At my wits end dealing with daily, chronic headache after neurosurgery in 2001.

Posted , 2 users are following.

In 2000 when I was 16 a doctor botched a routine inner ear surgery that left me with a spinal fluid leak and hole between ear and temporal lobe. 2 neuro surgeries, 1/8 right lobe removed from staph infection and I'm fighting a daily battle of chronic, relentless headaches that leave me hopeless, helpless, and a stones throw from wanting to die. I have 3 children, a loving husband, and an amazing job as a clinical social worker that I'm missing out on the full potential because it's a struggle to get through my day. Does anyone have a similar issue going on that can offer suggestions? I've been on every pain medication made for pain, done massage, acupuncture, biofeedback, hypnosis, meditation, you name it. I'm open to anything! Help, please.

-Suffering in Alaska

0 likes, 3 replies

3 Replies

  • Posted

    Hi, I'm sorry you're having the same sort of symptoms as me, it REALLY is a pain in the

    @£$€. We have different ways of getting to the same problem. The commonality being some kind of piercing of the dura (that surrounds the brain). I had cerebrovascular surgery in 2012. Once conscious again, some weeks later, I found that I was having horrendous head pain. I assumed that it was just for a while, that they would stop once I'd recovered enough to leave hospital, they didn't.

    The last time I saw my surgeon, he said that if the headaches continued beyond the first 18 months, a sufferer would generally be stuck with them for good. He then realised that it was, at that point, 24 months after my surgery. So I'm stuck with them. The only medication that seems to make the slightest difference, is ibuprofen, I take lots of pain meds for MS related neuro pain, but it's an over the counter one that slightly helps my head pain.

    If there isn't a medical reason why you shouldn't try what helps me most, I recommend you trying: in a seated position, sitting towards the edge of your seat. Place your feet about 18 inches apart. Tip your upper body forward, until your face is parallel to the floor. Quickly swivel your head from side to side. It makes my heart, briefly hurt more, but then it's as if the cerebrospinal fluid pressure has balanced out, relieving my pain. I realise that it sounds a bit silly, but it's the only thing I've found that helps the very worst of the pain.

    I hope that this helps, if not, I really hope you find something that does.

    • Posted

      That should read: makes my HEAD hurt more...

      I really should proof read BEFORE pressing reply, sorry, it definitely doesn't affect my heart in ANY way

    • Posted

      Thank you for that. I'll try your approach for certain. I appreciate you taking the time to respond to my post, truly.

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