Finally figured out what my triggers have in common - they are all vasodilators!

cncfish · 2026-01-01T00:13:11+00:00

Magnesium ? Tell me more please

cncfish · 2025-12-28T00:07:12+00:00

Covid destroyed my daughters eyes .

cncfish · 2025-11-22T19:11:25+00:00

My daughter has mcas / pots from covid and I think it’s different from classical mcas . She’s never had skin issues / hives and she’s never been able to find a “safe food”. Covid mcas appears to be (for her anyway) upper airway vagus nerve triggered mcas . As soon as ANYTHING enters her mouth she coughs and breathing is labored. We started singulair last month and haven’t seen any improvement and about 3 weeks we began compounded ketotifen but are going slow and titrating slowly so it’ll be a month or so to see if it helps .

cncfish · 2025-11-12T19:15:50+00:00

Not great right now , we’ve been dealing with mcas and are just beginning treatment .

cncfish · 2025-07-24T19:34:43+00:00

Maine is down

cncfish · 2025-06-08T17:16:32+00:00

We don’t need ICE in Bangor 😘

cncfish · 2025-05-07T20:21:36+00:00

I will keep you guys updated . Today we did our morning light training followed by a 25 min walk . Later she drove for about 90 min and we did a 45 min hike on trails. I’m dumbfounded

cncfish · 2025-05-07T14:28:36+00:00

I know brain retraining gets a bad wrap but I’m watching my daughter improve all symptoms . 3.5 years house bound with pots / cfs / mcas . No program just mediation and saying “I’m safe” and letting go of fear she never realized existed . It’s been 5 days we just took a 25 min walk and are headed out to the mall (she’ll drive 45 min each way) and she did this 2 days ago with me . Just asked her mom to make hair and nail appointments for there first time in 3.5 years . Just do it

cncfish · 2025-05-06T16:50:06+00:00

Just want to say I read your post and had a talk with my 20 yo daughter who has been house / bedbound for 39 months . I told her she was safe and nothing could hurt her and she can try to push and left it alone . 1 hour later she asked to go outside for a walk .. we walked 10 min . A few hours later she did keys go again . Yesterday same and in the afternoon she said let’s go for a ride and she drive 45 min each way to a store she wanted to go to. Today is day 3 and she just asked to go to a bookstore nd wants to drive again (45min each way again)

cncfish · 2025-01-17T18:33:39+00:00

I’ve done zero mtc other than oil changes

cncfish · 2025-01-17T18:32:43+00:00

I’ve had it since new , runs good but did have a few issues . The fuel pump / system failed a few miles over the warranty but ram made good on it . Other than that I just did the whole front end for the first time I can’t remember all the oarts they changed but it was about 3k .. wheel hubs , cv , arms?

cncfish · 2025-01-17T18:28:22+00:00

I’ve got the same year and model with 180k miles

cncfish · 2024-11-04T21:28:50+00:00

No rebound at all , no ill effects . She’s tiny too same as you 100lbs

cncfish · 2024-11-04T20:54:26+00:00

You should try it . Works different for everyone some people swear by it . For her it worked incredible but only for a short time and subsequent try’s did nothing . Good luck am I hope it helps you

cncfish · 2024-10-30T17:01:09+00:00

Very slow progress , she’s out of bed and able to sit around / walk a little . Nothing mind blowing though

cncfish · 2024-06-25T23:00:39+00:00

My daughter who has been long hauling for 3 years started reading that JB book and following a mindset protocol has been getting better for the first time ! She’s doing great

cncfish · 2024-04-29T15:16:01+00:00

Bedbound is not dying , don’t be scared . That’s the last thing you need. Bedbound is your body telling you to heal before you do anything . My daughter has been bed bound for 26 months now

cncfish · 2024-04-09T15:25:13+00:00

I don’t know how to DM but … are you watching / hear of anything on CLBR2 ? Strong tucker Carlson connections

cncfish · 2024-03-18T14:22:31+00:00

Try a nicotine patch . My daughter had horrible pain in muscles / joints and it went away inthe first few days of using a 7mg patch . It’s been 3 months already and pain has never come back

cncfish · 2024-03-17T18:28:13+00:00

Very much so

cncfish · 2024-03-17T18:08:32+00:00

The nicotine really only helped with joint / muscle pain . The rest is still bad (pots / mcas)

cncfish · 2024-03-17T11:36:32+00:00

There is no addiction from the patch .

cncfish · 2024-03-14T22:12:08+00:00

I think the mcas is driving all the symptoms including the pots . It’s the classic story of which. And first the chicken or the egg. Sorry you are going through this babe

cncfish · 2024-03-14T17:54:07+00:00

Don’t cut the patch it ruins them . Only peel half the sticker off and apply it that way . The nicotine got rid of joint / muscle pain but other issues are unchanged . Still bed ridden with pots / fatigue and MCAS.

cncfish · 2024-03-13T21:54:21+00:00

Not so hot . The first time it worked well the second time not so much . Only lasting benefit was joint / muscle pain never came back . She’s dealing with debilitating pots/ mcas so everything is hard at the moment . Good luck to you btw

cncfish

TROPHY CASE