NDPH – Kevin’s Story

Man with HeadacheAll of our stories are the same, in many respects. Most of us remember the day and time that our headache began. Many of us have been suffering for years with no relief.

Our lives have been changed. NDPH has cost us all something. A hobby? A job? A spouse who couldn’t stand by and support us through the  pain?

And not all of those suffering with this have a dramatic story to share. Many just suffer in silence and push through to the next day. And the next day after that.

The following is the first in a series of stories that I will be sharing here on the blog and ultimately in my book about NDPH.


Kevin’s Story

Good evening from the outskirts of London.
I first became aware of continuous headaches at the beginning of 2011 – and put it down to at the time, lots of complex eye surgery (retinal detachments cataracts etc). After spending thousands of GBP on spectacles with tints, prisms etc a consultant at London’s Morefields Eye Hospital suggested I seek other causes for the headaches.
After an appointment with a neurologist the specialist pretty soon diagnosed NPDH.
My version of this gives me orbital pain – behind both eyes and is largely with me all of the time day and night.
My neurologist has tried the usual – spinal scans, brain scans etc etc and introduced me over the years to a catalogue of drugs – Mirtazipine, Topamax and more recently Nortriptyline (only managed to get up to 20mgs – lethargy effects were too great).
During the last few weeks i have started to develop dizzy spells and light headedness that were not part of the NPDH over the years – and i have taken a decision to try to stop the anti depressants like one of your other contributors – dizzy spells etc are really bad but i fully expected to go through this.
Can I ask if any of your other contributors have also had a gallbladder infected with gallstones? – I have this currently and are awaiting a decision to remove my gallbladder – but us NPDH sufferers are always trying to find a link to their headaches – however small that might be.
I design washroom partitions as my day job and came up with the solution for London’s 2012 Olympic stadium – I thankfully, have very understanding colleagues who allow me to put increased effort into the good days and essentially write off the really bad days.
For all of your contributors that are in relationships – naturally it is our wives, husbands, girlfriends, boyfriends etc who have to suffer just as much as us and let’s hope that the medical profession – somewhere down the line can make some breakthroughs with this terrible disease.


Do you have any thoughts or recommendations to share with Kevin? Have you had gallbladder issues related to NDPH or a medication you took to treat it? Please share in the comments!


NDPH – Kevin’s Story — 11 Comments

  1. I have tried the same medications as kevin, and also had a lot of side effects… i reconize a lot in his story…
    But i have also a question, is there someone who also is very tired all day?
    And i really want to get contact with people who suffer with ndph…
    You can find me at twitter @geertje1985

    • I have had a constant headache now for 2 years I remember the exact date it started I honestly thought I was going to die iv never experienced pain like this in my life the symptoms were terrifying,vertigo,tinitisirregular heart rythem,visial distortion,noise adversion,atixia,nystagmus,going to the loo more often and the pain in my head ears and neck was excruciating I went through all the tests like you all and tried all the medication like you all my life just stopped in its track and being a single mum of girls I just couldn’t look after any more without help its something that will always live in my memory I am currently on lycra and flunarazine and noticed the huge difference with the flunarazine it hasn’t cured it but its brought the pain levels down and the dizziness so I can actually function daily so I would definatly suggest flunarazine to those of you who haven’t tried it and we all live in hope 1 day a cure will be found for everyone who has this horrific disease.

  2. I have had one constant headache for 32 years now. I had meningitis when I wax 15 and have been left with a debilitating headache day and night ever since. Nothing makes it better and nothing makes it worse. It doesn’t change with light sound stress happiness. It wakes me up every night. Like the guy in this story I have had numerous medications for prevention over the years including mirtazapinr and topomax(topiromate) which gave some relief for a good few months but when I came off that combo it was back to the bad old days. When I tried to restart the combo it didnt work any more which i believe is quite common. I I have tried every alternative therapy privately and through the pain clinic. There isn’t a tablet that I haven’t tried. I’m currently on no prevention meds but need morphine dihydrocodeine and naproxen antiflamitory plus a new med suggested by my headache specialist neurologist: methysergide ( deseril). I am finding this better than triptans but it can cause internal scar tissue round organs like heart so can only be taken 5 months at a time then a break of a month or two. Had occipital nerve blocks and they didn’t work. Had test for hemicrania continua (indomethacin trial) with negative response. Had high dose intravemous steroid therapy – felt awful and didnt work. Currently waiting for dihydroergotomone infusions in hospital for a week to give temporary relief from pain and to try to detox from morphine. Also waiting to have Botox treatment when it becomes available on NHS in Scotland in April/May 2013. Not holding out much hope but if it improves severity and frequency then quality of life will be better. I’m holding down a full time job out if sheer stubbornness as I don’t want this headache to steal my life.
    I’m too young to be a zombie lying on the couch on agony everh day feeling sorry for myself. I have attended a neurologist for the past 6 years and when she came to the end of the road with treatments to offer me I was referred to a headache specialist 1.5 years ago. It was this doctor who gave me my diagnosis of NDPH. It was such a relief to have some affirmation that this was not a bad/long term migraine which I’d been telling everyone for years that it wasn’t and that it wasn’t a rebound headache ( which every doctor and my now separated husband have been telling me for years). It also felt like a life sentence because NDPH Ldoes not respond to treatment or meds. Up until my diagnosis I had been holding onto hope that perhaps after the menopause or when I was older I would have a better pain free life. Now I have had to come to terms with the fact that this is my life and it won’t be changing ever. I’m not giving in though. I am fighting for my rights to keep being offered something else. I know I won’t be cured but I am looking for just a little bit better quality of life. Relief for a couple of hours each day would be great – even better would be one day pain free each week. Who knows. It’s such a help reading your stories and comments to know that someone out there knows what it’s like to be me. My old neurologist told my husband on the phone that”your wife is a drug addict. The only reason she had headaches is because she needs her next fix. When she is off all meds she will have no headache”. Incidentally I have been off all pain meds 3 times in the past 6 years and the headache had been unchanged every time. My husband went from being my biggest supporter to jumping on the rebound headache band wagon. I’m afraid it was the straw the broke the camels back and now we’ve bend separated for 5 months. It’s such a shame. Now I’m facing a lonely life on my own starting from the beginning again and coping with this constant pain the best I can.

  3. It is so hard to be in that situation and I fell for you guys as I’ve a cousin who suffers from the same situation. Seems like meds are not that effective and so she was advise to have a regular check up from the Doctor and undergo some therapy. So far she’s doing good now but it didn’t stop us from searching for the right and permanent solution. As of now she’s regularly on Remedial Massage Adelaide

  4. Kevin,

    My husband’s headaches started in Feb 2011. He had a constant headache for about 6 months. Then along came sharp pain behind the eyes. We’ve been to every type of doctor and specialist. Headache specialists, naturpaths, chiropractors, physical therapists. About 10 months in he started becoming dizzy all day with headaches inbetween the dizzy spells. He has had periods of exhaustion and very stiff and sore neck and shoulder muscles. After about a year he was diagnosed with Lyme disease and possible other coinfections. He doesn’t ever remember being bitten by a tick but has it none the less. Last week we received his first positive Lyme test from Igenex Labs. I urge you to consider this diagnosis but warn you that many doctors do not believe in “chronic” Lyme infections. I wish you the best. I must be so awful as I know it’s awful to watch someone in such pain.

  5. Kevin, is there a way to remove the stones safely without surgery? My doctor had me remove my gallbladder in treatment of lyme disease (I had constant headache), then said it didn’t seem to have helped any of her patients after all and stopped that practice. Antibiotics (lots) eventually cured my headache. Also, a cranio-sacral therapist told us vision and headache like you describe (vision and balance issues) is from lack of flexibility in skull bone sutures around eyes. You may wish to try a trained and experienced therapist. Wishing you luck in your search for relief.

    • Susan:

      Can you elaborate on your Lyme treatment? What is lots of antibiotics? I too have had a headache a bit over 3 years. I’ve been seeking Lyme treatment from a fabulous doctor in Wisconsin for over a year. I was on various antibiotics for 9 months and now I’m back on another round for 2 months. Love to know what antibiotics you took, how much, etc. especially towards the end when your headache was cured.

  6. Hi there. I was diagnosed with NDPH about 5 months ago. After my doctor ran out of options I was then referred to a neurologist who gave me the diagnosis. Had never heard of it before but am now beginning to see its more common than I first thought. I’m currently on 70mg of nortriptyline which I take at night. I’ve had two MRI Scans, one with contrast and the other without. Both came back normal, other than some degree of brain atrophy. Consultant said he’s not concerned and neither should I be.
    The nortriptyline leaves me with such a dry mouth and I also get muscle twitches. I’m also on fluoxetine as I’m struggling with anxiety, mostly induced by NDPH.
    When I asked the consultant what happens if this medication doesn’t work, “We try another” he said. It appears that some medications work for some people but not others. It’s about finding out what works for you I suppose. I fly for a living but have been off work for six months as I’m unable to cope with the pain and with so much medication inside me.
    I just hope that I, and others find some relief soon.

    • Is there any possibility that you could have been exposed to Lyme disease? I ask because you mention muscle twitches, which could be a response to the meds, but could also be a symptom of lyme (along with the headache). I know that I say “check for Lyme” to everyone that stops by my blog, but seriously, if even one person can get out of pain then it’s worth my nagging!
      I hope that you can find something that will reduce your pain soon so you can get back to work.

  7. Hi there. I know the last comment on this was 3 years ago, but I too have NDPH. I think it may be just a coinsedence but during a liver ultrasound doctors found I have a gallbladder polyp.

  8. I have yet to be fulling diagnosed but from doing my own research, I may have this condition. Since January 15th, 2016 I have never not had a headache. I had one of the most severe headaches when I just stood up.

    Since then I’ve had an MRI, X-rays, blood work — all normal. My good friend is a pain management physician who has been treating me. His injection didn’t work. The pain meds work a little bit and sometimes make it worse.

    This whole thing has been a mystery to me. I’ve just sort of lived with a headache yet I can function. I’m able to make it through work and be productive.

    Male – 42 years old
    Software Engineer

Leave a Reply