#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.

[plant-a-memory-garden]

10/05/24

I am so tired. Life lately feels like putting out one fire as three more pop up. I’m struggling with my hemicrania continua, my pain levels have been 7/10 on a good day. 9/10 nights have become more common, the nausea, the pressure, the ice pick stabbing behind my eye as my temple pounds hard. Sometimes I wonder if I could pop my eye ball out if it would just explode from the pressure and pain.

Physical therapy for my herniated L10-12 disc… as the first three visits progressed over the span of a week and a half, I began having sciatic nerve pain on my left side. They said this was normal. Visit three I expressed my pain and they decided to run a thera gun over the areas. The electric zaps from not only the pressure but the vibration of the gun had my body twitching as he “worked” on me. “You’re jumpy” he says. “No, I’m having electric zaps in certain areas” I reply. I left in tears. “We will be more gentle next visit” they said “we didn’t realize how much you had going on” the pain ringing through my head as I lay on the table in disbelief. As if I didn’t have two prior PT sessions… as if in our consultation (and the notes I saw) I didn’t explain in depth about my chronic neck pain in C3-C5, my hemicrania continua on right side, my nerve ablation notes and all areas of my pain in depth. I went home nauseated with a left sided headache (different than my continuous HC headache which is on my right side) wondering if the Thera gun in my neck earlier had activated something. As I returned home praying the left side would stop, as I then had both sides of my head busting at different intervals. A few days later, Hurricane Helene affected the blue ridge mountains where I live. My neuro had me on a prednisone taper and after that I’m now on gabapentin slowly moving up.

The mass destruction of my surrounding homeland and communities following the aftermath of Hurricane Helene over Western North Carolina has been astronomical and unbelievable. I have so many emotions and each day is different however I am so grateful to be safe and alive along with my family.

Each day I’m exploring new specifics of my chronic pain and new found nerve pain as it slowly heals as well. Mixed with my light left sided headache (somehow connected to my SCM muscles and their pain) as well as my HC right side. They have very different feelings to them, different pulsations, sledge hammer, and ice pick modes. I can’t wait until it heals and hopefully dissipates on the left side. I’ve become more “used” to my HC side but accepting the new realities of the state of my body, recovery, and overall health feels overwhelming to say the least. So I created blog as a safe place to share my thoughts, feelings, and connect with community. And also reblog relatable content whether that be inspirational quotes, artistic creations, adorable animals, disability awareness/stories, poetry (a lot of poetry) and just overall things I connect with that bring me glimmers of peace, happiness and comfort.

We will survive The Great War.

Xoxo

[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

[nixmcretro]

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.

[jahtarlifestyles]

This is a daily thing for me.

[bedbugbiting]

WOW, I am having autonomic symptoms I haven't had in years, like my nose running on one side. My initial diagnosis was hemicrania continua, and one of the symptoms of that disorder is a runny nose on the side where you have pain. When my head pain first started, my right eye was red and I had a runny nose on that side in addition to my very odd head sensations and pain. Most of that stuff stopped with treatment even though I still had constant pain.

Almost every selfie of me from 2015 shows me with a bulging, red eye. I do still get that periodically on bad pain days and I'm afraid to look in the mirror.

This is my fault. I feel better when I have a regular sleep schedule and force myself to exercise and I haven't been doing those things. I also need to follow an anti-inflammatory diet.

I do have a neurology appointment in a few weeks. I'm a mess today.

[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

[nyheadache]

Hemicrania continua is a very disabling headache and it is often misdiagnosed

Hemicrania continua, a rare but severe headache condition, literally means “continuous one-sided headache” in Latin. This chronic condition manifests as an intense, unrelenting pain concentrated on one side of the head, typically around the eye area. It is more common in women. The condition often presents with distinctive features beyond the constant one-sided pain. Patients frequently…

[earhartsease]

I was seeing a neurologist for hemicrania continua (a kind of permanent fierce headache but on one side of the brain) amongst other neurofuckery and casually mentioned I have migraines too and he asked how often, and I said oh not often only a few times a week and he said no that's fucken often, and put me on an injectable med that made them go away and wow internalised ableism sure is a thing

I’m so angry at the number of people who have commented on my chronic pain posts like “I don’t have chronic pain so I don’t count but I do have chronic migraines-“

that’s chronic pain. that’s specifically the type of chronic pain I’m referring to.

and I’m absolutely not mad at those people, not in the slightest, but I’m furious at everyone and society as a whole that’s convinced them that they don’t count, that chronic migraines aren’t a genuinely debilitating form of chronic pain and disability.

migraines are chronic pain and have significant impacts on your life and you deserve to have that validated and not brushed off as “other people have it worse” or “not a real disability.”

[jahtarlifestyles]

Insomnia -Sleepless Nights

I am unsure on what has been going on with me lately. I have been up all hours of the night just sitting here, dealing with extreme insomnia. I have tried to watch television, but none of that interest me, I just got up out the bed and tried to clean or fiddle about the house to just plain, occupy my damn time. To know avail. Something has got to give.

Normally it is known that Insomnia usually is caused due to stress, trauma or anxiety, which I can say that I have all of the above, but finding out how to deal with it and find coping mechanisms that don't require medical intervention is really just got me at a loss for words.

Chronic pain and age related pain tolerance has me really starting to question how I bounce back after an episode (i.e. migraine attack, seizure, aura or mania moment) and how much I can actually handle here lately. It seems to be getting harder and slower for me to get back together before another episode rears its ugly head. It was easy to bounce back at 31 as apposed to 47, life is definitely life-in. "UGH" Currently, I have a problem with getting over heated and physical exertion. It can lead to a episode. But, I think for the sake of my body and wellness I have to find a way to incorporate some movement into my health regimen because you know as you age the less you move it, the more you lose it. I have been doing well with my healthy eating, but ya girl has messed around and got a gym membership, so I might have to take advantage of it, even if it means just getting in the pool and swimming laps. I have to shock this body and get more into a fitness routine.

As my spoonie friends have you found ways to shock your system without bringing about an episode? Do you find yourself as you get older, it is getting harder or takes you longer to pick yourself back up and rebound from a episode? Any suggestions would be great, thanks in advance.

Vero

[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

[virginia-werewolf]

want to go buy more edibles but migraine too bad to drive to the weed store😔😔😔

[nixmcretro]

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!

[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/