Its Always Chronic Migraine Time

sideblog for chronic illness venting | ace | agender | autistic | 27

[chronicmigrainetime]

Migraine resources

Sometimes when I’m really fed up with the brain fog I’ll anger-research migraines to feel like I’m being productive. And seeing as there are apparently no post about migraine resources on this website (or at least none tagged as such), I thought I would share some of the things I have found:

The migraine trust - a UK based charity that funds research into migraines. This website is a goldmine of very clearly laid out information on migraine types, treatments, research, etc. Very good for personal research, also very good for printing out and showing to doctors, highly recommend. It also has resources about how to get help and advocacy for migraines in various areas of life, and has information spesific to getting treatment through the NHS.

Migraine Canada - Very similar to the migraine trust but based in Canada. The website has a lot of similar information to the migraine trust website but is (in my opinion) slightly more difficult to navigate. It also has advice spesific to the Canadian healthcare system.

The National Headache Foundation - a US based group of doctors. The website has many articles on different types of headache, different types of migraine, differential diagnoses, migraine triggers, migraine treatments, etc. Many of the articles have versions in Spanish. They also have a page about apps for tracking migraines, and a healthcare provider directory for those in the US.

The International Classification of Headache Disorders - literally the manual on diagnostic criteria for every kind of headache, doctors are meant to have read it but many haven’t. I read through the entire thing once trying to find a diagnosis that fit me, maybe don’t do that unless you’re Really frustrated though. This webpage also has versions in Brazilian, Bulgarian, Chinese, Czech, French, German, Italian, Japanese, Korean, Mandarin, Portuguese, Romanian, and Spanish (under the translations tab); and has links to research on treatment for various headache types.

The diagnosis and treatment of chronic migraine - a 2015 paper detailing an evidence based outline for diagnosing and treating chronic migraines, a little technical in places but overall pretty readable, good for understanding the process of getting diagnosed and treated (or for telling doctors how you should be getting diagnosed and treated)

What are migraines? - a video by the Institute of Human Anatomy. An in depth look at the physiology of migraines and the migraine stages. It makes me feel better about the fact that my brain isn’t working. (Content warnings: an actual human brain is used for demonstration throughout the video, there are also medical cadavers visable (under cloth) in the background)

This is far from a comprehensive list I’m sure but hopefully this can be helpful to anyone looking for more information.

Feel free to add other resources if you know any (especially if you know of any in langauges other than english and/or any that are specific to healthcare systems other than the ones mentioned), but please only add resources that are evidence based and not behind a paywall! There’s a lot of migraine misinformation out there and we want to keep this as factual and accessible as possible.

[chronicmigrainetime]

New migraine resource!

The 2021 Brain Prize - This year the brain prize was awarded to 4 researchers for their work on the neurophysiological mechanisms that cause migaines. This pdf goes through our current understanding of the causes of migraines, including this new research, and how this understanding is being used to provide new treatments. It also has information on the history of migraine research, and provides biographies and autobiographies for each of the researchers who were awarded the prize (though the first two autobiographies may need a content warning for doctors being full of themselves)

[scoutology]

#crysobbing

[positivelyqueer]

[ID: digital illustration white on black background of rabbit. Rabbit standing on hind legs, crying with angry eyes & scribble above head. Someone out of frame says "Things will get better." The rabbit says "I'm tired of feeling this way." /end ID]

[skys-archive]

One day I will collapse to the ground, too weak and in pain to get back up. They will rush me to the hospital, where they will find every muscle and every bone is covered in a dark gunk that has somehow gone unnoticed until its reached this point. They will scrub me thoroughly, getting into every fiber of muscle and every crevice of joint and bone. They will pull out globs of the stuff and keep it far away from anyone nearby, incinerating it as soon as possible to keep it from infecting anyone else. I will spend days in recovery. They will all apologize. For never looking close enough to find the issue, for brushing it aside when I told them that I knew there was something inside of me, for letting this gunk grow inside of me for so many years. They will tell me I was right. And I will be at peace.

[becherdireinen]

nobody talks about how exhausting it is to live in that space between "things will get better" and "i can't handle this anymore." it's like your emotions are constantly swinging. leaving you both hopeful and defeated in the same day.

[insidestory1]

One of the terrifying things about chronic illness is watching time slip away from you. You spend almost all of your time just surviving, and like that you watch days turn into months and months turn into years and the time you have in which to do things slip away from you. But the pain and fatigue and the shear difficulty of living won't let up enough for you to actually live your life, so you just have to keep watching it pass you by.

[anxious-and-in-pain]

I’ve gotten my hopes up so many times over the years. Each time I’m like “Yes! This test is going to come back positive, explain my mysterious symptoms, and let me adjust accordingly!” only for it to come back negative and leave me without answers

[comorbid-curiosities]

sometimes I forget standing up isn’t painful and difficult for most people so I’ll be watching something like game changer and see the people standing behind their podiums the whole episode and think ‘wow don’t they need to sit down. how can they still think coherent thoughts’ and then I’m like oh. yeah. I have a disease

[shamebats]

How to talk to doctors

Post by @ julez27_

[battle-for-dyke-island]

doctors love saying “it’s just your anxiety” to mean “I don’t have to treat you” as if anxiety doesn’t need to be treated

idk if your anxiety is so bad you have tics or repeated vomiting or horrible migraines or trouble breathing or seizures or fainting spells or temporary paralysis or or or IT SOUNDS LIKE YOU SHOULD TREAT THAT FUCKING ANXIETY!!! (and if you start treating anxiety and the symptoms don’t go away it might be that the anxiety is caused by the symptoms and not the other way around. and you should treat the underlying cause)

even IF it is “just anxiety” it still needs to be treated

[chestersbraincell]

Having a dynamic disability is not being able to enjoy the good days fully because of the threat of bad days looming over you warning you against getting used to it being like this. Also the evil voice in your head that invalidates you and makes you feel guilty for even trying to enjoy the good days without being productive somehow

[chronicmigrainetime]

It’s Migraine World Summit time again!

This is a phenomenal resource, they have free expert interviews on all different aspects of migraine. There’s something that can be useful to almost anyone with migraines.

Each day from 11th March - 18th March, 4 or 5 free 30 minute interviews are released, they remain free for 24 hours. The interviews change to the next day at 3pm Eastern (7pm GMT).

[fibro-memes]

[smadeleine42]

I keep having to remind myself that healing isn’t linear and chronic illness is chronic and sometimes weeks are spent in bed and that’s alright.

[homunculus-argument]

The inconvenient thing about life is that half of it is all about listening to your body and letting yourself rest, and the other half is accepting that life will be uncomfortable and inconvenient sometimes and you've just go to make yourself push through your brain going Do Not Want and get the discomfort out of the way, and you never know which one it is.

[lavenderlemniscate]

feels like im always recovering. when do i get to live

[lavenderlemniscate]

"it's okay to rest for as long as you need from burnout" how long is it actually going to take though. there's stuff i wanna do.

[canidfigures]

if theres one message i hope to spread it's that i genuinely implore each and every one of you to find an interest that relates to daily life like vehicles or dogs or bugs or plants. take photos and write and draw about the things youve seen and tell other people about it. life gets more bearable and even more enjoyable when you start to find the beauty and wonder in everyday things.

[canidfigures]

see this is what im talking about !!!!!!!

[corvid-language-library]

Remember that if you want to do more of something, you have to do less of something else. It's that time of year where people set goals for the new year and they have plans and hopes and it's always focusing on what they want to do more of. More studying, more exercise, more crafting, more socialising, more making things from scratch. Okay, great. What are you going to do less of in order to have the time and energy to do more of those things you really want to do?

[corvid-language-library]

And if your answer to this is "less doomscrolling" or "less bedrotting" then great, but please think about why you're doing those things. No one's doomscrolling or bedrotting because they don't have things they'd rather be doing. Actually, I'm willing to bet you have a lot of things you'd rather be doing and you spend your life internally screaming at yourself to do literally any one of the many things you want to be doing instead, but you don't have the energy for them all and you can't work out how to prioritize them, so doomscrolling spares you from making that decision. Or perhaps you're burned out from taking on too many projects and you need to rest your brain, so you lie in bed because you don't even have the energy to get started anymore.

This is going to be a really hard pill to swallow, but the truth is you might not be able to balance all your hobbies and all your projects the way you'd like. If you want to finish writing that book, you might have to reduce your daily drawing habit to a couple of times a week. If you want to do yoga every morning, you might have to accept not cooking from scratch as often. If you want to spend more time with your family, you might have to cut down on your yearly reading goal. I'm not saying give up on your hobbies; I'm be realistic with your time and your energy and be kind to yourself. Stop expecting yourself to do more and do better every single year. You don't have to constantly be growing upwards and reaching for the stars; you can be content with where you are, or even cut parts of yourself back to make space for other things in your life to bloom.

Think about what your priorities are and make peace with doing less of other things. Less is okay. Less is not failing. Less is self care.