Accidentally took dexamethasone, need help

[vision blue]

p.s. what about your theory of the neck excercises in the begginig of all this? that rings true.

 

[Booble]

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)

Well, it's not really when he's sleeping and it's also not super voluntary being a dick. It's kind of like a weird almost tourette-y thing. Maybe created from habit (?)-- when he has mental thoughts that bother him -- usually thinking about some dumb embarrassing thing that happened a million years ago -- he babbles something out loud and it makes it stop. That now has become like an urge. I reminded him again last night, please, please don't say my name. If you have to say something out loud say something different, or better yet, say it inside your head and not out loud.
We're quite a pair, eh?

 

[Booble]

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.

I 100% promise you that it will calm down. It will.
I've been there. And feels like it won't but it will.

Your unconscious part of your body is still on guard. It will eventually stop.

If you take the Xanax, it will calm down quicker. If you are nervous about the Xanax you can wait it out. It will stop eventually.

I'll share with you now one of my non-medication tricks.

Because it's the lower part of your brain running the show when the adrenaline is out, if you can get the complex thinking part activated it will take over and help slow the heart racing. I learned this about 15 years ago.

Don't do the second you wake up with the heart racing but when you are laying there and it won't slow down.

Engage your thinking -- with a puzzle in your head. Math works best.

Add numbers, multiply, anything that makes you have to hold them in your head and figure something out.

One that works really well for me:
I assign numbers to letters of a word and add them up create a total number.
So for example I'll take:
Booble.
B is second letter of alphabet so it is 2
O -- I have to figure out how far it is in the alphabet A=1, B=2, C=3.
I visualize in my head in groups of 5 like on dice to work it out.
a b
c
d e

f g
h
i j

k l
m
n o

So O = 15

so now I have 2 for the B and 15 for the O so my running total is 17. (I visualize that up in the corner too so I don't forget.) Another O so I add another 17. Now I have 34. (Sometimes it takes me forever to simply add 17 + 17 in my head!) then another B so add 2. I keep going til I've done the whole word.

Sometimes you lose your way and have to start over. Or you make mistakes. It doesn't matter. Usually when I start screwing it up it's because my body is slowing down.

Do a few of these til you start to feel your body less alert.
Then rather than trying to go to sleep. Simply tell yourself your going to rest. Not sleep, just rest.

And miraculously you fall a sleep.

If that name/letter/number game is too hard to start with.
Do regular math.
Take your birth date and add up the day, month, year.
Go through the numbers 1+2+3+4+5
Or anything else.

It works really well. After a bit your complex thinking shuts down the amygdala.

 

[Booble]

p.s. what about your theory of the neck excercises in the begginig of all this? that rings true.

I'm not really sure but I've also been pondering my posture's role in this. I sit VERY hunched and my shoulders are so rolled forward it's ridiculous. Like a 90 year old lady. In the last day or two I've been doing the stand in a doorway and put my arms up against the edges thing to pull the shoulders back.

 

[vision blue]

I'm not really sure but I've also been pondering my posture's role in this. I sit VERY hunched and my shoulders are so rolled forward it's ridiculous. Like a 90 year old lady. In the last day or two I've been doing the stand in a doorway and put my arms up against the edges thing to pull the shoulders back.

I meant wolfiness since he mentioned neck excercises around the time of the pills but hell we all have some neck stuff going on

Better than the old school back against wall thing, Find the guy who talks ablut muscle imbalances and how to fix them. Involved just holding muscles in opposite position for 30 sec. working up to it. No door required. He makes alot of sebse.

 

[Booble]

The other thing that is helping me is getting out into the sun for 10 or 15 minutes each day.
Not doing anything. I just sit on the ground on the driveway. Maybe the Vitamin D helps.

 

[vision blue]

The other thing that is helping me is getting out into the sun for 10 or 15 minutes each day.
Not doing anything. I just sit on the ground on the driveway. Maybe the Vitamin D helps.

Who knows- light does so much. For ne it triggers my viral recurrences but do it anyway. Hope wolfineds can get some sun somehow?

 

[Bergkamp]

Thanks for both your answers. I can’t reply to everything right now but I’ve read it and incorporating some of your advice.

My nervous system keeps getting out of control more. My HR is now 95 while I’m lying down and while on 50mg propranolol per day and Xanax now too. I’m incredibly scared because each of these rushes produce terrible symptoms in the future (even worse dizziness and OI). Is there ANYTHING radical I can do?

 

[Booble]

Is there ANYTHING radical I can do?

Nope, not that I know of. Time, lots of water and distractions.
Once your system feels safe it will stop. Takes time.

 

[Bergkamp]

Thank you. Why lots of water?

 

[Booble]

Thank you. Why lots of water?

You can get dehydrated pretty easily during these flares and that can make the heart beat wonky (pounding/palpitations.)

 

[vision blue]

ok, so hr 95 lying down. What's your hr standing up? wait a couple of minutes til it settles.
Why are you on propanolol? beta blockers can have opposite reactions in some people with adreniline issues- i for example will never take a pure beta blocker. too risky. my mother reacted very badly for one thing.
does the xanax help do nothing or make you feel worse?
Not sure about radical. i gave a bunch of suggestions in above posts on how to turn on parasympatethic nervous system and how to turn off sympathertic one.
Youll get there.

 

[Booble]

ok, so hr 95 lying down. What's your hr standing up? wait a couple of minutes til it settles.
Why are you on propanolol? beta blockers can have opposite reactions in some people with adreniline issues- i for example will never take a pure beta blocker. too risky. my mother reacted very badly for one thing.
does the xanax help do nothing or make you feel worse?
Not sure about radical. i gave a bunch of suggestions in above posts on how to turn on parasympatethic nervous system and how to turn off sympathertic one.
Youll get there.

For the record when I"m stuck in that overdrive cycle it's around 95 lying down as well.
Remember the range for normal for resting heart rate is 60 - 100.

 

[vision blue]

@Booble I used to run that way too. Then all of a sudden it was 68. My eyes nearly popped out of my head. Then it kept falling and made it down to 60
Didnt kniw what waa going on. Its when my dysattonomia started and had other changes like increased bo abd body hair liss- so my vessels were screwed. Not get any want to pay attention. The most I got was one doctor said that was interesting and that was it

Was yours 95 when on a beta blocker tho?

 

[Booble]

@Booble I used to run that way too. Then all of a sudden it was 68. My eyes nearly popped out of my head. Then it kept falling and made it down to 60
Didnt kniw what waa going on. Its when my dysattonomia started and had other changes like increased bo abd body hair liss- so my vessels were screwed. Not get any want to pay attention. The most I got was one doctor said that was interesting and that was it

Was yours 95 when on a beta blocker tho?

omg, the exact same thing happened to me.
Suddenly in the high 60s and then going down down down.....mine actually went to mid 50s which freaked me out -- so thus freaking had it go up. But I notice now if I'm super duper relaxed it can be in the mid/upper 50s. I don't know if it always has been and I never checked when I wasn't feeling it racing or if it's new. I'm guessing thyroid maybe.

I've never taken a beta blocker so when mine hangs in the upper 90s it's just me nothing trying to get it down.

 

[vision blue]

@Booble Same here on the 50s. I try to repress that part because it freaks me out too. You shoukd see what happens during night to hr if you really want to freak out...

Ive never been on bb either. Was just asking since we were comparing ourselves to wolfiness and hes got 95 while on BBs.

So why did we both have a heart rafe drop from 90s to 50s-60s. You thinknis thyroid? My numbers havent budged and certainly all the hyper stuff doesnt feel like hypothyroid. In my case it was never that low as i checked it whether i had symptoms or not.

Every evening the tinnitus gets loud. Been 8 weeks and one day.

 

[Booble]

@Booble Same here on the 50s. I try to repress that part because it freaks me out too. You shoukd see what happens during night to hr if you really want to freak out...

Ive never been on bb either. Was just asking since we were comparing ourselves to wolfiness and hes got 95 while on BBs.

So why did we both have a heart rafe drop from 90s to 50s-60s. You thinknis thyroid? My numbers havent budged and certainly all the hyper stuff doesnt feel like hypothyroid. In my case it was never that low as i checked it whether i had symptoms or not.

Every evening the tinnitus gets loud. Been 8 weeks and one day.

I really don't know. I was very surprised. Low 70s used to be more normal. Maybe there is something to it being in between spurts of really high rate. Heart taking a break? I dunno!
I'm actually kind of glad to hear that you don't think you have thyroid issues and the same happened to you.
It's freaky seeing the low number on the pulse oximeter, and double freaky when you put your finger on your pulse and fee it beating soooo slowly.
I also have low respiration -- I think I always have. I don't take that many breaths per minute.
(Perhaps cause of the stupid eye aura migraines?)

 

[Bergkamp]

ok, so hr 95 lying down. What's your hr standing up? wait a couple of minutes til it settles.
Why are you on propanolol? beta blockers can have opposite reactions in some people with adreniline issues- i for example will never take a pure beta blocker. too risky. my mother reacted very badly for one thing.
does the xanax help do nothing or make you feel worse?
Not sure about radical. i gave a bunch of suggestions in above posts on how to turn on parasympatethic nervous system and how to turn off sympathertic one.
Youll get there.

My HR standing up goes up a lot - especially because every movement I make jacks up my HR right now. I can’t stand longer than 20 seconds right now.

Propranolol is actually what saved me. Up until 2019 I was in a downward spiral for 2 years when I started taking propranolol which completely calmed down my ANS and from then on I’ve been going upwards for 3 years straight. Until this point.

The Xanax helps a little although I have only taken it on an ad-hoc basis. I’m considering starting taking it regularly to calm my ANS down. My body is in complete disarray and my OI is getting worse by the day. Every ANS surge worsens my OI, and when my OI gets worse I’m more susceptible to ANS surges. I’m in a downward spiral right now and really scared

 

[VisualEffect]

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.

 

[vision blue]

Ah, thanks for clarification on propanalol. Very glad to here its not the cause of your recent flare.

I know it's scary but it will get better

ever been tested for pheochromocytoma? although usually they are more discrete attacks, but sometimes people can not be normal inbetween them as well. Just worth ruling out. All of us with crazy SNS symtpoms should have it ruled out at some point just in case.

every try an Hi1 blocke? antihistamine? H2 blocker? do either of thopse make it better or worse? Might be risky though. Just tyring to think of something that might break the vicious cycle.
don't forget the soft neck collar in case all coming from neck and/or baro receptors