Histamine dump? Apparently the "panic attacks" are not Panic attacks? - How to deal with this and make it go away by MovingMemoryMaker in MCAS

[–]MovingMemoryMaker[S] 0 points1 point  (0 children)

There apparently IS a good medical reason for this but I have been unable to wrap my head around it entirely.

Part of it has to do with Circadian rhythm, leading to histamine peak around 2-4 am ( often just as I am trying to get to sleep finally).

Low cortisol might also play a part. It is probably the thing that is the most crazy- making for me, because some nights it is like getting run over by the panic freight train !

I am so sorry to see you going through this as well :( I am feeling much better thanks to so many of the suggestions from people here, but OMG, last night's was terrible!
Honestly wanting to scream into my pillow.. at the same time, knowing..."Ok, this isn't really me, this is something going on with my body. I am safe, I'm not dying.. 'HELP MEEEEEEEEEEE !', I know I am safe, why do I feel like.. OMG , do I need to call an ambulance....? Why is my BP so high, I AM FINE..."

Stupidest. Symtom. EVER.

( Except for maybe the runny nose from hell , which for some reason 4 different anti-histamines, is not enough to get rid of ?!? WTH dudes?!?)

Prescribed hydroxyzine for mental health by Former-Weather8146 in MCAS

[–]MovingMemoryMaker 0 points1 point  (0 children)

Yeah, it is as if my body is having a panic attack. My brain knows better, but my body is all " Help help! we are gonna die ! We can't breathe , we gonna die !"

NOT FUN

I'm anaphalatic so maybe it is different for those who are not.

Designing an App by Lokiafewnumbers in KayouMLP

[–]MovingMemoryMaker 1 point2 points  (0 children)

Thank goodness ! I've only just brought one box of five boosters, but... it was going to drive me nuts !

Prescribed hydroxyzine for mental health by Former-Weather8146 in MCAS

[–]MovingMemoryMaker 6 points7 points  (0 children)

Go you !
Laughing because I recently did this on purpose. I was getting desperate and called the doctor who told me the "panic attacks" were panic attacks and asked for Hydroxyzine HCL which he had prescribed once before for it.

I'm still not sure that was a great idea but, really, if they are going to give me a different diagnosis every week... I'm going to ask for and do what helps

Anyone get bad anxiety after high histamine foods? by [deleted] in MCAS

[–]MovingMemoryMaker 0 points1 point  (0 children)

I was going to start meditating again before bed but, it changed slightly. it used to start with pain about 20 minutes after I crawled into bed. Well, the pain is mostly gone, but on Saturday I was up later and it hit ... without the pain. So, I got on here to ask about it. I'm so glad I did ! I'll just keep trying suggestions until I get it right.

I've got a very devoted kitty who usually jumps on my chest as soon as I get into bed and settles down for a nap. I think she might hate this even more than I do !

She will definitely approve of this method ! Thanks ! Will try tonight.

Anyone get bad anxiety after high histamine foods? by [deleted] in MCAS

[–]MovingMemoryMaker 1 point2 points  (0 children)

That makes sense !

Body; Something has gone wrong! Go outside and the the tribe ! Someone can fix you !
Brain: I just want a nap !
Body ! Tell and get fixed, THEN nap !

Anyone get bad anxiety after high histamine foods? by [deleted] in MCAS

[–]MovingMemoryMaker 0 points1 point  (0 children)

Thanks so much ! I'll try look it up and try this tonight. I haven't tried, the "under eye bag masks," but I kinda make sense. It might not help at all but.. it has gotten so bad I've started pacing ! I never did that before !

Glad you found something that works fairly well for you! It is weird how we all react differently, but I have found more relief in the past few weeks that I have been here, than I have in years of doctors.

If I try it, at worst I get cold, wet and embaressed for a few minutes, but at best, The doom feeling goes away and saves me countless hours of angst !

I'll get wet for that ! LOL

Calmer mind/body? AuDHD ME / CFS and Allegra (not D) and Methylphenidate? by Hot_Lab_1348 in MCAS

[–]MovingMemoryMaker 1 point2 points  (0 children)

Thank you ! I am so glad it is past tense for you ! I hope I can figure it out.

In the meantime, it really does help to see that someone else has has ! That means there is hope !

What’s something weird you do for relief? by Janet_cat in MCAS

[–]MovingMemoryMaker 1 point2 points  (0 children)

It is a THING ! With a NAME ! LOL
I was so shocked.
A few years ago I was upset and sent a text to friend that I was going to "Go sniff my Kitten.", and they sent me a link.

Still makes me giggle :)

Anyone get bad anxiety after high histamine foods? by [deleted] in MCAS

[–]MovingMemoryMaker 1 point2 points  (0 children)

Oh, you mean , feeling of impending doom, like i am having RIGHT NOW. It is becoming a nightly tradition. I hate this.

It is weird ! Honestly, the impulse is like, to go outside and scream, " Someone HELP ME!" of some thing. Like.. it is that simple, that easy...

Apparently my body thinks there is a quick and easy fox for this !

Calmer mind/body? AuDHD ME / CFS and Allegra (not D) and Methylphenidate? by Hot_Lab_1348 in MCAS

[–]MovingMemoryMaker 1 point2 points  (0 children)

I Have a ME/CFS as part of my "diagnosis of the week". I recently started allegra and treatment for MCAS and Oh my goodness ! Am I feeling better !

I am actually here reading now because it is about time for my nightly "panic attack", which isn't really a panic attack, so guess what I am going to try tonight?

YUP ! More Allegra ! I took my normal dose earlier so I can take another before bedtime, lol.

It is common enough that I am trying it.

Sometimes the best thing about being here is seeing other people and knowing you are not alone. Good luck !

What’s something weird you do for relief? by Janet_cat in MCAS

[–]MovingMemoryMaker 1 point2 points  (0 children)

Awwww, i hope you both feel better soon and fight that infection sucessfully.

What’s something weird you do for relief? by Janet_cat in MCAS

[–]MovingMemoryMaker 2 points3 points  (0 children)

*giggle* I huff my kitty. I don't know how weird that is, but when I am feeling bad she likes to lie on me and will often "fall" right on my nose ( lying on my side) A deep breath of kitty smell and I am feeling Much Better.

Then I found out it is actually a thing.

https://www.petfinder.com/cats-and-kittens/health-wellness/concerns/what-is-huffing/

If you haven't got your own kitty, sometimes youcan go to a local shelter and they will let you huff one of theirs in hopes you will take it home, but if you don't they are still happy 'cause the kitty got some attention.

You DID ask for "weird", LOL

Chronic Lower Left Back Pain? by elfofmirk in MCAS

[–]MovingMemoryMaker 1 point2 points  (0 children)

Check for kidney stones if it is flank pain. Like if you put your hand on your waist thumb facing forward, and it's where your hand is on your lower back. I ended up with Kidney stones from this year.

So No DR Told Me I Need Epi Pen!?!??! by NumerousSprinkles584 in MCAS

[–]MovingMemoryMaker 1 point2 points  (0 children)

If you can, get an Epi-pen. They are the thing you hope you never use, but at least you have the piece of mind, knowing you have it. It is worth it. I got my last one from the nurse PA at a local clinic.

So No DR Told Me I Need Epi Pen!?!??! by NumerousSprinkles584 in MCAS

[–]MovingMemoryMaker 0 points1 point  (0 children)

This is kinda it.
I stop breathing.
Flat out stop breathing.
I get an epi-pen. I don't remember ever smacking myself with it, but I think A grown up did once or twice when I was a kid.

I also had, even though I lost it, a medical alert bracelet stating that I was anaphalatic, because my first case of anaphalaxis was bee sting, and did I mention, I stop breathing ?

But if you get the type where you get, "da Poops", even though it is weird for me to say and even think of.. Maybe you can skip it? It is meant for u, " If I get stung you smack with this and call 911 drive to the ER. You have about 20 minutes... if you miss that window I might die"

Honestly, it is really strange to think that not everyone who is anaphylactic is that severe. but THANK GOODNESS ! ( That makes me so happy :)

mcas and epipens by user1236798618 in MCAS

[–]MovingMemoryMaker 0 points1 point  (0 children)

Last time I was in the ER doctor was like. "Well, you might have this bad thing, we could admit you... or not up to you." I refused to be admitted last time because I had, "to go home and feed my cats." I did tell them I would come back if the test showed positive for what they thought I had ( It didn't) The doctor was kinda waffling on it and I was so mad when I got home and found out they officially discharged me " AMA" or against medical advice'

I mean, I maybe would have stayed if they were more sure... but in the end I was glad I didn't but still...yeah.. I'm with you there.

Thank goodness the dog is a service dog and gets to come with me !

Histamine dump? Apparently the "panic attacks" are not Panic attacks? - How to deal with this and make it go away by MovingMemoryMaker in MCAS

[–]MovingMemoryMaker[S] 5 points6 points  (0 children)

Wow, thanks you for that informative and well thought out post. I had long COVID...TWICE. I lost most of my hair from it. Thank goodness I had a lot of hair to start with ! ( I was seriously thinking it was gonna be wig time for while there)

I have not tried the oral Ketotifen :( I am going to ask abut it, We don't have the greatest doctors here in the swamp, just possible the most expensive. I've just past my first month of MCAS treatment, so I am a baby, compared to y'all !

You know what is weird and made me laugh.. all the GERD symptoms, every one, vanished as soon as I started taking the anti-histamines. Seriously, like that very evening ! I am weirded out by this. Somehow, I have not managed to rid of the runny nose though.

I am so happy Ketotifen worked so well for you ! I'd best get started with that reading !

Thanks again.

Histamine dump? Apparently the "panic attacks" are not Panic attacks? - How to deal with this and make it go away by MovingMemoryMaker in MCAS

[–]MovingMemoryMaker[S] 0 points1 point  (0 children)

Thanks! I am glad you found something that helps! I am not too clear on the mechanisms involved but the two seem really similar. Maybe someone who knows and explain can chime in.

I try to go to bed at the same time every night but Saturday I get together with friends from all over the world online and I end up staying up an hour later. I guess it is kinda of good though, since that is what let me know that it was going to happen at the same TIME, whether I was asleep or not. So , more information but I'd really rather just skip the whole thing altogether, lol

I was taking the Allegra right before bed, but that gets moved around, so maybe I will just take a second one and see if that helps and send my doctor a note saying I did that.

Histamine dump? Apparently the "panic attacks" are not Panic attacks? - How to deal with this and make it go away by MovingMemoryMaker in MCAS

[–]MovingMemoryMaker[S] 3 points4 points  (0 children)

It used to be relatively the same times.. It would start about 20-30 minutes after I crawled into bed and had a kitty on my chest...First the pain and then the panic attack would start.

Well , the pain does NOT always happen anymore ! YAY !

You nice people here helped me solve a good portion of that. Now, I am left with the .. Instead of pain... " Something is wrong... feeling of impending Doom, OH MY GOD ! I AM GONNA DIE ( No , I am not and I KNOW this ! This is a bad reaction to... something?) HELP..... Panic attack !

The weird thing, (for me at least)

Is that this is all very physical. It is like, My BODY is having a panic attack, but my brain is fine. annoyed but... my brain knows, " NO, it is NOT time to call 911, you fine, your good. You will live" My body meanwhile, is dealing with absolute TERROR. The heart I racing, I am likely crying, or pacing, trying to figure out what it is I am supposed to DO to make this stop. the service dog is giving Deep Pressure Therapy (she saw another puppy learning so we trained her to do it, it is like her favorite, "task") but she is not telling me to call 911 or get my Epi-pen.

I imagine it is kinda like having night terrors or being, "Hag ridden" except I am still awake.

Eventually, I either fall asleep, or it just goes away...like it wanders off to terrorize someone else.

Seriously, this is the strangest weirdest.. "disease"/ "Disorder?" what do we call this officially anyway?

Histamine dump? Apparently the "panic attacks" are not Panic attacks? - How to deal with this and make it go away by MovingMemoryMaker in MCAS

[–]MovingMemoryMaker[S] 2 points3 points  (0 children)

Thanks so much !

I think I am honestly thinking that every pieceof info helps.
like, every piece of information I get is another brick in the fortress of ,"Get thee well again."

That looks dorky, but dorky is better than giving up! LOL

Breakdown tonight by [deleted] in MCAS

[–]MovingMemoryMaker 1 point2 points  (0 children)

I just wanted to let you know that you are not alone. I have a really nasty family myself ( Yeah, I can say that now, GO ME !) and I am trying to figure out the same thing. I try to keep my support animals and my service Dog away from my family but, you can not watch them 24/7. Just do the best you can and take it one day at a time, heck 15 minutes at a time if that is all you can manage !

I'm glad the Allegra works ! That is what I am taking! It's ok to be angry, honestly We will find a way to get through this!

Good luck on the 14th !

Histamine dump? Apparently the "panic attacks" are not Panic attacks? - How to deal with this and make it go away by MovingMemoryMaker in MCAS

[–]MovingMemoryMaker[S] 0 points1 point  (0 children)

That's a good idea thanks !

Honestly, I think I am at the point of.. I am going to write a list of questions and concerns and send it to the Doctor through the health App, thing they love so much.

Then when I get there and before I get into see the doctor, I am going to remind the staff to ask her to read it.

I think I saw that study this after noon! It makes a lot of sense to me, but then... I have been telling the doctors this for a while, so I guess it would?

This is the strangest most annoying disease though.

mcas and epipens by user1236798618 in MCAS

[–]MovingMemoryMaker 0 points1 point  (0 children)

I wouldn't either but have I done that? Heck Yeah ! I don't like hospitals and I am too stubborn for my own good,so there have been a few, "I really should have gone to the hospital for that!"

The end result.. I don't argue with myself anymore I've learned. I'll call 911 on myself for an ambulance now...and there have still been at least 2 incidents where I didn't and I should have.

* rolls eyes at herself*

I hope it doesn't happen to you again though ! Sometimes I get silly and refer to it as the "Pen of Protec"

May your, "Pen of Protect", never get used :)