Help Me W/my Mast Cell Meds!!!!

[Godsgal]

ER trip tonight....awful sharp chest pain accompanying allergic reaction. I have significantly upped my meds in the past few months but I'm really struggling with some CRAZY allergies/reactions. I only have around 8 things I can eat, can't wear polyester anymore, my bras bother me too, and I was drinking water today and that was making my mouth go numb. Soaps, deodorants, toothpaste, chemicals, scents are all making me extremely ill and being in public is quite the challenge. The computer is now making me sick when I get on it and that is why I haven't been on here as much and I'm sorry I can't support and help more on here.

My meds are Singulair 10 mg twice a day, Midodrine 5 mg 3 times a day, Zyrtec 5mg in the am. & afternoon, 10 mg of zyrtec at night, 150mg of zantac twice a day, benadryl throughout the day. I feel like I need more! I'm worn out from having these crazy reactions in front of my boys and going to the ER.

I tried gastrocrom once and I had a major mast cell attack within minutes after taking it. Dr. Afrin keeps mentioning ativan and I'm not quite sure what that is going to do for me at this point but sedate me more.

I would appreciate any help anyone can give! I feel like a little lost child wandering out in the woods and very discouraged right now. Having a low moment but I do know God is with me and I do believe I'll be better one day. I just need to keep the faith and get through this difficult time.

[lieze]

I know how scary it is and this is the crazy part.

I am on NO meds and you and I are the same.

What I think I am finding is that I am having some sensitivity reactions more than allergic reactions.

What foods are you reacting too?

I know what you mean about the water-I drank some straight from the fridge and it seized my whole system up and I felt like I could get no air into the bottom portion of my lungs.

This is scary stuff I've been experiencing it too-it's actually terrifying.

[Godsgal]

I don't know how you don't take meds. I'd be in the hospital within a day I'm sure if I didn't take them. You asked what foods I get those reactions with...more like what foods I don't react too. The only foods I can eat now are potato, turkey, beef, cauliflower, split peas, I'm having a hard time thinking of anything else I can eat without a problem. It's been really tough. That's why I'm begging for help with my meds.

[juliegee]

Sorry, Jared I was very unstable until I added nightly atarax to my regimen. It's a cross between zyrtec & ativan. I use 25mg, which is the equivalent of 2.5 10mg zyrtec, with a sedative added in. It doesn't even make me drowsy. On bad days, I take on in the AM & one at night.

Trust Dr. Afrin. He is very knowledgeable & has your best interests at heart. Ask his opinion of the atarx- it turned my life around.

Hugs-

Julie

[bensman]

Jared,

I am so sorry to hear this. I am not any help with the meds, as I am such a novice to mast cells. But I agree with Julie in reaching out to & trusting Dr. Afrin. I know it is hard to try new meds; I have a med phobia myself. But maybe the next medication will be the answer you are looking for.

I have been praying for you and will continue to do so.

I hope you get some relief soon.

Take care,

Kate

[CharmedLinz]

Don't be afraid of the Atarax!

However make sure you ask for the capsule version. Atarax is actually Hydroxizine and it comes in an HCI or a Pamoate type.

The HCI type is a little flat tablet that tastes horrible and I'm pretty sure it's the additives but I don't break it down right and it doesn't work well.

The Pamoate version is a capsule and works great.

When nothing else works, this stuff does the trick, and I have taken 50mg. at a time during bad episodes.

Anti-Histamines are about the only thing I don't have a reaction too.

Here is my typical Mast Cell Med day.....

10mg Zyrtec in the AM

150mg Ranitidine 2x day.

then from evening until bedtime 75mg of Benadryl, 25mg of Promethazine, and 25mg of Hydroxyzine.

That's just a normal everyday what I have to take, on certain days more Benadryl or more Hydroxyzine is thrown in. I mainly take the Promethazine for nausea even though it is an antihistamine.

Some days I switch the Promethazine for Zofran, just depends on the day.

[gertie]

I'm sorry you're having a bad time. I've been going through the same thing for years. I seem to do better for a few days & then I'm back to eating rice, carrots, & potatoes again. The worst problem I have with the treatment you mentioned is antihistamines cause me to have seizures. I actually feel like I'm allergic to AH. I've tried all of them & had allergic reaction or seizure to all. Good luck.