#hemicrania continua

[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.

[forsakendevil]

How do I not have a headache? It has been three years of ow.

[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.

[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…

[themogaidragon]

Chronic Daily Headaches Pride Flag

PT: Chronic Daily Headaches Pride Flag /END PT

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

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 (link), this chronic tension type headaches flag (link) and this chronic pain flag (link).

Flag meanings:

P: Flag meanings: /END PT

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

[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

[earhartsease]

fuck yes - I've had one (1) headache that's lasted two months now and I'm so over it

migrane experiencer emotion when you

[bedbugbiting]

My neurologist’s office scared me with a new form that said that if Medicare refused to cover my nerve block that I would be billed “an estimated $900-$2000.” Um, no. Apparently, I’m already approved, though, and I can just...get nerve blocks when my doctor orders them. So I’m scheduled to get them every two weeks now and I might soon get them every week. 

So, that’s what’s going on there.

That’s a lot of money for a little tube stuck up your nose.

[tailsbeth]

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A karma bubble bath is my favourite bubble bath. 💫

[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!

[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

[somewhatstacey]

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.

[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?

[mednerds]

She Had a Headache for Months. Then She Could Barely See.

By Lisa Sanders, M.D. (The New York Times). Illustration by Ina Jang.

The 61-year-old woman put on her reading glasses to try to decipher the tiny black squiggles on the back of the package of instant pudding. Was it two cups of milk? Or three? The glasses didn’t seem to help. The fuzzy, faded marks refused to become letters. The right side of her head throbbed — as it had for weeks. The constant aggravation of the headache made everything harder, and it certainly wasn’t helping her read this label. She rubbed her forehead, then brought her hand down to cover her right eye. The box disappeared into darkness. She could see only the upper-left corner of the instructions. Everything else was black. She quickly moved her hand to cover her left eye. The tiny letters sprang into focus.

She moved back to the right: blackness. Over to the left: light and letters. That scared her. For the past few months, she’d had one of the worst headaches she had ever experienced in her lifetime of headaches. One that wouldn’t go away no matter how much ibuprofen she took. One that persisted through all the different medications she was given for her migraines. Was this terrible headache now affecting her vision? The neurologists she saw over the years always asked her about visual changes. She’d never had them, until now.

“Should I take you to the hospital?” her husband asked anxiously when she told him about her nearly sightless left eye. “This could be serious.” She thought for a moment. No, tomorrow was Monday; her neurologist’s office would be open, and the doctor would see her right away. She was always reliable that way.

The patient had bad headaches for most of her adult life. They were always on the right side. They were always throbbing. They could last for days, or weeks, or sometimes months. Loud noises were always bothersome. With really bad headaches, her eye would water and her nose would run, just on that side. Bending over was agony. For the past few weeks, her headache had been so severe that if she dropped something on the floor, she had to leave it there. When she bent down, the pounding was excruciating.

When she was younger, the headaches seemed to come on with her periods. So in her mid-30s, after she had her daughter, she had her uterus and ovaries taken out. She was hopeful for the first couple of weeks, but then the episodes of throbbing pain came back, bad as ever. Her doctors told her they were migraines. And it seemed that she had been on every migraine medication ever created. Her newest doctor had her on an anti-seizure medication used to prevent migraines, along with Excedrin Migraine to take once they got started. She had been taking this twin therapy for weeks, but this headache just wouldn’t relent.

A ‘Second Heart’

The woman saw her neurologist early the next afternoon. The doctor was worried, too. She ordered an M.R.I. and referred the patient to Dr. Robert Lesser, a neuro-ophthalmologist just outside New Haven, Conn. In Lesser’s exam room, the patient explained first to the technician, then to the doctor, that she’d had this headache for months. Sometimes the pain was worse, sometimes better, but it was always there, throbbing and pounding on the right side of her head. It was as if she had a second heart crammed into her skull, beating, squeezing, crowding. Recently, her vision seemed to get worse, blurrier. Blinking didn’t help. And then she discovered that when she covered the right eye, she could see hardly anything.

The constant presence of the headache, and for weeks at a time, immediately brought to Lesser’s mind a rare condition called hemicrania continua. As the name suggests, it’s a unilateral headache that persists long past the normal duration and is often accompanied by eye redness or tearing. It’s a strange kind of headache, related to other odd headaches — like cluster headaches — in which the underlying causes are still mysterious. He’d seen maybe 20 cases in the past. While those patients often had eye symptoms, they were always on the same side as the headache. This patient reported changes in the other eye. What would cause pain on one side and a loss of vision on the other? Multiple sclerosis could cause neurological symptoms anywhere in the body. Or was this a mass somewhere in her brain? It would take several space-occupying lesions to cause the kind of pressure and pain she described and affect her vision. But she had already had an M.R.I., and nothing was seen.

Lesser examined her eyes. Even up close, they looked normal. Each pupil responded to light equally. He took pictures of the back of her eyes, first the right, then the left. There are two places of special interest in the retina. The optic disc is the area where the nerves carrying visual information connect to the brain. Increased pressure in the eye, from a mass or from glaucoma, can cause swelling or atrophy in the nerves, which can often be seen. But in this woman, the optic nerve on both sides looked completely normal. Another region on the retina, called the macula, is where most of the visual receptors are located. This tiny region is responsible for most of our color and detail perception. In this patient, the macula was normal on the right but appeared swollen and discolored on the left.

Disconnect

Seeing this, Lesser knew that the headache and the visual changes were caused by separate disease processes. The headache was most likely hemicrania continua. The test to confirm this diagnosis is a therapeutic trial of an old medicine called indomethacin, a relative of ibuprofen and naproxen. This type of headache is wonderfully responsive to this particular drug, probably because it more easily crosses the blood-brain barrier, which keeps out so many other drugs.

The lesion on the woman’s retina was more concerning. It could be something common like central serous chorioretinopathy (C.S.C.), which causes places in the retina to swell. It’s more common in young people and those with Type A personalities. C.S.C. can cause distressing vision abnormalities and sometimes requires treatment if it doesn’t resolve on its own within a month or two. That was the most likely diagnosis. But there was another possibility that was far more serious: malignant melanoma of the retina. This is much less common but potentially deadly. The patient needed to be seen by a retina specialist to distinguish between these two very different possibilities. Lesser sat down with the woman. It was a good news-bad news type of conversation. She may be able to get rid of her lifetime headache with a pill she would take twice a day. But she also may have one of the most dangerous forms of cancer known.

Dark Side, Bright Side

The woman saw Dr. Thomas Berenberg, a retina specialist in Lesser’s group practice. It was melanoma. She had radiation therapy, which eliminated the growth in her eye. Although that was nearly a year and a half ago, she still must have regular follow-up exams to make certain it stays gone.

On the brighter side, she started taking indomethacin right after she saw Lesser. It took a couple of weeks, but finally her headache melted away and, for the most part, has stayed away. She had a hint of a recurrence and started the indomethacin immediately, and the throbbing pain vanished and hasn’t come back. Still, her sight hasn’t recovered in her left eye, which forced her to retire from her job as a court reporter. The double vision caused by the damaged eye keeps her from reading. She is optimistic, though. She feels as though she dodged a bullet. The cursed throbbing pain led to a diagnosis that saved her life. And as an extra bonus, she got rid of her constant headache. This past year, she and her husband moved to South Carolina, where their daughter lives. And the woman is getting a contact lens to block the vision in her left eye, so she should be able to read once more very soon. All in all, she feels pretty lucky.