Accidentally took dexamethasone, need help

[Booble]

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

Hi there, I can attest to those heavy legs being part of the adrenaline. I had the EXACT same thing a couple weeks ago when my heart rate was also racing. The neck exercises would contribute to any chest or neck pains. Heavy head likely from clenching neck muscles. I can tell you that the heavy legs really freaked me out. I'm not sure how the adrenaline does that except that it could be because our leg muscles shake or get tight during our episodes. It feels so strange to have your legs heavy. I too was waking up every couple of hours. I'm still waking up with heart racing but much lighter now such that I can ignore it. You are going to be ok.

 

[Booble]

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!

Ha, yes, "repeat 8 times...". No thanks! I f'd up once with those neck exercises...maybe about 8 or 9 months ago. I think I misunderstood the directions and did way too many. I forget what it was but you were supposed to count between or do for x number of seconds or something. Anyway result..not good.

The adrenaline I think is because we have one legit adrenaline rise -- something that creates fear for real and our adrenal is doing its job...but then our adrenal system doesn't work like everyone elses. It has trouble turning off. It's in a constant state of ready and even just waking up (or starting to fall asleep) it squirts out some adrenaline. The poor buggah thinks it's helping us. "Fight or flight, baby...here's a little juice for you," it says.

The only other possibility is mold. Adrenals can go into high gear from mold too. Perhaps it's unconsciously telling you to fight or flight the mold too. Either way, the problem for us is once mister adrenal is on he wants to keep protecting you...only to make life difficult. Your adrenals have good intentions gone bad.

 

[Booble]

On an unrelated note, can you tell me about Netherlands? Have always wanted to go. We had plans to go on the way back from Ukraine but ended up needing to stay in UA longer and had to cancel the Netherlands part of the trip. I used to keep a photo of Giethoorn by my desk. So pretty.

 

[Bergkamp]

Hi there, I can attest to those heavy legs being part of the adrenaline. I had the EXACT same thing a couple weeks ago when my heart rate was also racing.

This is such helpful information. Thank you so much. So you don’t think the neck has much to do with this?

Anyway result..not good.

What were your symptoms?

On an unrelated note, can you tell me about Netherlands?

Definitely. We are a small country, but with a very high population density. We are very similar to Scandinavian countries in terms of how the country is organised and social welfare etc. We have a strong economy with a huge focus on exports and trade. As a holiday country (assuming that’s what you want to know), summer/spring is the best time to go. It rains a LOT out here but between may-September the weather is usually good. Amsterdam is a lovely city where I lived for 6 years and have great memories of. There is much sightseeing to do, especially in the canals area and it has some top museums too. Other cities to visit are Rotterdam, Utrecht and The Hague. Giethoorn is beautiful but very touristy and busy. Everything is close to each other and we have good public transport so you can see a lot of the country in just a couple of days.

This is some general info but please let me know if you want to know anything more specific.

 

[Booble]

This is such helpful information. Thank you so much. So you don’t think the neck has much to do with this?

What were your symptoms?

Definitely. We are a small country, but with a very high population density. We are very similar to Scandinavian countries in terms of how the country is organised and social welfare etc. We have a strong economy with a huge focus on exports and trade. As a holiday country (assuming that’s what you want to know), summer/spring is the best time to go. It rains a LOT out here but between may-September the weather is usually good. Amsterdam is a lovely city where I lived for 6 years and have great memories of. There is much sightseeing to do, especially in the canals area and it has some top museums too. Other cities to visit are Rotterdam, Utrecht and The Hague. Giethoorn is beautiful but very touristy and busy. Everything is close to each other and we have good public transport so you can see a lot of the country in just a couple of days.

This is some general info but please let me know if you want to know anything more specific.

I don't think the head/neck causes it (I too have bad neck/posture issues) but I think it exacerbates. When are necks are screwy we have to work harder with them and it likely throws our muscle alignments and other things off. We hold that area very tight. Perhaps that does give our "warning system" a secret alert that spurs on the adrenals.

Mostly those exercises hurt the front of my neck and throat. I don't want to think about it right now though because I'm dealing with all this throat stuff right now.

Thank you for the information on your country!
I'm such a fan of the people of that area too. Everyone seems so educated, cultural, and basically good people.
When we need to escape from America (it's getting so bad) we'll come knocking.

Meanwhile, I hope things settle down for you soon. If you can avoid thinking about it for bits of time it definitely helps.

 

[Bergkamp]

I don't think the head/neck causes it (I too have bad neck/posture issues) but I think it exacerbates. When are necks are screwy we have to work harder with them and it likely throws our muscle alignments and other things off. We hold that area very tight. Perhaps that does give our "warning system" a secret alert that spurs on the adrenals.

Makes sense. I’ve been very bad in the mornings during this relapse and then throughout the day it clears up so that makes me suspicious I’m doing something wrong with my neck during the night. But it could also be the adrenals that are just extra active in the morning.

Thank you for the information on your country!
I'm such a fan of the people of that area too. Everyone seems so educated, cultural, and basically good people.

Thank you! I agree but we do have our fair share of idiots like every country unfortunately.

When we need to escape from America (it's getting so bad) we'll come knocking.

Haha, I think I know what you mean, I’ve always loved and been fascinated by the US (been a couple times too) but obviously don’t know what it’s like living there.

Meanwhile, I hope things settle down for you soon. If you can avoid thinking about it for bits of time it definitely helps.

Thank you. I try, but the adrenaline rushes work on my brain too, during those I get very panicky and pessimistic. But try to keep reminding myself I’m not being rational.

 

[Booble]

Makes sense. I’ve been very bad in the mornings during this relapse and then throughout the day it clears up so that makes me suspicious I’m doing something wrong with my neck during the night. But it could also be the adrenals that are just extra active in the morning.

Thank you! I agree but we do have our fair share of idiots like every country unfortunately.

Haha, I think I know what you mean, I’ve always loved and been fascinated by the US (been a couple times too) but obviously don’t know what it’s like living there.

Thank you. I try, but the adrenaline rushes work on my brain too, during those I get very panicky and pessimistic. But try to keep reminding myself I’m not being rational.

Yes, I hear you.
Two things.
Mornings. Throughout the night and mornings are worst for me too. I'm not sure why but I suspect it's because our lower level parts of our brain have a lot of control during those times. You know how you wake up and your brain is not really there for a bit? During those times (at least for me) it seems like the adrenals and the fear system really crank up. I think it's something evolutionary in that animals needed to be able to protect themselves from predators while they slept. (??)

And yes, those adrenal rushes -- I'm sure it's cocktail of things -- adrenaline, cortisol and/or god knows what -- do a real number on us.
If it's any consolation, I've found throughout years that it's my smartest friends who have the most problems with adrenals, heart pounding/racing, and panic. So at least there's that. : )

And I know that any advice I give is easier said than done.

 

[vision blue]

More or less yes though that one seems even more rigid and thick than ones i've seen- like on amazon. be careful with sizing because that makes all the difference towards right fit and comfort.

yeah, everyone thinks muscles get stronger with excercise. Mine just do the breakdown part- but not the repair thats supposed to come afterward (and make them stronger)

 

[vision blue]

Hi there, I can attest to those heavy legs being part of the adrenaline. ... I too was waking up every couple of hours. I'm still waking up with heart racing but much lighter now such that I can ignore it. You are going to be ok.

do you wake up every couple hours with "surges" in heart? that's what has happened to me.

I have wondered if the phrase "weak in the knees" comes at all from the leg heaviness thing that comes with certain adreniline rushes. i get it sometimes but not other times (during the adreniline, or rather nor adreniline bursts)

 

[Booble]

do you wake up every couple hours with "surges" in heart? that's what has happened to me.


I have wondered if the phrase "weak in the knees" comes at all from the leg heaviness thing that comes with certain adreniline rushes. i get it sometimes but not other times (during the adreniline, or rather nor adreniline bursts)

Yes, that was happening after my big surge. Multiple wake ups and each time with heart racing. It has been getting better with less and less wake ups and less intense heart racing. Last night I made it through the whole night without a wakeup. The morning wakeup had the heart racing but not too bad so that I was able to ignore.

That's a great observation about the "weak in the knees" phrase. Could be!
The heaviness feels SO weird. I thought I could walk it off but nope. It went away when it was ready to go away.

I was going to ask you two but I was too embarrassed if you got stinky poops from your adrenaline rushes?
I had the worse smelling poops. Probably unrelated and something I ate but I was curious if the chemicals in the system contributed.

 

[vision blue]

@Booble I was about to say I'll start paying attention when I realized you are undoubtedly right! I remembered thinking, after my big attack, "maybe it really was somthing I ate" and "I guess i'm sick enough to have everything affected now". but didn't tie it in to adreniline per se. Good detective work! I don't hink happens after eveyr adreniline rush so will start paying attention.

REM sleep by the way causes activation of teh sympathettic nervous system so is possible with runaway dysautonomia, those can do the surge awakenings.

in my case, besides that, i have some specific cuses of the surge which undoubtedly don't apply to you. Will expand on that though anyway when i can type more. i've undoubtedly written here at some point on them but was a while ago.

 

[Booble]

Aha! The poo patrol!

That's interesting about REM sleep activating the sympathetic nervous system. I didn't know that.
That makes sense as when I get abruptly woken while in a deep dream I wake up with the worst heart racing panic. Now I have an explanation. Thanks!

I've been thinking a lot about the parasympathetic recently.
I read a clear explanation of how the autonomic system slows your heartbeat, produces saliva, etc and your sympathetic system increases the heartbeat and stops saliva production and so on.
Clearly some of us have sympathetic systems that are turned when they don't need to be. Our autonomic can do what we need if we were only able to let it.

I get to see the reverse of that in husband. It's like he doesn't even have a sympathetic system. When he is scared or has other uncomfortable thoughts they stay in his head. They make him kind of crazy and uncomfortable mentally -- but they never -- activate anything physical at all. It's uncanny. He can be scared out of his wits and his heartbeat would likely stay at 60.

I think some of us genetically have these super strong protection mechanisms. Ancestral trauma -- survival of the fittest most likely.

 

[vision blue]

@Booble Did you type parasympathetic trhoughout when you meant to type sympathetic? sympathetic is the "figh or flight" and Parasympathetic is the "rest and digest" (inc saliva, inc digestion, lower hr lower bp)

and his bp does not elevete either? like you say, opposite balance - for him too much parasympathetic. he doens't get vasovgal syncope, does he?

good match though- maybe between the 2 of you , you average to, I don't know, a normal person ?

yeah dreams (REM) can send SNS skyrocketing - is well known officially, not just ancedtodely . I guess for normals, they then shut it down quickly and effortsly whereas we seem to have a hiddne off swtich

I think we priated @Wolfiness thread though! Sorry. he must be wolf-howling HOOOOWL about how.
Then again, maybe he's interested in these adreniline surges too since he gets them.

 

[Booble]

@Booble Did you type parasympathetic trhoughout when you meant to type sympathetic? sympathetic is the "figh or flight" and Parasympathetic is the "rest and digest" (inc saliva, inc digestion, lower hr lower bp)

and his bp does not elevete either? like you say, opposite balance - for him too much parasympathetic. he doens't get vasovgal syncope, does he?

good match though- maybe between the 2 of you , you average to, I don't know, a normal person ?

yeah dreams (REM) can send SNS skyrocketing - is well known officially, not just ancedtodely . I guess for normals, they then shut it down quickly and effortsly whereas we seem to have a hiddne off swtich

I think we priated @Wolfiness thread though! Sorry. he must be wolf-howling HOOOOWL about how.
Then again, maybe he's interested in these adreniline surges too since he gets them.

Oh, yah, woops. Thanks. I corrected.
Pretty much no change. Except in his mind. He gets really screwy there and has to do things to block out whatever is freaking him out. But it doesn't touch his body!
He has low blood pressure.
The only thing from the mind that effects his body is anger. When he gets very angry his head gets tense and his face gets red and I have to imagine his blood pressure rises causing that.
Nothing below the head though. LOL

Yes, we balance each out!

"Hidden off switch." That's perfect.
Wake husband up out of sound sleep maybe his heart beat will rise -- for about 20 seconds. Then he's done.
Wake me up out of a sound sleep my heart beat will rise (hugely) -- and not stop for a couple hours.

 

[vision blue]

Exactly sane for me on on heart.
And is why its so devastating when neighbor noise wakes me up.

 

[Booble]

Exactly sane for me on on heart.
And is why its so devastating when neighbor noise wakes me up.

Yes, it's awful, isn't it?
Husband has a habit of babbling my name and that is the WORST for panic wakeups. I don't know why that's worse than other wakeups. I have to beg him, please try not to say my name when I'm sleeping.

 

[Booble]

@Bergkamp How are you doing? Check in with us if you can.

 

[Bergkamp]

I’m in a very bad state right now. My ANS just won’t calm down, I keep getting nighttime adrenaline rushes. The weird thing is that in the evening my ANS calms down, my HR decreases, I start to relax and feel a lot better. I go to sleep feeling positive and relaxed and then in a few hours I wake up with a racing heart, adrenaline/cortisol rush and then can’t sleep for the rest of the night. The next day I feel utterly awful. This happened Saturday night and yesterday night.

I’m in an extremely desperate state. I always promised myself that if I would end up fully bedbound and fully flat again that I would give up (previously have spent 3 years in bed and have worked so hard to get out - been out for 2 years afterwards). I have also discussed this with my parents who support me. Now it happened again and I’m feeling worse than ever. I really don’t see a way forward from here - I dread every hour of the day. I don’t think this hyperactive ANS state is because of my mental state because I’ve been in similar mental states before (have thought I was dying for about a month a few years ago) and every time my ANS calmed down. But this time it doesn’t. Well, it calms down and then goes back up and running again. I feel these dexamethasone pills have flipped a switch in my ANS.

Another explanation for my nighttime surges could be Roemheld syndrome. I don’t know if you heard about this but I have a diaphragmatic hernia and SIBO. Because I lie down all the time right now and my food doesn’t digest due to sympathetic over activity, food gets stuck high upwards and produces gas there. This can cause adrenaline surges too because it makes the diaphragm press against the heart and it’s an issue I’ve dealt with before. It could have come back due to the excessive lying down, lack of movement and slow digestion I’m currently experiencing. I do feel my food and gas very high up when I wake up in the middle of the night and feel the need to relieve it by burping. Wonder what you guys think of this.

My GP was here yesterday and she suggested putting me on an alprazolam (Xanax) course for a few days to calm my ANS down but I’m hesitant since I’m afraid it makes things worse in the long term. On the other hand my ANS needs to calm down somehow. Would also appreciate your thoughts on this.

 

[vision blue]

HI! Your explanation about diagphram and heart is quite helpful actually; i had noticed a connection but wasn't sure exactly what was up with my ovrnight surges and that or how to think about it-. so thanks for that. And SEE - you have so much to contribute. What would we do without you? so don't give up!

let's say you are right the dexa flipped a switch. (I think the tropacamide 8 weeks ago flipped a switch for me- one stupid drop!) - ok, your new reality. Now we need to think how to find your off switch. Can you create a vagal nerve stimulator? or buy one if you want to go that route? Sometimes, when you sitmulate the vagal nerve, it stimulates the parasympathetic nervous system and that in turn quiets down the sympathetic system since at least some of the time, the two systems are like a see-saw (in classical views of mediine anyway).

another hting you can try to turn of the sympatheitic system mnay be hard for you- to stimulate the diving reflex. you have to dunkyour face in cold water...I'm not sure its something you can risk. so let's say its middle of night and youre desperate, what can you do? dunk face in cold water (but how woudl you get up?).

itnerestin though- it calms down in evening-but then wakes you up. So maybe you are getting a digestive surge that then sets that off. any way to work on the digestive isssue first? and don't forget as i posted above, just dreaming stimulates the symnpatethic system , so if youre off switch is hiding, that alone can be a stimulus, but one thing at a time. going back to digestion, if its reflux, what if you put bricks under head of bed? or used a hospial bed? if it's reflux from gravity those will help. but then still need the bigger issue- if youre not digesting- how to help that. true, you need the parasymnpatetic ns to digest. vicious cycle.

don't beat yourwelf up too much on the mistaken pills. if it wasn't taht, it would have been something else. i know is hard- i still go back in time and undo my eye drop, but trying to move forward also (i'm not sure what i did, so hard to generate solutions).

have you tried the breathing or humming while having an attack? pick a low freq song you like and in middle of the night when it starts going nuts, start the song and then hum along with it deep in your chest. Temporary fix- fix the digestion- your hypothesis on that is good.

if you do risk valium (maes me VERY sick but others like it), then just ocunt on hving to go off super gradually

if you prop up, what happens? heart can't handle it? oh, what is your heart rate after youve been sitting up for 5 mintues?

and what about yoru neck theory- i still like that.

try to make a little inroads- a soft neck collar one day to try, sleeping with head propped up another day to try?

 

[vision blue]

Yes, it's awful, isn't it?
Husband has a habit of babbling my name and that is the WORST for panic wakeups. I don't know why that's worse than other wakeups. I have to beg him, please try not to say my name when I'm sleeping.

well known we respond to our names- lower threhold of detection. if its in his sleep, he obviously can't control that...but sometimes, this can alter it: use the voice activated record feature on a leitle recorder. i have done this plenty. I also have a lapel mic i attach to shirt for better pick up of sound. then you just record overnight. since it only goes on with talking, it does not drain battery and does not take up much storage room. then he (and you) listens to it the next day. the thing is, if you listen to what you say during night sleeptalking, then it has a tendency to change it and youll say somethng different! so it may help to get him to not say your name (i'm assuming he's not doing it intentionally i.e. he's talking in his sleep. if he's not asleep, well that's just obnoxious then . How about earplugs? can you tolerate those? I have worn ear muffs but they don't blcik low frqueny sounds so don't work for me. they would block a name though i think)