My psychologist had said something to me that I think a lot about. That no matter what I will have pain, aside from the fact a cure could come tomorrow or a decade from tomorrow… point being I have to deal with this pain and I have to find a way to have a life with it.
How is the question? With fibromyalgia I can see how this is done. Pacing, moderation and staying within your limits… and you can have a mellow, careful life in there.
Migraines, intractable every single day migraines, are not fibromyalgia. They do not respond to pacing or moderation and saying within your limits does not prevent them. Trigger management even doesn’t stop them because not all triggers are remotely controllable and some are stack able. Not to mention once you are daily and intractable it just seems you are stuck in the migraine cycle itself. What is triggering them? Existence? Life? Breathing?
It is a different sort of pain that doesn’t respond to the whole concept of pacing your activities. It just hits. And when it does you are functionally useless.
I have yet to figure out how to live with this. Have a life with it. I attempt things and it really doesn’t work out. The pain and then the assault on the senses make everything miserable. Just leaving the house amps the pain and sensory overload. Driving a car… makes it worse. So by the time you get anywhere, you want to leave already.
Medication, triptans, can be take 3 out of 7 days. But they usually only work for 2-4 hours before the migraine comes back. Yesterday we went out to friends. I took my triptan, which has about a 60% chance of working and it just dulled the pain… but I knew it would be dulled for 2-4 hours. So that was, well, okay-ish. Second problem was massive nausea. I took my double dose of zofran. And hoped it would kick in. It didn’t. We had dinner there and I could barely eat at all I was so sick to my stomach. I was really not feeling myself. Or I suppose I was feeling myself, because I always have a migraine. But I was uncomfortable socializing in pain and nauseated. But I tried. And when we left I felt like I failed because I felt so cruddy. But at least I faked it pretty good. Then migraine came back full speed ahead after, so there was a the least that. Triptan gave me chest pains again though.
Non-triptan days are quite horrific overall. I don’t want to do a thing. Today was of course non-tripan. And I was useless. Tomorrow is non-triptan and I was hoping to get some errands run, but leaving the house like that is torment. Last time I did that I hit a car in a parking lot. So there is That fact.
Where is this life supposed to fit in there? Everything is too loud, too bright and too filled with aggravating scents. My brain hates movement of any sort. All the other symptoms can make me dumb, confused, dizzy and just out of it.
My home is my safe haven. Where I can control my environment and do things in silence and darkness. The safe zone.
He said you’ll always be in pain so you might as well live your life. However, I will be in significantly more pain when I do things with the migraine. The pain gets outrageous fast. The best I think a person can do is take advantage of those brief triptan windows. And before the migraine hits… or I should say the prodrome, sometimes you can get things done in the prodrome but of course it does dumbify the brain.