Contact me.

You are more than welcome to get in contact with me for any reason, so don’t hesitate and get in touch on:

iamtheneverendingheadache@gmail.com

I will always try my best to respond to all comments and emails, but please be aware there could be a slight delay in a response due to the nature of my condition. That being said I do try to respond as soon as I am able to, which sometimes is quick! 

 

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17 thoughts on “Contact me.

  1. hi,

    if you ever need a friend feel free to email me we are about the same age. I know the feeling. I still have a few but wel its not been that long for me. And i don’t see them that often and feel like i can’t be a good friend to them. I wish you all the luck with your surgery ❤ hopefully you feel a little better soon

    Love Anne

    • Hi. Same here. Thanks! feel free to send me an email with how your Neuro appointment went I’d love to hear and I will try and reply as soon as I can.
      Wishing you a low pain day!xx

      • Hi,

        Will email you an update about my appointment later tonight.
        Hope you have a love day too! xx

  2. Hello,
    I know it has been a while since you have posted this, but I just read it. I too have NDPH. It is so hard living with it. I completely relate when you say people get depressed from being in pain 24/7. It is the worst thing ever. I hate having to cancel plans, or call off work, or go home early from work, not go to class or do homework, or attempt to take an exam when my head is just pounding. People try to say they understand all the time, but unless they have NDPH, they do not understand. How are you feeling? Any good news?

    • So sorry you suffer from it too. I’m not so good but a bit closer to getting surgery however there’s been a slight set back of a few months. How are you doing?

  3. Hey! I understand your life is a living hell, so is mine. I was diagnosed with NDPH two years ago and the headache has been unremitting ever since. I would just like to tell you about the medicine Zolpidem, that is the only medication that has helped me during my worst times of pain. It’s a sleeping drug, but somehow it ease my pain. You should try to get a prescription from a doctor. I would for sure not be alive today if it wasn’t for Zolpidem. I wish you a low pain day!

  4. How do you endure with the daily pain? I got the diagnos two years ago and I’m getting more and more suicidal. What is your survival strategy?

    • To be honest I don’t know, at the minute I’m just trying to survive till surgery if that doesn’t make things better then I don’t know how I will cope. It’s been a very hard 7 years with pain and the depression that it has brought, this is my last hope I will probably fall apart if it doesn’t help.

  5. Hello, while I have not yet had time to read all of your posts, your blog’s explanation of your health issues sounds like my symptoms almost EXACTLY. I have been diagnosed with POTS, Raynaud’s, a connective tissue disorder, and issues with mast cells. I have been completely disabled for almost a year now, mainly because of the 24/7, 365 days a year horrendous chronic daily migraine. My POTS is no longer well controlled and the migraine is miserable every day and almost unbearable some days (definitely worse when my pulse is sky high and bp is bottoming out). I have tried one round of Botox with nothing but negative effects. I realize that it could take 3 rounds of Botox, 12 weeks apart, before seeing effects. I am looking into everything I can because I cannot live in this much daily pain, with nausea and dizziness and fainting and no sleeping forever. Have you ever looked into the possibility of a cerebrospinal fluid (CSF) leak? I am including this link that may sound familiar to you, too. https://www.shlnews.org/?p=1126
    So far I am not responding to treatments appropriately and am being admitted to the hospital for observation, more tests, and medicine experimenting. I do not know how you have lived in so much pain. I can barely stand it and am definitely not functioning, much less able to work and be productive. I have a Master’s degree and was previously living a full life, involved in many philanthropies and foundations and active on both undergraduate and graduate campuses. Thank you for sharing your story and being willing to talk to your readers. I am so scared. I don’t know how much longer I can be strong. I’ve had a lot of health problems over my lifetime but this has been the first time I have been completely taken out of the game. I will definitely be reading more of your posts. Thank you again.

    • Hey! I’m sorry you relate so much to my story and I’m sorry you’ve been really suffering too. I get how hard it is I am unable to work or study too due to my headache. I have asked my neurologist about CSF leaks many years ago and I have had many MRI scans over the years too and he is convinced I do not have a leak and I trust his judgement. But it is really worth looking into as to whether it could be the cause. I have never responded to any treatments either I recently had occipital nerve stimulation surgery as my last resort and only treatment options left and I’ve had a very bad reaction to the feeling of the stimulation. My brain does not tolerate it. I’m going in to have t reprogrammed soon for a new type of programming but I’m not hopeful it will be any better and I have been left in more agony than before I had the surgery.
      I don’t know how I have lasted 7 years either to be honest and it really hasn’t been easy. If you want to talk more to someone who gets what you’re going through send me an email on iamtheneverendingheadache@gmail.com always happy to chat and share stories. I hope my posts help you feel less alone.
      Sian x

  6. Hi

    I’ve been suffering with daily persistent headaches for 23 years and under hospital of Neurology for half of that. Only recently been described as daily persistent headaches. I’ve never met anyone with this condition do thankful for your blog.

    Are there any groups that meet in support with this condition as for me it can feel quite isolating with friends and family nor really understanding it.

    Ed

    • Hi Ed,
      Thanks for getting in touch. So sorry you have been suffering for so long. Is that national hospital of neurology in London? That’s where I go too. Who do you see?
      there aren’t any groups in person that I know of in the UK however there is a Facebook group for people with NDPH that is really good for support. If you send me an email I will send you over the details if you would like. My email address is iamtheneverendingheadache@gmail.com
      Wishing you a low pain day
      Sian

  7. Hi Sian

    Not on facebook at the moment. Came off for a rest! I’ll let you know when I’m back on.

    I was seeing Dr Shanahan for about ten years. I am now seeing Dr Miller. She is very good and I understand my condition much better with her.

    I was at the hospital last Wednesday doing a test using angina spray to initiate headaches so they could see my response. It gave me a completely different headache to my normal one which continued as normal! They’ve talked to me about the stimulator op but for me very much a last resort. I may buy the portable one to try it out.

    Cheers
    Ed

    • Hi Ed,
      Ah okay no worries well if you ever want to chat in more detail shoot me an email 😊 I see dr matharu there and he is great. That test doesn’t sound too fun, I haven’t had that one, what’s the reason for it? The stim was my last resort mainly because it was the only option I had left. But it’s been a nightmare, though don’t let that put you off in a rare case and it does help a lot of people.
      Wishing you a low pain day.
      Sian

  8. My heart breaks for everything you have suffered through. My son had NDPH for 15 months. I literally tried everything i found online: lyme tests, various meds, stimulators on his head, inpatient at Jefferson Hospital in Philadelphia. We saw Dr. Todd Rozen at the Mayo Clinic in Jacksonville Florida. He referred us to Dr. Matthew Kline in Bryn Mawr who is a pain management doctor. After a few test injection at various sites, he identified the exact place which made my sons head hurt more and did a cortisone injection directly into the site. He has been headache free for almost 4 weeks. I am hoping and praying this is the end of his ordeal. The possibility exists to receive more and stronger injections if necessary, but hoping we wont have to. I pray that you find some kind of relief and are able to live a normal life.

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