May 20, 2016 scottcjones 5Comments

I’ve been feeling great lately. Borderline spectacular, even. Been going to Grouse Mountain on a regular basis again. Eating right. Going to bed early. Stepping away from the ice cream (my most indulgent indulgence). Blah, blah, blah, etc.

My ferritin level is back up, which makes a pretty dramatic difference in the quality of my days. Low ferritin levels, as I learned last year, are the goddamned worst. Still sucking down the old iron supplements by the handful. (Constipation can be a real danger when taking iron supplements in this quantity, though it hasn’t been for me so far.) (I wish I was a bit constipated sometimes.) Last ferritin test was in the mid 70’s—I should ideally be back in the 150 range—but mid-70’s is worlds away from the 10-15 readings a couple months back. Higher ferritin level means I’ve stopped taking my daily one-hour naps (or sometimes two-hour) in the afternoons. I’m stronger at the gym, too, easily running 5-7 kilometres a day now.

It’s amazing the way that a higher iron level can give you jolt like this, and make you feel entirely whole and human again. I appreciate these higher iron levels now, in a way that I never did before.

And I felt like I was in the clear there for awhile, firmly back on the right track, until earlier this week when the old rug was pulled out from under me again.

Since I got sick in 2014, I have routinely suffered from chronic 48 to 72-hour headaches. I usually get the headaches once every three weeks or so. It’s not “just a headache,” either. It’s feeling depleted, rundown, exhausted on a core level. I can’t get out of bed in the morning when I feel like this. If I make the mistake of lying down on the couch for even a minute, I’ll likely stay there for the rest of the day.

I hadn’t had one of these 48-to-72-hour episodes for awhile, and had assumed that they were somehow connected to my ferritin levels. With the levels being higher, I figured that—fingers crossed—I’d left them behind.

I haven’t.

This week, one of those old, ratty headaches settled in again. It felt like an 8-pound shot-put had landed squarely on my forehead. The headache vexed me for two straight days. I still made it to all of my meetings; still delivered most of my deliverables. But I certainly wasn’t at my best while doing those things.

Other symptoms when I feel this way: I feel dehydrated, beyond thirsty, during these stretches, even though I’m drinking (as I always do) vast amounts of water. And I feel foggy-brained, which, I presume, is from the pain. For the record, the pain is usually located on the right side of my forehead.

Reading makes the pain worse. Even watching TV is challenging when I’m feeling this way. I’m bored as hell when I have these headaches. Sometimes I moan, which makes the cats come and lie down on top of me. Which is admittedly very cute.

I always feel completely doomed during these episodes. Always feel like something is still wrong with me, and that these episodes are “The Signs,” and that they should be heeded somehow. Have I told my doctor about them? Of course I’ve told me doctor about them. What do the Canadian doctors say? They say, Eh, sounds relatively normal.

That’s it.

I wonder sometimes if these chronic headaches are a sign of something new manifesting itself in my body. Something even worse than a heart infection….

I had night sweats for two full years before I was admitted to the hospital and, at the 59th minute of the 11th hour, had open-heart surgery to remove an infection that had been growing (and growing) there for the past two years. Up until that moment, doctors had given me the “Eh, sounds relatively normal” response to that one, too.

5 thoughts on “This Should Probably Be Written Down Somewhere…

  1. To my (non-medically-trained) mind the most likely case is migraines. A lot of what you mentioned are typical migraine symptoms. Dehydration, 72hr headache, sensitivity to light. The kind of migraines I get are only a few hours and visual symptoms (I go partly blind for a while… fun!) followed by a bad headache.

    I’ve known people to get them over the course of days and not have any of the visual symptoms (“scintillating scotoma” I believe it’s technically called).

    Migraines are benign so treatment is basically “deal with it” and some form of prevention/pain management. Blood thinners, Propranalol, Advil… that sort of thing.

    I know it’s not uncommon to develop things like this particularly after taking heavy dosages of a powerful medicine like you did during your recovery.

    On the other side, I’ll add that what (I believe) is the main difference between Canadian and American doctors is that A’s have less resistance to throwing patience through (expensive) tests/specialists because they’ll just bill the insurers and everything collects their pound of flesh whereas C’s have to answer more to rising medical costs and have to make an effort to not send “young and healthy” patients to DefCon5 where they can help it.

    Unfortunately for you, Scott… you look unreasonably young and healthy, particularly for your age (as your previous post pointed out) and my advice is you should advocate for yourself a bit more when in the doctor’s office. Maybe you already do… but if not, this is my bit of wisdom living in the Canadian system all these years.

  2. Sounds a lot like something I had/have going on for a number of years.
    In 97 I got the impact of a car going 90km/h into the back of our car and through the back of my head. I had a wicked case of whiplash and thought it’ll all be good in due time. Well due time passed and I got more and more headaches over time with many of the same things as you describe.
    Now understand I’m no doctor, nor do I play one on TV, but I know when things ain’t right.
    It turns out that the whiplash had caused a slight shift in one of the vertebrae putting pressure on the nerves in my spinal cord basically buggering up the works caused from the scar tissue formed as the muscles post whiplash healed themselves basically pushing the vert over a little.
    I did a whole whack of physio and massage to reduce the pressure and things got a bit better. Now years later there’s still the odd day when things suck and no matter of stretch/head/etc. helps and I can always tell when the barometric pressure is changing…..but it’s better. I do a lot of those simple exercises regularly and it keeps me free to bury my brain in running an indie gamedev company, having a little on on the way, and doing what I can to stay above ground on a daily basis post heart attack (another thing we have in common) about a year ago.
    I’d suggest looking into if your neck/spine is all good. (No…I sure as hell am not advocating chiropractors!) Check it with a regular doctor and examine the option. It helped me!
    Best of luck Scott!

  3. I’m not an expert, but it does sound like how I feel when I get a migraine. Low energy, moody, feels like your reality is “foggy”, horrible headache pain (I usually get it on the right side as well). It’s not fun. I don’t feel like myself for a few days and it’s draining.

    Maybe start documenting when you get them and see if there’s any correlation between when you get headaches and what you did/ate the day before? Can’t hurt!

    I wish you well, Scott.

  4. I have had health issues for years due to a high prolactin level and a body that felt like it was giving up on me. Every doctor told me the same thing, nothing to worry about, we don’t have answers for you but take this drug and have a scan done on your brain every year just in case a brain tumor pops up. Kind of a bummer way to live because the drug made me feel worse and everytime i had a headache i was like THATS IT! IM A GONER!
    Anyway, my backstory is to let you know I finally found someone who gave me answers instead of pushing me aside. It is not good feeling when you think something may be lurking in your body but nobody can/will help. I dont know how the medical community is over there? up there? across the pond? but an internist who is a bit shunned by the regular medical community is where i found help. He sat with me for 8 hours going over every symptom and explaing correlations between all of them. We are still working on my core issue but I feel a million times better following his advise. Yes. Some of it is hippy dippy but it’s working and frankly, I’d sacrifice my pinky toe to a moon fairy for some peace of mind and staying alert for most of the day.
    Just thought this may be of help because if a friend hadn’t recommended it I never would have gone outside of Mayo and MD Anderson (im not knocking them, if i had cancer or a real health issue then thats where I’d be) but the only one who has helped with my symptoma is a doctor just outside of their boxes of boxiness

  5. Sounds like a migraine. Could be related to anything really. Stress, environment even the medication you are on. Maybe switch to a different kind of iron supplement. Maybe there is an ingredient in one of them causing the symptoms. Also maybe ask for a CT scan. No harm in looking further. Working with Doctors I have found some are amazing and other don’t care or just prescribe anything to anyone. If you have a good one, he or she will investigate your health concern as they took an oath to help people. Advocate for yourself!

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