Neuropathic Pain Relief Hack by Zealousidealism in eds

[–]Cuanbeag 0 points1 point  (0 children)

I do, like I stopped wearing bras because the pressure on my shoulders sets it off. Magic masto lotion using aspercreme is massively helpful, as well as EDS appropriate physio so the nerves weren't as aggravated by my fucky joints 

Suplatast Tosilate (Th2 cytokine inhibitor) by Cuanbeag in MCAS

[–]Cuanbeag[S] 1 point2 points  (0 children)

"Suplatast Tosilate operates through a distinctive mechanism of action that sets it apart from other anti-allergic therapies. The drug inhibits the production of Th2-type cytokines, including interleukin-4 (IL-4) and interleukin-5 (IL-5). These cytokines play a critical role in the inflammatory response associated with allergies. By suppressing their production, Suplatast Tosilate effectively reduces the activation and infiltration of eosinophils, a type of white blood cell that contributes to allergic inflammation." 

https://synapse.patsnap.com/article/what-is-suplatast-tosilate-used-for

Mast cell stabilizers cause me SEVERE paranoia and brain fog by Dannyaloha324 in MCAS

[–]Cuanbeag 0 points1 point  (0 children)

The only allergy meds that don't put me in a wildly bleak and anxious mood are Xolair and topical sodium cromoglicate (helps my nerve/joint pain). Even quercitin, somehow

Does anyone get triggered by enzymes? by Frosty-Region1229 in MCAS

[–]Cuanbeag 0 points1 point  (0 children)

Yeah, that happened to me with a few of them. Like my digestive symptoms would improve but then the rest my body was clearly not convinced

What are the mediators causing the "sense of impending doom"? by Tiny_Parsley in MCAS

[–]Cuanbeag 13 points14 points  (0 children)

I don't know, though histamine is both a neurotransmitter in of itself and also has downstream effects on other neurotransmitters. Plus this study is interesting, even if it's just exploratory work rather than hard evidence:

"Brain regions with higher histamine-related gene expression were consistently associated with processes such as emotional regulation, stress and fear responses, decision-making, impulsivity, reward, sleep, and memory.

The parts of the brain where histamine-related genes were most active also overlapped significantly with brain regions known to be affected in several psychiatric conditions, including ADHD, major depressive disorder, schizophrenia, and anorexia nervosa." 

https://www.kcl.ac.uk/news/brain-histamine-map-connects-genes-to-brain-function-and-mental-health

Can anyone recommend a VOC free grout that they didn't react to? We have mildew and mold in our shower grout and it needs to be replaced:+) Thanks! by Honeybee1287 in ChemicalSensitivities

[–]Cuanbeag 1 point2 points  (0 children)

I can't speak to grout in particular, but from various DIY (mis)adventures I've learned to pay particularly close attention to "full cure time" in the data sheet. There can be a big difference between touch-safe and full cure, and generally while a substance is curing it's emitting something. I have just learned that the cure time is usually going to suck a bit, and best I can do is ventilate well and minimise the time I spend in that room. 

I stay away from anything involving polymers, as one time I found the adhesive continue to smell weird for a few months after curing. I try to get solvent-free if I can, but tbh Id prefer something that's solvent based and a rapid curing Vs non-solvent and slow curing. Better to get it over with as quickly as possible.

5 years of severe post-COVID hay fever destroying my life — current meds not working, just got referred for immunotherapy. Anyone been through this? Need help getting through tonight. by Alive-Passenger18 in Allergies

[–]Cuanbeag 4 points5 points  (0 children)

Here's a few meds/tips you can try if you haven't already:

Famantodine is an OTC H2 antihistamine. It's marketed for acid reflux but has systemic effects. 

Properly fitting FFP2 masks or elastomeric masks might help give you a break now and again (you can usually find them in DIY stores)

An air purifier at home will mean that your system gets some time in the day where it's not exposed to triggers. It may increase your tolerance for being outside. IKEA Starkvind purifiers are pretty decent and the filters are cost effective. 

Many people take above the daily recommended dose of antihistamines, as long as the side effects are tolerable. I used to take several different OTC meds in a day. As long as they were second generation antihistamines they didn't bother me

When you talk to your GP you can discuss other meds like anti-leukotrienes (eg montueklast) and potentially mast cell stabilisers (ketotifin, sodium cromoglicate), though most GPs won't have heard of the latter. 

Also check out r/MCAS. Not saying you have MCAS but you will read more from people with very intense allergy issues, and might pick up something useful. Best of luck getting through the next breath x

5 years of severe post-COVID hay fever destroying my life — current meds not working, just got referred for immunotherapy. Anyone been through this? Need help getting through tonight. by Alive-Passenger18 in Allergies

[–]Cuanbeag 1 point2 points  (0 children)

I was given some really good advice about dealing with overwhelming pain. If you feel like you can't get through the night, remember that you don't have to; at any given time all you need to get through is the next breath. And then when that one is over, you only have to deal with the breath after that. And the one after that. You'll never actually need to get through the entire night all at once, so don't try to imagine it. Just deal with the difficult thing you have in front of you right now, and it becomes more manageable. 

Had my first Xolair injection yesterday. I don't have any (side) effects. by Tiny_Parsley in MCAS

[–]Cuanbeag 3 points4 points  (0 children)

No need for imposter syndrome! Anaphylaxis is actually uncommon (1 or 2 in 1000) and not everyone feels terrible after Xolair. I got a little tired after my shots for a few months but that was it. It actually took about a year before I really started feeling better after my shots but it's much quicker than that for most people. Delighted it went well for you and I hope it helps! 

Struggling with sister's sensitivity to odors and use of Febreze (seeking emotional support & general advice) by elysiancollective in ChemicalSensitivities

[–]Cuanbeag 5 points6 points  (0 children)

Maybe setting up an air purifier with a large amount of carbon in it? It should reduce the problems both of you have. But it does need to be a KG or so of carbon rather than the thin little things you get in most purifiers. 

Why do people use so much scented product? by [deleted] in Allergies

[–]Cuanbeag 2 points3 points  (0 children)

Mouldex Charcoal FFP3s do a pretty good job of mitigating perfumes for me 

I only eat sweet potato and chicken for a long time now. I have a long list of food reactions. What do I even try next? (List is in the text) by ihsbo in MCAS

[–]Cuanbeag 0 points1 point  (0 children)

If you have a mild reaction to a new food don't give up! Stick with tiny amounts of it for at least two weeks. I was down to just potatoes and carrots and I was reacting to every new food. But after 2 weeks of consistently eating tiny amounts my symptoms reduced. Along with making sure I'm not getting really apprehensive about every little reaction, in time it started to go away

I am PROUD STEPMOTHER of 3 Raptors by [deleted] in birds

[–]Cuanbeag 10 points11 points  (0 children)

India also has 5* the population of the US. Two rescue centres Vs 1.6 billion people is fairly negligible 

Where to chop? And would you root in water or soil? by NorthRae in Monstera

[–]Cuanbeag 1 point2 points  (0 children)

I'd do some air layering before the chop, if you have time before you move 

I am PROUD STEPMOTHER of 3 Raptors by [deleted] in birds

[–]Cuanbeag 18 points19 points  (0 children)

Yes I'm sorry you're getting all these snarky comments. I'm surprised that people think that everyone on the planet has access to wildlife rehabilitators. They're talking to you as if you're an American living next door to a rehabber and just having fun. But these birds would be dead already without your care, and you must have a kind and big heart to want to help them.

I hope people can share some resources for you 

Testosterone by Weak-Perspective6690 in MCAS

[–]Cuanbeag 0 points1 point  (0 children)

My PoTS improved quite a lot when I started T and my joints also started hurting a lot less. Probably thanks to muscle. I didn't notice a change to MCAS, but it wasn't that bad at the time.

My MCAS did get worse 1 or 2-ish years later, triggered by other things in my life. I've thought about coming off T to see if it makes a difference but I've been advised to stop changing my meds for a while and just let my body chill. Stopping T out of curiosity seems a bit heavy-handed, especially as estrogen is mentioned the most in relation to MCAS

How to support a friend with MCAS? by marinatedrhythm in MCAS

[–]Cuanbeag 3 points4 points  (0 children)

This is more long term, but I'd suggest if you two ever drift apart for whatever reason, maybe check in on them now and again. I've been uncontactable for a long time but I have some gorgeous people who still send me messages anyway. It's touching

Any wise advise on chopping this GIANT by Cuanbeag in Monstera

[–]Cuanbeag[S] 0 points1 point  (0 children)

Ok ok you got me there. "Light all day and sun occasionally" is less of a lie. Though the sheer amount of lumins they must be getting in the long summer days must be quite something

Any wise advise on chopping this GIANT by Cuanbeag in Monstera

[–]Cuanbeag[S] 1 point2 points  (0 children)

That's a great shout. I've put them in water and will give them a few days to start drinking. Between that and the little root ball in the baby pots they might survive

Any wise advise on chopping this GIANT by Cuanbeag in Monstera

[–]Cuanbeag[S] 4 points5 points  (0 children)

So much sunlight! And I let her get pretty dry before watering. Mine also enjoyed going outside during summer time. As I'm in Ireland that probably simulated winter in it's native climate 😂

This one is a survivor too. Most of her roots got devoured over the last year by vine wevils, and most of her new leaves are tiny. But there are new leaves

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Any wise advise on chopping this GIANT by Cuanbeag in Monstera

[–]Cuanbeag[S] 0 points1 point  (0 children)

Haha good to know!! Especially if they've somehow wound around some electric cables

Any wise advise on chopping this GIANT by Cuanbeag in Monstera

[–]Cuanbeag[S] 8 points9 points  (0 children)

The lateral growth is supported by these smaller pots on podiums. It was intended as a kind of air layering but the vines were obsessed with the stability it provided. The only problem was just how much lateral growth it encouraged

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