#NDPH

[boycritter]

if i had a nickel for every chronic pain condition i developed as a tween due to an extremely stressful life event that also causes fatigue and cognitive issues, is hard to treat and likely impossible to cure, has little research into it, doctors and scientists wildly disagree over how the condition works or even if it exists at all, is a diagnosis of exclusion, and was blamed on anxiety/depression for years, id have two nickels. and it fucking sucks that it happened twice.

[be-the-inspiration]

Maybe they'll finally find something wrong that can be fixed...

[abby118]

hugs for you abby!

thank youuu 🫂💚

[invisiblewarrioradvocate]

Well, I have finally overcome a huge fear. I published my book.

It's Okay: behind the scenes of chronic pain, invisible illness, and daily life. If you or someone you love struggle coping with daily life. Come check out my book.

You can find it on Amazon and as an epub

[alexei-home-fromthewar-at-last]

I’m just a (demi) girl chugging Gatorade and caffeinated beverages, hoping it’ll solve my physical health problems.

[agnes-is-ari]

In hindsight, NDPH is a really funny diagnosis. You go to the doctor and say “Hey I’ve started getting daily persistent headaches” and the doctor goes “yeah I’ll diagnose you with that” and sends you home with an ibuprofen. And then they’re wrong.

[urdtarah]

my ndph is bad today

[nyheadache]

New Daily Persistent Headache is very treatable

New daily persistent headache (NDPH) is condition that is defined solely by the fact that the headache begins suddenly one day and does not go away. There are no scientific studies to suggest possible underlying mechanisms or treatments. Some patients develop it after a viral infection while others, after a period of stress and many with no apparent trigger. In my latest book, I mentioned how a…

[boycritter]

how badly will i have to beg and plead and grovel at the feet of the students with disabilities services at whatever college i go to in order to not have a roommate

[be-the-inspiration]

"Routine"

[i-feel-it-in-the-earth]

@magpiesmiscellany Yes, absolutely - the more you get the botox, the better it performs overall. My first ever treatment helped, but each subsequent treatment helped more than the last. I've been getting it for years now and the quality of life difference is night and day.

You may need to have your doctor adjust their placement of the botox depending on where your pain is - my doctor tried not doing any in my forehead and only in my hairline since that's worked for other patients, but that was a huge no-go for me, since a lot of my pain is localized in my forehead.

I also still don't have pain-free days, but my specific diagnosis (New Daily Persistent Headache or NDPH) is notoriously difficult to treat, so you may have a different/better experience! The pain I do experience is far more mild and manageable with the botox injections. I find it starts to wear off around the 11-12 week mark, so I go in for my next treatment every 12 weeks exactly (as early as insurance will allow lol).

I'm sorry you're still dealing with the pinpricks! Is it only the ones on your forehead? I haven't dealt with those hanging around for longer than a week or so, but everyone is different. I had one neurologist who was super forceful with the injections (he bent several needles on me and snapped one right off when injecting into the knot on the base of my neck) and even those still healed up just fine. Has your doctor said anything about them?

I hope you'll stick with it because it does take time to get the best results, but no treatment works for everyone and that's okay - you'd mentioned aimovig in your tags, which I also tried a few years ago, and it only helped a little for me, but I wish it had done more because it was SO easy!

If you can see this, this isn’t directed at you because I blocked the person, but oh boy, nothing quite like someone telling you to “try taking Tylenol AND ibuprofen” for your chronic migraines to turn me into a colossal bitch.

Like, I’m sorry. Here’s me been experimenting with anti-seizure medication and a whole bunch of other nasty shit so I don’t walk into oncoming traffic and you really think my ass who had 200+ migraines in 2023 and developed occipital neuralgia in 2024 on top of the trigeminal neuralgia I’ve already had for years because the nerves in my head won’t turn off hasn’t tried over the counter pain relief?

I should be allowed to start biting.

[invisiblewarrioradvocate]

This is how I feel today... Find a way to fight and remind yourself even when you feel like you are getting to that breaking point, you are a fighter and will be stronger. 

[cptsdragon]

[albatross-albatross]

Almighty God Kabir can forgive the sins of His worshipper. He even forgives/destroys the most heinous sins.

- Saint Rampal Ji Maharaj

[21stc3nturyd1gitalb0y]

Okay, I needed to say something. Migraines can absolutely be a physical disability.

I have NDPH (New Daily Persistent Headache) which is a chronic headache disorder where you always have a headache. It’s a neurological condition, meaning there’s no physical explanation in the body for why it occurs. Physical pain is not just a side effect of my neurological condition, it is the primary symptom and reasoning behind my diagnosis. I also have severe migraines that impact my vision. I’ve injured myself because I couldn’t see or walk properly because of the aura.

Most people agree that blindness is a physical disability regardless of whether the source is a neurological condition. Similarly, Tourette’s Syndrome, epilepsy, and cerebral palsy are considered neurological conditions, and they can also still be physically disabling.

Neurological disabilities and physical disabilities are not mutually exclusive and there are disorders that are classed as both. Neurological just means that the condition is caused by something in the brain. While neurological issues such as migraines may not be physically disabling for everyone, severe cases can absolutely be physically disabling.

It’s ignorant to dismiss the experiences of people who are physically disabled by migraines or headache disorders, because many of us have been dismissed by others or had our pain minimized by people who don’t understand how severe neurological pain impacts the body. This is especially true of aura migraines which have a staggering rate of suicidal ideation (47.2%, with 13.9% of patients having attempted suicide.)

As I believe OP was saying, disability is complex and not every disorder can be neatly relegated to a single box.

the way people online have reacted to discussions about physical disability by loudly insisting on discussing the category of "mental disability" actually flattens people's understanding of disability and creates a binary, a mind-body dichotomy stronger than anyone who wanted to just talk about physical disability ever did. like firstly, mental disability historically referred to people with intellectual disabilities (ID/IDD). and two, if you say something like "physically disabled only" you're not actually saying what kind of disabilities everyone else has. only that it's not primarily physical. there's disability that don't really fit into the idea of there being only a physical or mental category. many disabilities straddle the line. like i have migraine. it's a common neurological condition, and it disables me. i personally don't care to put it entirely in either "physical" or "mental" because it affects me holistically. if there's a club saying "people with disabilities that physically affected them are welcome", on the basis on migraine alone i could choose to join, or decide not to. nobody is forcing a category onto me. but people insisting that the opposite to physical disability is "mental disability" is forcing us into categories. just... actually be specific. say mental illness or developmental disability or something. you won't get a word to encompass every disability that's not primarily physical without flattening a lot of frankly unrelated disabilities into one category. it is more accurate and useful to use the categories that exist instead of pretending there's only two categories of disability (physical vs mental) and that they're opposites. for context i have a physical disability, a neurodevelopmental disability (autism), mental illness, and my migraine/neurological issue. those last three are different. i would go to different groups to relate to others with those issues, like for example an autism peer support group or mental health support group. they don't need to be encompassed by "mental disabilities" and treated all the same

[nyheadache]

New Daily Persistent Headache may respond to TMS

Researchers at a hospital in Northern India reported good results in treating New Daily Persistent Headache (NDPH) with repetitive transcranial magnetic stimulation (rTMS). NDPH is a type of headache that begins suddenly and persists daily without specific features, distinct MRI presentation, or blood test abnormalities. It can present similarly to chronic migraines or chronic tension-type…