Re: Re: Allergy Testing & Anaphylaxis

May 30, 2001

Hi There. I just found this website last evening and amazingly have been

looking for something like this for years.To get to the point I have been

diagnosed with angioedema and urticaria just recently after having eleven

years of severe attacks of swelling face tongue and all body areas as well

as urticaria. Countless trips to ER until I got married four years ago and

my husband now gives me the epi-pen instead of me always rushing into the

ER. I have been on the HAE website and learned an incredible amount about

the angioedema. Have had the C1test last month and although my father has

had limited angioedema the doctor says my C1 is normal so he is considering

it either chronic idiopathic allergy form or acquired form meaning

something else is happening in the lymphoproliferative area. I have a very

slightly raised igm blood protein. Now he wants a second bonemarrow done.

However the urticaria has never been addressed. I have been to doctors all

over Canada and also in Texas, had numerous tests and just keep being told

that I am a mystery person. One doctor said he had never seen anything like

it in his life when I went with a giant hive (12 inches by 5 inches on the

waistline) I get them regularly along with facial swellings, mouth

swellings, excruciating stomach stabbing pain attacks, flushing and more as

well as total " out of it " feeling preceding these attacks.I have asthma and

severe allergies that I know cause most of this. I am just curious since I

have to take so many epi-pens what that other inhaler (chromolyn) you

mentioned is. I use to be able to get a epinephrine inhaler here but they

were taken off the market. It always worked when my mouth started to

swell.Thank you for reading my letter and I certainly appreciate this

website.

Eleanor

Re: Allergy Testing & Anaphylaxis

> Hi and All,

> Jackie has done a GREAT job explaining Anaphlaxis...... but I want to

> give you one more prespective...... My daughter , who shocked

> on a daily basis sometimes several times a day, RARELY took

> the " airway " route. Her very first sign was often hiving or

> flushing, (though sometimes this didn't happen first)with a blood

> pressure drop. What this looked like was she became almost " zombie "

> like, unresponsive and often had a blank stare. I would start

> talking to her and say, " , you all right? " She said that during

> these times she could hear me, but it was like my voice was way out

> in the distance or like she was at the end of a tunnel and she was

> just so tired she couldn't answer, all she wanted to do is sleep. If

> she was standing when this happened her legs would often give way....

> her blood pressure was too low to support standing. My first

> response was to slap a self inflating b/p cuff on her to measure her

> b/p. Often it had fallen to 60/40 (normal is about 120/80). To

> compensate for this kind of a blood pressure drop her heart rate

> would go way up.

>

> The bio-physics of this is, when someone goes into Anaphylaxis the

> mast cells fire really quickly causing the blood vessels to expand.

> As the blood vessels dialate, the heart loses blood volume passing

> through it becauses the " pipes " which contain the blood have become

> much bigger in diameter, so they slow the rate of blood which passes

> through the heart. This creates a drop in blood pressure. And the

> heart in order to compensate for the lack of blood volume passing

> through it increases its beat rate to bring more blood into itself.

> When this happens the blood is forced to race back to the heart...

> then the victim can go into what I call a Yo Yo cycle, where the b/p

> rises and the heart rate drops, but if the pipes are still expanding

> this can start the whole cycle over or (rarely) it can cause the b/p

> to radically elevate and the heart rate to drop or it can produce

> vascular collapse. This IS a crisis..... At the first signs she

> was going into crisis we used a cromolyn inhaler to try to get her

> reversed, because repeated epi can be hard on the heart.

>

> Her next symptom after the b/p fall and the heart rate raise was a

> feeling of " impending doom " , typical of someone whose heart rate is

> going through the roof. The same girl which minutes before was a

> limp, non-responsive dish rag..... would start to pace and say " my

> heart feels like it's going to beat out of my chest " . She would

> often complain of her ears ringing, her mouth feeling " funny " like

> she had cotton balls in it and her face going numb. We went through

> the first several of these, not knowing that she was a " shocker " ,

> thankfully, her blood vessels never collapsed on us and we found

> someone who knew what to do.... her first one of these happened while

> swimming..... scary business.

>

> Judging by what you describe Alena doing today...... I think it very

> much sounds like Anaphylaxis. I hope this helps, Hugs Myra

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribeegroups

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

May 30, 2001

Hi Eleanor,

Welcome to our itchy family ! I hope you find this list as helpful as I have.

There are a lot of wonderful, helpful people on here. Don't be afraid to ask

questions, they are very knowledgeable and you will learn tons ! Good luck,

Ann from Pennsylvania

Eleanor Connors wrote:

> Hi There. I just found this website last evening and amazingly have been

> looking for something like this for years.To get to the point I have been

> diagnosed with angioedema and urticaria just recently after having eleven

> years of severe attacks of swelling face tongue and all body areas as well

> as urticaria. Countless trips to ER until I got married four years ago and

> my husband now gives me the epi-pen instead of me always rushing into the

> ER. I have been on the HAE website and learned an incredible amount about

> the angioedema. Have had the C1test last month and although my father has

> had limited angioedema the doctor says my C1 is normal so he is considering

> it either chronic idiopathic allergy form or acquired form meaning

> something else is happening in the lymphoproliferative area. I have a very

> slightly raised igm blood protein. Now he wants a second bonemarrow done.

> However the urticaria has never been addressed. I have been to doctors all

> over Canada and also in Texas, had numerous tests and just keep being told

> that I am a mystery person. One doctor said he had never seen anything like

> it in his life when I went with a giant hive (12 inches by 5 inches on the

> waistline) I get them regularly along with facial swellings, mouth

> swellings, excruciating stomach stabbing pain attacks, flushing and more as

> well as total " out of it " feeling preceding these attacks.I have asthma and

> severe allergies that I know cause most of this. I am just curious since I

> have to take so many epi-pens what that other inhaler (chromolyn) you

> mentioned is. I use to be able to get a epinephrine inhaler here but they

> were taken off the market. It always worked when my mouth started to

> swell.Thank you for reading my letter and I certainly appreciate this

> website.

> Eleanor

> Re: Allergy Testing & Anaphylaxis

>

> > Hi and All,

> > Jackie has done a GREAT job explaining Anaphlaxis...... but I want to

> > give you one more prespective...... My daughter , who shocked

> > on a daily basis sometimes several times a day, RARELY took

> > the " airway " route. Her very first sign was often hiving or

> > flushing, (though sometimes this didn't happen first)with a blood

> > pressure drop. What this looked like was she became almost " zombie "

> > like, unresponsive and often had a blank stare. I would start

> > talking to her and say, " , you all right? " She said that during

> > these times she could hear me, but it was like my voice was way out

> > in the distance or like she was at the end of a tunnel and she was

> > just so tired she couldn't answer, all she wanted to do is sleep. If

> > she was standing when this happened her legs would often give way....

> > her blood pressure was too low to support standing. My first

> > response was to slap a self inflating b/p cuff on her to measure her

> > b/p. Often it had fallen to 60/40 (normal is about 120/80). To

> > compensate for this kind of a blood pressure drop her heart rate

> > would go way up.

> >

> > The bio-physics of this is, when someone goes into Anaphylaxis the

> > mast cells fire really quickly causing the blood vessels to expand.

> > As the blood vessels dialate, the heart loses blood volume passing

> > through it becauses the " pipes " which contain the blood have become

> > much bigger in diameter, so they slow the rate of blood which passes

> > through the heart. This creates a drop in blood pressure. And the

> > heart in order to compensate for the lack of blood volume passing

> > through it increases its beat rate to bring more blood into itself.

> > When this happens the blood is forced to race back to the heart...

> > then the victim can go into what I call a Yo Yo cycle, where the b/p

> > rises and the heart rate drops, but if the pipes are still expanding

> > this can start the whole cycle over or (rarely) it can cause the b/p

> > to radically elevate and the heart rate to drop or it can produce

> > vascular collapse. This IS a crisis..... At the first signs she

> > was going into crisis we used a cromolyn inhaler to try to get her

> > reversed, because repeated epi can be hard on the heart.

> >

> > Her next symptom after the b/p fall and the heart rate raise was a

> > feeling of " impending doom " , typical of someone whose heart rate is

> > going through the roof. The same girl which minutes before was a

> > limp, non-responsive dish rag..... would start to pace and say " my

> > heart feels like it's going to beat out of my chest " . She would

> > often complain of her ears ringing, her mouth feeling " funny " like

> > she had cotton balls in it and her face going numb. We went through

> > the first several of these, not knowing that she was a " shocker " ,

> > thankfully, her blood vessels never collapsed on us and we found

> > someone who knew what to do.... her first one of these happened while

> > swimming..... scary business.

> >

> > Judging by what you describe Alena doing today...... I think it very

> > much sounds like Anaphylaxis. I hope this helps, Hugs Myra

> >

> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > If you do wish to unsubscribe then you can click on the following link:

> > urticaria-unsubscribeegroups

> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> >

> > This list is in the service of those who suffer from Chronic Urticaria

> (hives). We strive to support and lift each other as a worldwide

> cyber-family.

> >

> > We share whatever needs to be shared to help one another in our struggle

> with Chronic Urticria. Information provided in this forum is not to be taken

> as medical advice. Always consult your health professional before trying

> anything new.

> >

> > Any posting that is off the main topic of Chronic Urticaria, we post with

> a prefix of NCU -. This is done out of respect for those who do not wish to

> read such postings.

> >

May 30, 2001

Myra this is a big help!! I am going to buy a bp cuff today for her. I

can't believe how naive I was thinking someone would have to literally be

choking/not breathing to be going to into shock. Might of helped if one of

the many doctors she has seen had told me but non the less now I know

certainly that is what happened and I can recall other times it has happened

now too. Thank you, Thank you, Thank you!! Love, ~Alena's Mom