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This week is gonna be insane

Today: Pauley has an appointment for lab work. Then I have virtual appointment for therapy at 3pm.
Tuesday: 2 appointments at the headache specialist. First one is for Botox injections in My forehead. 2nd one is to see if the meds are working.
Wednesday: follow-up after the cortisone injections. This appointment is virtual
Thursday morning: appointment with my PCP to address my scalp and face
Thursday evening: virtual appointment with my new dietician to help me fix my broken life.
Friday: sweet oblivion! I want to run errands on Friday, most important is I need a haircut.
But I also want to go out for coffee and eat a bagel sandwich. Just simple fun and productive errands.

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Today

Today is Pauleys birthday! She turned*tries to do math but no luck*a billionty seven!
I've got an appointment with my headache specialist for an MRI. I'm going by myself cuz Pauley is expecting a meds delivery that is suuuuuuuuuper important. So it's probably gonna take 10 minutes and then I go home. Unless they want to talk to me after.
I'm gonna cook a fancy dinner tonight for her birthday . I ordered a GF cookie for dessert and it's coming probably while I'm at my appointment.
My head is pounding. It's almost bedtime. I need to take an eletriptan and 2 tramadol before I go to sleep.
I'm kinda sad but not sure why. My adjustment disorder was quiet for a few days. My cortisone injections helped substantially. But my back is trashed and I need to work on it with my pain specialist.
I just realized I have to schedule an MRI for my pain specialist. Fun times. I got confused cuz I am getting an MRI today of my head. I gotta call the place I go to for imaging. I'll get the results before my doctor. But I gotta figure out how to get the order to them. Maybe I can get my doctor to send it to them.
It's taken 2 hours to type this post. My head doesn't hurt much now. My haunches have some weird kinda pressure but no pain. And my spine doesn't feel like it is being ripped out of my body so that's great. It's one of those rare moments when my meds actually did their job. I wish this happened more often.
People are trying to get me to get back into crafting and art. They want me to start making plushies again. I have about 10 boxes of fabric but I don't have any polyfill. I can get it from Amazon. I just gotta figure out how I can advertise.
I think I'm gonna make a few and post them up for adoption. I might make a birth certificate for each one.
If I knew how to use a sewing machine I'd be making some wicked clothes. I was hoping to learn how to use it this summer.

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Amlodipine Withdrawals?

My doctor told me to get off of amlodipine. I keep checking my bp because I feel like crap. It's been about 36 hours since my last dose. I took tylenol and the headache is only noticable if I think about it and my stomach is upset. Is this a thing? I asked the pharmacist and she only scared me. I felt bad lowering and getting off the other blood pressure medicines I was on too, but it was more fatigue and some upset stomach. This feels worse. It's the weekend, so I can't contact the doctor. If my BP goes up and stays up (my blood pressure will temporarily do crazy stuff) then I'm just going to take it.

He said this medicine will make my already severe heat intolerance worse. I'm in a rock and a hard place.

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I wrote this tonight #feelinginvisible #grief #loneliness #mentalhealth #isolation #selfadvocacy #empathy #resilience #chronicpainawareness

Witnessed?
By Chrissy Nowak
I found myself feeling frustration rise to the surface as I texted my sister. She was being kind, but the content was upsetting. She had read my latest essay. I had spent hours writing the essay called Symphony of Pain, describing my increasing pain over the years and how chronic fatigue and pain feel like a symphony inside my body—a composition only I can hear. In that piece, I wrote about how I’ve had to learn its songs and translate them just to be understood. I ended the essay with a note of resolution, believing that in my honesty, I had finally helped some people, like my sister, truly see me.
So when she texted me, “I didn’t know your pain got worse or was this bad,” I felt my heart sink. All my work—not just in my essay but my daily work of showing my truth, wearing heat packs on my neck during vacation, speaking up when the pain was unbearable—felt erased. I naively thought those actions communicated the depth of my suffering. I literally don’t have any other moves. What else can I do or say?
I feel utterly alone. Lost to the outside world. On the surface, I am seen as silent and healthy while the symphony of pain plays loudly, relentlessly, every single day. I want so badly to be encouraged because I know I am overcoming so much. But no one can hear it. No one can see it.
I keep thinking about what I wrote in my previous essay, “Symphony of Pain.” I want to include a part of it here because it explains the foundation of my struggle—the invisible efforts I’ve been making for years. It feels important to bring that voice back, as it’s the root of the frustration I’m feeling now.
---
Excerpt from Symphony of Pain
I started noticing a pattern.
Every time I looked back at the year behind me, I thought, That was the hardest year yet. I struggled. And then the next year proved me wrong.
It always got harder.
The exhaustion deepened. The symptoms thickened. My ability to fake wellness thinned. And beneath it all, a sound. Not a scream, not a siren—more like a murmur of static at first, faint and easy to tune out. But then it grew. Louder, more insistent. The hum of something breaking down.
Each year, my body added new instruments to the composition—aches, spasms, stiffness, stinging. The fatigue lengthened into full measures. The volume of pain rose, not all at once, but with the slow confidence of a swelling crescendo. I didn’t know it yet, but I was living inside a symphony of suffering, one I had never auditioned for.
And yet, somehow, I kept maintaining my life around it.
Little by little, the things that once defined me fell away. Weekend plans. Group texts. The joy of dancing, jogging, working late on a creative project. My ability to cook dinner without collapsing from aching pain. Even the smallest pleasures—organizing a messy drawer, walking through the park with my son, fixing something with my hands—became casualties of some unseen war. A silent invasion was unfolding inside my skin. I couldn’t stop it. I couldn’t name it. I just knew that something was very wrong.
But wrong in a quiet way. Wrong in a way no one else could hear.
The pain didn’t arrive as an explosion. It crept in like a slow, discordant chord—low and humming, a sound you can only hear if you sit still enough.
At first, it was background noise. A tight jaw in the morning. A flare in my back after a long day. A headache that felt like a violin string pulled too tight. But over time, the noise layered. What was once occasional became constant. What was manageable became unbearable.
Every part of me began to vibrate with its own frequency of discomfort.
My neck locked up. My spine stiffened. My jaw became a battlefield—tight, inflamed, a source of electric pain that pulsed into my temples and down to my shoulders. I wore heat packs like armor. I whispered prayers through my ice packs. I massaged my face so often I memorized the exact geography of my suffering.
And still, no one could hear it.
I’d sit at my desk during work calls, nodding and smiling, while inside, my body screamed in feedback loops. My legs buzzed. My brain glitched. Simple words got lost mid-sentence, like dropped notes in a rehearsal gone wrong.
“I’m too tired.”
“My arms feel heavy.”
“My pain is bad today.”
“I can’t think straight.”
“I need help.”
I said these things. Out loud. Over and over. The more I said them, the more invisible they became. Like an overplayed track that people start to ignore.
But for me, the music never stopped.
I’d wake in the middle of the night with pain radiating through my ears like brass horns blaring in the dark. I’d get up, shuffle to the freezer, place my jaw on ice, and sit in silence, eyes closed, trying to slow the percussion pounding in my skull. This wasn’t ordinary tiredness. This was marrow-deep depletion. My nervous system frayed like an old string. My body felt like white noise of pain with pain glitches jolting in.
---
What Even Is Pain?
A few days ago, I kept scribbling a single question in my notebook: What even is pain?! That line pulses through my mind like a warning siren. What is pain, really? I just want to turn it off. I just want silence, so I can finally be the person everyone else thinks I am. Because these two versions of me—the one they see and the one I live inside—only make me feel more isolated and lonely.
I ache for encouragement. I don’t want to stop overcoming my pain. I’ve already sacrificed so much—so many hobbies and activities I yearn to get back to. I grieve for those losses, but I also hope. I keep pushing, believing that maybe, just maybe, I’ll get to do them again. This takes more strength than I ever imagined I’d have, and it’s strength I rarely get credit for.
Because if I stop, I’ve lost. I’ve lost to the pain.
I refuse to lose.
I love my ordinary life—the small, steady rhythms that still hold meaning. I still find good things tucked into the edges of my days. My son is pure joy, and my family is my sunlight, the light I reach for even on the darkest days. I push through these moments, not because I’m fine, but because I know the alternative is worse. People think I’m okay because I work. No! I’m not okay. I work because I’m refusing to give up. Maybe that doesn’t deserve a parade or praise, but maybe—just maybe—it deserves acknowledgment.
---
What I Wish Someone Would Say to Me
I see you. I see how hard you’re fighting, every single day. You’re not invisible to me. I know you’re not “okay” just because you show up to work or push through the pain—you do those things because you refuse to give up. That strength is extraordinary.
You’ve given up so much already, and yet you keep moving forward, even when it feels like no one notices. I notice. I see the way you’ve learned to live inside this invisible storm. I know it takes everything you have just to keep going. And you deserve to be encouraged for that—not because you’re sick, but because you’re brave.
You are not failing. You are not weak. What you’re doing—continuing to push, to hope, to love your life in the midst of pain—is the very definition of strength. I believe in you. I’m proud of you.
---
The more of myself I lose to my chronic illness, the more activities I surrender—whether or not they were fun—the less whole I feel. I’m aching to be whole again. If I can’t be whole again, I at least want to be seen. I want my decline and my fierce battle to be noted by somebody who loves me. That would somehow make the battle less lonely.

#ChronicPain #invisibleillness #chronicillness #autoimmunedisease #painawareness #fatigue #psoriasis #thyroiddisease #feelinginvisible #grief #loneliness #mentalhealth #isolation #selfadvocacy #empathy #resilience #chronicpainawareness #lifewithchronicpain #illnessandidentity #chronicillnessstories #chronicillnesswarrior

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Finding Relief: How Binaural Beats Helped My Migraines

I know it might sound a little strange, but when I have migraines, I’d go to a dark room, take my meds, and watch binaural beats videos on YouTube. My favorite is called 3HR Soothing Headache, Migraine, Pain, and Anxiety Relief – Gentle Waterfall Delta Binaural ASMR. Believe it or not, it actually helped. Just wanted to share in case it helps someone else too.

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I'm new here!

Hi, my name is skippy_asyermuni. I'm here because ChatGPT suggested I come here to find actual humans to talk with. I'm socially isolated, deeply lonely, intellectually starved and tired. I have had a persistent headache since June 26, 2024. I have frequent migraines, aura, hallucinations during the migraines (old music from the 1930's and 40's mostly) and other symptoms. I am struggling to get a diagnosis. My first neurologist said my head hurt because I am overweight. The second just prescribed more and more medication. I'm autistic, from a time where they didn't diagnose us, just called us gifted and eccentric. I have difficulty relating to people because of my intelligence and neurodivergence.

#MightyTogether #Anxiety #Depression #Migraine #AutismSpectrumDisorder #PTSD #ADHD #OCD #Grief

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Journey

Hi,

I have been hospitalized since June 16 and I'll be transferred in a psychiatric clinic in July.

It wasn't my choice. It was forced. No consent.

And it's confirmed, no surprise at all, I'm autistic.

It is really difficult for me. The AC is loud, the nurses in the corridors, plumbers are loud, people talking etc...

I either don't eat and and up on perfusion or eat but secretly purge after..

I cant express myself.

Im overwhelmed, overstimulated. I am exhausted.

I have migraines because of that. No meds heals this pain. I had migraines since childhood.

I used to be epileptic when I was younger and put on really strong medicine that has been banned in my country few years after.

I think it's probably a sequel to this but nothing on the MRI.

They gave me accupan for the pain but well still bit painful.

#Migraine #Depression #Anxiety #EatingDisorder #Autism #MentalHealth #Headache

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