Migraine Day 15

Friday morning I woke up and just knew it. It was time to go to the emergency room. It was day 15. I had been fighting this migraine for over 2 weeks and there comes a day when you just have admit defeat and ask for help. This happens every now and then. Most migraines last several days and eventually I can fight them off with the meds that I have at home. But after this much time, it’s not just that the pain is too much to bear, it’s also that I’m not sure how much more medication is safe to put into my body. I worry about that so often. What are these meds doing to me? I try to just shove it down. I have no choice (at least not a reasonable one), and I don’t know what to do about it.

So, I woke up Friday morning and the pain was searing, throbbing, dull, sharp, all of it. I was afraid to get into the weekend where we couldn’t get in touch with my doctors to back me up once I was in the ER. Last time I was there, the ER doctor on my case was very difficult. I learned that without my neurologist to back me up (which she did), I could possibly wait all that time, get back into a room, and get denied the treatment that has worked now for 4 years by IV, because my hospital has made changes to their policies on pain management. I needed to be there while my doctor was in her office.

Another thing I’ve learned about going to the ER for a migraine: Don’t go alone. I have an invisible disease. Any invisible disease requiring pain meds automatically makes you an alleged drug seeker. I’ve been in the hospital a couple of times without DH and I have been shocked at stark contrast in treatment. It’s inconvenient, it would be so much easier to have him stay at home and take care of the boys while I do my thing (which is pretty straightforward), but nope. He has to be with me. There’s no way around it.

I am so grateful that we have good friends. I had several friends that I knew I could call to help with the boys that day. One was over within 45 minutes, and never even blinked about the fact that I turned her entire day upside down. Her family ended up taking care of my boys from around noon until 9 o’clock that night. Amazing.

Once at the hospital, we waited maybe 3.5 hours to finally begin the first phase of treatment. I wish there was a Migraine IV Drive-thru somewhere. Just put in the IV, we already know what works, in and out, let’s not waste a room on this. It just feels so silly. We did end, however, end up with one of the most competent, thorough doctors I have ever had that evening. He actually took the time to go through my records from the past several years of ER visits and check on my migraine treatments to see if there was anything else that we could do to help. No ER doctor has ever done that before, and he did find a few ways to update my treatment that night. After 2 examinations, 10 shots of meds, 2 liters of saline, 1 mild side effect, and a partridge in a pear tree, I was in far less pain and we were finally done. It’s hard to describe how it feels once I’m that medicated. Everyone very much wants to hear that that I’m completely better. But I’m usually not. I was reading a migraine blog recently and a guy said it perfectly*: “It simply feels like – this is hard to describe – a sheet is draped over the pain and is held down. The pain is still very much recognizable to me. I can feel its presence, but it is held down.” ( That was how I felt when we left the hospital. I knew it was there, deep down, but it was nice to suffocate it some, finally.

This is how it works: You take some kind of migraine med (Imitrex, Maxalt, DHE) and/or a “cocktail” of meds (group of 3 meds together-Reglan or Phenergan or Zofran or Compazine, and Benadryl, and Toradol or Ibuprofen) to treat the actual headache. Then you get pain meds for, well, the pain. If you only take the pain meds, in a few hours you are going to be stuck with the same headache you had before because you didn’t do anything to treat the actual problem. And this doc included some steroid treatment as well.

And I have almost all of these medications at home. I had been taking them for weeks. But getting them through an IV, all at once, gives that headache a punch that it just doesn’t get when you take the meds orally.

Saturday morning, my big boy had a football game that was a good 45 minutes to an hour away. There was no way I would be able to get up that early and then sit out in the weather, so I stayed home with the baby. I woke up with…a migraine. Dude. I got a cup of coffee, tried not to panic, and went to stare at my medicine cabinet, wondering what on earth to do.

I called my neurologist and we came up with a plan. By that evening, things were feeling a little better. I’ve taken this weekend really easy, really slow, and I’m hoping that the Migraine From Hell is finally dying a slow and painful death.

When I get an attack that lasts this long, I have to really analyze what I’m doing to antagonize my body. Something is causing it. Something is continuing to perpetuate it. I’m trying so hard to stick with the Xr Epigenetic program, and I think the progress is coming along, albeit extremely slow. About 3 weeks ago I switched over to soy milk. I like it so much better than all of the nut milks, but I had suspected a while back that it might be irritating me. I had pushed those suspicions aside and decided I could use in in small quantities in my coffee. It’s the only change I’ve made, and it would make sense that if hormones are a trigger, soy would be a problem. I’m more than a little annoyed to be removing another thing from my diet. Soy is so complicated. It’s in everything. But I do wonder if it could make a big difference. So now I am wheat free, sugar free, gluten free, dairy free, …and soy free. It’s not as freeing and you would think.

 

 

*Not sure why my link function isn’t working, but here is the blog referenced above: https://migraine.com/blog/patient-perspective-opioids/

 

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