#sunct

[artecluster]

@migraineworldsummit

[magicicephoenix]

So you know how there’s the thing with phones (might just be apple i dunno) where they can scan pictures for words? and then you can copy-paste them?

I wrote a thing at like midnight in a notebook with the most horrendous handwriting, and this is what the scanner picked up on:

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[kiaria-ida]

:)

hey i’m nosy

there’s uuuuh obviously a lot i could’ve listed, so pick whichever category’s closest

[saltyloverrebel]

Sun Headache Remedy – Comprehensive Relief for SUNCT and SUNA

Sun Headache Remedy: Exploring Solutions for Severe Short-Duration Headaches   Short-lasting unilateral neuralgiform headache attacks (SUNCT) and short-lasting unilateral neuralgiform headache with autonomic symptoms (SUNA) are rare but incredibly painful types of headaches. These primary headache disorders involve excruciating, short-lived headache attacks that are often accompanied by…

[angelgendered]

for people wondering what sunct is! i have it too and rowan is the only oc i have with it weirdly, unlike fibro and other stuff i have going on which i afflict my oc's with regularly lol

[ladymazzy]

I have a neurological condition called Paroxysmal Hemicrania (PH). I have it in it's chronic form. It is an horrific condition, for which I take a fairly simple - but nonetheless toxic - medicine, in order to control the severity of the attacks. As far as I know I will be on this medication for the rest of my life. The condition cannot be 'cured' by kale, yoga or a rub down with some oils and rocks 🙃.

It's one of a group of chronic pain conditions known as Trigeminal Autonomic Cephalalagias (TACs). This group of conditions includes the fellow horror-pain syndromes, Cluster Headache, Trigeminal Neuralgia, SUNCT syndrome and Hemicrania Continua. They are also colloquially known as 'Suicide Headaches' (because sufferers often die by suicide, unable to continue living with the pain, particularly if they're not adequately supported or even believed).

There are so many conditions people may be living with which may render them disabled or chronically ill in some way. They're not always visible, and you may or may not realise what another person is going through just to get through the basics of the day. We can't all be expected to know about every condition out there; even doctors don't. My own GP was looking at the same webpages I had googled when I first went to her, and TAC support groups are replete with stories of people waiting years for an accurate diagnosis, or being doubted by family members ('it's just a headache, so suck it up' etc... 😑). Not knowing is perfectly fine, but we should be careful of hasty proclamations and actions that are essentially based on our ignorance ('I've not heard of x, so it can't be a real problem' etc.).

For what it's worth, I'm posting this for whoever needs to see it; I keep seeing multiple variations on the theme of people generally not taking into account the fact that not all conditions are immediately visible, or that they've perhaps underestimated the possible implications of someone's condition. We should therefore perhaps pause before making a hasty assumption about what others are doing/not doing. Particularly now that we're in the midst of a pandemic where so many variables will impact the possible implications for each of us.

Also, nothing was coming up in the tags for PH or TACs, so guess I'll be the first...

Organisation for Understanding Cluster Headaches is an incredibly important support group that also has a tool for helping understand any symptoms you may have, and the differences between each of the conditions and their treatments.

https://ouchuk.org/

[reimenaashelyee]

Capturing a Portrait

A post I wrote in March and cleaned up. Reposted from my blog (which has more thoughts on craft and other nonsense). About Alexander Comic.

----

A year in... and I think I've got him.

Disclaimer: I won't deny it. Alexander is impossible to get an accurate picture of. His personhood is made out of sand and everyone brings their own bottles to shape him into. I don't think my jar of sand is the One True Alexander, nor will it ever be. But the good news is, all the other jars aren't that either. The nature of his (after)life is elusive. That's what it is.

But I think I've gotten a hold of him. I mean this in an authorly, character-study sense. I think I've found something interesting.

In the beginning, I had three images of Alexander that I used as my guide: 1) the journey to the Water of Life with the Servant 2) the siege of Thebes 3) the many faces of Alexander. Later I added a fourth image, tied to Hephaestion. Those are the four ingredients for this brain stew. I let them sit. I let them bubble.

There's also a motif that comes up in the ancient biographies and the Alexander Romances: the pursuit. The drive to do things, see things, be things.

Pothos. Desire. Longing.

For a long time I had this suspicion of a particular type of sadness in Alexander's story. I didn't know the name, but I saw the symptoms: the competitive insecurity with his father, the destructive restlessness, the death/fallout of his friends one by one through his own hands, the death of Hephaestion totally out of his hands, the breakdown of his empire after his own death.

Even in the Alexander Romance, the legendary accounts that make him heroic also double down on that sadness. Alexander, kingship is wicked. Alexander, you'll die and never see your beloved mother/sisters again and that's your problem. Alexander, look at this poor, deformed stillborn child – it represents your end. "From my coffin, show the world only a rag in my hand. Say that in the end I die not with the kingdom I sought, but with scraps." Oh, it turns out that Alexander specifically is not fated for the water of life. The two angels warn him, turn back. "You may conquer the world, but the only land you physically own is the land on which your two feet stand on." But even that land is fleeting.

Pothos. A longing for a goal forever out of reach. A goal already lost in its accomplishment. Death gets to you first.

That was the name of the sadness.

Now, I don't intend to use pothos to absolve him. It is sad, but it is separate from the choices he made (in life and in fiction). I still have every intention to put him in the fire.

But I think I got him. My Alexander.

Pothos is not the most original thing ever. I mean, the ancient historians and the Alexander Romance writers already use it. I totally borrowed it from them. And besides, pothos is a posthumous motif that originates from a storyteller's (well, historian's) analysis of Alexander's life. Objectively, it has nothing to do with Alexander's real state of mind, whatever that may be. But man, that motif is powerful and potent and dazzling. No wonder it survives with his memory.

That's why pothos so core to my project and why it needs to remain a thematic forefront.

-

Not too long ago, I had a kind of epiphany related to the philosophical attitude of some of the Romances. It started as a spark of familiarity at first. Why does the attitude seem so familiar? I realised that, of course, it's the same philosophical attitude behind some of my favourite stories in media. And those stories happen to be East Asian. Japanese, especially.

Now, I already came into Alexander Comic with my postcolonial South East Asian lens. I grew up with a lot of Asian media that was only for the Asian gaze, with no consideration or need for Western understanding – alongside Western media, both Hollywood and artsy European and in between. So the way I view the world and the way I tell stories will reflect that media diet. Sometimes it tells me things I wouldn't have known if I had stuck to one source of media.

The funny thing about pothos is that this concept of transcience and imperfection is a whole thing in Japanese and Chinese thought. Mono no aware, wabi sabi, kintsugi... (sorry, all Japanese terms since I'm unable to find the Chinese equivalent... due to a language barrier)

The joy and sadness of autumn. The sand between fingers. The idea that nothing lasts forever and that’s why they are beautiful. The brokenness of a thing being its history. It’s not a brokenness be proud of, or to disguise; it’s simply a brokenness that’s just is. Mundane magic.

It's a thing in the non-English West too.

Saudade. Ubi sunct. Hiraeth. Memento mori.

Closer to home, it's what rindu (and sometimes, sayang) means.

I find it fascinating how someone who used to be the king of the world had not only lost his empire, but his own story. We in the modern world have almost nothing from Alexander's time that speaks about him, to him, and from him. Much of what we know is secondhand, either some hundred years after the fact or from someone else not him. A king of the world cursed to be known by everyone and no one.

-

Admittedly, it's a long dizzying way to obtain a portrait of Alexander... and who knows if this portrait is objectively in line with the real person (probably not! I mean, who knows!). But I think this exploration is part of being an Alexander Romance author.

Nizami said it himself in the first chapters of his own Sikandar Name E Bara: he was a poet overwhelmed with a thousand treasures, desperately trying to find pearls out of them to string into a beautiful narrative. Heck, forget Nizami. Arrian said it too: he had to read through fables and books (Arrian paraphrasingly calls them "trash" in contrast to Nizami's "treasures"), desperately trying to find the best-sounding materials to make his biography of Alexander.*

*the Anabasis is not part of the Romance

At some point in the future, someone will ask me who or what my Alexander is. It won't help that my Romance is neither a straight biography or a complete fantasy, though it includes some of both to paint his portrait. But that's my Alexander. A mish-mash of junk and trash and history and legend. A mosaic or stained glass of foreign words with no equivalent in English.

[soundrenaissance]

Bad Brains Frontman H.R. Undergoing Brain Surgery

by Dillon Price on February 1, 2017

  Last year, it was revealed that Bad Brains frontman H.R. was suffering from a rare type of headache called SUNCT (also known as “Suicide Syndrome”). In a Loudwire interview, he stated that he will undergo brain surgery in February in hopes to improve the neurobiological disorder. In the interview, HR said regarding the surgery:

“[My wife] took me to the hospital so I would learn about what was going on in my head, because I was experiencing bad headaches at the time,”

“And the doctor came to me and he said we’re going to have a surgery.”

It’s been a tough couple of years for Bad Brains. Hopefully H.R. will see a major improvement. In the meantime, you can help him out by donating to his GoFundMe campaign. Keep that PMA!

In related news, H.R.’s new book Finding Joseph I: An Oral History of H.R. from Bad Brain is available now on Amazon. In conjunction with the new book, a documentary film titled Finding Joseph I will be out this year and is set to premiere at London’s Doc ‘n Roll Film Fest on November 10th. See the trailer below:

Bad Brains Frontman H.R. Undergoing Brain Surgery was originally published on Sound Renaissance

[nonbinary-disaster]

No wonder acetaminophen never helped when I have migraines! I wonder if it’s the same for other major headache conditions too. I have special meds now for them but would Advil and aleve have helped when I had episodes before? Got 3 chronic headache conditions, migraines, chronic cluster, and SUNCT. SUNCT is sudden, extreme and so short, up to 20 a day for me that lasts between 30 seconds to 3 minutes and leaves me frozen in pain. Wonder if it could prevent them in advance? Got to talk to my doctor about this

I keep forgetting what the differences are in the over the counter pain relievers, so I made a handy chart.

[artecluster]

@cannamedical.Pharma

[kilopcor]

Alarm clock mini heart attack

The authorsuggested that formal sleep evaluation be considered forpatients with hypnic headache because there may bepathophysiologic and therapeutic implications. A hypnic headache was revealedin 1 patient who awoke from rapid eye movementsleep at a time of severe oxygen desaturation. Although this finding mayhave been nonspecific, it suggests the possible relationshipbetween stage 3 slow wave sleep and hypnic headache.7In another report, the author conducted overnightpolysomnographic studies of 3 patients with long-standinghypnic headache.8 The results ranged from normalto marked sleep insufficiency. 6 A polysomnographicstudy showed arousal at stage 3 slow wave sleepbecause of a headache episode. In one study, researchers described the case of a79-year-old woman with an 11-year history of nocturnalheadaches that suggested hypnic headache. 2 Headache specialist: Researchers believe that fluctuationsin the levels of serotonin and other brain neurotransmittersthat occur during sleep can affect headaches. How commonis this type of headache? Headache specialist: Raskin5 first described hypnic headacheas a rare condition that primarily affects elderlywomen (the female-to-male ratio is 2:1).Recently, researchers have proposed that hypnicheadache may be a spectrum disorder, because the headachesrange from mild, bilateral, 5-minute attacks to severe,unilateral, throbbing attacks that can last up to 6hours ( Table). 1-4Sleep-related headaches- with the exception of hypnicheadaches-are associated with autonomic symptoms.ĭoctor: Because my patient has no autonomic symptoms, hypnic headache is the most likely diagnosis. Patients with hypnicheadaches commonly experience diffuse, dull or throbbing,global pain unilateral pain is rare. Syndrome headaches produce moderately severe pain.The pain of cluster headaches, chronic and episodicparoxysmal hemicrania, and SUNCT syndrome is typicallyunilateral at the orbit or temple. Cluster headachesand chronic and episodic paroxysmal hemicraniaproduce very severe pain hypnic headaches and SUNCTsyndrome headaches produce moderately severe pain. How can I determine which type ofsleep-related headache is involved? Headache specialist:The first step is to assess the severity,pain location, and presence of autonomic features."Nocturnal attack" headaches include hypnic headache,cluster headache, chronic and episodic paroxysmal hemicrania,and SUNCT (short-lasting, unilateral, neuralgiform hemicrania with conjunctival injection and tearing)syndrome.Patients with nocturnal attack headaches generallydescribe the pain as throbbing or stabbing. I now suspect a sleep-related headache becausethe attacks occur only at night and awaken the patientfrom a sound sleep. However,MRI of the brain and erythrocyte sedimentation rate werenormal. THE DIALOGUE:Primary care doctor: Because of the patient's age and theabsence of a headache history, I first considered such secondarycauses as tumor and temporal arteritis.

[ladymazzy]

Cluster headaches (and other headaches in the Trigeminal Autonomic Cephalalgia family such as Paroxysmal Hemicrania and SUNCT) are also known as 'suicide headaches' because the pain really is *that bad*

Back in the bad old days when I used to use FB, I was part of a TAC support group for a couple of years. There was a very bleak period when 3 unconnected members died by suicide in the space of about 4 months. I also remember a woman who didn't realise she had a serious head injury after an accident because she was always in pain anyway

Finding an effective treatment for CH is particularly agonising because there's (so far) no preventative treatment; only drugs which can shorten the attacks as they happen and perhaps reduce the pain to some degree. Depriving people of those drugs just because of some perverse, magical thinking about *potential* pregnancies is incredibly cruel

Experiencing TACs whilst pregnant is horrendous. I had 3 pregnancies which all ended in miscarriage (including one which necessitated medical management when the foetus died - aka *abortion* because it is the termination of a pregnancy) whilst suffering from what was then untreated, undiagnosed paroxysmal hemicrania. The miscarriages were likely not related to my condition, but the point is miscarriages can and do happen. A positive pregnancy test is no guarantee of a toddler running around in a couple of years. But you wouldn't know it from the way these anti-choice fools talk about pregnancy.

I have 1 kid & desperately wanted a 2nd child, but in the end didn't have any more because - on top of everything else - I eventually got drugs that work effectively and I've got no plans to stop taking them as long as I've still got this bastard condition. As shit as my luck was to have miscarried and have a chronic pain condition I was and am lucky enough to have some choice when it comes to treating the pain

It shouldn't be down to luck though.

If legislators, doctors and insurance companies genuinely believe they're 'saving lives' by standing between people who have the *potential* to become pregnant and the medication which can be quite literally life saving, then there are no words for just how stupid and cruel they are

Cluster headaches. The convo was recorded.

[painsportal]

SUNCT syndrome is a primary Headache disorder that can cause upto 600 headache attacks per day. Find out more

[chrarybdis]

Hic Sunct Dracones 

[herokamijoutouma]

"My form is justice. And my form is the world. Worship me. Give praise unto me. Me, the beautiful, the sublime... Me, the invincible, the almighty and divine... E sunct  Dracul."