My story.

On the 14th January 2010, I got a headache like no other, so different I can tell you date, approximate time and exactly what I was doing; but that doesn’t really matter. What matters is I still have that exact same headache today.

To begin with I thought it was a normal headache, but it was worse than any headache I had ever had before. I took some over the counter paracetamol and ibuprofen and later went to bed. However, when I woke up in the morning it was still there to welcome me. After having it 24/7 for a week I started to experience tingling, numbness and pain in both my hands and then my feet. My mum then took me to the doctors, who sent me for my first MRI. The following day I went to the hospital to see the neurologist there for the results, he thought I had a tumor on my pituitary gland so admitted me to hospital for further investigation. After another MRI, this time with contrast, the tumor was ruled out, I still had an agonising headache but no blood tests showed any abnormalities either. I spent a week in hospital being given numerous medications, none of which made any difference to my headache. Towards the end of my week there the tingling, numbness and pain in my hands and feet had subsided, but my headache remained as resistant as ever. I was told by the neurologist on discharge ‘you have a migraine, here take this Topamax and it will go’. I didn’t feel that what I was experiencing could just be a migraine and didn’t have any faith that this doctor actually knew what was wrong with me. I felt fobbed off so refrained from taking the medication, instead I found a new neurologist; who was supposedly a headache specialist (though in my opinion not a very good one). He did agree it did not sound like simply a migraine but didn’t offer any other suggestions as to what else it could be. He tried me on many medication trials including one of Topamax to see if anything would help my pain. However, all treatments were unsuccessful at even making a dent in my pain levels, and he seemed to eventually lose interest in helping the girl who always had a headache.

I started to get very depressed, I was in constant severe pain and it was really getting to me. I couldn’t think, school and studying were hard and friends were disappearing, they too fed up with the girl who always had a headache; and was now depressed.  In April 2010 I started to self-harm, I don’t remember exactly what thought process on which ever day it was that led me to pick up something sharp and cut myself, but something did. I self-harmed to take the pain away in my head just for few minutes, the relief it gave me became addictive, it was the only relief I had so I didn’t feel like I could stop, and I didn’t really want to.
Eventually I started seeing the school counsellor, in the beginning that was very hard for me as I’m not good at talking to people about how I feel, back then it was almost impossible and she had to almost teach me to be able to do it. But to this day I still think she is the most amazing person ever, I owe her so much and I am so grateful for having her in my life, that we are still in touch and are now friends, and her continued support means so much to me.

I stopped seeing doctors for a while, both neurologists I had tried in Dubai had been useless and not understanding in the slightest, I was starting to lose faith that anyone could help me. I sought out some alternative treatments; not all at once, I spread them out over the next couple of years. Acupuncture, osteopathy, cranial osteopathy, physical therapy, reiki, none of which helped in the slightest. The acupuncturist that I saw around September 2010 was intrigued by my case and spoke with the GP at the practice about it. She was also very interested and wanted to try to help. I was relieved to have found a doctor who was interested and wanted to try to help me. She was lovely and a great doctor and supported me the best she could, she did research and we tried a couple of different meds, that unfortunately didn’t help.

From the age of about 12, nearly 4 years before my headache started I had suffered from these black out type things, however they got progressively worse as I got older leading to black outs every time I stood up. By the time I was about 16 maybe they were so bad some of them had turned into collapsing on the floor, shaking and jerking like I was having some sort of seizure. My resting heart rate was too high and my blood pressure too low, but they couldn’t figure out the exact reason for these symptoms. My GP in Dubai sent me to cardiologists, one of which told me it was possible that my heart would eventually start to go into failure (which now knowing what is actually wrong with me, was a bit of a load of waffle). My GP then recommended I go back to England to see some doctors, what we both thought I had they would never had been able to diagnose in Dubai.

In the summer of 2011 I went back to England. I first saw a cardiologist, who wasn’t much help and then a neurologist for my headache. After a short stay in hospital in London where they didn’t really have any answers but thankfully referred me to a doctor that deals with autonomic dysfunctions and after testing he diagnosed me with Postural Orthostatic Tachycardia Syndrome, the reason for all my heart rate and black out symptoms, and a lot of other symptoms I had been suffering with. I was put on medication and then monitored with follow up appointments every few months He then also sent me also to a Rheumatologist who diagnosed me Ehlers Danlos Syndrome Hypermobility, a genetic connective tissue disorder. The doctor also sent me to a neurologist as I had always stated that my headache was my main problem. I was referred to a headache specialist. The first neurologist I have ever liked and had a lot of respect for, he listened, he understood and I really felt he cared. He diagnosed me with New Daily Persistent Headache – Migraine Variant, which was what I already suspected I had but had never had a diagnosis from a doctor. Over the next 3 years I left no stone unturned in regard to trying treatments, medication preventative trials, nerve blocks, Botox, infusions, but unfortunately none of it provided me with any sort of relief. I travelled back from Dubai every 3 months for consultations with him for all of this, but I was happy with that, knowing that I was in good hands.

Throughout all this I was getting increasingly more depressed, continually self-harming for some relief. School was not going well, my GCSE’s I had taken when my headache had not long started were good grades, but not as good as they would have been without pain. And my A levels did not go well, school was too hard because I was in too much pain, along with medication side effects. Year 12 got repeated nearly 3 times.

On September 30th 2012 I took a rather large overdose of anti-depressants that I had been hoarding for over a year. I couldn’t take the pain anymore and didn’t want to continue with a life full of suffering. I ended up in the intensive care unit for 3 days, being fed charcoal through a tube down my nose. Suicide is illegal in Dubai, but the police came to see me when I was unconscious and then forgot to come back, but the consequences could have been very severe for both my family and I if they had returned. It’s not something I’m ashamed of happening but the majority of people who know me both now and back then, are completely unaware that this happened.
My school then decided that I shouldn’t go back until I was well enough and my pain levels were under control, so in other words I would never be going back to school. I then had a trip to England to see my doctors and a god-awful psychiatrist. After a few weeks, I went back to Dubai. This was followed by a couple of months of doing slightly better depression wise by not immediately wanting to kill myself, and having stayed clear of self-harm for a few months. I then took a downhill turn into deep depression and feeling suicidal, along with relapsing badly into self-harm, told the relevant people involved with my mental health in Dubai. My idiot psychiatrist gave me a full bottle of pills instead of a prescription, knowing full well I was suicidal, that my mum picked up prescriptions and then they were locked away and dispensed by her to try and keep me safe. I had a bottle of pills in my hands which I felt had two options: go home and take them all and hopefully not wake up, or drive to see my school counsellor and hand them to her, we had a pact and I didn’t feel I could break it and lose her trust and respect. So that is what I did. After that it was pretty clear what needed to happen now, between my counsellor and my parents it was decided I needed to go back to England, possibly for quite a while to get adequate mental health care (that Dubai cannot offer) and closer support from my specialists in London.

I came back to England a few days later April 2013, presuming it would only be a month or two. Avoided inpatient treatment on a psych ward, and ended up with visits from a psychiatric nurse each day for half an hour. They were okay, but there was a big lack of understanding as to my health issues and how they affect my depression. So, all in all pretty rubbish and did not help. After a month, I was moved to the local mental health team and appointed a care co-ordinator to come and see me and talk for an hour once every 2 weeks. First guy was god awful so I requested a change, second one was even worse so I requested another change, the third one I got was slightly more tolerable but again did not understand my physical health issues and seemed to think I just suffered from occasional headaches despite my efforts to try to remind her and help her understand. She then would continually forget to turn up to my appointment, leaving me for months on end without any support, despite the fact she was awful anyway. By September 2013 I was beyond fed up of of the lack of mental health support of someone with severe depression. So I decided to try and find someone who was actually qualified at counselling people for me to see, I came across a psychologist not far from where I live who sounded nice and an added bonus is that she specialises in treating people with chronic pain/illness conditions. She is really great and I have pretty much seen her ever since, other than a couple of breaks for a few different things.

In November 2013, I saw my neurologist who told me we had now ran out of treatment options, the only thing left was Occipital Nerve Stimulation Surgery a 60/40 shot at improved pain levels. But the surgery funding was being reviewed by the NHS and it was not known how long that would take to do. The surgery was my best and only option left and I was on the waiting list so I just had to wait.

Nothing too significant happened in my yearly appointment in 2014 that I can remember. However, in June 2015 I found out online that the funding had been approved, at my appointment with my neuro he told me it had been approved and now they just need to employ a psychologist to do the evaluations to get it underway.

In April 2016 under a temporary psych (long and complicated story that I won’t go into) I had my evaluation, given my history with depression, self-harm and suicide attempt despite agreeing that the surgery is what I need he did have some concerns. So they wanted me to also be seen by one their psychiatrists, who also cleared me to have surgery, despite a similar concern. I then had surgery in September 2016 and it’s been a rough road since.

Surgery itself went fine, but I had a very rare reaction to the stimulation. In that my brain cannot tolerate it, so it caused my headache to be even more unbearably worse. We tried several reprogramming sessions but it made no difference, we also tried the new type of stimulation called Burst which was no different. However, throughout all this I now also had a headache at the back of my head even when the stim was turned off, a place where prior to surgery there had never been pain.  By March this year I have been adamant that I want it removed. We agreed to turn it off for 3 months to ease my pain levels and talk about it again then. And in June it was agreed for me to be put on my neurosurgeons list to have it removed. Which brings me both heartbreak that it wasn’t my answer when now there is nothing left, but also relief that it will be gone soon.
Currently there is not really any treatment options left for me, holding out for the possibility of the CGRP medication, which shows a lot of promise in trials. And I am yet to try a ketamine infusion so that is a possibility.

This is my story so far. Living with chronic pain and illness has been so hard, the uncertainty of it all, the treatments and just the unknown nature of the condition itself. Worrying that I may have to live like this forever and that a pain free life may not exist for me.
I struggle to find meaning in my life, being quite intelligent but having nothing to show for it makes me frustrated and depressed. Not having achievements normal people have, like education or work, and worrying/knowing that I may never have that.

This is my story so far, please also refer to my disclaimer.


47 thoughts on “My story.

  1. I am really sorry to hear of what you have been going through. I know how difficult it is to have chronic pain and get little or no help from doctors. I hate that anyone would have to deal with this but especially someone so young. I am glad you found my blog and decided to follow, I will be praying for you, for your healing.

  2. Dear Sian – I know how you feel! When I was suffering from chronic unexplained, undiagnosed pain I often wanted to kill myself and made a few half-hearted efforts. I was lucky that a smart and sympathetic doctor started prescribing me opiates so I could keep functioning and working. I was finally diagnosed with EDS, but my doctor retired and I had to start with another one. The new doctor told me “opiates aren’t good for you” and wanted me to stop taking them. So I started cutting way back and, of course, my pain started coming back with a vengeance. The incessant pain was so crazy-making I thought I was losing my mind. I’ve never self-harmed before, but I started gouging deep scratches into my forearms just to make the pain “different” for a while. My therapist understood and pressured me to find a different doctor, which I finally did. Now I’m prescribed enough opiates to control my pain and don’t have to spend my days in agony lying on the couch wanting to die.

    I also suffered from a persistent headache for 4 months once. I don’t care what the experts say – they are wrong. This is the same B.S. they told me, yet opiates were the only thing that worked (and still do years later). Sure, they don’t fix anything, but we’re essentially un-fixable. I don’t know how you survive without pain relief – I could not. Without opiates I would kill myself, it’s that simple. They will eventually find something better than opiates, but these meds have been effective for 2,000 years with only minor side-effects – mainly the media-pumped-up possibility of addiction, which is actually only 5% for pain patients. Most of the alternative pain drugs have much more severe side effects.

    On my blog, you’ll find many articles supporting the use of opiates for pain. Until the source of your headache can be repaired, I hope you find a doctor who will work with you to control your resulting pain.

    • Sorry to hear you suffer from chronic pain also. I’m literally getting to the point that if I don’t get relief soon I will try to kill myself again. Going to go to my gp and beg for something for the pain cause my neurologist won’t give me anything better than triptans which I think is cruel because we basically have to suffer. And I just can’t do it anymore.

  3. I hear you, and I’m frustrated that docs aren’t helping you. We can only hope your gp has sympathy and understands the seriousness of your situation. I’ll keep my fingers crossed.

    My heart goes out to you,

  4. Wanting to know more about what you are going through I found out POTs and what I have chiari malformation are pretty similar. A lot of the same symptoms, problems, treatments. I’ve tried a lot of the same meds treatments you have with no help so far but I’m sure something is out there for us:) what I do have is a Nuro and GP that work together to make sure I’m not in pain as much.. My old neuroligist was a sadist Who would rather see me in pain than help me in anyway. I switched to a loving, caring Nuro who wants to see me healthy but cares about me now and wants today’s quality of life to be better.

    I hope that you are able to get some help from your dr.s they should work as a team to give you the very best help they can give.

    • I hope there is something out there for us! Glad you have an understanding neuro and GP, I’m struggling with my neuro at the minute who won’t give me anything stronger than triptans for the pain and they don’t work. So don’t really know what to do anymore.

      • Can u find another Nuro?? Life is to short to live in pain. The less pain free days we have the better even if it’s a med filled day. My doctors respect and understand that. Get a second opinion. My Nuro has tried pain pills, muscle relaxers, even anxiety meds to see if anything would held with my headaches or at least keep me off the edge… Keep talking to them about it, go into your app. With a plan of attack. Remember they are the drs but its your body and your the one in pain. Not them! My dr reminds me that all the time

      • I could find another neuro, but it’s complicated as I’m meant to eventually be getting surgery through my current neuro and the neurosurgeon he works with. But it’s a long wait for surgery though. So I don’t really know what to do at the minute. Might just continue seeing my current neuro and go to a pain management specialist as well. Really stuck as to what to do at the minute.

  5. I have a chronic headache – I couldn’t tell you exactly when it started as it developed gradually, but I must’ve had it for at least 5 years. My neck is also very stiff and continously painful. I’ve tried physio, acupuncture, chiropractic, yoga and various medications and I still have the headache even though everyone I’ve seen has reassured me I won’t have it forever. They say it’s a tension headache and that it’s posture-related but they really haven’t told me what exactly is making it so persistent. It’s different from what you have, but thought you might like to know that you’ve not the only one with a ‘never ending headache’. Take care xx

    • Sorry to hear you also have a chronic headache. Have met quite a few people online with the same condition that I have, but you’re right it’s nice to know you’re not alone, you take care too xx

  6. Sian, I am wondering since you have EDS if you have looked into the possibility of cervicocranial instability (CCI), or even a chiari 1 malformation. Since the ligaments are stretchy and loosened with EDS, your transverse ligament can get stretched as well. Your transverse ligament is supposed to keep your odontoid in place, which in turn helps support your head and keep it from moving around too much. If your transverse ligament is too stretchy it causes a retroflexed odontoid, which causes lots of bad symptoms. Check out the following link: to read about this problem.

    My daughter has a chiari 1 malformation and EDS (which we just found out about) and has had a headache for 3 years. We are in the process of getting tons of testing done, to include a tilt table test. We also have an appointment in October for my daughter to see a world-renowned neurosurgeon in Maryland. Between now and October I will be getting every test we can think of and see as many specialists as it takes to get her headache to either go away or at least decrease in strength. Please hang in there! You’re not alone. We will all get through this. Please let us know how you are doing, and if anything starts to help. In addition, have they checked you for intracranial hypertension?

    • Hi April. I have had a total of 6 MRI’s of my head, neck, spine etc. Which didn’t show up any signs of Chiari Malformation, I had both a neurologist and neurosurgeon look at the scans and they both said there is no sign of anything like that and ‘unfortunately’ it’s all normal. The only thing I haven’t had done is a lumbar puncture because my neuro doesn’t think it is necessary as again I have no signs of intracranial hypertension or a CFS leak. And he doesn’t want to cause and increase in my headache from a lumbar puncture.
      Sorry to hear that your daughter is also suffering from a chronic headache, it’s really very hard and I hope that you and she find the answers and treatment you are looking for.
      Thank you, I will try to hang in there!

  7. I’m dealing with chronic pain, too, and until recently I felt like I was the only one. I mean, given the kinds of blank or skeptical looks doctors always give me, I figured I must be the only one. It’s been really encouraging to find that I’m not the only one and that there’s an entire community of people who know and understand what living with inexplicable and debilitating pain is like. You have my full support.

  8. Hello there thank you for the follow. I wanted to ask if you follow noonegetspainforchronicpain ? If you don’t follow her you should really have a look at her blog. She had the surgery you are waiting for and manages her pain non medicated now it might be useful to read and she is happy to strike up email contact. Also do you live in London now? I’m a local if you do so nice to meet someone else nearby if that is the case. I read your story and I just don’t have words to express how I felt upon reading it I really feel for you, hugs x

    • Hi, yeah I follow her, that’s how I found your blog actually! I’ve actually been emailing her recently about pain management program’s and how they have helped her as I’ve been offered to go on one. I live near Southampton/Bournemouth like inbetween the two so not too far away where do you live? Thanks x

  9. It’s too bad you can’t come to the Cleveland Clinic in the United States. I had New Daily Persistent Headache too and went through the usual round of depression, doctors playing let’s-make-a-guess, etc. I went to the Cleveland Clinic’s headache program and they managed to actually CURE me somehow.

      • I’m not sure how. But I’ll tell you about the program: it’s called IMATCH, short for something-or-other, and it’s a intensive outpatient. You go there eight hours a day, five days a week for three weeks. The first week they hook you up to an IV for infusions, basically to clean out your system and start over. The second and third weeks they have all kinds of therapies. IMATCH is one of those “holistic” programs — throw everything at you and see what sticks. You’re part of a group of other chronic headache patients and do a lot of group therapies, exercise, self-hypnosis, biofeedback, etc. They teach you to avoid drugs whenever possible. While I was there they did discover a drug that would get rid of my headache, but I was told to use it very sparingly. I would have done so anyway; it cost $40 a dose and the side effects were unpleasant.

        The thing is, the program is for pain MANAGEMENT. On the first day they told us, “We are not going to cure you. Get that out of your heads right now.” They said that though the majority of patients experienced a reduction in pain, they couldn’t promise that either — only teach us how to live with it. In fact while I was there, one guy got kicked out because he was so focused on pain reduction/cure and wasn’t benefiting from what they were offering. But they managed to cure me. After I completed the program, over the next two or three months the headache just sort of gradually faded away. Once in awhile, like every couple of months, it comes back for a day or two or four, then disappears again. I’ve compared it to a deadbeat relative who keeps crashing on your couch.

        I blogged about it all (I called it “The Great Headache Crisis”) and here’s the entries about IMATCH:

        I really can’t say enough good things about this program. I’m convinced that it literally saved my life, and if I hadn’t gone I would have accidentally or intentionally ODed sooner or later because I just couldn’t handle the pain anymore. And I think they mentioned that they’d once had a patient from England. If you can manage to pull it off, it’s worth a go.

      • That sounds really beneficial. There are inpatient pain management program’s in England but it’s all about managing pain there is no like infusions or anything like that. But that’s the closest thing to it. I could go but I think it would be pointless now and that they won’t tell me anything I don’t already know, been working really hard in pain management and acceptance and commitment therapy with my psychologist and it’s really been helping. Not the pain that hasn’t changed but I’ve been feeling a lot better emotionally because of it, so decided that I didn’t need an intensive program like they were offering as it would mostly be a recap of everything I’ve learnt with my psychologist, she specialises in treating those with chronic pain. Will read all them posts now. Really glad that you don’t have NDPH now, that’s amazing like I said I’ve never in my four years spoken to anyone that had it go away and I know quite a lot of people online that have it.

    • My daughter suffers from NDPH. We live in US. Would you tell me which doctor you saw at the Cleveland Clinic? What treatment did you receive that provided cure?

  10. Hi Sian, I am impressed and so happy that you are writing a blog about your NDPH (Migraine Variant). Although I am not happy at all that you have this condition. I am new to the blogging world and came across your blog. I live in the US, and have after several neurologists and now a headache specialist, been diagnosed with Intractable Migraine and Refractory..the difference being..I had migraines, and then one day my acute migraines just decided they would stay…and have not left for four years. So, I know exactly what you are going through. I just looked up the difference. You just one day had the worst headache of your life that never left. Yep. It is so horrible, and I am so terribly sorry you are going through this. I am following your blog, as it is not often I meet anyone who is going through the same thing, or even begins to understand what I am speaking of. Living with chronic pain is a monster that no one can understand unless they have experienced it. I have fibromyalgia as well, but I can tell you, that I wake up everyday, with just the wish to live again without pain in my head. My specialist has told me that I am treatment resistant and that my daily meds are the best I can hope for to keep my pain levels and symptoms to a minimum. I applaud your strength, and your desire to educate with this blog. I will be reading. Thank you.

    • Hi, Thank you for your kind words, I’m sorry you are suffering too, I know what it’s like to be resistant to treatment, and it really is a hard thing to deal with knowing that nothing will help and you could be like this for the rest of your life. I’m glad for you that some daily meds keep your pain levels and symptoms to a minimum. I hope you enjoy reading my blog 🙂

  11. My wife has Crohn’s. I make chroinc pain videos to help educate people on what it’s like to live with different types of chronic illness. My latest video is for those who suffer from New Daily Persistent Headache, prompted by an email from one of my viewers.

    Thanks for letting me share here with you. If you feel that any of my videos might help you to educate people in your life about chronic pain, please feel free to share them.


  12. Hey Sian,

    I am fairly certain you have Lyme disease. I am sure you have considered this but the serology is of poor quality currently. You don’t need to live in the USA to acquire Lyme. It is everywhere. Go to ILADS website. I also have NDPH.

    • Hi Jenny,
      Thank you for your suggestion, unfortunately (or fortunately not sure which) I don’t have Lyme disease as I have had it looked into several times. Sorry to hear you also have NDPH.

  13. Hi Sian,
    Oh man, I am so incredibly sorry to hear what you are going through. I get severe migraines every so often, I cannot even imagine what it would be like to live with them 24/7. I haven’t looked around your blog too much yet, so forgive me if you have already posted this info, but what kind of stuff are you doing dietary-wise and are there any alternative, holistically oriented treatments out there that you have found…there has to be a solution out there somewhere!!! Stay strong ❤

    • Hi, thank you.
      I haven’t changed my diet purely because I don’t eat enough as it is and know I would eat even less if I changed my diet. Every doctor I have asked about changing it as well has said it wouldn’t help anyway. I’ve tried many alternative treatments, acupuncture, physio, osteopathy, cranial osteopathy, chiropractors, rekei, hypnotherapy etc, with no success unfortunately.
      Thanks, will try ❤

  14. I feel the exact same way as you do. I have had my migraine for 4 years, I think, it could be five. It is usually at a 8/10. (I don’t know if you have come across this, but, it is funny to me when doctors say “You can’t have a 8/10 headache, your not crying” as if I should be crying for the last few years- straight, not one break.) Anyways, I would love to talk to you. It is hard being the only one I know that is fighting a headache/migraine constantly.

  15. I’ve suffered from the same for the last 7 years; was going to college and had to leave and just get by day to day now. It was much worse at first but I’ve gotten it to where I can function most of the time.

    I’ve been on the medication carrousel plenty of times now, so I feel it’s worth asking, have you ever tried cannibis for your condition? It’s the only thing that’s ever granted me relief and I’ve actually found a few strains that allowed me to have my first headache free time in years. I’m sure you can appreciate what that was like.

    Just wanted to share an idea and something that worked for me. Take care.

    • Hi John,
      Sorry to hear you’ve been suffering for so long as well. I’m glad you have found something to help you, I have tried cannabis, however unfortunately it caused me to have a seizure, I have POTS and have seizures because of POTS and for some reason the cannabis brought on an episode that lasted quite a while. So I am sure you can understand I haven’t wanted to try it again.
      Wishing you a low pain day!

    • I have been told cannabis is not approved for NDPH. Where do you live? I live in New York and am writing on behalf of my 18 year old son.

  16. Hi Sian
    I’ve recently been diagnosed with NDPH, but I’ve had this debilitating headache for 18.5 years. Nothing can be found wrong, nothing helps, I truly feel your pain. I started blogging just 2 weeks ago, and I’m glad I found you here.
    Good luck to you.

    • Sorry such a late reply haven’t been keeping up. So sorry you’ve been suffering for so long. But you’re not alone. Wishing you a low pain day!x

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