Mast Cell Disorders Forum - Went into shock again 4 am today

Riverwn

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Went into shock again 4 am today
08/19/11 at 13:48:27

Ive been off the prednisone for 5 days and I knew I wasnt doing well.. everything I ate and drank tasted terrible like someone dumped salt into it and I was sleeping about 85% of the time. About 1am I was itching like crazy, feeling like ants were biting me all over and I broke into hives. I took 80 mg prednisone and 50 mg benadryl and watched tv to be calm (like Debbie says lol).. After a bit I was droosy and wasnt feeling so bad , so I laid down and dosed off..

I woke at 4 am, much worse.. couldnt stop trying to rip my skin
off. I was a bit panicky--I have some pretty violent shocking episodes--so I repeated the last dose and took another 80 mg prednisone and 50 more mg Benadryl and called 911.

When EMTs got here, they recognized me and took my notebook to show it off again ., They lost my blood pressure for about 35 minutes and I saw them panick LOL.. I would lay back to relax and they would shake me and say "Are you going out?" I laughed and said, do I look like it?? I'll let you know if I feel like Im gonna pass out.."

When I got to the hospital the DR was one I didnt know.. He acted like I was a hypochondriac and the EMTs said, "Doc you shoul have seen her half an hour ago, she looked pretty bad" I was doing better with the 2 doses of prednisone and benadryl. The Dr said I already took what he would have given me so we just sat tight to wait and see.. He refused to do a tryptase level. I didnt blink an eye..

It was funny--he tried to give me a lecture on what Mastocytosis is and he acted shocked that I already knew it..I asked him his opinion on IgE mediated reactions and he agreed with my opinion and wanted me to try a new med that clings to IgE and helps stop the action of it with mast cells--but he couldnt remember the name of it.

He released me and asked me why I wasnt on 5 mg of pred a day.. I told him I try to stay off of it as long as possible.. At this point he asked me what I needed and wanted--I just said I need more emergency Prednisone and he gave it to me immediately,. I was released about 7 am today.. and Im sleeping alot so I apologize if I dont answer things right away..
love u all
me

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Starflower FORUM ADVISOR Offline Not a medical doctor Posts: 715 Indiana	Re: Went into shock again 4 am today Reply #1 - 08/19/11 at 15:44:06 Oh Ramona! I'm really sorry to hear that you had another trip to the ER, but it sounds like you handled it in the very best possible way. The medication that doctor was thinking of is Xolair. I don't know if it will help you... or if you can get it... but it's worth a try. Keeping you in my prayers... Heather
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kimtg68 Guru Offline Posts: 545 Alabama	Re: Went into shock again 4 am today Reply #2 - 08/19/11 at 15:55:43 So sorry you went through that Ramona! I got a kick out of the doc attempting to lecture YOU on this disease. Rest well sweetie!
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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: Went into shock again 4 am today Reply #3 - 08/19/11 at 18:49:39 Hey Ramona, So sorry to hear you had another shock! Were you having a bladder infection again? Made me laugh hearing about the ER doc. Funny! I also think it's Xolair, as it's for IgE mediated reactions. It's an injection under the skin. Hope you feel better soon!
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larken

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Re: Went into shock again 4 am today
Reply #4 - 08/20/11 at 22:31:00

Hi Ramona,

I am also sorry to hear about this! Your shocking sounds just miserable.

I read the comments about Xolair and wanted to send a reminder about this study, which I found intriguing:

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1308298645

PM me if you want the full study. I've emailed one of the German authors a few times, since I'm in the Netherlands. He was pretty responsive.

Hopefully you're finding some relief and regaining strength.

Larken

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texan1960

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Re: Went into shock again 4 am today
Reply #5 - 08/21/11 at 01:28:06

Ramonaaa

Sheessh you need a break...I hope you get that Xolair....btw the Singulair added along with zyrtec and zantac are helping me not feel like I am 100 yrs old and about to have a seizure everyday....I am glad everyone steered me to it. Now maybe if I can get Ketotifen, but that is the next project. This shocking all the time thing has got to be tought on your body! I hope you get if figured out soon...

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Riverwn

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Re: Went into shock again 4 am today
Reply #6 - 08/21/11 at 17:55:17

Thanks people

I feel better already knowing you are all here ! Ive been thinking about why I triggered and shocked and I just cant quite figure this one out... but Ive also been thinking about how Dr Castells has been advising her patients to take their meds every 6 hours while awake. Tonight I started feeling a bit bad about 5 hours before my PM doses, so I took a few antihistamines--and i felt so much better... it really felt like a major difference, so Im gonna change my med schedule and pill box for 3 times a day. I'll let you all know if it helps--and I DEFINITELY will talk to my DR about possibly trying the IgE blocking med...
hugs
Ramona

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MastoGem

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Re: Went into shock again 4 am today
Reply #7 - 08/22/11 at 03:13:46

Oh wow Romona!

That sucks that you had to go through that. I'm so sorry. It sounds like whatever you said to that doc made him do a 180 in the way he dealt with you. I'm very impressed! That's not easy. I don't know how you made it around his ego. If you can do that feeling like poop, I have to learn from you!

I really hope taking the meds more often will do the trick. It can be so scary when your body is freaking out for seemingly no reason. I just feel for you having to figure this crap out practically on your own in the middle of feeling like crap. (that's a lot of "crap".) And still you take the time to help people on here. I wish there was something I could do for you.

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"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within." — EKR

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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: Went into shock again 4 am today Reply #8 - 08/22/11 at 07:00:50 Ramona, I really hope the increase in meds helps stabilize you! The heat this summer is a huge stressor, and It wouldn't be surprising if that's contributing to the instability. If it's not an infection, then the new dosing schedule might be very helpful. XO.
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ADork Tutor Offline I Love YaBB 2! Posts: 35 Castle Rock, Co	Re: Went into shock again 4 am today Reply #9 - 08/22/11 at 10:41:50 Ramona, just learning about masto, so I will not event attempt try to decifer most of this.. I will only offer sympathy... and I hope you are feeling better...
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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Went into shock again 4 am today Reply #10 - 08/22/11 at 16:53:27 My thanks and love to you all (smurfy one hehe) I listen to all you say, I promise.. love to you all Ramona
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Riverwn

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Re: Went into shock again 4 am today
Reply #11 - 08/24/11 at 05:06:09

I dont know quite what to say except I went into shock AGAIN.. this morning around 6 am.. Weird, I woke up with a tummy ache, throwing up, both ends at once.. and my sinuses swelled shut--suddenly.. I noticed I couldnt get a deep breath in and my face etc was burning red, swelling very fast,, I took a very big dose of prednisone and benadryl grabbed the phone and dialed 911. The EMTs are so good to me...Im sitting on the potty half dressed crying and they are making me laugh and hugging me.
The hospital staff was great too.. Im just bone tired and need to sleep now. Just wanted to fill you in before I lay down. Take care of yourselces everyone and have a good afternoon.
hugs
Ramona

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Patricia Guiding Light Offline Posts: 164 Washington, dc	Re: Went into shock again 4 am today Reply #12 - 08/24/11 at 06:28:43 Oh my gosh Ramona!!! Thinking of you and sending you prayers and huge hugs!!! Im so sorry that this happened again! Patricia
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MastoGem

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Re: Went into shock again 4 am today
Reply #13 - 08/24/11 at 06:34:37

OH MY GOODNESS! What a nightmare! I'm so sorry!!

Do you have any idea why? This is twice in the early morning, right? Do you think the timing means anything?

And your reactions are so violent. WOW. I'm sure you've already thought about what could be different, etc. etc. DAMN.

Ramona, I'm not that far away if you think of anything I can do. What a sucky week you've had!

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"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within." — EKR

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Joan

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Re: Went into shock again 4 am today
Reply #14 - 08/24/11 at 12:03:11

Ramona,

Something is not right, but I can only guess that it might be an infection or food issue? What do you think could have caused it? Heat? Foods can cause delayed reactions.

You already know this, but for others, histamine is naturally highest in the body during the night and early morning hours. Asthma often flares in the night for that reason.

Hope somebody can figure this out! Wonder if you should stay on prednisone for a few days to cool things off.

XO.

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Joan

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