D

@makemevisible24 @rhirhiarhii In india very few pharmacies ask for prescriptions. Even for ativan, if they know you.

@rhirhiarhii Hahaha. I needed it only the first time then he started giving without a prescription.

My pharmacist just told me that he can no longer give me drugs without a prescription. Now I need to get a prescription for all the drugs that I have been taking. Now I am wondering how to get ativan without prescription.

@PaulGadsden82 Yeah - i mean not for the poor. But it's so easy to get an appointment with a specialist and tests are scheduled so quickly.

@aprettierpixie One of my carers says she prefers the care system back in India even if you have to pay.

I can't believe I have air con but can't use it due to noise sensitivity. I now still risk anaphylaxis as a result. Doctor wouldn't prescribe sodium cromylin as too expensive. Do I despise the NHS? With every drop of blood in my body.

@PaulGadsden82 The NHS is in such a shambles. With all the other issues india has, private healthcare is so much easier to access.( Talking about the middle class). When I needed an MRI brain, I got a slot for the next day. I think our advantage is we don't have to go through a gp

@aprettierpixie I believe so? It's certainly way more expensive.

@PaulGadsden82 And cromlyn is supposed to be superior to that?

@aprettierpixie Sodium cromoglycate but been 4 weeks and no results

@PaulGadsden82 What headphones do you have? I have construction work with drilling and all cacophonous sounds next to my flat, but these help block out the noises.

@aprettierpixie Yeah it's nasty

@linds_longcovid I think I do that twice every week despite knowing the consequences

Yesterday I made the mistake of making a 5 minute phone call & spent some time looking for & ordering an air purifier on Amazon... so naturally now I can't hold my head or body up properly & my brain feels like it's being squeezed 😫😰

@PaulGadsden82 Headphones don't help?

@Davemconte Have personally tried mirtaz . Thankyou for this info about paxil goodrx.com/compare/paxil-…

I gained 45 pounds from a medication I have to be on. How can I lose the weight if I'm mostly bedridden, my appetite is stimulated by the medication, and all I think about is food?

@Davemconte But you're so fortunate it eliminated the hyperadrenaline thing.

@aprettierpixie It’s an SSRI, Paxil, which I believe has the highest weight gain profile. It completely eliminated a type of hyperadrenaline I was experiencing. I’m not going to even dare to come off it.

@Davemconte Really? My friends been on it for years and she's skinny as ever

@deborahbrian @elle_carnitine @saffronandsky @PaulGadsden82 @seanstidston I'm guessing so. Mine isn't severe so I don't know much. Which was why I was hoping they could help

@aprettierpixie @elle_carnitine @saffronandsky @PaulGadsden82 @seanstidston Mine isn’t severe as long as I avoid particular foods, cleaning chemicals, fragrances, etc — being housebound it’s mostly easier to avoid, which is why it isn’t top of my list, but I do think my function and inflammation levels would probably improve if it was under control?

@elle_carnitine Hi Elle - figured you're the best person to ask.i can no longer have a shower or sit long enough to be given a bath in the bathroom. And the summer heat in india is quite awful. How do you manage? Bath wipes? No rinse shampoo?

@deborahbrian @elle_carnitine I think @saffronandsky and @PaulGadsden82 and @seanstidston have severe mcas. I'm sure they'd be able to counsel you

@deborahbrian @elle_carnitine How bad is it ?

@GemzME @Naomi_D_Harvey @elle_carnitine Do you have a recipe?

@Naomi_D_Harvey @aprettierpixie @elle_carnitine Historical recipes for hair powder can also be useful between washes for those who can tolerate them.

@Naomi_D_Harvey @laurast51362949 I know exactly what you mean

@aprettierpixie @laurast51362949 My husband has had to some times, but if I can I prefer to keep trying to do it myself for now, as one day I may not be able to.

If anyone has tips for D on hygiene when bedbound please add them below. I think there is a long lasting deodorant of some kind but I can’t remember the name.

@deborahbrian @elle_carnitine You've not tried mast cell stabilizers? I'm sure there's much more potent drugs than H1 and h2.

@aprettierpixie @elle_carnitine Yeah, it’s a real smorgasbord, isn’t it? The MCAS seems fairly well controlled by dietary changes, but I didn’t find H2s particularly helpful, and I think I could probably achieve a better level of control, but I just haven’t prioritised it beyond trialling H1s and H2s.