Sorry you are dealing with this. I have daily, but not constant, headaches that started in 2020. Not long Covid, but woke from a procedure designed to help with another #ChronicIllness, with completely new limitations. Acceptance and adapting are key. Had to give up my goal of return to prior. #NDPH
Passing a strange milestone today. Few months ago, noticed I was over 1,800 days of headaches, so calculated my 2000th day, set calendar event & forgot about it. Last night, during dinner at Wyandotte Gathering, my phone sends me a notification to not forget my upcoming 2000th headache day. #NDPH
This is Spinal Tape.
I'm going in for a lumbar puncture #SpinalTap tomorrow to check my CSF pressure possibly related to my #NDPH. In preparation, I have tried to get appropriate recovery supplies, but alas, #SpinalTape was sold out.
Graph of 3-day history of barometric pressure for Muncie Indiana from https://barometricpressure.app/results?lat=40.1936892&lng=-85.3865271 Shows a drastic rise, spike high, then plummet below starting pressure.
Am I the only one that feels like I got run over by this barometric truck? #Migraine #NDPH #ChronicPain #barometer
There is also an accessibility angle. With #ADHD, sitting doesn't promote progress or retention. I remember things in spaces associated with activities. I also have #NDPH and sometimes all I can do is listen in the dark. Entertainment or productivity reduces the loss I feel w/ #ChronicPain.
Same. I even put PDFs into TTS reader. I consumed 121 non-work books this year thanks to Libby and Audible. Only finished 1 physical book, but started and moved around at least 10 others. Schedule and #ADHD keep me from finishing. W #NDPH sometimes low volume soft listening is all I can manage.
Is it bad that I'm actually happy my recent brain MRI found poss CFS leaks & may explain why brain feels like it's in a vice most days? I don't know that they can do anything, but with nearly non-stop headaches for the last 5 months, at least I know I'm not going crazy. #ChronicPain #Headache #NDPH
How is this my first #commuterbike ride this month? Been a heck of a headache month. #NDPH #cycling #ChronicIllness #saynotofossilfuels #readingridingresearch
As someone with light-induced headache pain, I always forget how painful and exhausting an eye exam is. Why do I always think I can function after that kind of torture? #NDPH #Migraine
Please, pretty please, put targeted electrodes in my brain, please. #ChronicPain #NDPH #ChronicIllness #invisibledisability
youtube.com/watch?v=SYWW...
Sorry I won't get to say "bye" to friends & colleagues in person. I learned a lot, had several great discussions & have new ideas and context for the work I am doing and aspire to do. #NDPH won't sideline my goals and objectives, even if it dictates when I can be present fully. Godnott! Vi ses! 3/3
First day (partially) on campus for the week and 1st #commuterbike rides of the week. Had to bear a hasty retreat as #NDPH flare made screenwork and reading unbearable. #ChronicPain #ChronicIllness #cycling #saynotofossilfuels #readingridingresearch
This isn't sustainable. Hope it passes soon. Until then, I may not be able to keep up my normal workload, let alone a personal life. #ChronicPain #NDPH 3/3
Both muscle pain & headache go deep into my core exacerbating my mental reaction to the pain which also doesn't help the feedback loop. My whole nervous system is on a hair trigger. I've missed 1.5-2 days of work for pain the last two weeks. #ChronicPain #NDPH 2/3
I'm having a new (or revival) of what I'm starting to think of as a season of pain. My #headache has been starting stronger than has been typical for last few years. Having muscle spasms in neck & back that play in a fun feedback loop w/ headache (chicken/egg thing). #ChronicPain #NDPH 1/3
So today I celebrate my 1,827th straight headache day, & that I have been able to carve out a way to persist through suffering, & come to terms with (mostly) the fact that I will always have limits on what I can do. It is not a happy arrangement, but it beats the alternative. #NDPH #anniversary 6/6
My headache is old enough now to be going to Kindergarten, and boy do I wish I could send it there (but teachers don't need any more headaches, so I guess I'll hold onto it). #NDPH #anniversary 5/6
The headaches don't fit a typical diagnostic bin (some are migraine-like, some are tension-like, some are lovely combinations of sensations), & I was lumped into a generic category of New onset Daily Persistent Headaches. #NDPH #migraine 3/6
I woke next day w/ a headache; assumed anesthesia hangover. I was wrong. It was the 1st of thousands of headaches (little & big) that became a near-constant companion. At first, they were crippling. I couldn't work more than a few hours, & couldn't do much of anything else either. #NDPH 2/6
Kinda snuck up on me, but I get to celebrate(?) a major milestone today. On July 28th, 2020, after yrs of stress injuries & other issues, I had a parathyroidectomy to get my body to correctly regulate my calcium cycle. The surgery apparently went reasonably well for its intended purpose. #NDPH 1/6
Can't tell if I'm having dozens of muscle spasms or simple nerve pain. (One I might be able to ease, the other I endure, but trying to ease one could make the other worse, so I'm not moving.) #chronicpain #ChronicIllness #autoimmune #NDPH #IsItJustMe
Any of my fellow #chronicpain ( #neuralgia, #arthritis, #NDPH, #migraine) folks having a particularly bad string of pain days? I was shaking and almost vomited last night after the Del Com concert and am wallowing in intense pain radiating the length of my spine.
I have had a really bad headache week. And a couple in the last month. I have daily headaches ( #NDPH ). My wife has had one for last 2+ days. Not sure if atmosphere, or stress of the continuous torrent of s&*t from Administration.
My child has had a migraine attack for 18 days
My kid has had a constant headache for 481 days
I want robust medical research that will discover the cause of New Daily Persistent Headache and figure out how stop the constant pain.
#NDPH #Migraibe #Headache #IStandForScience #ChronicPain
Episode 6 - New Daily Persistent Hell (NDPH) just dropped! podcasts.apple.com/us/podcast/c...
open.spotify.com/episode/2wpH...
If listening isn't your thing, we have a writeup of the episode on our substack: open.substack.com/pub/covidlon...
#LongCovid #NDPH #CDH #covidisntover
Holy air pressure, Batman! #headache #NDPH #ChronicPain
The pressure inside my head is so intense right now. It seems all my pain sensors are on overload as well. #Migraine #NDPH #ChronicPain
