#migraine — Public Fediverse posts

Great! Much planned to do #today but an Ocular #Migraine just set in. Episodes like this used to send me into full blown #panic but I guess I've gotten used to it; it has been a while though. I'm just going to take a deep breath, close my eyes and try to enjoy the light show in my head.

Spaarne Gasthuis organiseert informatieavond over migraine en nieuwe behandelingen: Voor ongeveer twee miljoen Nederlanders is migraine allang geen gewone hoofdpijn meer, maar een aandoening die het dagelijks leven uren of dagenlang volledig stillegt. Het moeten afzeggen van een verjaardag, niet kunnen werken of de zorg voor het gezin overdragen omdat licht, geluid en beweging te veel pijn doen: de impact is enorm.… https://www.haarlemupdates.nl/2026/09/08/spaarne-gasthuis-organiseert-informatieavond-over-migraine-en-nieuwe-behandelingen/?utm_source=dlvr.it&utm_medium=mastodon #Haarlem #informatieavond #SpaarneGasthuis #migraine

Spaarne Gasthuis organiseert informatieavond over migraine en nieuwe behandelingen: Voor ongeveer twee miljoen Nederlanders is migraine allang geen gewone hoofdpijn meer, maar een aandoening die het dagelijks leven uren of dagenlang volledig stillegt. Het moeten afzeggen van een verjaardag, niet kunnen werken of de zorg voor het gezin overdragen omdat licht, geluid en beweging te veel pijn doen: de impact is enorm.… https://www.haarlemupdates.nl/2026/09/08/spaarne-gasthuis-organiseert-informatieavond-over-migraine-en-nieuwe-behandelingen/?utm_source=dlvr.it&utm_medium=mastodon #Haarlem #informatieavond #SpaarneGasthuis #migraine

Spaarne Gasthuis organiseert informatieavond over migraine en nieuwe behandelingen: Voor ongeveer twee miljoen Nederlanders is migraine allang geen gewone hoofdpijn meer, maar een aandoening die het dagelijks leven uren of dagenlang volledig stillegt. Het moeten afzeggen van een verjaardag, niet kunnen werken of de zorg voor het gezin overdragen omdat licht, geluid en beweging te veel pijn doen: de impact is enorm.… https://www.haarlemupdates.nl/2026/09/08/spaarne-gasthuis-organiseert-informatieavond-over-migraine-en-nieuwe-behandelingen/?utm_source=dlvr.it&utm_medium=mastodon #Haarlem #informatieavond #SpaarneGasthuis #migraine

Spaarne Gasthuis organiseert informatieavond over migraine en nieuwe behandelingen: Voor ongeveer twee miljoen Nederlanders is migraine allang geen gewone hoofdpijn meer, maar een aandoening die het dagelijks leven uren of dagenlang volledig stillegt. Het moeten afzeggen van een verjaardag, niet kunnen werken of de zorg voor het gezin overdragen omdat licht, geluid en beweging te veel pijn doen: de impact is enorm.… https://www.haarlemupdates.nl/2026/09/08/spaarne-gasthuis-organiseert-informatieavond-over-migraine-en-nieuwe-behandelingen/?utm_source=dlvr.it&utm_medium=mastodon #Haarlem #informatieavond #SpaarneGasthuis #migraine

A study showed Mast Cell Activation Syndrome patients had higher rates in all but 1-2 of 19 neurological disorders studied.

Among 14 psychiatric disorders additionally studied, female MCAS patients reported higher rates in all and male MCAS patients reported higher rates in 8 disorders.

“MCAS subjects have significantly elevated odds ratios for many neuropsychiatric disorders and may see improvement of symptoms using MCAS-targeted therapies, suggesting that mast cell dysregulation affects the brain and peripheral nervous systems and contributes to neuropsychiatric symptoms.”

PubMed: Prevalence and treatment response of neuropsychiatric disorders in mast cell activation syndrome

Local hosted copy

A study showed Mast Cell Activation Syndrome patients had higher rates in all but 1-2 of 19 neurological disorders studied.

Among 14 psychiatric disorders additionally studied, female MCAS patients reported higher rates in all and male MCAS patients reported higher rates in 8 disorders.

“MCAS subjects have significantly elevated odds ratios for many neuropsychiatric disorders and may see improvement of symptoms using MCAS-targeted therapies, suggesting that mast cell dysregulation affects the brain and peripheral nervous systems and contributes to neuropsychiatric symptoms.”

PubMed: Prevalence and treatment response of neuropsychiatric disorders in mast cell activation syndrome

Local hosted copy

A study showed Mast Cell Activation Syndrome patients had higher rates in all but 1-2 of 19 neurological disorders studied.

Among 14 psychiatric disorders additionally studied, female MCAS patients reported higher rates in all and male MCAS patients reported higher rates in 8 disorders.

“MCAS subjects have significantly elevated odds ratios for many neuropsychiatric disorders and may see improvement of symptoms using MCAS-targeted therapies, suggesting that mast cell dysregulation affects the brain and peripheral nervous systems and contributes to neuropsychiatric symptoms.”

PubMed: Prevalence and treatment response of neuropsychiatric disorders in mast cell activation syndrome

Local hosted copy

A study showed Mast Cell Activation Syndrome patients had higher rates in all but 1-2 of 19 neurological disorders studied.

Among 14 psychiatric disorders additionally studied, female MCAS patients reported higher rates in all and male MCAS patients reported higher rates in 8 disorders.

“MCAS subjects have significantly elevated odds ratios for many neuropsychiatric disorders and may see improvement of symptoms using MCAS-targeted therapies, suggesting that mast cell dysregulation affects the brain and peripheral nervous systems and contributes to neuropsychiatric symptoms.”

PubMed: Prevalence and treatment response of neuropsychiatric disorders in mast cell activation syndrome

Local hosted copy

A study showed Mast Cell Activation Syndrome patients had higher rates in all but 1-2 of 19 neurological disorders studied.

Among 14 psychiatric disorders additionally studied, female MCAS patients reported higher rates in all and male MCAS patients reported higher rates in 8 disorders.

“MCAS subjects have significantly elevated odds ratios for many neuropsychiatric disorders and may see improvement of symptoms using MCAS-targeted therapies, suggesting that mast cell dysregulation affects the brain and peripheral nervous systems and contributes to neuropsychiatric symptoms.”

PubMed: Prevalence and treatment response of neuropsychiatric disorders in mast cell activation syndrome

Local hosted copy

Permettre la prise en charge de l' #emgality (injection contre la #migraine) en France

https://petitions.lecese.fr/initiatives/i-900

#CESE

Maandag, kastelendag

Kluskasteeltje van vandaag

#Fundafun #Funda #kasteel #Maandagkastelendag #kluskasteel #chateaux #migraine #castle #France #Frankrijk #Thouars #projectje #uitdaging #moneypit

https://www.french-property.com/sale-property/3772-A1o5cnrax726vxg5

Another day, and another migraine from an indie game that had a sudden extreme flashing sequece...now, say it with me once more:

FLASHING VISUALS ARE NOT SCARY, THEY ARE JUST HARD TO SEE AND CAUSE MIGRAINES, AND SEIZURES.

Gamedevs, seriously it is not hard to not have them in your games and expand your player base by avoiding them.

Also if you have them - MAKE A BIG FUCKING WARNING IN THE BEGINNING!

#ganedev #indiegame #accessability #migraine #flashing #fuckYou

#STAGE Ecco le proposte live dal roster di PEYOTE ✨
Disponibilità per #Kozminski, #TheRootworkers, #CobolPongide, #GianlucaNatanti, #PaleBlueDot, #Māyā, #Migraine, #FiestaAlba, #Cowards, #MishaChylkova e #Kaouenn! Tutte le info al link: https://bit.ly/49HefV4 🎸

In foto Kozminski live @ NOISE il Cinemino, Milano 📸

#concerti #livemusic #liveshow #onstage #peyotestage #bookingagency #newcollaboration #newroster #musicaindipendente #peyotezone

2025-8-17 The water isn’t the whole picture… but what is?

https://www.illmarks.com/2025-8-17-the-water-isnt-the-whole-picture-but-what-is/

#allergen #allergy #art #autoimmune #bodyHorror #bodyMapping #chronicIllness #chronicPain #chronicIllness #chronicPain #dermatology #longCovid #longcovid #mastCell #mcas #meCfs #mecfs #medart #medical #medicalArt #medicine #migraine #MillionsMissing #pwLC #pwme #rash #rheumatology #SciArt #sciartseptember #water

I dont know whats going on but since 1st August when I had my Ajovy it has not helped, so far I've had 7 migraine, 2 with vomiting and my normal on Ajovy is 4 or 5. Vomiting with migraine was normal for me prior to amitriptyline. Really hoping that my next shot on 31st August gets me back to only 4 or 5 migraines a month, I do not wish to go back to pre-Ajovy levels, that was pure hell.

#Migraine #Ajovy #ChronicMigraine

Patients in England to be offered daily pill that can halve migraine frequency | National Institute for Health and Care Excellence | The Guardian
https://www.theguardian.com/society/2024/apr/11/patients-in-england-to-be-offered-daily-pill-that-can-halve-migraine-frequency

#Migraine
#PillForMigraines
#MigrainePrevention
#NHSApprovedMedicine
#NICE
#NICEApproved
#Atogepant
#Aquipta
#AbbVie
#CalcitoninGeneRelatedPeptide
#CGRP
#ChronicMigraine
#EpisodicMigraine
#MigraineTrust
#ScottishMedicinesConsortium

Sometimes modern #medicine can feel very cruel.
A #spoonie tale of #migraine and #Ajovy.

There’s a treatment that helps control my migraine called Ajovy. It’s been a kind of a miracle taking me from constant pain to 9—12 attacks a month. But it’s new, and we don’t know if you need to stay on it for it to keep having an effect.
The only way to tell is to withdraw the treatment. (1/3) 🧵 #ChronicIllness #ChronicPain

Yesterday I tweeted about my latest dose of #Ajovy, but in compiling a series of Instagram stories about it, I was so struck by these two images. It's my August records, one year apart. Last August without treatment, and this August, several months on treatment. #migraine

Time for the best day of the month, it's #Ajovy time. Do you have any questions? I'm not an expert but I have had #migraines my whole life, and have tried many treatments before finding one that seems to work.

#migraine

So yesterday's #Ajovy news was a bit of a bummer, but today started a really fun part of this week - telling my various healthcare providers that it's actually working! Had a follow up call from the nurse who taught me to inject it and is managing that side of my care today and it was fantastic to be able to say that I'm well. She was so happy on the phone! #migraine

Well, today's blood donation attempt ended with pretty sad news. For as long as I'm on #Ajovy (the first thing that has ever worked for my #migraine), I can't donate. Being a regular donor has been so important to me, I'm sad that it has to end now. #giveBlood

So I've been trialling a new #migraine treatment for a few months now, and I've been almost afraid to say it out loud but at long long long last, we might have hit the jackpot. For me, for now, #Ajovy (#fremanezunab) works!

I can't believe the difference it's made in my life so far.

I blocked off some time Saturday afternoon (ET) for a little virtual #MigraineChat #NYE chit chat for anyone who doesn’t have plans and wants to socialize a bit.

I’m not posting the link publicly, but comment below and I will send you the Google Meet link. 💜

I might also pick a movie to #Teleparty on Sunday. Any interest? Movie suggestions?

#migraine #NEISvoid

Errr this is beyond my brain's capacity to process, but sharing for those on #migraine meds that are the #CGRP type. In the US they're meds like #Ajovy #Emgality etc

https://www.cell.com/cell/fulltext/S0092-8674(22)01196-5?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0092867422011965%3Fshowall%3Dtrue

Remboursez les anticorps anti-CGRP aux patients atteints de migraine sévère et réfractaire

https://www.change.org/p/olivier-v%C3%A9ran-remboursez-les-anticorps-anti-cgrp-aux-patients-atteints-de-migraine-s%C3%A9v%C3%A8re-et-r%C3%A9fractaire?%3A6&recruiter=673882001&recruited_by_id=aa6710a0-e7ef-11e6-af86-034468c68f7c

#Migraine #Pétition #Migraine #CGRP #Handicap #droit #santépublique #olivierveran