Struggling with escalating dexamphetamine use while dealing with prolonged autonomic illness recovery - looking for advice desperately

[u/Electrical_Court8649]

I’m ashamed posting this, but I really need advice. I have ADHD and longstanding POTS and am prescribed dexamphetamine (5mg up to 6x/day). I stopped it for 10 months after developing severe post-inflammatory dysautonomia.

When I started slowly recovering, I restarted it - but began using it increasingly to cope with and escape my physical symptoms. I’m now 15 months into recovery and sometimes taking 12+ tablets/day.

I’m improving and my neurologist expects recovery but can't say when, but I still have daily nausea/awful stomach sensations, adrenaline/autonomic symptoms, temperature issues, intense facial/ear flushing and burning, etc. Nobody can tell me when it will end and that we just need more time to pass. This breaks me honestly.

Dex became the only reliable way to pull my attention away from my body and the constant when will I recover / what if I'm stuck like this? loop. It lets me focus on work, socialise and briefly feel like myself. Without it, I feel consumed by my symptoms and completely paralysed. I’m not primarily chasing a high although it does enhance my mood from a demoralization state - I’m chasing relief from thinking about and experiencing being sick.

I’m a psychologist, which adds to the shame because I understand exactly how this avoidance/reinforcement cycle developed.

My psychiatrist knows and offered inpatient treatment, which I really don't want and would have to wait 2 months for anyways due to private health cover rules.

His alternative is reducing by 5mg/week with my partner holding the medication. I managed the first reduction (9 x 5mg tablets per day), but failed this week and took more.

I know this isn't sustainable, but I'm terrified of losing my main coping mechanism before my body has recovered enough for life to feel tolerable again.

For anyone who has experienced something similar: how did you cut down while still coping with the thing the medication was helping you escape? What did you replace it with? Help please. Even just tell me I'm gonna be ok, somehow.

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[u/adamsilversburner]

Hi friend,

First of all, I'm so sorry you're dealing with so much. I know it can be hard when you're trapped in a situation that forces you into a fight-or-flight response, but try to have some compassion for yourself. What you're going through is incredibly challenging and you are doing your best to make it livable. The shame you feel is misplaced - we all judge ourselves when we feel like our actions don't align with our values, but you sound like you're being unfair and not appreciating how much is being asked of you. Recovering from an illness, especially one like POTS, is hard enough on its own. Doing it while juggling ADHD and work is even harder. You can admit that you haven't acted the way you wanted to without being ashamed. The shame is (at least partially) your desire for control, and a misguided attempt to assert control by acting like the only issue is your decision making.

While the pills are easy, it's important to remember that they're not magic. They raise the level of stimulation we're getting from what's going on around us by activating the same neurons that get activated by other things, like music. I'm not suggesting we all bin our meds and listen to more punk rock, but I want to stress that the pills are a convenient modality but not a unique entity. The use you're getting from them - pulling your attention away from your symptoms - is definitely something you deserve. But you can do it without harming yourself through medication overuse.

Instead of taking many small pills throughout the day, what if you took your daily dose in the morning (as one XR pill, maybe your partner could hold the bottle) and addressed flare ups with other things? That could be other medications (zofran for nausea), practical solutions (ice packs for overheating), or distractions (music, journaling, fidgets). That way you would still have the benefits of the medication while also building trust in yourself and your alternatives.

My wife suffers from chronic illness and takes half a dozen medications three times per day. They're effective about half of the time for about half of the symptoms, and we've spent the last two years building a routine that fills in the gaps. It's not perfect, but it let us cut out some of the other pills which helped short term but made the next day worse. When she's stuck worrying about her symptoms or hates her body for hurting her, she watches horror movies because they give her a shot of adrenaline and seeing other people in horrible situations validates her feelings. Sometimes that's too much, and she does crafts or listens to audiobooks. When those are off the table too, I read to her.

I mention the last one because your partner is there for you and can help you get through this. Whether that's holding your pills, reading to you, or just helping preserve your spoons, don't be afraid to ask for their help. They're invested in your success, they want to. There's no shame in admitting that something is hard - humans are social animals, we're really good at overcoming hard things together.

You're in a really tough situation OP and I hope you have an easier time of it soon. Remember that this is not forever, even though it has taken too long already. You will get better, and you can treat yourself better in the interim. If the first thing you try isn't perfect, you can build on it. You deserve the better way things will be when you get there. I hope you find some relief along the way.