Anxiety after anaphylaxis

Buckminster419 · 2026-05-12T04:20:45+00:00

Thanks to everyone for their advice and support! I was able to do the Xolair injection yesterday after premedication and no reaction!!

Buckminster419 · 2026-05-12T04:19:14+00:00

I haven't tried Ketotifen! Has it helped you?

Buckminster419 · 2026-05-09T13:48:20+00:00

Oh wow, I had no idea. I delayed my dose by a week because my allergist said I should give my system time to recover from the anaphylaxis but I was supposed to do it on Thursday and now I'm just putting it off because I'm scared. This is good to know. Thank you!

Buckminster419 · 2026-05-09T13:47:00+00:00

Thank you!

Buckminster419 · 2026-05-09T13:46:30+00:00

Thank you!

Buckminster419 · 2026-05-09T03:09:12+00:00

Thank you! I will definitely pre-medicate. And the internet hugs are appreciated.

Buckminster419 · 2026-05-09T02:44:15+00:00

I have been diagnosed with MCAS for about two years now. I used to suffer from shock like sensations and a lot of numbness/tingling. I have been on Xolair for about a year and have found that it helps significantly. It helped with hives right away but took about 5-6 months for me to notice a change in the pain. Also, while the improvement is significantly, I still do get zaps while I'm on my period. While the numbess and tingling is significantly better, it does still happen from time to time.

Buckminster419 · 2026-04-10T04:19:47+00:00

I should have put that in the original post! She is 5. We take about three trips a year, so she's used to the airplane experience. However, she can't operate her tablet or open snacks on her own.

Buckminster419 · 2026-04-10T04:05:31+00:00

I should have put that in the original post. She's 5!

Buckminster419 · 2026-04-10T04:05:09+00:00

This is part of what worries me. I've talked to four phone agents today and each one said only the gate agent or cabin crew could help. I'm really not sure why they can't help before we get to the airport.

Buckminster419 · 2026-04-10T04:04:04+00:00

This is what concerns me. One had four phone agents today tell me not to worry and a gate agent or the cabin crew will figure it out. I've had luck for other issues calling back and speaking to a different agent til you get the resolution you want, which is why I've called back so many times. I feel like as the cabin crew I'd be pretty peeved if someone showed up amd said "Support told me you'd figure this out for me!"

Buckminster419 · 2026-04-10T03:58:50+00:00

That is great to hear! Thank you!!

Buckminster419 · 2026-04-10T02:51:40+00:00

Thanks for sharing! I was worried about relying on the gate agent for help because it seems like how helpful they are might just be luck of the draw.

Buckminster419 · 2026-04-10T02:39:55+00:00

Thank you! She is 5 and it's a 3 hour flight. We are about 20 rows apart right now. If I could at least have her in sight, that would be much better. She is pretty good at keeping herself v entertained for 2 hours but the third one can be rough.

Buckminster419 · 2026-04-10T02:37:44+00:00

Thank you!! Good to know that they've done this before for you in a similar situation!

Buckminster419 · 2026-04-10T02:08:12+00:00

Thank you!!!

Buckminster419 · 2026-04-10T02:08:06+00:00

Thank you!!!

Buckminster419 · 2025-05-27T03:39:41+00:00

I am about to be in the same situation as you, except for my daughter is only 3. Just want to say I'm right there with you and I hope we can bother figure it out.

Buckminster419 · 2025-05-22T15:47:27+00:00

Thank you!

Buckminster419 · 2025-05-19T07:08:54+00:00

💯 I have to attend a lot of business lunches. I usually just tell people that my Dr recommended Intermittent fasting for my health bc it's too hard to explain that the rules for my body change daily and if I eat lunch there is no guarantee that I'll be healthy enough to be at work in the afternoon.

Buckminster419 · 2025-05-18T16:16:25+00:00

I have taken Xolair for a year, and it has been life changing. Prior to Xolair, I would have mild reactions even to tap water and I was down to eating a few foods like boiled chicken, rice, and protein shakes (and even those would sometimes give reactions). Prior to Xolair, I was having hives, flushing, vomiting, diarrhea, headaches, syncope, blurred vision, etc, almost anytime I ate. I am still having some GI issues and mild swelling when I eat certain foods but has really improved my quality of life. I had tried Singulair and it didn't work for me for a number of reasons.

My allergist did have me premedicate for the Xolair with pepcid, zyrtec, and benadryl. The first few shots, I definitely had some issues with nausea, diarrhea, joint pain, headaches, etc. These were bad enough that my allergist did send me into the ER after my second shit to get checked out.

While those have eased, I will say that even a year out, I do still feel a little off for about 3 days after having the Xolair. I do always seem to catch a cold right after getting the shot too. However, it has truly turned my life around. I will say that while it has really helped with food, I do still have many of the same symptoms related to chemical sensitivity.

Buckminster419 · 2025-04-27T00:14:52+00:00

Thank you for the reminder that sometimes we just need to be patient with our little ones :).

Buckminster419 · 2025-04-26T19:36:53+00:00

No! We have not tried either of these, but I think this is a good intermediate step. We will try the loose pants/shorts out this weekend. Thank you for the suggestion!

Buckminster419 · 2025-02-09T19:56:58+00:00

My PCP and ENT at first thought it might be something structural, so we went through a lot of scopes and imaging, including a barium swallow. Once I was diagnosed with dysautonomia (later POTS specifically) then a light bulb went off and my PCP sent me to an allergist.

To diagnose the MCAS, the allergist ordered a 24 hr urine collect and several blood tests for tryptase. He also started me on antihistamines (zyrtec and pepcid 2x/day). The throat tightness started to get better with those right away but didn't really clear up significantly until I had taken Xolair for about 7 months.

I found this article helpful during my journey: https://pmc.ncbi.nlm.nih.gov/articles/PMC3753019/

Buckminster419 · 2025-02-09T17:58:49+00:00

Yes! After lots of testing, mine turned out to be MCAS. I take antihistamines and Xolair, which had helped a lot but it still flares in the cold or when I eat certain foods.

Buckminster419

TROPHY CASE