@Gingergrrl, I'm sooo sorry you are going through all you are going through. Hang in there. Hugs.
Thanks, Jen, and I so appreciate your PM's and messages and think you are one of the kindest people on this board. You are never bothering me with questions, so please do not ever feel that way, and I wish I could provide better answers!
I was curious about your rescue med. Not that you are recommending it for anyone. Is it Atarax? I think you've posted elsewhere that you have never needed to use an Epi-pen. I'm hoping to never have to use mine either. I have many concerns about using it.
Yes, Atarax, is my rescue med from a compounding pharmacy with no bad fillers and dye-free. There are times it has literally saved my life and am certain without it, I would have progressed to needing an EpiPen (from reactions to food, not smells.) I carry the EpiPen in my purse but have never used it and also have many concerns about it. I do not know why Atarax works so well for me but it not only works, it has no side effects (for me) like Benadryl does.
You have had anaphylactic reactions and your rescue med was enough? I'm just trying to figure all this out as far as possibilities for me. I'm having more and more reactions to things, and will be trying other things that might make my reactions worst. I want to be prepared as possible especially due to my ME/CFS and living situation, it will be hard for me to get help to me or get to help.
I have no idea of his availability (and his name escapes me at the moment) but I know there is an MCAS specialist at Scripps in San Diego in case he might be an option for you? Mine is in LA but if I had not been able to become his patient, the doc at Scripps was my next plan. There are very few of them in our state or in the world.
For me, the Atarax is enough and I've never needed the EpiPen. Last summer I was in the hospital on IV Benadryl and had never even heard of Atarax. When I developed a toxicity to Benadryl (after about two weeks of IV, then shots, plus pills) I thought I was out of luck. It took two months to get appt with my MCAS doc last summer after hospital and he immediately suggested Atarax as the rescue med and also added Ketotefin (and recommended a specific compounding pharmacy) and the two have been a miracle. I often wonder if I would still be alive today without those two meds. But I know everyone is different and some do great with Benadryl, just not me.
How quickly does your rescue med work? Any details that you are comfortable sharing would be helpful.
It literally works in about 15 minutes. But if someone was in stage four anaphylaxis where they could no longer talk or swallow then it is too late and would require Epi. But when I am in stage 1-2 anaphylaxis or even less than this but having a bad reaction, I take one 25 mg Atarax and it turns it around 100% of the time. This is not a large dose but I have always done well with small doses of meds. My doc said you can build up a tolerance so I cannot take it as a daily maintenance med (like I do with Zyrtec, Ketotefin, etc) and save it for rescue situations which for me are usually 3-4x a month. The pills expire b/c they are compounded with no preservatives so I usually end up with about 6-7 pills that I have to discard from each bottle after they expire but it is worth it IMO to not risk it and be safe.
I hope you don't have to wear a respirator, too. Hopefully, your landlord will come through with another unit for you, or another better living situation you can be in soon.
I cannot even express the level that I do not want to have to wear a mask. I started using wheelchair in Oct 2014 thinking it would be temporary and now I am completely dependent on it (motorized chair) even inside the house. Am afraid the mask would be the same. Am not saying this with any judgement, I just will do anything not to progress to needing this if it is possible. We are trying to find another unit in our same bldg but not sure if this is possible.
Do you have a respirator mask? I'm wondering if this is an option for me, if needed. What kind is it and is it sufficient?
I do not have one and have not researched them at all. My MCAS doc said you can order them on-line or get at a hardware store. If I research this and get more info, I will definitely let you know.
That's not good, but it is good to know. I've wondered about that. I try to get away from the smells once the burning starts, or burning and swelling... Lately, I've been wondering if I could stand the burning and other symptoms if they didn't get to bad, if I could stick out smelly situations and be alright. Doesn't sound like a good choice.
He said something along the lines of that the smell gets embedded into the nerve and then the nerves hold the memory of the smell. I was so glad he said it in front of my husband b/c this is one of the hardest things for someone to grasp who does not experience it. I feel like it is comparable to asking someone with a (moderate but not fatal!) peanut allergy to eat a peanut and then just suck it up and tolerate the reaction and hope for the best. No one would ever do that b/c the mechanism of true IgE allergy is understood vs. this sounds so crazy. I know the mechanism will be understood some day, and my MCAS doc understands it now, but he is one in a million.
My sense is that tolerating the burning, swelling, angiodema, third spacing, throat narrowing, and everything that comes along with it is not good for us and it's better to avoid the triggers when you can.
It sounds awful the burning. I only experience this in my mouth, lips and tongue. I understand the retain the smell. It's so strange, even after the smell is gone, it feels like it's sticking to my cells. I can still smell and taste it for hours to days.
My reactions to smells are usually burning in eyes, throat, lungs, and brain and I can start shaking and get confused and agitated very quickly and it takes pure willpower to try to overpower it. Sometimes if I am prepared in advance that there might be a smell, I do better than when I am caught off-guard. And like you, the smell stays in my brain for hours to days after no one else can smell it.
My whole being is screaming out, there has to be more help for you. Please take good care of yourself and keep pressing forward as you do. We all care about you, and want much better days for you. I hope the IVIG treatments get approved and that it will help a lot.
Thank you so much and I am pressing forward as I know you are, too. I am on the edge of getting some real treatments and just need to make sure I have a place to live while I am doing them. Luckily the next hoop I have to jump through with insurance for IVIG will take a few more weeks so am hoping our bldg can find us a new unit in the mean time. The timing is horrible with relatives coming in 1-2 wks for my daughter's graduation and we are in chaos as usual once again.
I wish there was some form of housing for people with wheelchairs and MCAS where you could just live in peace with clean air (no mold, no VOC's, etc) but this is just a dream. Please let me know if I missed anything that you asked
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ETA: I also wish there was something that trained your mast cells and brain to overpower the allergic reactions to food and smells. I do not mean some BS CBT program that denies you are ill versus something that understands the true mechanism and teaches you how to overpower it. But this is also just a dream!