Nocturnal Musings #16: Now What?

Nocturnal Musings #16: Now What?

It’s 7 am, but still pitch black outside. Such is October. Sunrise isn’t for another half hour.

I’m not in the best of moods this morning. While I sort of successfully got my sleep switched over so I’m not awake all night, now I can’t sleep for more than 2-3 hours at a time, so I’m constantly tired. Yesterday I slept from roughly 2-5 am, then 4-7 pm. Tonight (today?) I don’t even really know when I slept. I may have gotten 2 hours. But my head hurts too much right now to sleep, even though I’m still tired.

But the main reason I’m not in a great mood is that I got my lab results back.And they were normal. Now don’t get me wrong, I’m really glad they were normal! At least it means that I haven’t wound up with any more problems as a result of the tumor removal, which was five weeks ago now. And it means I’m on a good dose of Synthroid.

But…now what? I still feel like trash. My head still hurts all the time. I have no energy. So what do I do?

I’ve re-started my full migraine prophylaxis regimen that my neurologist put me on back in February: amitryptyline (whatever dose I want, right now it’s 10 mg), magnesium 400 mg daily, coenzyme Q-10 400 mg daily, and vitamin B2 200 mg twice daily. So this means 9 pills in the morning and 4 pills at night. Maybe I should increase my amitriptyline again? I need to be careful with that one; if my dose gets much higher than 20 mg, I have a really hard time peeing (stupid anticholinergic side effects…) Maybe the vitamin B2 will give me some energy. I never noticed a difference before the surgery, but we’ll see if it makes any difference now.

Dr. Recinos told me last week that if my labs came back normal to go see my neurologist. First of all, it’ll take me 3-4 months to get in to see him. I need help now. But even if I were to see him, what else can he do? I can’t change up my migraine prophylaxis; he put me on the regimen I’m on because it’s the safest (relatively speaking) for pregnancy, which will hopefully happen sooner rather than later. No Depakote or Topamax for me.

So now I really don’t know what to do. I go back to work after 4 1/2 months on leave in less than 2 weeks. And I’m terrified. Other than the fact that I’m not having as much dizziness, I feel no different than I did before the surgery. But I’ve heard these headaches can linger for a very long time. I’ve stocked up on 5-Hour Energy, because even though they’re disgusting, I really don’t think I’ll be able to get through a shift without something.

I know I need to be patient. As my mom said, my body has been through hell this year. But life isn’t going to let me slow down. There will be no mercy once I go back to work. I’m expected to be fully recovered, even though I’m far from it. I’m so scared I’m going to push myself too hard and something awful is going to happen. But I don’t have a choice.

What’s a spoonie to do when you don’t have enough spoons to start with?


0 thoughts on “Nocturnal Musings #16: Now What?

  1. I’m glad you don’t have AI, I am shocked though. Your symptoms sound just like secondary. What was your 8am Cortisol number?
    I’m sending you lots of love, peace, and healing! ❤️️

    1. It was 11.8. 30 minute level was 27.5 and 60 minute level was 26.0. The report says any response above 18 is considered normal. I’m glad, just a little frustrated that it’s not the answer to my problems!

    1. Yes, still continuing after my brain surgery from 5 weeks ago. I’m told it takes a long time for the headaches to go away, but I’m really getting sick of it!?

        1. It was transphenoidal; since the tumor was on my pituitary gland they were able to go through my nose. So at least the bone they cut through isn’t visible since it’s in my nose!

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