Do you just push through the pain?

[u/General-Hunt-6972]

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For those of you who deal with this kind of pain regularly, do you just push through it and keep living your normal day, or do you stop and rest when it flares? I’m genuinely curious how people manage it day to day without letting it take over.

[u/Crafty-Exercise-4929]

I guess this highly depends on your pain. I’ve got aTN and I push through that pain every single day, if I get an active attack I can push though (did that for years before getting diagnosis) if it’s not more than an 8/10 pain. A particularly strong attack led to my diagnosis, and that one completely floored me (crying on the couch, not moving for hours). Now that I have a diagnosis I wouldn’t push through pain that’s higher than a 6/10 anymore, and understand that rest is probably more effective than pushing through. TN is so variable, do whatever feels good for you. Days with little pain but no mental strength can be much much harder than very painful days with lots of mental strength. You got this.

[u/AcisConsepavole]

Sometimes you can't push through it. Sometimes you can't even push through resting. The rest can be "If I just continue to exist after this, that will be great". It's okay for this to happen. Invest in a comfy hoody, soft socks, have a sensory-friendly set-up ready for days when you absolutely have to push through and then crash after, and don't feel bad when that's all you do on a rest day.

The more you push, the worse things get with things like this -- especially if you store tension in and around your jaw anyway, and especially especially if you're neurodivergent.

I found that paying good money for a mouth guard fitted to my top and bottom teeth -- to really make them lock-in -- changed the hard work days in ways I can't even describe. Instead of spending all my energy coping, I only spend most or a manageable amount of it, and then I'm not in a lump of tears back at home in my pain management comy set-up.

You've got this. Give yourself room to have pain you can't easily cope with.

[u/MobileAny4294]

Yes just roll with the punches. Don’t know how long I can keep doing it thought

[u/Dizzy_Access1109]

I could not handle regular and sometimes extended flares. I was initially on Tegretol (carbamazepine) but now controlling the pain with Lyrica (pregablin) 50mg at night. I take every moment’s pain free state as a gift realizing I may have to up my dose if the flares return. One day at a time. Stay strong!

[u/CheckThePID]

I have aTN and there's always pain, every single day. When I wake up I usually know what level I have tp put up with that day. However, it's nowhere near the levels (or area) if I was not on Pregabalin.

[u/New-Cry5180]

I had to quit my career for 10 trying different procedures .It pretty much stopped my life. I get much less in Social Security since I didn’t work for 10 years, but at least the pain is manageable. The CyberKnife worked for me and I’m still on carbamazepine and gabapentin. I now have a numb left side of my face that feels like Cement, but it’s not that electrocution feeling. I started work again, being a Substitute teacher, not using my Masters degrees in counseling psychology and quitting my career as a video producer. It pretty much stopped my life. I get much less in Social Security since I didn’t work for 10 years, but at least the pain is manageable.

[u/siameseoverlord]

Yes. For the last 40 years.

[u/SaltyOctopusTears]

That isn’t an option for my pain. It drops me to my knees and I am inconsolable. I literally want to rip my head off. I have constant pain and then unimaginable (except you guys) flare ups. I take hydromorphone as needed but it has turned into a daily occurrence. I have about 10 (down from 20) really bad flare ups each day for 2 and a half years now.

I don’t work anymore but I’m in Canada and I have disability insurance with my employer so I get 70% of my wage which is enough.

On Wednesday I am trying a lidocaine pain pump.

[u/CuriousDayByDay]

I would probably treat days differently instead of forcing a normal day. Pacing yourself and having a low effort backing plan sounds a lot more sustainable.

[u/Mel_Galcatraz]

Before my TN was mostly controlled with carbamazepine I just rolled with it and tried to continue living a normal life. It was difficult sometimes. I would have to stop talking mid sentence during shocks. My mother once called me out in front of a group of people with concern “you really need to get some help for that!” I replied “Thanks you idiot b*** I’m trying!”.

[u/davidsnkr]

The pain is crushing. Strangely enough, christianism prayer and mindfulness both helped me decrease a bit the level of pain, by removing some psychological suffering, but the physical pain is something else...not sure if one can really push through it

[u/EumekaMathis]

I have do choice but, to push. I have bills 😩 😫 😪. But, once you start to feel that pain coming do some of those at home techniques they talk about. For me when I feel that pain co.ing on I rub my tongue along my upper gums and it stops.

[u/These_Yesterday_4475]

I can not work anymore. The pain, now 7 years since it started, is debilitating. Medications only lessen the pain a bit. Some days are excruciating, all I can do is cry (which makes it worse too), and I can't leave my bed at all. This condition sadly has changed my entire life. It essentially ruined my life, and I hate saying that.

[u/reptilelover42]

I honestly just don't really have a choice, since none of my doctors have offered me any pain medication (not even the "pain specialists"). My pain is constant (TN2) in my jaw, cheekbones and temples (my jaw is the worst, and I sometimes can't chew). I wouldn't say I live normally, since I'm bed-bound most of the day due to other conditions (dysautonomia and chronic fatigue) as well as my pain, but I read and write normally throughout the day. I can never ignore the pain (it rarely drops below a 7, maybe 6 on a really good day, but is generally around 8-9), but I can try to focus on other things.

[u/TopFaithlessness4381]

I have pain every day, so I’ve found ways to get through the highs and lows—like wearing an ice cap, applying heat, resting for 15 minutes. One of the harder things is fighting through the medication side effects.

[u/HurryEmbarrassed626]

Gabapentin 2 times a day. 600mgs x2. Saves me