New and scared

[Nickus88]

Just introducing myself.  I've had two bouts of anaphylaxis, once in April and once last Sunday. Both times were unexplained and happened about 5 minutes after waking and getting out of bed.  I am seeing an allergist Monday and pretty scared of all this happening again. I think that my biggest fear is they won't figure out what caused these violent and severe reactions.

I am 35 and have a bit of history with allergies.  Used to have severe seasonal allergies but they have improved.  I have oral allergy syndrome with apples and other fruits.  I had one other anaphylactic reaction about 10 years ago to CT contrast dye.

Both times I started with severe stomach pain.  The progression moved to vomiting and diarrhea, hives, itching, sweating, swelling, etc.  I was so confused and the first time had no idea what was happening.  I have severe anxiety so it makes this a lot harder.  I'm praying for answers but we shall see I guess.

Thanks for listening!

[GoingNuts]

Welcome Nickus!

Wow, those reactions sound confusing and scary.  Did you seek care at the ER?

I have no advice, just wanted to wish you luck.  Please keep us posted and let us know about your visit to the allergist. 

[Nickus88]

Thank you.  Yes I went to the ER both times.  It was so intense I was sure I was dying the first time.  The tingling was unlike anything I've ever felt and my airways got tight both times as I arrived at the hospital.

[momma2boys]

Welcome! I'm sorry you have to join us. First of all, did they give you a prescription for Epi-pens? That is a must!! If you haven't yet, make sure you don't leave the allergist without one

Do you remember hwhat you ate both days? Maybe we can help narrow it down.

Feel free to ask as many questions as you need, we are happy to help.

[Nikki]

The only similarity between both days was tomato products.  However I had been eating them right along and had no other issues.  The first time I'd had pizza and Sunday I had lasagna.  Other than that nothing the same.  I found it so odd that it happened first thing in the morning before eating or drinking too.  Sunday evening I did feel kinda of blah and didn't eat much for that reason. I had a tuna sandwich for lunch that day. 

It's so confusing and I'm scared to go to bed tonight cuz I'm feeling like I did last Sunday, cough and upset stomach

I do have an epi pen.  But of course my anxiety makes me think it won't work.  We live in the sticks with volunteer ambulance so they take forever.  We can drive to the hospital faster.  But still scary.

[rebekahc]

I'm so sorry you're going through this!! 

There are mast cell disorders that can cause anaphylaxis or anapylactic type reactions without it being a food allergy - it might be something for you to explore since your symptoms are so far removed from eating. 

What are you doing when the reaction starts?  Does it start while you're still in bed or as you get up or as you walk or as you leave the warm bed into a cold room, etc.?  That may also be a clue your doctor can use to narrow down the possibilities.

This article is a good overview of the mast cell symptoms I was referring to above:
http://patient.info/doctor/mastocytosis-and-mast-cell-disorders