Hi Robin!!!

What you describe is indeed what we go through when we are in the inicial stages of Anaphylaxis!!!  If it progresses any further, you'd be in full anaphylaxis for the symptoms of anaphylaxis is 2 or any of the 5 system involvement that being skin, respiratory, cardiovascular, gastrointestinal and neurological.   Having skin involvement is 99% of the time the very first and therefore considered the required symptom involvement.  

So, in your descriptionyou already have that of the skin involvement and gastrointestinal with that of the flushing/burning skin and nausea.  Then when you hit with the fatigue, this is likely to be the cardiovascular and neurological involvement.  The "throat grabbing issues" and your lips and eyes being swollen are very serious symptoms caused by edema and this means that the progression of your symptoms are going towards a dangerous form of anaphylaxis.   These are the initial stages of anaphylaxis YES!!!!  You are showing very serious progression and the only thing which has stopped it from progressing further is because you laid down and stopped any physical activity which was making it progress.  

You did not take any extra meds, did you?  You've not been given instructions for how to interfere with these reactions, have you?  TYPICAL!!!

Robin, your tryptase is above "normal" even though it's within the normal ranges at 2.  You see, there are some other things which will raise tryptase levels above 0, which is where it's supposed to be if you were really "normal".  There are some things like heart disease and even lymphoma, I believe, which will raise the tryptase up to as much 10 or 11, but the only thing that will raise tryptase way high is anaphylaxis and mastocytosis.  This is why if your tryptase isn't way high, above 15 then it's not considered diagnostic for mastocytosis.  However, that is the systemic mastocytosis form which is known to jack it up so high.  It has finally been recognized that many MCAD patients will have their tryptase above the 0 range, but still within the "normal" ranges.  You see, ZERO is supposed to be the tryptase level for a normal, healthy person.  Having it go above zero means something is going on, but what, they don't always know.  But, our researchers are now recognizing that there are many of us who do have raised levels but still normal, raised levels.   Mine is 4.4ng.  We know that I am MCAD.  My urine histamines are elevated, which confirms that I have actual mast cell activation going on.  But the low tryptase means that I don't have a large amount of invasive mast cells in my tissues.  So, it's GOOD!  Frustrating for my doctors, but GOOD for me!  

Now, you said you are taking Zyrtec and Claritin.  Well, Claritin isn't the best for us and most of our doctors put us on Zyrtec or Allegra.  Your doses may not be sufficient of zyrtec and that's why you're having issues.  You also need to be on zantac/ranitidine for that's an H2 blocker and will deal with the GI issues.  You also need a mast cell stabilizer like Ketotifen or Gastrocrom.  

As to being on the antihistamines for your testing, it's okay.  They didn't influence your test results and you really shouldn't be taken of of them but for skin testing.

Now, Robin, when you get into a spot like you did today, you need to take extra doses of your Zyrtec.  You're not properly medicated and you've not been taught how to use them properly either.  We masto patients must take our antihistamines 2x a day this is because these meds are 12 hour duration.  You don't want to be taking any extended duration meds for you need the full strength all the time and the 24 hour ones may end up being too weak during certain periods.  But independant of when you took your meds, when you get into a situation like you did today and you begin feeling that flushing, you need stop it right there and not let the reaction go past the flushing for the snow ball has begun rolling and it's only going to pick up substance and speed.  So, in order to cut the reaction on the spot you need to hit in with your zyrtec right away - just take an extra dose right then and there!  It doesn't matter if you'd only taken your morning dose an hour before, if you begin reacting you've got to stop it and so you hit in with another dose.  You may want to get some liquid benedryl and take about 2-3 tablespoons of it or more in order to hit in fast.  If you don't feel better within about 20 minutes then you take yet another dose of the zyrtec!   This is what we have to do!!   If you trigger from the heat then you need to take a cool shower and cool your body core temperature down.  Get into a really cold AC room or a pool or under a fan, anything to help cool your body down for the heat is a major and dangerous trigger for us.  

Now, we do have some members here who are from the PA area.  Yet, you may also want to google Penn State and Mastocytosis to see if you find anybody there who knows masto.   You mentioned that you think you Diffuse UP, then you need a dermatologist.  Those spots which itch and urticate need to be biopsied, along with the TMEP, for that most likely will be your diagnosis right there!!!  If you can scratch your skin and it hives up, that is the Darrier sign and it too should be biopsied for it most likely will reveal the mast cells!!!   So, try googling Penn State, Dermatologist, UP and Mastoctysis and you may come up with some research articles and these will give you names of doctors there and you can then contact them asking for them to see you.  

If you can get the diagnosis of UP, then you have your diagnosis.  Then, that will make the low tryptase and lack of biomarkers make total sense in that it indicates that your UP has not gone systemic.  WONDERUL!

As to the Atarax, not all of us can handle every single kind of antihistamine and we have to pick and choose as to which one works best for us.  

I hope this helps!!!


Lisa

Robin, if allegra gave you a headache, then just stick with the Zyrtec, it's good.  Claratin is weak, but it's still an antihistamine, so don't take it out, just up your Zyrtec if you can.  Also, since Ranatidine/Zantac is OTC, I suggest you add it to your regimine at least 150/mg morning and evening and see if this helps.  You may need to add a dose of antihistamine in the afternoon about 1-2 pm, some of us do that to get us through the day.  Perhaps that's when you can add the extra zyrtec.  

But don't forget to use that antihistamine when you get into trouble, it's the extra dose that is indispensible and gets us out of trouble.  It's a dose that is totally out of your daily regimine of meds, understand.  It's meant as an SOS in emergency.  When we get into trouble, we can use our epi's but that's when you're in big trouble.  So, when the trouble isn't so big, and you want to stop the reacting, then you take those extra doses that you would not normally take if your day is going well.  

Lisa

One thing to realize is that you aren't positive if the alleges caused the headache. We can get histamine headaches, and if you were already having symptoms and then took alleges, who knows if that headache wasn't just a symptom and not related to the allegra. You could try on a day you are feeling well, take an allegra and see how you do. If you can take this med, it is a powerful one that can help. So dont eliminate it as a choice without testing.

You are definitely experiencing anaphylactic symptoms. Taking a zyrtec in the morning and evening will help. If you can take allegra, you could take an allegra in morning and zyrtec in evening. Even then you can double those if you start getting sick. Since you are reacting to heat, whenever you get ill, get under some strong air conditioning quickly. Also ice packs on the neck and wrists can help.

I have many times halted anaphylactic attacks for myself. It just takes learning how to do it. (I also carry 2 epi pens at all times. Never had to use one, though.)