Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Acute Masto Episode http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1379466698 Message started by starfish on 09/17/13 at 14:11:38

Title: Acute Masto Episode
Post by starfish on 09/17/13 at 14:11:38

I have had SM for years...high tryptase, TMEP, BMB indicated mutation. So, when I have an acute episode... Face red, either breathing hard or short and shallow... I go like catatonic ... Arms feel numb, insides feel cold. I feel like I can't talk... My question is, exactly what is that? I take benedryl and/or gastrocrom. I just want to understand. Very scary for my family members.

Title: Re: Acute Masto Episode
Post by peter on 09/17/13 at 20:29:23

Good question my doctor said it is exstream physical hyposensertivity
Where every signal in the body is amplified mast cell activation at a lowe level
I think thay are still looking I no I was very sensitive to heat cold pain and
Emotional unstable

Title: Re: Acute Masto Episode
Post by starfish on 09/19/13 at 04:30:26

Anyone else have these symptoms?

Title: Re: Acute Masto Episode
Post by starfish on 09/24/13 at 14:59:46

Crickets...... Really, no one else? :-[

Title: Re: Acute Masto Episode
Post by DeborahW, Founder on 09/24/13 at 16:07:26

Sorry no one is around or else they just don't know. I would say that you are describing a level of what I regard as anaphylaxis (or headed right into it). Do you know what to do when those symptoms appear, such as taking extra meds?

Title: Re: Acute Masto Episode
Post by angelloz on 09/25/13 at 10:26:43

Never fear! I have had this too. To me it feels like my body is shutting down...and yes I agree it is so scary!

Title: Re: Acute Masto Episode
Post by Lisa on 09/25/13 at 17:01:53

Hi Star!

Sorry, I've been absent! I'm having the WORST time with internet issues and have yet to resolve them and they are keeping me from getting online here much.

I've got a theory about this situation cause I've felt some of this too. I think that the nervous system is just being so overwhelmed and inundated by mediators that it's like it's short circuiting. My experience is that epinephrine resolves this. IV antihistamines will also do it even though it's not as effective. From the research I've been reading, an IV drip of epinefrine is the way to deal with this a - 4-6 hour drip.

Is there anything they can do for us to prevent this? Good question! I wish!!!!! Yet the shame is that I don't think the researchers have really even considered the neurological effects the mediators have on us. Their hands are way too full and it will take neurologists and doctors interested in purinergics to find answers for us!!

hope this helps!!

Lisa

Title: Re: Acute Masto Episode
Post by starfish on 09/27/13 at 04:20:11

Thanks.... I would be epi penning every few days :o. I appreciate your replies.

Title: Re: Acute Masto Episode
Post by Lisa on 09/27/13 at 18:17:09

Star, I've been studying this for YEARS now and I've raised a theory as to what it could be, but until I've got some neurologist researchers interested to look into this, I remain without answers and treatment unless it's an attack which takes me to the ER where I can be put on an infusion of either epi or antihistamines. I will go through "syncope" for hours on end !!! It's called syncope but my doctors and I have come to the conclusion that this is wrong, that it's in truth a semi-conscious or fully unconscious state created by the mediators themselves!!! I've got a possible investigation by a neurologist her in Brazil, but I'm on hold for now. If they can test me we may be able to find mor e clarification as to what exactly it is! Upon doing this it may open up treatment options-what we have now just doesn't work!! Oral antihistamines are as effective as Mentos!

Pray I can get the support for we sure are needing ANSWERS as to what this is and how to treat it!!!!!!!! :(

Lisa

Title: Re: Acute Masto Episode
Post by kesasur on 10/01/13 at 08:25:15

Hi,

I have not had this to the full extent of being catatonic or not being able to talk but my last 2 episodes (one was last night! ugh..) involved a significant amount of vertigo and lightheadedness that I haven't had before. I also get that really cold sensation that starts in my chest and abdomen and runs down my arms. Last night I was cold yet sweating at the same time. I had some chest congestion and pretty foggy thinking.
Normally I'll also get tachycardia- but I think the allegra, gastrochrom, and clonapin helped with that.
Since I'm new to this diagnosis I was sort of at a loss as to what to "add" to my current regimen....I monitored my BP and it didn't get lower. The time passed and I was able to sleep and when I woke up I was alright except for the fatigue.
Yup, I like to know more about the cold chest and neuro stuff too!

Kelley

Title: Re: Acute Masto Episode
Post by starfish on 10/01/13 at 09:45:56

I take benedryl and gastrocrom. Although the MD sd gastrocrom would not be effective in that instance????