Accidentally took dexamethasone, need help

[Booble]

Thanks so much for your reassurance @Booble . I’m going to keep your post open on my phone so that I can read it when I start to worry too much.

You seem pretty knowledgeable about this issue. Any idea why the corticosteroids worsened my POTS and especially my OI so much? What’s the mechanism there?

I'm really not that knowledgeable but I am experienced at living and coping with these various things.
The one thing I've learned is that our bodies know how to correct themselves after "events" like this and the more we worry and try to control it the longer it takes for our bodies to do what they know how to do on their own. That's why if you are not in immediate danger I suggest trying to set it aside for a week and half to two weeks to let things clear out and then reexamining the situation after that. I realize easier said than done.

I agree with Vision B that you've got a lot of adrenal stimulation going on and it has to flush out of the system. The challenge is that while you are worrying about it, you are continuously adding more adrenal action. It's a really hard and vicious cycle to break.

 

[Bergkamp]

The connection with the amines is that they can raise blood pressure via trace amine receptors and by causing a norepinerphine (nor adreniline) dump which will not only raise bp but also give you yet more of a crazed overstimulated state.
Along same linees, just in case, avoid aged foods and glutamates to cause yet more overstimuation, but likely you are not a responder.

This is very helpful information. Thank you.

Remind yourself also that the freakout is part of the reaction to the med! sudden surges 0f this system produce panic-attack like symptoms. So that will fade too- or at least fade back to what it was before

Yep I know. I need to constantly remind myself of the fact that my thoughts and emotions are not rational now. Still, the insane difference between a week ago and now hurts a lot. I’ve spent 2.5 years in bed and it was a horrible and at some points traumatising experience and when I managed to get out of bed (I’ve been out of bed for 2 years) I promised myself I’d never let it happen again. Now I’m having all these deja vu’s, my life looks exactly the same as then, staring at the same ceiling all day… it’s tough.

have you tried seeing if there are any useful tidbits in the overdose section of drug descriptins? While yours was NOT an overdose, there could be useful stuff like if they give anythgin to counteract it or just give fluids or whatever support.

I’ve done some reading but couldn’t find anything helpful for my case. Best thing to do was take activated charcoal but I should have done that immediately after taking those pills (or better: stick my finger up my throat lol).

I wonder if there's some way you can use this to your advantage - like carefully noting and recording how it affects each of your symptomns?

I’m doing that, I’m also going to stop with melatonin once this is over as I read it messes with your cortisol levels during the days. I should also really do the adrenal test where you measure cortisol on different times of day since I now know the massive impact it has on my body.

i think your question about how it affects pots is a very interesting one - just even the the fact that it does i think is interesting info for all of us as well as you. So symptathetic overload in the form of too much cortosone is enhancing your orthostatic sensitivity. I'm not sure i know the mechanism. we now sympatheic overload seems to go with the pots, but hard to tell directions of causility.

Yep, this has been a big issue for me ever since having this. I never have a relapse where I’m just tired, all my relapses go hand in hand with a full-on multiple day adrenaline rush with high HR, no sleep, and a panic-like and deeply depressive mood. And then subsequently that adrenaline rush makes my POTS so much worse, although usually it’s only a week after whereas right now it was immediately.

mostly you just need to wait til it flushes out. will water help? again, don't know, check the "overdose" section as i meant above (be careful here too- don't do anything drastic or you could give yourself something new!C)

Drinking lots of water!
How I’m feeling right now is still very poorly, my head and body feel so extremely heavy, I lie flat on my bee 24/7 and it feels some heavy weight is pushing my body and head into my mattress. I’m hesitating a bit between just surrendering to it and giving my body what it wants for now or lifting my headrest up since I’m afraid that if I do nothing else but laying down all day I will slowly ‘teach’ my body that it doesn’t need to be upright anymore. After my 2.5 year bedbound period it took me a whole year of slowly and meticulously increasing my upright time every day to teach my body to be upright. There is no way in hell I want to go through that entire process again.

Thanks so much for your and @Booble’s support through all this. It really means a lot to me.

 

[Bergkamp]

I'm really not that knowledgeable but I am experienced at living and coping with these various things.

How do you cope with it mentally? Do you ever question whether the suffering of these relapses is worth the small joys our lives give us? Sorry for asking such a deep and potentially challenging question, it’s the phase I’m in right now. Don’t feel obliged to answer.

The one thing I've learned is that our bodies know how to correct themselves after "events" like this and the more we worry and try to control it the longer it takes for our bodies to do what they know how to do on their own. That's why if you are not in immediate danger I suggest trying to set it aside for a week and half to two weeks to let things clear out and then reexamining the situation after that. I realize easier said than done.

This is a very good point and I used to prolong my relapses by worrying too much about it. I think I’ve learned over time to not let it impact my body. Although I could always do better.

I agree with Vision B that you've got a lot of adrenal stimulation going on and it has to flush out of the system. The challenge is that while you are worrying about it, you are continuously adding more adrenal action. It's a really hard and vicious cycle to break.

That is 100% true. It’s mostly dread I’m feeling, the fact my life has again changed so rapidly in such a short time, and the dread of having to slowly build everything up the way I’ve did so many times before. That boom-bust cycle, I’m just so done with it.

 

[vision blue]

I like your idea of doing the 4 times a day cortisol test . Why don't you go ahead and order that now? this way you can see if these must stay in bed symptoms are due to high coritsol, low cortisol, or have nothing to do with cortisol altogether.

when i did mine it showed the pattern that some call "adrenal fatigue". so mine was near bottom of the normal range early am but was near the top of the normal range in the evening. So it was a blunting of the usual range . (actually, thats suprising arguably now that i think about it since with my dysautonomia I woulnd't be suprised if there were huge swings- instead i have less than the normal swings in cortisol. ). Anyway, one thing i learned is my huge sympathetic bursts do not appear to be high cortisol.

can you say more on melatonin affecting cortisol during the day? I've been taking a small amoun t in a patch at night about every third day. Haven't noticed any bad effect but at this point who knows.

to give input into what you asked @Booble, maybe remind yourself that whatever you think now will change? one of the very cool things about mindfulness meditation is the idea that you can just observe your own thoughts - almost like happening to someone else- without tring ot change them. just observe them. And they come, they go, come agai- it's all interesting. Anythng you feel now about suffering outweighing the small pleasures is apt to change so not worth making future plans on what you feel this second. Not sure if that's helpful. if it makes it worse, delete it...

I do understand that sense of just staying alive shoujldn't require the hard work, maintence, and attention that it seems to. I'm confident though you will be able to get out of bed again much more quickly than you did last time- your body knows what to do- just like booble says.

what was the trigger last time? that sent you to bed? Probably not a fleeting drug.

look up the humming and deep breathing to turn on the parasympthetic nervous system. may help stop the runaway stuff. Or if you want to be really agressive, try to turn an electric stimulator (like a tens unit) into a vagal nerve stimulator. This may be a bit tricky and risky though...

Can you go to the bathroom by yourself?

 

[Bergkamp]

I like your idea of doing the 4 times a day cortisol test . Why don't you go ahead and order that now? this way you can see if these must stay in bed symptoms are due to high coritsol, low cortisol, or have nothing to do with cortisol altogether.

I should do that, it will take a lot of effort though since last time I tried it I needed one from the UK (I am in the Netherlands where we don’t have it) and DHL didn’t want to send it back

can you say more on melatonin affecting cortisol during the day? I've been taking a small amoun t in a patch at night about every third day. Haven't noticed any bad effect but at this point who knows.

I have read about it once, basically melatonin and cortisol are opposites but you likely know that already. It is often rumoured that messing with your natural melatonin levels affects cortisol too since the body usually balances them out. Just found this study which didn’t find any effect though: https://pubmed.ncbi.nlm.nih.gov/8548054/

to give input into what you asked @Booble, maybe remind yourself that whatever you think now will change?

I know that it will change, it’ll get better from here at some point but my main concern, and you address that below, is that I have to do it all over again. I spent almost 3 years in bed and from my lowest point in early 2019 it has taken me 2-3 years to get back to the level I was at a week ago. My POTS builds up very slowly, I went from sitting cross-legged in bed for 10 mins per day, to sitting normally in bed, to super slowly expanding the time sitting in bed to hours per day, then sitting on the couch, then on a chair, then on a higher chair, then standing, etc. My ME is not that bad, fatigue is rarely my limiting factor, it’s always POTS and especially OI. Anyways, right now it just feels I’m all the way back to square 1 or even lower than that (I literally can’t sit upright without my heart rate going up quickly and getting air hunger). It feels my nervous system did a hard reset but maybe and hopefully I’m just panicking and my body is just reassessing and finding a new balance. I’d be fine if that new balance was just sitting on the couch but there’s just no way I can handle having to be bedbound long term again. I can’t do it anymore. I just can’t fathom the thought that everything I built up in years was lost in the matter of an hour.

what was the trigger last time? that sent you to bed?

It was a very slow process of multiple small relapses. Adrenaline rushes always give me relapses, and early on, everything I did that was mildly stimulating, including watching a sport game or even masturbating, gave me an adrenaline rush and subsequently worsened my OI. Staying upright for longer than my body tolerated caused a relapse and worsening of OI too. In early 2019 I had a consistent series of relapses which over the course of a couple of months put me in a similar state to where I am now. Then my doc put me on propranolol which brought my adrenaline rushes down and calmed my ANS and following that moment my POTS has basically always improved.

look up the humming and deep breathing to turn on the parasympthetic nervous system. may help stop the runaway stuff.

I do a lot of deep breathing, thanks for the tip, will check out the humming too.

Can you go to the bathroom by yourself?

Thus far, yes, I try to stretch my legs and just walking a few steps every every few hours because I don’t want to decondition so quickly. I also try to spend some time in the living room on the couch just to not get super sensitive to stimuli again

Thanks so much for all your attention and interest in my situation, I’m very desperate right now and every little thing I can cling on too helps

 

[vision blue]

I know what you mean. I was super desperate last night. Had an attack. You can see the thread on i think im dying if you want to distract yourself from your desperation!

If you have alot of OI, have you tried salt loading? Does thst help? Ever try iv saline? Some people get their life back with that !

I also had posted on another thread of yours. Maybe u replied. Havent been able to check yet.

 

[Bergkamp]

I know what you mean. I was super desperate last night. Had an attack. You can see the thread on i think im dying if you want to distract yourself from your desperation!

I have read through that thread, sounds absolutely horrible what you been going through. And then to think you were helping me at the same time! So much appreciated. I have some light vertigo too btw, even when I lie in bed it feels like I’m on a boat in a storm - but not sure if that’s exactly dizziness or vertigo, not a native English speaker.

If you have alot of OI, have you tried salt loading? Does thst help? Ever try iv saline? Some people get their life back with that !

I drink a lot of salt water, it helps a tiny bit. IV saline I’ve considered but also read some horror stories from people with bad reactions so I’m a bit afraid…

I also had posted on another thread of yours. Maybe u replied. Havent been able to check yet.

I saw that, thank you, I will reply soon but dealing with some serious light intolerance right now which also always comes along with these crashes so managing my screen time a bit.

 

[vision blue]

Are you doing a y better yet?

 

[Bergkamp]

Are you doing a y better yet?

Thanks so much for asking, I’m still planning to reply on your other post but my light intolerance is so bad and I really have to manage screen time.

I was doing a bit better on Tuesday and Wednesday and Thursday morning but since then it has been downwards again. Still all day laying flat, just sitting upright for my meals. Getting very desperate just don’t know what to do anymore. I just don’t see myself building it all up from 0 again like the previous time

 

[Booble]

Thanks so much for asking, I’m still planning to reply on your other post but my light intolerance is so bad and I really have to manage screen time.

I was doing a bit better on Tuesday and Wednesday and Thursday morning but since then it has been downwards again. Still all day laying flat, just sitting upright for my meals. Getting very desperate just don’t know what to do anymore. I just don’t see myself building it all up from 0 again like the previous time

I think you are having a little PTSD. That can be a common occurrence after an accidental poisoning.
You 100% will be back up again but your body is rebelling against that right now. It was only a week or so ago that you were barbecuing. The steroid overdose is short term consequences.
You WILL get back up again. "I WILL get back up again."
Say it out out loud.
Just for the heck of it.
Even if you don't believe it yet.

One of the things this disease does to us is play tricks with us.
Like the little voice in the alcoholic that says, "you know you want that drink." and then the little voice comes up with a million reasons why you should have that drink. Our lizard brain is very persuasive. Very.

In our case, it wants us down and it has access to all the little levers to keep us there. And because we know that we really are sick and that for us it's not just psychological, that little lizard brain has an easy time getting what it wants. Which is us in bed.

You WILL get up again.
The steroid pills are done and gone.

As my doctor said to me, "You feel, worse than you are."

That was my turning point.
Yes, I was dog sick. But I had nothing physically wrong that needed attending to. Bit by bit, knowing that I really was OK, I got better and better.

 

[Bergkamp]

I think you are having a little PTSD. That can be a common occurrence after an accidental poisoning.
You 100% will be back up again but your body is rebelling against that right now. It was only a week or so ago that you were barbecuing. The steroid overdose is short term consequences.
You WILL get back up again. "I WILL get back up again."
Say it out out loud.
Just for the heck of it.
Even if you don't believe it yet.

One of the things this disease does to us is play tricks with us.
Like the little voice in the alcoholic that says, "you know you want that drink." and then the little voice comes up with a million reasons why you should have that drink. Our lizard brain is very persuasive. Very.

In our case, it wants us down and it has access to all the little levers to keep us there. And because we know that we really are sick and that for us it's not just psychological, that little lizard brain has an easy time getting what it wants. Which is us in bed.

You WILL get up again.
The steroid pills are done and gone.

As my doctor said to me, "You feel, worse than you are."

That was my turning point.
Yes, I was dog sick. But I had nothing physically wrong that needed attending to. Bit by bit, knowing that I really was OK, I got better and better.

That’s really motivational Booble - thank you. Right now my body has actually calmed down a bit. I’ve been super conservative today, stayed in my room all day (previous days I spent a few hours on the couch) and it seems to work. Immediately when my ANS calms my OI improves. I try to see it as a sign that I just need to calm my ANS down and then the standing up will magically come back. I feel in the past days I went through what you said my adrenals sending in some troops of their own. In other relapses when I had an adrenaline rush I always got a smaller one a week later and the same thing seemed to have happened here.

On another note my dad just got tested positive for covid and he was sitting on my bed this afternoon. He was sitting on the other side and facing the other side though. Fingers crossed

 

[vision blue]

Yup. @Booble can sell anything

Interesting on the one week later and adrenaline. Will have to pay attention to my surges

If you had two days of some improvement, thats a good sign progress does not have to be monotonic

I havent responded to all your pists either. Im also having a flare in OI and having to juggle

Hope you dont have covid

 

[Bergkamp]

Your posts have been of so much help too. You guys are both pulling me through this and I will be forever thankful.

What has caused your OI flare?

 

[vision blue]

Hey thats nice. Thanks. If i hadnt gotten that attack i could have cone to your thread more often

My guess would be ive had a hsv1 recurrence that's in the trigeminal nerve again and having systemic effects. Not sure tho- its been this way since the scary attack

I know what u meqn tho ablut not wanting to go back to a very sock time. Ive gotten thru horrific bouts of shoot me now vertigo with repeated episodes extending monthd and than many more months trying to get balance back. And when i had recent attack and one of symptoms was that felt like things woukd soin and did some if i tried to kay down, i thought abd think now i cant go back to that agsin!

Even now with the increased OI and the reduced activiry its given, its hard to not hate and dread a backslide

Ianyway tho u shoukd be resting your eyes- probably me too!

Youre in my thoughts even if i cant thpe every day.

 

[Booble]

Heck yah on the adrenaline surges. For me they keep coming as well. And along with them you feel shit for several days so it's a long process.

By the way I don't want there to be any miscommunication as if I was saying "it's all in your head." I'm definitely not. I live with POTS, MCAS and continuous waves of feeling crappy. What I was trying to say is that our lizard brain is really good at exacerbating it and telling us to crawl under a rock.

 

[Booble]

Yup. @Booble can sell anything

Hey, no making fun of me!

 

[Booble]

>>>How do you cope with it mentally? Do you ever question whether the suffering of these relapses is worth the small joys our lives give us? Sorry for asking such a deep and potentially challenging question, it’s the phase I’m in right now. Don’t feel obliged to answer.<<<

Sorry, I started to answer this question after you first posed it but I got one of my dreaded "eye things" right as I was starting to answer. (eye thing = visual aura)

Let me try again.

For me it's about micro moments. I've had this condition pretty much all my life and finally realized it's the way I am. My life rolls with feeling yukky, feeling really yukky, feeling kinda yukky, feeling OK for the moment.

During the feeling OK moments, I CREATE HAPPINESS. I absorb it. So for example the other day I was sitting on the grass with my dog. She sat and leaned her back against my back. I could feel the weight, the heat, the life in her. It felt good so I sucked that good feeling all in.
When I take a walk up the street if I feel good and the things around me feel good, I make myself revel in it. I feel the little breeze, I see the beautiful blue sky, the pretty hills up in the distance. I watch the birds swooping around. I hear the silence.
Now granted I might go back in the house and 15 minutes later feel junky again. But I had my micro moment.

It probably sounds dumb -- but you asked!

 

[Bergkamp]

Thanks so much for both your messages @vision blue and @Booble

This morning I woke up feeling worse than ever again, even though last night it was a little better. I can’t get through a night without waking up every half an hour (even with sleeping meds) and my heart rate going all the way up all the time.

At this point I’m really starting to doubt whether it was only the dexamethasone that caused this. The reason I’m wondering that is that I was also doing these exercises that were part of this holistic healing method for about 10 days prior to the relapse. These exercises were very light and gentle but they included neck exercises. They too were really gentle, it was just moving your head from left to right in your pillow repeatedly and your chin up and down.

The thing is that already the day before taking the dexamethasone I was unusually fatigued. And also when the dexamethasone kicked in and I was completely jacked up I was very fatigued simultaneously which I think is weird. And right now I have some symptoms that I can’t explain by the dexamethasone, such as very weak legs (had that already on the first day of the relapse) and an extremely heavy head that feels like it’s being pushed into the pillow. Also, my symptoms are by far the worst when I wake up in the morning and I’m theorising whether that is because I strained my neck during those exercises and I’m now making it worse by sleeping on my stomach and thus have my neck all the way turned.

Bottom line is that I really have a hard time believing this is all caused only by taking those dexamethasone. The worsened OI, the weak legs, the heavy head… curious if you guys have any thoughts

 

[vision blue]

Oh wow that is a great observation and really rings true. Perhaps it is even keading you to the true cause of ykur pots

Can you try sleeping at night with a soft neck collar? That may prevent excess movements

Amazing how even gente excercise can get is i to trouble. Ive always said i cant do repitions. I find it amusing the one someone will show me a movement or someyhibg, and then its followed by the line “now repeat 8 times” yeah, i do t think so

So i learned that i can help myself doing range of motion movements but never repeat more than once

I think my thighs are constantly sore because just walking around is unavoidably repetitive

@Booble Any idea what causes your adreniline surges? I get them too. Neck like the OP eapecially given you had the pain that noght. I too have neck issues but so hard to tell whats primary

Cane a ross an i terssting online book guide to all causes of neck pain (it makes some bold clsims as to its thoroughness)?. The link is sitting in my email which i had pasted to give to booble and will paste here for both when i can

Still the damn lawn mosers!

 

[Bergkamp]

Can you try sleeping at night with a soft neck collar? That may prevent excess movements

That’s actually a good idea. I’ve never really pursued the CCI/AAI route - although I have done vertical traction and felt no difference. But I could always try out sleeping with a collar.

https://www.podobrace.nl/shop/produ...6zwMBgiwk9NTpxCX3juQ_qCJBUb4xpFxoC0dUQAvD_BwE

Is this more or less what you mean?

Interesting what you said about repetition by the way. I think the exact same applies to me.