Friday, December 08, 2006

Chills

Haven't been able to find any reference about the weirdness I described in my last post, but I did find the following. I have experienced this also, I can't even say how many times. It's funny how once something like this happens a few times, you start to not notice it when it does. Especially when you're functioning on about half brain capacity than previously. Hopefully, keeping this blog will help me keep a handle on things.

Question: Every time I have had an attack, I have terrible shaking, as if terribly chilled, although I may or may not feel chilled at the time. I totally cannot control it no matter how hard I try to stop shaking. What is the cause of this?
Moderator: And actually that question several people asked. We have combined it.
Dr. Theoharides: I don’t know the answer but I am confused by the question. Chills are one thing, shaking is another. Are we asking chills, meaning someone feeling cold or trembling because they feel cold? Or shaking because….
Moderator: They look like they are having chills but they are not, they actually are not feeling cold, they are just shaking. Is there anybody here that asked that question that could clarify it?
Audience member: I have that.
Audience member: I have that too.
Audience member: I have that.
Laughter in the group.
Moderator: Do you actually feel cold?
Audience member: What it is, is that if someone is actually looking at you, they would think that you are cold, but you are not really cold.
Audience member: Have you taken your blood pressure when this happens?
Audience member: Yes, and it drops.
Dr. Castells: We don’t really know what it is due to but that question is very important. If the blood pressure is going down, then there is poor perfusion to the muscles, in the legs, in the extremities, in some parts of the body so the body is actually trying to help that the blood vessels can continue to provide circulation to those muscles and that might induce some twitching of the muscles so the blood pressure and the release of histamines and the other mediators to the blood stream can actually induce those rigors.. Truly we don’t have any animal data to support which of the mediators or which one it would be. I have encountered the phenomenon in a lot of my patients with mast cell activation syndrome, where they start to shake but shortly after they recover from the profound attack of hypotension. And this is the only explanation, why the blood pressure is recovering. The muscles are trying to get the blood flow continued.
Dr. Butterfield: I just want to use this as an opportunity to suggest having a mediator kit for these times. Doing a sample, that is only way we find out. You have to do the basic stuff here. Basic information.

3 comments:

Anonymous said...

Hi Kat!!
'
Long time, no see and so on.. I had to comment, to this text, cause couple years ago i had an attack, which wasnt identified as a part of mastocytosis then. And after attack my bp was very low and i started to shake and shake..u get the picture probaply. I tried to stop myself and was so embarrased when they were trying to take ekg and i was just shaking.

Now I understand why! Thanks, Kat <3

I've had my bone scan and bone marrow biopsy and will have the results end of this month. Take care!!

Anonymous said...

My friend is having troubk e finding clothing and shies she doest react to...any suggestions?

Anonymous said...

Sorry trouble finding shoes and clothing.