Tag Archive | cluster headache

Fall Girl

Apparently my injury from my fall was visible in more way than one, which I am glad I know now. There is a lovely hematoma on my left ribs, and the radiologist is still not sure if I didn’t crack my orbital a little, but nothing more than a hairline fracture if at all. They might call me back for a CT scan this week because of the pressure and migraine I have had. There’s a lot of stuff up there that could be some kind of issue that isn’t visible on X-Ray.
Who knew you were still at risk for weeks after a concussion?! Not this girl.
I guess I am nowhere near the top of the learning curve here, which is okay. That leaves lots of room for improvement, and that’s hopeful.
My doctor recognized how stubborn I am about pain and going to the ER and gave me her cell phone number instead so I can text her with new problems and verify if I actually need to go get help, and so they can call her from the ER and figure out what to do with me. She even gave me painkillers without my asking! They absolutely don’t do anything for the pressure/migraine/spinning/eye issues, but help a good deal with the hematoma pain, although to be honest, I could probably continue to tough that out without anything, but on top of the migraine it’s hard to even smile without a little help. I had to do laundry and ended up sitting on the concrete for twenty minutes, everything spinning, trying not to panic or sob because no one else was home. I’m pretty sure I even put my face on that dirty floor, hoping I could cool off the fire in my head, but don’t tell anyone.

When I went to get my X-Rays and told the girls checking me in what had happened, how long I had held out before going into the doctors for my pain, I ended up with three techs clucking over me because just the twisting and odd movements I had to do for skull and rib X-Rays left me breathless, sweating buckets, and with ice cold hands, arms, feet, and legs. I get so embarrassed when my autonomic issues take hold, and I know I can’t stop it unless I sit or lie down for an extended period of time. I try to push through it, knowing that I never have the time to lie down like that. Soon enough I was back in the car, and my doctor called me with the results from the lab before I even made it home. She is awesome, did I mention that?

I have had zero energy, either cognitively or physically, lately, but am in a much, much better mood. What I have learned is that though my mood plays a role in the aggressiveness of my pain, or my perception of my pain, one of the two, mood doesn’t seem to have much effect on measured pain levels for me compared to the severe level of agony I experience during a flare. Being in a good mood despite severe pain is somewhat of an oxymoron. But it is possible, just not with the expectation that we will be happy 100% of the time.

Having a hematoma this large is a new experience for me, especially in a place you can’t avoid moving and twisting just to roll over in bed! Oh man, does that hurt! And it rolls around my ribs so that the pain can be in my back on just one side, or on both sides, or seeming to emanate from my spine itself.

can't sleep

 

I’m going to buy some cell salts from Hylands, one of the 12 preparations (Calacarea Phosphorica 6X, #2 Hylands 500 Tabs) is supposed to hopefully double my healing time. I have been taking Boiron Arnica 30C Pellets (3 tube pack)
internally, but it does not seem to be working its usual magic on this big ugly bone bruise.

Still wish I knew what I hit when I fell. Then again, I still have my eyes and my teeth, so I will settle for that being a victory considering such an epic fall in the pitch dark!

The lesson in my story is pretty simple, and something I feel most people have a better grasp of than I do: I am still supposed to go to the ER for trauma, even if it doesn’t directly seem to hurt. Even if it’s all too easy to blame fibro or CFS or spine damage and suffer in silence (well, not silence… but as far as my primary care knew), rather than go to a doctor. Especially with head trauma, what you see is not what you get!

 

In Full Flare

Currently I am working on not thinking things like “I want to disappear” “It would have been better if I had never existed” and several others super-negative self-reflections. I had stopped doing this, years ago, and thought these passive suicidal thoughts would not follow me into adulthood, but that wasn’t supposed to be my story, I guess.

When I am this miserable and at a peak flare up, and have dealt with weeks of unbearable pain already, it makes it so that it takes hours just to write one tiny post, my eyes at tiny slits, neck stuck in an odd position, lights and sound being overstimulating and making me feel like ants are crawling all over me and I’m going to have to get up and run out of the house naked if it doesn’t STOP.

And then, joy of joys, this new and beautiful cluster or occipital headache that will not quit. All I can say is, they aren’t commonly referred to as the suicide headaches without good reason.

I am surrounded by things I use to ward off pain, from rubs and tinctures and vitamins and supplements to prescriptions, massage neck rest, crystal piezo pen, DaVinci tool, back buddy, steaming mug of chai replacing my usual coffee, extra ginger and cinnamon, please. There is a bag of tart cherries next to me, a electronic devices all in one place, my contoured foam pillow, heating pads (yes, TWO), and a blanket all within easy reach too. Even some water and a raw food bar just in case I feel a sudden ability or need to put food into my body.

One whole side of my face throbs and twitches with this headache, it feels like snakes writhing around under my skin, biting and pulling apart my muscles and ligaments in my neck and the base of my skull, one snake curled around my eye, with his teeth sunk into my temple. Sometimes they migrate, to the strangest places in my body, if I move the wrong way or don’t rest often enough. The worst pain is a high spot on the back of my head on the right side that sends pain down my arm, into my face, up my skull, around and in my ear, teeth, and jaw, and straight down my neck and shoulder into my low back, causing my legs to just give out from underneath me with the aggressiveness of the pain. So I just keep repeating that i want to disappear, knowing I shouldn’t talk like that to myself and doing it all the same because it’s true. There is no happy thought for this kind of pain. I thought the broken rib feeling I have been dealing with for two weeks was bad, and that is not gone at all, but this is so, so, so much worse. It makes me want to rip my face off.

Here’s a pretty good illustration of that, and I wish I knew the artist:

Occipital and Trigeminal Neuralgia

I wish I could just take it off.

What do you guys do when you find yourself talking negatively to yourself or being unhealthy even though you know better? I try not to feel even more guilt about it, because I’m not gonna be perfect at managing this, ever. It’s not that kind of pain, it does not want to be “managed”. All I can do is hold on through the worst storms, and keep aiming for a month that is better than last month and the month before that, and hopefully when I look back, each year will be better. But right now, there is nothing better about this. There is only beautiful, high walled, fiery, unmoveable, vast oceans of pain. And I am out there, drifting in it. Just pain. It hit so suddenly, I didn’t have time to meditate, visualize, stretch, or treat it. What do you do when your doctor won’t treat your breakthrough pain or flare ups or even regular pain, you really don’t want to kill yourself, but you find yourself thinking about it because it would be nice to get away from the pain? I’m not this upset unless I’m in this much physical pain, I wish my doctors could see that first comes the pain, then comes the much more severe than usual desperation, anxiety, depression. It would be nice to think positively right now, but I’m not sure where it would get me, you know? Nice thoughts don’t make the pain better and I already took care of myself to the best of my physical abilities and it’s not enough. Berating myself for not thinking positively definitely doesn’t help. I just hold on, I guess, and try to not worry too much about the dark places my mind is going, knowing full well I don’t have the ability to act on those thoughts. This is just not… healthy. Not ideal. Not okay. I wish I could get the treatment I need.

What do you do when your pain makes you feel like you’re losing it? I am out of ideas, and have so little energy to try anything new that I almost feel stupid asking. Somehow I gotta get through this one, though, and I don’t know how.

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