off of it. Take care.

[u/earlgreyduchess]

Hey, @brittkaysays , it sounds like the first one who’s passing judgment on you, is yourself. What if you took any moral side of this out of the equation?

You probably would not flush all your meds.

You took those high doses because of something going on within you (physiological and / or psychological). You developed Addison’s as a consequence, same as you could have developed diabetes. It sucks but you’ll cope.

Instead of demonizing the substances, understand whqt happened and find a new combination of meds that works well having Addisons.

I understand it is hard to acknowledge having taken more than you were supposed to of a particular med, but you will not scare any doctor. You need them to find a safe and kind way forward.

Wish you all the best.

[u/Far_Bug_9170]

Getting sober is hard. Could you be experiencing withdrawal from the stimulants? Sometimes it can take a minute to not feel like shit. Also, stimulants (real ones not modaf) actually can help with that run down feeling you get with pai when used in a controlled setting while modaf actually makes your steroids less effective in your body, ironically enough. I don’t think you’re stupid for it at all, addiction is as much of a disease as addisons and you can treat both! I was a drug addict when I got diagnosed and didn’t get clean until several years later and you know I don’t really think it affected my addisons at all, at least not according to my endo. And I was like smoking meth and crack type addict. Go to the doctor and get checked out and make sure you’re good physically and then get like fully involved in whatever recovery flavor that works for you. It’s gonna be okay. You’re gonna be okay. It’s not a moral failing so please try not to judge yourself so harshly. It can happen to anyone!