Who else gets a flare from turning on their car? So weird.I im a moldy who went into severe mast cell following my last moldy place. Every time that I get in the car now and turn it on It vibrates and I get anxious feel like a stroke and gi ana immediately. Turning the car off I feel better.

28 Answers

extrasmall_bauble81
Answered 8 months ago    reply

Common with Lyme disease and MCAS.

juan
Answered 8 months ago    reply

That makes sense I do feel like I have a heightened sense of perception for everything like I can detect anything different.

juan
Answered 8 months ago    reply

It's severely disabling though because I'm now pretty much homeless and hopping from place to place and in my car and I'm stuck

jubilantbrouhaha
Answered 8 months ago    reply

What is dnrs

extrasmall_bauble81
Answered 8 months ago    reply

Charlyn Dynamic Neural Retraining System

jubilantbrouhaha
Answered 8 months ago    reply

Oh yes I keep hearing of that.


l.mcgarvey
Answered 8 months ago    reply

There is a such thing as https://www.nih.gov/news-events/news-releases/nih-scientists-discover-genetic-cause-rare-allergy-vib...


l.mcgarvey
Answered 8 months ago    reply

They say it is rare, but I wonder if it is really rare and maybe it's not being reported.


marni
Answered 8 months ago    reply

Vibration is a trigger as well as the EMFs (electromagnetic fields)emitted from the car. You are not alone. If you have a choice, riding in the car as far away from the engine helps. Turn off GPS, Bluetooth, adjust the bass in your radio, etc.

juan
Answered 8 months ago    reply

I need to figure out how to work my panel in 2016 honda hrv. It has the nav panel and I dont mess with it no radio and dont use gps.


r_becky
Answered 8 months ago    reply

I def was getting really bad GI issues from the car vibrations but cromolyn has helped with that. Thank goodness because it was really causing me problems commuting to work!


juan
Answered 8 months ago    reply

I remember years ago before I knew about mast cell this coming and going all my life. I always had to live like a few minutes from work because of gi toruble from being in a car and it affecting my ability to get to work on time. Just back then it was not as bad and not everyday. Im on cromolyn since october. So far only up to 1 vial a day

passionate.disappointed87
Answered 8 months ago    reply

I also feel I am triggered in the car, more of an anxious feeling. Has cromolyn helped you a lot?

juan
Answered 8 months ago    reply

Its helped the throat swelling and masto dots i get on my leg and able to eat a little more

passionate.disappointed87
Answered 8 months ago    reply

Juan Good to hear it's helped!
I am seeing my Mast cell doctor at the end of the month. My neuro prescribed the cromolyn, was trying to wait to see what mc doctor wanted to do.


amanmallory
Answered 8 months ago

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juan
Answered 8 months ago

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juan
Answered 8 months ago    reply

The sunlight bothers me too but none of my moldy friends really get that they think it's the heat is actually just being outside in the sun light I tend to do most of my food shopping at night because there's less chance of me having a reaction because there's not the Sun rays along with the vibrations

amanmallory
Answered 8 months ago    reply

I pre-medicate before going in sun and car's...rarely drive myself to any dr. appt's and I dont night drive eaither. Castell's JUSt called me this past week to book an appt. for me..(i have waited 4 months for this call even tho she is booked out 18+ months!) and then she chose not to put me in her schedule until my "normal" tryptase papers are faxed to her. Loosk like I'll wait 4 more montsh for a call back now. My PCP forget to send that Info to her.

amanmallory
Answered 8 months ago    reply

Michlle, I am scheduled for photosensitivity test in boston ay MGH come April, as I also swell in any sunlight. Sick to death of it...living like a vampire.

juan
Answered 8 months ago    reply

I also premedicate and still end up taking benadry pepcid . Well i take unisom sleep melts no pork or mammal which im sensitive too and same ingredient I think they are becoming less effective though . Does castells require high tryptase. I dont know if I have it. The original allergist I didn't have a high tryptase but I didn't take it during a reaction and I was on meds if that matters or not so I'm worried what if I don't have one. I I know right now it will be very hard for me to drive to a quest during a reaction .

juan
Answered 8 months ago

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amanmallory
Answered 8 months ago    reply

my tryptase is normal, however Ive never been tested when reactive or in a ANA attacks. And yes, castell's usual;ly wants elevated tryptase but I have a ++ shaved skin biopsy for TMEP, that needs to be re-evaluated in a clinical setting (that was the lab's wording on my report). so I believe that is why castell's will see me...now let's see if she changes her mind after normal blood work.

amanmallory
Answered 8 months ago    reply

Juan I wont be seeing her nay time soon...I am told she is booke dout at least 18+ months.

amanmallory
Answered 8 months ago    reply

My photosensitivty testing at thru a dermatologist not castells.

juan
Answered 8 months ago    reply

Ok maybe i can get a biopsy of mast cell dots or some test to show positive . May have to park at a quest and then sleep there and wake up start car . I hate having to trigger reaction.


pastel_striker
Answered 8 months ago    reply

I have to put it into recirculating when I start it


smooth.guineafowl91
Answered 8 months ago    reply

I had to ditch all my newer vehicles and get an older one.

No GPS.
No Bluetooth.
No WiFi connectability.
No flat screens.
No map location displays.


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