Accidentally took dexamethasone, need help

[vision blue]

Ps. Forgot to say theres someone else i want to tag to see this thread But cannot remember his name. Hes the guy who accidentally melted something which created fumes that caused a huge flare in his symptoms and would not go away. If anyone remembers please post. Maybe he can chime in and help wolfiness

 

[Bergkamp]

ever been tested for pheochromocytoma?

No, never. I will look into it.

every try an Hi1 blocke? antihistamine? H2 blocker? do either of thopse make it better or worse?

I’ve tried antihistamines a few times, but they make me more fatigued. I also used to take doxylamine succinate for sleeping but not doing that since this relapse.

Is the neck collar also something that should be worn while lying down?

 

[Bergkamp]

Hello, I'm sorry you are struggling. My symptoms are very similar to yours, OI and elevated sympathetic activity. Annoying head pressure. Heart palpitations when stressed out or doing something physically active. And usually my ANS calm down at evening. I can have zero fatigue when I'm lying down. NAC helped me for sure, but it's not a 'silver bullet' solution for me anyway. Sorry I don't have anything else to say, this disease just sucks. Hope your ANS will calm down soon.

My representation is exactly the same as you describe. Thank you for your message.

 

[Bergkamp]

I really don’t know what to expect. My body feels like it’ll only get worse from here. The last 5 days every day was worse than the day before. By no means I want to end up 24/7 in a darkened room unable to move talk etc. I’m really scared for that scenario because it’s going backwards so fast

 

[vision blue]

No, never. I will look into it.

I’ve tried antihistamines a few times, but they make me more fatigued. I also used to take doxylamine succinate for sleeping but not doing that since this relapse.

Is the neck collar also something that should be worn while lying down?

Definitely yes. And if you try ti when upright, don't get too used to it becaue the neck muscles weaken fast if a neck thing is worn all the time. But lying down usually safe to wear as much as one wants since muscles aren't working then to support head

and read back thru and try some iof the tricks for turning off the syampathetic system

i know youcan't type all the time, so is fine if you can't reply

i got your name wrong a few times here...sorry...referred to you as wolfiness but that's someone else. slip of the fingers and head...

 

[vision blue]

I really don’t know what to expect. My body feels like it’ll only get worse from here. The last 5 days every day was worse than the day before. By no means I want to end up 24/7 in a darkened room unable to move talk etc. I’m really scared for that scenario because it’s going backwards so fast

Test for covid? in case you have something going on on top of the base problem?

 

[Bergkamp]

Test for covid? in case you have something going on on top of the base problem?

Yep, I have tested for covid frequently in the past weeks.

My ANS seems to have finally calmed down. A lot of damage has been done though - still spending the entire day in bed. Just hoping I will revert to a somewhat acceptable level quickly.

 

[Bergkamp]

Short update - ANS was calm for a day or 5, then it went back up and running again. No idea what caused it. It seems my body is still sorting issues out - every day I feel very different from the day before and every day I feel very weird. Still hoping that when it all calms down things will go back up quickly again and that I just need to be a little more patient. Just can’t imagine myself building everything that I built up over the past 3 years again another time. During a previous crash it took 3 months for my body to act normal again following which I could progress again. Maybe I just need to wait it out and just focus on avoiding deteriorating instead of desperately wanting to progress.

 

[hapl808]

Maybe I just need to wait it out and just focus on avoiding deteriorating instead of desperately wanting to progress.

Sounds like a good plan. Over the years, I often felt a bit panicked during crashes and went to see doctors or get tests or push myself in some way. Which of course all only served to worsen the crashes, whereas I feel they might have gradually resolved on their own. When I was more moderate, the idea of losing a week or two felt awful. Now being more severe, losing only a week or two sounds like a dream.

In short, I do wish I were just more patient and protective of my health all through the mild and moderate stages, and then maybe I could've avoided my current situation.

 

[Bergkamp]

Sounds like a good plan. Over the years, I often felt a bit panicked during crashes and went to see doctors or get tests or push myself in some way. Which of course all only served to worsen the crashes, whereas I feel they might have gradually resolved on their own. When I was more moderate, the idea of losing a week or two felt awful. Now being more severe, losing only a week or two sounds like a dream.

In short, I do wish I were just more patient and protective of my health all through the mild and moderate stages, and then maybe I could've avoided my current situation.

That’s very helpful advice. Thank you.