A community for people who self-identify as having a disability - physical, mental, neurological, or otherwise.
Migraines suck complete ass.
There is nothing worse than getting the warning signs on a hot afternoon, knowing you could resolve in half an hour, or you could be lying in bed screaming for hours.
I can offer tips of how I got mine under control, but I can absolutely appreciate that this is a vent post, and you may just want to say about what's going on!
It's several days later now but I would absolutely take any tips to add to my migraine toolbox. I've trialled several medications, my current one has destroyed my appetite and my sleep. I'm also on Botox, with still many breakthrough migraines. Tried glasses, adaptive lighting, ice, gammacore... It truly feels I've tried everything though I know that's likely not the case.
I think it sounds like you have it a lot worse than me, so apologies if I just regurgitate things you've already tried. And I hope you're feeling a little better this week!
The biggest proactive things for me in preventing attacks were kinda holistic. I tend to think of migraine like a forest fire, and the preventative stuff akin to forestry management.
Being really strict in life routine to avoid the body being any more stressed than needed (so, bed before 11, no screens after 10, food at 7, no snacks after 8, lots of water drinking) had the biggest impact.
It meant that when I did get an attack, there was more "slack" to deal with it, rather than it becoming a spiral each time.
Diet wise, cutting out a lot of processed fat/sugar, and reducing the amount of salt made a big difference too. Caffeine is a double edged sword for me, if you do currently use it, cutting down can help a lot.
And in the summer particularly, keeping tabs on exertion. I hate paying for taxis, but if I'm 3 miles from home and I'm getting the precursors to a migraine, I'd rather lose a tenner than get walk back and spend the evening screaming.
You're probably a lot more experienced in reactive action for migraines, and probably in another universe than me if you experience multi-day.
For me combining breathing exercises, meditation, and paracetamol helps enormously when trying to "dampen down" an attack, to use the forest fire metaphor again. I found that getting myself calmer had a positive feedback effect, and combining that with nsaid painkillers helped de-escalate things.
One extra thing I've just remembered: Sensory control kit. Ear defenders/plugs, a good quality blindfold, and a travel neck pillow. Using those, and sitting in a comfy chair helps me a lot during an attack.
Keeping head above chest also seems to be one for me, lying down seems to make things worse.
That holistic approach you mention is one of the very few things that gives me any quality of life, frankly. I have one cup of (caffeinated) tea a day and that's it. Salt is probably one of the few things I have to have a ton of but I'm also very regularly nutrient deficient if I don't keep on top of it (sodium, potassium, etc).
Since my injury, I just.. don't go out longer than a very brief period in summer. It knocks me down for days if I do and just isn't worth it. I hibernate in a bedroom, with blackout curtains, take care of the dog, and do precious little else. It's a very sparse existence to be sure but less agonising. Aside from ice, these kinds of techniques are about all I can use on a regular basis? My migraines are too frequent and easily triggered to rely on meds - the triptans I've tried either haven't helped or have made things worse and you have MOH with NSAIDS. Steroids are a handful of times a year thing and give me absolutely wild blood sugar levels.
I'm still working my way through preventative medication options. It feels like I've been through everything but I'm sure there's more. I've a trial of this medication for 6 months, 3 at this dose, probably 3 at reduced.
maybe listen to music and sing or hear podcasts? At least this does not really require using light except for choosing the content.
And your username is ducking awesome
I realise this is maybe a few days late, but if Ibuprofen brings you relief, I'd suggest trying Naproxen (which should last longer) and diclofenac (if you can get it, it's probably a prescription medication) - they're both quite similar to ibuprofen but are longer-acting and stronger, respectively.
Ibuprofen is what I happened to have this time, but I shall for sure keep that in mind in regards to the naproxen. I'm generally quite a big fan of naproxen but ibuprofen just works better with my cramps for whatever reason and I try to just suffer through my migraines (too frequent). I've never had much pain relief with diclofenac, not sure why.