A hundred knives in my head.

I don’t know what to say, other than the fact that I feel like there are a hundred knives in my head and that it feels like my brain is getting crushed inside my skull at the same time. 

I’ve hit a 9 on the pain scale, been there pretty much all day, I can’t do anything but lie here in bed in agony feeling miserable (it’s taken a lot to be able to write this post which has taken me about 5 hours to fully write and I’m thankful I’m not sensitive to light). There’s nothing I or anyone else can do to make it any better, nothing eases the pain so I just have to suffer. Which makes me more angry and miserable. 

I’d been having a bad week anyway with the pain, but today is the worst it’s been all week. 

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7 thoughts on “A hundred knives in my head.

  1. I’m sorry you’re in so much pain. I actually suffer from chronic headaches as well, I don’t see a doctor or anything though. I figure what can they really do besides give me meds? I have sumatriptan for when the migraines get bad. Do you actually get treated for this? I always thought it was just something you deal with.

    • I have new daily persistent headache which means I’ve had a headache which most if the time is migraine level 24/7 since January 2010. I see a neurologist in London at the national hospital of neurology and neurosurgery I’ve been on every preventative med out there but none of them helped any I’ve had infusions nerve blocks and Botox none of which helped I’ve tried countless alternative treatments none of which helped. It’s the reason in so depressed cause I’ve been in constant pain for so long with no relief. If you want to know more go on my blog and read my story, it’s long but it explains everything. I don’t have anything for the pain because all I’m allowed is triptans (which don’t work) as I’m on the waiting list for occipital nerve stimulation surgery and I’m not allowed anything stronger because of that, which is my last hope off less pain. I’m called the never ending headache because I have an never ending headache.

  2. Oh no 😦 so sorry to hear your pain levels are so high! A 9 is far too high to have to cope with on your own. Xoxox. The stress maybe made you more susceptible. I wish there was something out there to take your pain down at least, if not away.

    I feel for you. Xo hoping it lets go soon.

    • Yeah it was horrible, all this anxiety isn’t helping things at the minute.
      Thank you, feeling a bit better this morning as the pain is a bit lower xx

  3. Anxiety always makes my daughter’s HAs worse. I’m sure all your worrying about college has exacerbated your pain. Try to concentrate on something positive. She’s younger than you (17) and has had NDPH longer than you so I know your desperation. As a mother, I can tell you there’s nothing more horrible than not being able to make it better. I urge you to not be so hard on yourself. You are a powerful young woman to have endured the last few years. I always tell that to Lauren. She stresses over her grades bc the HAs make it hard to concentrate and remember but she is doing it and so will you!!!! You cannot let these HAs rule you. Forget meds. They don’t work on these HAs. In fact our neuro doctors say NDPH rebounds and becomes stronger when you take pain meds. Her pain mgmt is neurofeedback and that helps so much with the anxiety … I call it the hamster wheel…stress makes HAs worse and that creates more stress etc. Inquire of the pain mgmt center if they are familiar with neurofeedback. We are on spring vacation. Lauren looked at me yesterday and said her HA was a 4. Music to my ears. Hers run 8-9 constantly yet she is in honors and AP classes in 10 grade. We use Algebra and Chemistry tutors to help her. With the right help you can and will succeed. Sadly she has not been able to train in her sport lately (she’s a competitive spring board diver) bc school is so demanding but she has all summer to work with her team and coach. I’m sorry you’re feeling badly now but I really have seen great progress in your taking control since I started following your blog. You can do this. I believe in you. 🙂

    • Thank you, yeah all my anxiety at the minute isn’t helping things. I’m trying to lead a better life despite pain, but when the pain gets bad and there is nothing I can do about it it really gets me down again, cause all I can do is lie there in pain feeling miserable, and then I worry some more so it’s a vicious cycle. I don’t take meds for it, triptans don’t work and I’m not allowed anything stronger cause of the possibility of surgery, so there is no chance of rebound headaches.
      I still train in my sport which is taekwondo, I haven’t let the pain take away that.
      I’m still waiting to hear back from one college and also waiting to hear back about my drivers licence, I don’t like all the waiting it is making me more anxious which isn’t helping my pain either.
      I’ve had a really bad week, I hope my pain and anxiety levels ease up soon so I can go back to feeling slightly better.
      Thank you, I hope I can too 🙂

    • Could you elaborate what kind of neurofeedback Lauren got? QEEG based, or passive infrared hemoencephalography?
      My 13-year-old daughter is struggling with NDPH. We are trying everything we can to help her.

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