Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Triggers >> Direct/Indirect Sunlight http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1344840291 Message started by TallBird on 08/12/12 at 19:44:51

Title: Direct/Indirect Sunlight
Post by TallBird on 08/12/12 at 19:44:51

Does anyone know why mast cells degranulate in sunlight, and secondly, whether they can/will degranulate even if you are exposed to indirect sunlight in a room?. I already know that I react in direct sunlight however I am sure my symptoms also kick in if bright sunlight reaches me in a room. Or am I just going crazy...

Wishing everyone a trigger-free day! :)

Title: Re: Direct/Indirect Sunlight
Post by CrystalG on 08/13/12 at 01:48:42

I dont know why they degranulate in sunlight, but I have the exact same issue you do. If i am exposed to sun at all, whether it be outside or just sitting in a car and it hits my leg which is covered in jeans, I start to have an attack (hives, rash, swelling, flush, burning, etc). I would like to know the answer to this as well, but just wanted you to know you are not alone.

Title: Re: Direct/Indirect Sunlight
Post by TallBird on 08/13/12 at 08:00:14

Thanks CrystalG for reassuring me that I'm not going crazy :D

Would still love to know the answer though if they degranulate in indirect sunlight? Does anybody know please?

TallBird

Title: Re: Direct/Indirect Sunlight
Post by Anaphylaxing on 08/13/12 at 15:09:09

I get this too direct or indirect sun and the heat they cause. Not sure if there's an explanation out there other than it's a known trigger, maybe the heat is involved. just speculations.

Title: Re: Direct/Indirect Sunlight
Post by kimtg68 on 08/15/12 at 17:45:09

I don't know the technical or correct answer to this. But I would say there is a reaction to direct sun from the UV rays (because I tried a tanning bed and thought I was going to pass out and I had TONS of fans blowing so I didn't feel hot) but also heat sources will cause me issues as well like a hot shower or bath, cooking over a hot stove or washing dishes in hot water. So I'm guessing heat and UV rays. Not sure though about the UV rays. It's just a GUESS :P

Title: Re: Direct/Indirect Sunlight
Post by PJP123 on 08/17/12 at 05:42:44

Yesterday I was trying to lower my blinds in my kitchen. I have a double layer, 1 pleated shade and 2 bamboo on top. I was trying to lower both of them and they were getting twisted and stuck and the sun peeked in
and within a minute I was flushing, heart racing and I had to stop and sit down. Crazy right.

Title: Re: Direct/Indirect Sunlight
Post by CrystalG on 08/18/12 at 02:38:31

PJP that is crazy and sad that we can't even sit by a window or lower blinds. I was sitting in my dining room and the sun was hitting the side of my arm through the window and all of a sudden I was flush, developing hives, etc. I feel like I have to be a bat, only go out or be around the windows after dark.

Title: Re: Direct/Indirect Sunlight
Post by PJP123 on 08/18/12 at 09:02:54

I tell people I'm a vampire. My 11 year old daughter thinks vampires might be real so she cocks her head and looks at me like "Really". LOL

Title: Re: Direct/Indirect Sunlight
Post by Doozlygirl on 08/18/12 at 11:21:12

The vampire comment got me thinking. Bear with me as I try to convey my thoughts.

Early into my diagnosis of autonomic neuropathy, I was tested for porphyria as a possible cause of my failing autonomic system. Porphyria is the rare genetic defect that causes those who have it from being able to tolerate being in the sun. While I react in the sun, I can tolerate it with the correct precautions. I learned there are multiple types of porphyria, (7 or 8 if my memory serves me correctly), so the symptoms may be on a spectrum.

I bring this up because in the paper by Drs Moldings, Afrin et al, on page 4 in Table 4, lists the diseases that should be considered as differential diagnosis for MCAS. Porphyria is listed under endocrinolgical disorders.

http://www.jhoonline.org/content/4/1/10/table/T4

To me, that means there is enough connection here that porphyria should be considered. ruled out in those with those symptoms.

Best wishes,
Lyn

Title: Re: Direct/Indirect Sunlight
Post by Joan on 08/18/12 at 17:39:28

In mast cell disorders sun and heat are better tolerated when medication is dosed adequately. If you want to be able to go out in the sun or to tolerate a little heat every now and then, you might want to talk with your doctor about additional meds to take before exposure.

Title: Re: Direct/Indirect Sunlight
Post by PJP123 on 08/21/12 at 03:39:20

I saw on yahoo news today that in China they wear "Facekini"s so they don't get sun on them. They hate the sun too! Wouldn't I get a few stares at my town's public pool showing up in this get up. Google Facekini for a laugh.

Title: Re: Direct/Indirect Sunlight
Post by kimtg68 on 08/21/12 at 17:27:37

Those facekini's would probably make my heat intollerance flare. They look hot! Funny looking too. Almost alien.

Title: Re: Direct/Indirect Sunlight
Post by KatFromMD on 08/22/12 at 03:42:14

The facekini hits a little too close to home! When we go to Hawaii or the Caribbean, in order for me to go in the water (which is tropical but still cold for my poor body) and not fry to a crisp from the sun, I wear a wet suit, scuba booties and even gloves! (My hands are particularly sensitive to even the slightest sun exposure.) I'm covered neck to toe in black neoprene. I've considered getting a scuba head covering just like those facekinis, but I just couldn't bring myself to go that far - I look like enough of a freak as it is. Now having seen the lighter weight and lighter colored facekini, I'm half tempted!
;D

Title: Re: Direct/Indirect Sunlight
Post by PamH on 08/24/12 at 08:43:21

Haha, I just tell people that I can't be in the sun because I will burst into flames!

Title: Re: Direct/Indirect Sunlight
Post by PJP123 on 08/25/12 at 15:08:52

One of the mast cell doctors spoke of a man who self combusted and he was pushed in to a pool to cool him off.

Today I went to my daughters 1st travel soccer game and sat in the sun on bleachers. I wasn't there 10 minutes and I was about to combust. My husband was sitting behind me and I turned to him and said I'm sick I'm freaking out I have to get out of here and got up and left for my car (we took 2 cars cause the 1st game was at 7 AM. He asked why I was sick. He will never get that this is with me every minute of everday. I came home and was in bed in the air conditioning the rest of the day.

Tomorrow is round 2 of soccer. 2 games, 1st one at 7 AM. I don't want to go. This is so unfair to my poor 11 year old. She understands though.
She's so smart. She said we could video tape it for me to see. That girls a genious. LOL

Title: Re: Direct/Indirect Sunlight
Post by PJP123 on 08/25/12 at 15:41:28

Title: Re: Direct/Indirect Sunlight
Post by Anaphylaxing on 08/25/12 at 18:30:05

Would ice packs, cooling vest, and an umbrella for shade help? Plus ice cold water in a bottle?

I can't go out in the heat either or sun for that long, but those things help me when I have to

Title: Re: Direct/Indirect Sunlight
Post by Deb on 10/23/12 at 07:26:34

I think it might have something to do with the light waves too rather than the heat but it's really hard to know for sure.
I react to heat and steam and just the last few months when I get in the sunlight my heart will start to race, my stomach turns and I get body pain all over. But I've noticed recently it is actually cool outside and i may be a bit chilled and still the sun is having that effect. I was standing out with my back to the sun yesterday and it was only touching the bottom half of the side of my face and it was actually just a little painful there where the sun touched it. Not unbearable, I continued on with what I was doing but I know now I need some long sleeve summer shirts before next summer. (That was my dad's idea last week when the sun made me so bad off I had to squat down in the middle of the street!)
This page backs up the solar light waves theory too.
http://www.mastocytosis.ca/symptoms.htm

That also makes me wonder... I was about to buy one of those lights for seasonal affective disorder (the wintertime blues). But now I wonder if it will trigger mast cells. Anyone had any experience with that?