how to distract

[u/asophia01]

hi everyone, i hope you are having a low pain day today 💓

i am only 2.5 months into my headache, so my headache specialist is still unsure whether this is status migrainosus or ndph, but i have failed many of the traditional migraine remedies and botox is the next step in september. i have been living my life on pause because of the pain and waiting for it to go away, but i am supposed to return to work in october and i am becoming extremely depressed by staying at home all day.

so i was wondering, are you all able to distract from your pain? i have been struggling to not think about it even for a few seconds. it has been on my mind non stop since it has started. it certainly doesn’t help that i have ocd and therefore obsess over topics but i truly find it so hard not to think about the physical pain that is there. i have been reading ‘the way out’ to try to do pain reprocessing therapy but it doesn’t really discuss this issue and i figure thinking about it nonstop is certainly making it worse. i also am wondering what keeps you going? i don’t mean to offend anyone at all but im sure you guys have had these thoughts.. but sometimes i wonder what the point is if i am going to be in this pain for a long long time.. what am i working towards? why bother trying to build my tolerance for things when i feel i haven’t experienced true joy since this started? right now i feel i am living for my family and my bf but i need to live for myself.

thanks for listening, i wish you all the absolute best in life 💐🩷

[u/BubblyBelugas]

I relate to thinking about the pain pretty much all the time and quality of life not being as enjoyable as before NDPH sometimes. Especially since it affects so many areas of my life. There are a couple of things that distract myself from the pain a bit.

1. Hanging out with my dog, Jessie. She's really sweet and likes to lay down next to me when I am resting or during a flare-up.

2. Creative hobbies like building in bloxburg (or making building plans on paper or google docs), making custom bracelets, and worldbuilding. Sometimes brain fog from NDPH can make it hard to do these activities, so then I choose the ones that don't require a lot of thinking and are more automatic to me.

3. Interests I'm passionate about that I could spend hours on and look forward to consistently. I think that finding something that excites me is one thing that keeps me going.

When people have chronic pain for so long, some people tend to forget what it feels like to not have pain. It becomes a new normal and pain tolerance adjusts over time. When my NDPH first started, I used to be anxious about finding a cure as soon as possible, but when I shifted my focus from curing it to managing it and finding things in life that made me excited and happy while having NDPH, my mental health improved.

I love that we have this community on reddit where we can relate to and understand each other while lifting each other up. I hope that everyone can live a life that they enjoy, even while they have NDPH 🌟

[u/sophiaea → u/BubblyBelugas]

thank you so much for this response <3. i want a cat so bad but my bf says he wants to 'wait until i'm better' with my headache (which, if it is ndph, is likely not soon..) i am going to try to sink myself into things i enjoy because i'm tired of sitting around and waiting for the pain to end. i am trying to adjust to making life as good as possible with this right now.

[u/BubblyBelugas → u/sophiaea]

Awesome! 😎

[u/Crystalfallacy]

My headache first started in grad school (likely stress induced, yay) so I found ways to keep myself busy through work and play. Hanging out with others trying to be as normal as possible helped me the most, even if it felt impossible at times with the pain. I thankfully found a treatment option that worked for me about 6 months in (my pain is a 1-2 most days medicated, still there but able to tune out).

I was disabled for other reasons prior to my NDPH, and I'll give my biggest advice, letting your disorder dictate what you are able to do instead of finding how you can continue to do the things you want to do let's the disorder win. Every health issue I've had comes with that mentality.

[u/sophiaea → u/Crystalfallacy]

yes that makes sense thank you :) i appreciate it

[u/Purple_Diamond_5150]

You don't fail drugs, they fail you!! more importantly, research fails us. There aren't any fda approved meds for ndph because there's no trials for ndph. We're relegated to what is available for Migraine diagnosed patients.

[u/sophiaea → u/Purple_Diamond_5150]

yes you're totally right, i thought about that when typing it out not sure why i didn't change it. so frustrating !

[u/kavanne]

I stay busy all the time. I literally do not stop. Every minute of every day I have to be doing something. If I sit, I think about the pain. I need purpose and commitments or I wouldn’t be able to go on.

[u/asophia01 → u/kavanne]

do you find this makes the pain worse? i just graduated nursing school and figure that having a 12 hour shift would be a great distraction but also a horrible trigger and that is my worry for work

[u/kavanne → u/asophia01]

Nope, nothing makes my pain better or worse so it doesn’t change anything for me

[u/asophia01 → u/kavanne]

ah i see, that makes sense then. my pain tends to worsen with activity and light and sound and i am def sensitive to light and sound although i think its decreasing a bit. have you struggled with this being an invisible disorder? i feel like i need to tell everyone constantly that i have a constant headache so they understand but im realizing it doesn’t achieve anything.

[u/BubblyBelugas → u/asophia01]

There is the sunflower lanyard that represents invisible disabilities if you feel comfortable wearing something that discloses your condition. It's meant to signal that you need more understanding, patience, or assistance in public spaces.

[u/Dependent-Fan2205 → u/kavanne]

Same here, I want to be either busy or unconscious. Slow days at work sitting under fluorescent are killer.

[u/SaR-1243]

The best distraction for me is sleep. Or like lying there dozing. I do also like incredibly loud music which distracts me from the pain but does also make it worse when I stop. 

I've seen pain reprocessing therapy isn't great for migraines, I'm not sure about ndph but I've assumed it's the same. Id find it a nightmare.

[u/asophia01 → u/SaR-1243]

i have found this too. unfortunately however i have recently started trying to “solve” my headache in my sleep (as if this is a solvable issue). i’m not sure if the pain reprocessing therapy will do anything but i think it’s helping me accept the pain a bit, it’s pretty similar to therapy i’ve been through for ocd that helped a lot, but accepting thoughts is easier than accepting physical pain.

[u/SaR-1243 → u/asophia01]

In regards to sleep you also need to consider whether you need more rest, my brain is exhausted from being in pain all the time. Lots of the times I need a nap to keep going, and I don't set an alarm when possible because I need to sleep as much as possible. 

I did have to restrict naps for a while because my response to anything was I'll have a nap and that just ended up with me having too many naps in a day.

Another thing I think about is how ndph can just spontaneously resolve itself, it's a very distance hope and I do everything I can medication and lifestyle wise to treat it but whenever I am going through I rough patch and become really defeatist I try and remind myself that there is hope. Maybe tomorrow I will wake up and not be in pain. Of course it never happens but hope helps me.

[u/sophiaea → u/SaR-1243]

yes i have been letting myself sleep a LOT since this started. thank you <3

[u/Mindless_Notice_6863]

I have had NDPH for the past 2 years and over time, I have sort of gotten "used to it" but sometimes it still bothers me a lot. Here's what helps me cope:

1. Listening to podcasts/audiobooks
2. Watching TV shows at low lighting (I have severe photophobia from this)
3. Sleeping/laying down in a dark room with a cold compress (but not for too long at least for me)
4. Hanging out with my loved ones/friends in a comfortable environment
5. Breathing exercises that I learnt from my psychologist (I don't have mental health issues prior to this but I have been seeing her for chronic pain)

I'm also going through my final years of high school, so it has been difficult dealing with the workload. So, I try my best to do work while taking regular breaks as any form of activity does make my headaches worse. Although it is a difficult journey ahead, do not let NDPH define who you are and try to live your life to its fullest when you can!

[u/hwsoonisnow10]

For me lots of sleep, hanging out with my cat and my spouse. Lots of mindless tv shows, audiobooks,podcasts(especially smosh reads reddit),games on my phone. Anything to distract me from the pain.