#occipital neuralgia

[webkinzpossum]

i’m a medical mystery

[sleepy-spoonie]

tired of being in pain. tired of being nauseous from the pain. tired of flaring when I have stuff to do. tired of having a rare disease that doctors don't know how to treat. tired.

[howtobeapersonwithfibro]

I fucking hate insurance companies I wish they were a physical entity so I could do horrible horrible things to them

[problem-project]

Do not do this?!? This can cause DEBILITATING nerve pain in people with occipital neuralgia. This is basically a sure way of finding out if you have it, and trust me, you don't want to find out.

[ribbitflings]

the stabby stabbies has struck my brain again

[whatshouldwecallchronicillness]

Headaches...

[friendraichu]

might be just me being paranoid or a series of coincidences but it seems like the entire left side of my body is fucked up.

occipital neuralgia? almost exclusively runs up the left side of my head

left eye more nearsighted than right

TMJ seems like it might be worse on the left side (difficult to tell)

i have overarching neck and back pain, but left shoulder blade is more frequently in pain than right

left hip some sort of fucked up, probably related to my left L5 vertebrae being fused to my pelvis

all this to say, maybe i just tend to put more pressure on the left side of my body?? idk if one of these things instigated the rest or if it's all just happenstance, but it's fuckin weird and also im so tired of being in pain.

[all-that-glitters-is-goldfish]

Pain is really bad today :( 👂 🧠

[sabertooth1526]

What it's like living with Occipital Neuralgia.

It's like any invisible illness, nobody knows you're hurting because you're used to hiding the pain .

It takes several years to get a diagnosis because you're often written off as not exercising enough, not drinking enough water, not eating enough food, not eating healthy enough, etc etc.

Some days are easy to ignore, the pain is a manageable 2-4. Other days it's a do your best but it sucks pain at 4-7. But once it hits 7 it starts going downhill. Everything hurts. The lights, sound, air, your skin. Tears are forming in the corner of your eyes as the pain slowly increases. It feels like someone is pushing a white hot nail slowly into the base of your skull up towards your eye socket. You start sweating from trying to concentrate on simple tasks and out focus the pain as it bleeds into everything you're doing. You start losing focus, simple tasks are now difficult, sentences are hard to finish because the pain is consuming your every thought. The dial is moving from 7 to 8 to 9

I have given birth twice, both times without pain meds. I consider for me personally giving birth to be a 10/10 on my pain scale including labor and delivery. That shit fucking sucks. It hurts. The pain is horrendous. On that same exact pain scale that I judged what it's like to give birth, I consider the pain I have felt during a flare from my Occipital Neuralgia to be a 9. Once it has been a 10/10. The pain can last anywhere from an hour to 3 days varying between levels of 4 to 9. It is agony.

Currently there are medical trials going to figure out the best way to help people with this condition but as of right now there's not a whole lot of answers. Mostly people have been given anti-seizure medications, migraine medications, nerve blocks or have had surgery to insert a device that does something to the nerve that is being triggered all the time.

My day to day life is consistently affected, I am separated from my family and friends, I cancel plans, I am constantly exhausted, I'm in pain almost every day, I can't sleep, I take several meds a day, I have to avoid and look for triggers. Look for new symptoms and reactions to meds I'm trying.

I'm just so tired 😴

[auntie-histamine]

getting my right side occipital nerve ablation this morning and I am Nerviosa

[sleepy-spoonie]

July is Disability Pride Month 🎉

Did you know disability pride month existed? I didn't! It was born after the Americans with Disabilities Act was passed in July 1990 & focuses on changing the way people think of and define disability.

In the beginning of my journey with chronic illness & chronic pain, I wouldn't have considered myself disabled. Even as I got older and things got worse, I didn't consider it. Rather, I saw myself in a gray in-between area. But I want to tell you something: the word "disabled" set me free.

Owning my disabilities - neurological & physical - gave me a chance to stop pretending I wasn't sick. To stop pretending that the walk "isn't really that far, I can do it". It helped me realize that in order to live a comfortable life, I didn't have to hide my invisible illnesses or my pain. That I had a right to accessibility, and it helped me find the proper vocabulary to voice what accommodations I needed.

I live with dynamic disabilities - meaning that the severity of my disabilities varies depending on my symptoms. Some days my medication works wonders, other days it doesn't even touch my symptoms. Some days I may not need my mobility aid at all, other days I may need it to get from one room of my house to another.

Though most days are hard, I didn't struggle with the idea of being disabled, but I know that a lot of people do. So, some simple reminders to those who are battling internalized ableism:

• Disabled is not a bad word.

•There is no one way to be disabled.

• There is no amount of disabled you need to be for your disability to be valid.

• You do not owe able-bodied people anything.

I am more than my disabilities, but they are a huge part of me, and I am proud of who I am. I hope you are to. 💙

[howtobeapersonwithfibro]

The worst thing about photophobia is that my eyes are usually screaming in pain if there is ANY amount of light from any source. Like my guys you have one job

[alicecanthang]

The pain is back and I’m having suicidal thoughts (I didn’t tell my doc that tho) but I told them I can barely sleep and they’re like “yeah well the last nerve block didt help you ENOUGH so you can’t have it again. You have to come in for another appointment” but they also can’t get me in until next week

So I’ll just suffer and cry and think about killing myself instead

[brightlotusmoon]

It's been a year since I got a medical marijuana card. I now have favorite strains, I know a fuckton about terpenes, I know which strains I can't handle alone, I know what strains I prefer as bud, vape, resin, RSO, or literal butter.

I left the dispensaries this weekend skipping* and whisper singing the names of the beloved hard to find strains in my shiny new bags that the stores gave.

(*Spastic Hemiplegia makes it really hard)

[zyozaart]

When you’re jealous of the baby penguin you just painted. Guess why :/