I wrote this on July 8th, 2018, while at Methodist Hospital. It shares the real feelings and experience I was going through at that exact time.
I was unable to truly explain my pain to the doctors, and at times it felt like they were not listening, or if they were they did not truly understand my words, so I decided to write them out. This is how it went:
I am not sure if my pain is lessening or just changing, but I am finding it very difficult to explain my pain. Before it was a migraine, my head hurt, more pain on my right side than my left side. Sometimes it was pressure where my brain felt like it was coming out of my nose, or it was throbbing which was worse when I laid down or just a general ache. Those descriptions seemed like enough before, but now they don’t. The pain is constantly changing and as soon as I think it is not as bad, then minutes or even an hour later I get a spike. Well, I don’t like the description ‘spike’. My head is the worst at night, like when they come in to do vitals, and I am even just a little awake I can feel how horrible and achy it is, but somehow I am able to go back to sleep right away, or not after too long with surprises me. (Me editing later: that was not always true there were some nights I could not go back to sleep for hours or even at all because the pain was so severe). In the morning its always been a horrible achy pain, always higher than an 8, and it feels a lot different than the pain I feel all day. Usually, within 10-40 minutes, that “intractable” morning pain begins to subside. Intractable: hard to control or deal with, difficult, stubborn (yes I had to look up the definition). The pain would not go away all at once, but gradually, then in some way a ‘day’ pain begins. Every day is different. I am having fewer days of throbbing headaches, and even fewer days of pressure headaches. But it feels like when that achy headache build it still builds to a very high point. I keep saying my pain is above an 8, but that is based on my original pain scale, not the pain that I am currently cycling through, even though it is not the same cycle every time. I feel like I am able to sit up and hold conversations for longer periods of time, but once I start to feel like talking is taking a lot of my energy the pain really comes along with it. Also, I’ve been doing my walk, showering, personal hygiene, and all that good stuff. For example, after I shower I feel like I ran a marathon and within 30-60 minutes I have a horrible achy migraine. On another note, I feel like before I was able to sleep during the day, like a little 1-hour sleep nap, now I can’t. Part of that is the fear of waking up with that horrible morning migraine. I don’t know if any of this is helping explain my pain, but I was told to be honest, and I am really trying. July 8th I can hands down honestly say that was the worst pain I felt since the ER. For like 4 hours I was so scared because the pain had reached a new level of 10 and I was scared I was going to be stuck with that. It did subside, but it definitely caused me to be fearful. I’m not sure if it was the Ketamine or other medications, or maybe just time that broke it, but I never want to feel that again. Some points during the day I seem to be more light and sound sensitive than others. I still can’t watch videos because of the movement plus sound is too much. The car alarm that has been going off for the past few days is annoying but not painful, but the bed alarm leaves a ringing in my ears for 15 minutes. I think I covered all the pain portion now medicine:
I am still hopeful I will find relief. I’ve now officially had this migraine for 3 weeks, and been here for 6 days, I think. I was hoping for even lower numbers, but I understand I am difficult because of the medications I am allergic to and sensitive in general. But please understand that I am in pain.