#hemicrania continua

[themogaidragon]

Chronic Daily Headches Pride Flag

Chronic daily headache (CDH): experiencing fifteen or more days with a headache per month. Chronic daily headaches is an umbrella term which consist of different sub-groups, primarily categorized as chronic tension-type headaches and chronic migraine headaches.

The flag is inspired by this chronic migraine flag, this chronic tension type headaches flag and this chronic pain flag.

Flag meanings:

Dark teal: migraine and headaches

Muted teal: all the types of CDH (cluster, hemicrania continua, idiopathic intracranial hypotension, migraine, tension-type, mixture of types, etc)

Greyish teal: other chronic pains and disabilities

Red/Maroon: chronic head pain

Muted purple: sleep problems and fatigue

Lavender: varying levels and types of pain

Purple: chronic pain

[Image ID: A flag with seven horizontal lines of the same size. Their colors are, from top to bottom, dark teal, muted teal, greyish teal, red, muted purple, lavender and dark purple. END ID]

[jahtarlifestyles]

I have been on so many yo-yo and strange diets in my time. But finally, eating a pescatarian whole food plan has really been working for me. The idea is to completely change my style of eating and work on my portion control. Cooking from scratch is time consuming but, overall it is healthier for me. I'm tired of starting over and hoping that this "new" diet will help me lose weight and decrease my pain 😢. Now, I'm just in it to decrease pain and live a healthier lifestyle. 💔 the spoonie in me wants to cry because I can remember those few hours years ago when I was pain and headache free, which seemed so long ago. GOALS, I have no other social media, so I will be using this as my journal to follow along with my progress. We shall see how this goes.

[virginia-werewolf]

cool and fun part of being chronically ill is deciding whether you want to just get blasted with Symptoms every day or take meds that will stop the symptoms but cause equally as bad, if not worse, side effects

[shanemcretro]

Shane’s Brains! MRI Scan – September 2023

We’re on day 25 of the never–ending headache. The good news, however, is that I have been to a neurologist who prescribed some indometacin (US: indomethacin). Indometacin is a nonsteroidal anti-inflammatory drug (NSAID), much like naproxen or ibuprofen but even stronger.

[earhartsease]

I'm about to start using a fancypants medication for terrible headaches and it's called Fremanezumab and at this point I'm just like "you're making these names up now" and of course they literally are doing that but also "the spice must flow" because Freman

[keplercryptids]

Good luck with the migraines friend, solidarity from a fellow headache haver (hemicrania continua) it sucks when something that gave you pain-free time stops working, I hope you and your neuro work out something else that can help 💜

thank you! if all else fails, i do have a rescue med that usually works great so, y'know, i'm pretty lucky within the chronic pain community. only getting 1-2 migraines a week when botox was working was a nice reprieve for awhile.

[bordonfreeman]

Well fuck. I've been doing some research into why i get headaches all the time, and i either have chronic migraines or hemicrania continua [idk]

Now I'm gonna look into things more before i start really looking into anything specific but based off some stuff I've learned before, i thinm it's likely chronic migraines.

If so, cool, great, add it to my fucking list i guess

[goddammitstacey]

I saw your post about the headaches. I know you probably have looked into it, but just in case you haven't, you might look into if Botox shots are an option for you. I've had problems with headaches (hemicrania continua and TMJ related) and Botox has been a lifesaver for me.

Thank you! I’ll bring it up with my doctor.

We’re still early days in trying to figure out a) what’s causing it and b) what can be done to mitigate symptoms.

My MRI and CT results have turned up very little in the way of actionable information so I think my doctor’s next step is to send me to a neurologist. Not sure if they’ll be able to help me with the pain directly or whether I’ll have to see a pain specialist as well though so….yeah.

I’m very tired. And very broke.

Not sure if you’ve been following me for a while but this isn’t my first chronic pain rodeo and I can’t say I’m thrilled to ride this shitty rollercoaster again.

[lazynighthologram]

How can you relieve Headaches and take back your life?

How can you relieve Headaches and take back your life?

Table of Content 1. Introduction 2. Understanding Headaches 3. What Headaches are trying to tell you 4. When should I worry about a Headache? 5. What are the most common Headaches found? 5.1. Primary Headaches 5.2. Secondary headaches 6. What types of Headaches do you get? 6.1.Tension Headaches 6.2.Cluster Headaches 6.3.Migraine Headaches 6.4.Hemicrania Continua 6.5.Ice Pick…

[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/

[jahtarlifestyles]

Today is not a good day for me. The pain in my head is getting to be unbearable. The tears that fall leave me in thought of this is how I die. Will my head finally give???

[virginia-werewolf]

this might be controversial but i am actually bring kind of tired of having a migraine every day

[shanemcretro]

Shane’s Brains! MRI Scan – October 2023

The latest update in a series of updates it seems! Recently I had the fun of being injected with a chelated form of gadolinium, affectionately known as an MRI contrast agent. It makes fluid filled bits (such as eyes, blood vessels and tumours) light up like they are a Christmas tree!

[earhartsease]

doc: your three-month-long awful headache is outside my expertise, I'm referring you to a specialist headache clinic to address this

me: awesome?

clinic: hi! our waiting list is currently six months

tory government: haha fuck you all

me: ¯\_(ツ)_/¯ fuck me I guess?

[bedbugbiting]

The left side of my head has been doing bad things most of the day. Uh oh. That's my good side. The right side is carrying on as usual. My left ear was making screeching noises, but I think that that's something to do with the nerve block. That has happened before during illnesses but not in years (only my right ear makes noises). But, uh, I don't like the idea of pain spreading around.

[tailsbeth]

A karma bubble bath is my favourite bubble bath. 💫