Was it a big mistake?

I’ve realised recently how many unresolved feelings I have about my illness, and how none of them have really changed over the years. It doesn’t matter how much I try to escape my pain, how much mindfulness I do, how much I try to accept this condition or even all the many many treatments I’ve had, my never ending headache still remains as strong as ever.

I’m 2 and a half months post surgery, the tweaking they did a few weeks ago (when they finally realised I was being severely overstimulated and it had caused allodynia hence the severe nerve pain at the back of my head where I could feel the stimulation) has relieved the allodynia but I am still experiencing headache pain at the back of my head which is not normal for me it feels like my normal headache has doubled in size. I haven’t really told anyone about it as I don’t want to let everyone down with the fact I’m still in a lot of pain. At the minute I’m in Dubai with all my family spending Christmas and New Year here as my Dad lives here, right now I’m led in bed in agony. The pain is horrific and has been since last night.

I know I should be positive about the outcome of surgery and I know it’s still really early but I have a gut feeling that the surgery I had is not going to help me. Which leaves me to feel completely and utterly upset and helpless that my last ditch attempt at a life with lower pain is not going to be successful. That I’m going to have to live with extreme pain for the rest of my life that prevents me from doing anything worthwhile, from being independent, from having some sort of resemblance of a normal life.

A lot of my feelings have come bubbling to the surface recently, feelings I buried deep within quite some time ago. The anger I feel towards life, the depression that comes with chronic pain, the complete and utter loneliness that I experience and the distraught I feel towards the loss of my normal life nearly 7 years ago now.

I’m trying hard to keep everything together, I mean it’s Christmas for fucks sake, I should be happy, right?! But at the minute I’m a mess, it’s also quickly approaching the 14th January, a date that messes with my head, the date it all started 7 years ago. Yes you say it’s just a date it shouldn’t effect me, but I feel like I lost so much 7 years ago on that date and it sends me down a deep dark spiral every god damn year.

I wish one day I could write a post to tell you all that I’m miraculously better or even just that surgery has reduced my pain; I’d settle for that. But I don’t think that will ever be possible. I know my headache better than anyone and I feel like it’s here to stay. I feel like it doesn’t matter what I try my headache will always win and no one can do anything about that.


8 thoughts on “Was it a big mistake?

  1. Hi!

    I feel you 200% i kind of got the diagnoses (chronic) clusterheadache because that fits my pain attacks the most but still know nothing about what my daily headache could be and they still seem not so sure about the clusters.

    I’m having a hard time to right now. My nights are bad and i’m run-down completly. I can sleep 2, 6, 8 or 10 hours and still wake up just as run-down or even worse than before going to sleep. It’s the worst. And being so run-down doesn’t help my mental state.

    I’ve had a long list of meds that don’t work or give such bad side affects that i have to stop using them before i can find out if they work, especially as some of them need higher dosis but i can’t even take the lower once.

    For now i have O2 for the attacks it works great. Also had a nerve block last summer which worked for 6 weeks but i already was in my good period and my second nerve block i had a few weeks ago doesn’t work or does not work as good as its suppodes 2. Also had some weird side affect from it. Tomorrow i’m gonna have to start calling to my neurologist(i’ve been to 4 hospitals by now and spoken to a lot of neuro’s) and my GP for a new plan and earlier appointmen and some sleeping medication.

    So i get it. Your world becomes so small. You get afraid of the higher pain level days. You don’t feel like yourself anymore. You wanna feel your age again.

    I’m not looking forward to christmas and new years at all. Being in one room with so many people. Its just to busy. To much noice and stuff. And speaking of dates. I still remember the first day i got my headache over 2 years ago. September 29 and then it disappeared 3 months later on December 25. But then i woke up in the middle of the night on September 26 2015 because of the pain. And then i hoped it would disappear again with christmas but it didn’t it just didn’t go away. So now i’m almost at 15 months and already going crazy. And now my best friend has gotten a headache a few months ago and now she totally gets me. All of a sudden she understands because she is living it.

    Hope that you will get some relieve soon!

    If you just wanna complain, talk, get something of your chest you can always send me an e-mail. a1vlienden@gmail.com sometimes you just need to talk with someone that understands. I think i’ve seen you tell your story on the fb of NDPH.


    • Hi Anne, sorry to hear you suffer too, I’m glad the O2 helps you a bit though. Yes I am on the NDPH fb group feel free to add me as a friend if you fancy a chat, or you can find my email address on the contact me section of my blog, always happy to talk to others.
      Wishing you a low pain time over this holiday period.
      Sian xx

  2. Thanks again for a real post. I think it’s so important to tell the truth about pain. I feel the same dread/sadness when my NDPH anniversary rolls around. Coming up on six and that just crazy to think about.
    It breaks my heart that this surgery didn’t help. Praying you have a nice holiday despite the pain. God bless.

  3. It’s horrible you are in pain despite having the surgery. It’s unfair. It’s frustrating. It just doesn’t make sense at all. Nothing helps it go away. It’s just so strange. As you know from my comments in your other posts, I too have had chronic painful and unrelenting head pain for years. It is rough for me and nobody understands. I’m glad you do post about your experiences because it is helpful to others who suffer. I just wish your headache, mine and many others head pain would just go far away and never return. You seem like a kind soul and you don’t deserve it at all. I was reading about some people who went gluten free and their headache went away. I was thinking about trying it since other attempts at getting rid of my headache have been unsuccessful.

    • I’m glad you find my posts helpful! I too wish all our pain would go away. Thank you. I hope gluten free helps you, I haven’t tried it though but I know it has helped some people. Wishing you low pain over this holiday period.

  4. I’m so sorry to hear the surgery didn’t work out. Maybe now they will put you on narcs and you will finally get the relief you are looking for. It is the only thing that hasn’t been tried. Happy Holidays to you.

    • Thanks, it’s still early yet and it could still possibly help me but from the start it hasn’t been good and I just have a gut feeling it’s not going to help. Hope you’re doing okay! Wishing you happy holidays too!

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