I wish I could have known then what I know now. All I knew then was there was something in my head that didn't belong and I wanted it out ASAP. I wish I had gotten more opinions, talked to more doctors, and taken more time. They told me recovery was going to be hard, but being a non-cancerous tumor, I figured there would at least be a 'recovery'. But there isn't going to be, so far as I can tell. Instead, things are just different, a new kind of normal. I look different, I think differently, I feel different. I hurt pretty much all the time. I'm tired pretty much all the time. I don't enjoy things the same as I did. Half the time I smile and nod because I don't hear what's going on. In the back of my mind I'm always worrying about eye drops or if I have all the different meds I need on hand or if this headache is one to worry about or not.
I read the posts I wrote before surgery and notice how funny they could be, and how I complained about the other whiny patients I read about at the time. But now I'm one of those whiny people.
I had an MRI today as a follow-up to my ER visit last week. I also went back to neurology. I apologized for just walking out of the ER and explained what the steroids had done and they said it was okay, they understood. They said that can happen with steroids, and also with agitated post-seizure patients. I'm doing well on the 1/2 dose of fludrocortisone, at least as far as not going totally manic. I'm also not having so much of an issue with my heart rate and dizziness. So the steriod and propranolol seem to be controlling those symptoms.
But my head hurts. So. Bad.
Dr D checked out my MRI and consulted with the neuro radiologist, and they said it looks good - the same as last year. Which isn't to say it's "normal", but there's no tumor or regrowth or other major issue. Just the known weirdness from the surgery. I suppose having a hole in my head and a lumpy skull is okay for me.
Also, the dead looking area that was crushed by the tumor and/or removed during surgery. That part that I "don't miss".
I wish I knew what I was looking at more. But I'll just have to take their word for it that it's all okay.
At the end of the month I go to cardiology for more workup on the POTS thing. I don't know if they're going to do a holter monitor or a tilt-table test or just tell me I'm fine or what. But Dr D wants whatever is going on with my heart to be okay so we can then see how much my head hurts when my heart isn't racing all the time.
I don't really think that's the issue, though. After doing more reading, I really feel we're going about this all the wrong way. I feel my issues are more mechanical in nature. My head was literally in a vice, with my neck bent at an unnatural angle, for 10 hours, while someone drilled holes in my head. I think that probably has a lot to do with why it hurts. Not a chemical imbalance type thing more typical with other more organic migraine types. But, you know, I'm not a doctor.
The only thing they gave me today to help with the worsening headaches was an increase in my nortriptyline. Even though I've been on it for almost a year now and have had maybe 3 total months of help from it. The imitrex and motrin don't help either, but no one seems to believe that.
Maybe when I'm in appointments I don't look like I'm hurting. Maybe I should be more dishelved, pale, teary. I don't know. I just don't feel believed. But really, I promise I feel really bad. And this long with headaches this bad has me at the end of my rope. It really sucks.
I read this afternoon about something called occipital neuralgia. "Occipital neuralgia, also known as C2 neuralgia, Arnold's neuralgia, is a medical condition characterized by chronic pain in the upper neck, back of the head and behind the eyes. These areas correspond to the locations of the lesser and greater occipital nerves. ... Occipital neuralgia is caused by damage to these nerves. ... The symptom of this condition is chronic headache. The pain is commonly localized in the back of head and around or over the top of the head, sometimes up to the eyebrow or behind the eye. Because chronic headaches are a common symptom for numerous conditions, occipital neuralgia is often misdiagnosed at first, most commonly as tension headache or a migraine leading to treatment failure or addiction. Another symptom is the eyes being sensitive to light, especially when headaches occur."
The headaches I most frequently get are a kind I call the "shot in the head" headaches. They feel like the back of my head has been blown off. Sometimes there's a point in the front of my head, either in the bridge of my nose or middle of my forehead, where it's like a bullet entry point pain (or what I imagine it to be) - more sharp and localized - and then the big intense pain in the back of my head where it's like it's exploded out. And sometimes there's a searing, burning, shooting pain along the top of my head. A lot of times the pain also goes down into my neck and tightens my shoulders. I think this sounds pretty similar to the occipital neuralgia description.
I would love to be off medications. If something's working, then that's fine, I'll take it. But to take a bunch of medicine that doesn't seem to do anything seems stupid. It's a waste of money, waste of medicine, and unnecessary damage to the rest of my body, plus who knows what all side effects. If we can just figure out why I'm hurting, I feel like I can find therapies that can be better directed at curing the problem instead of just masking the pain. I'd feel much more positive about acupuncture, massage, etc. But I feel like I need the doctors to help me find the why first.
Now we're finding all these other possible things wrong with me, but I'm still convinced most of the problem started two years ago with "you have a brain tumor".
