My story.

*Please read all of this, sorry it’s long.

My name is Sian and I’m 22 years old and from England, I lived in Dubai for 5 years though I just recently moved back to England cause of my health.

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

To begin with I just thought it was a normal headache I took some paracetamol and then later went to bed however when i woke up the next morning it was still there to welcome me. After having it 24/7 for a week I started to get this tingling, numbness and pain in both my hands and then my feet. My mum then took me to the doctors, who sent me to the hospital, who sent me for my first MRI. The next day I went back to the hospital to see the neurologist for my results, he thought I had a tumor on my pituitary gland so admitted me to hospital for further investigation, after another MRI the tumor was ruled out, but I still had a headache. I spent the week in hospital being given numerous drugs, none of which helped although the tingling numbness and pain in my hands and feet went my headache remained as resistant as ever. After a week I was discharged the neurologist told me ‘you have a migraine here  take this topamax and it will go’ well i’m not an idiot the doctor just didn’t know what was wrong with me, so I didn’t take the medication and instead found a new neurologist. My new neurologist agreeing that I didn’t have a migraine tried me on many drugs eventually including topamax, however all treatments were unsuccessful and my neurologist eventually lost interest in helping the girl who always had a headache.

I started to get very depressed, well who wouldn’t if they were in pain all the time with no known cause. In April 2010 I started self harming, I can’t remember exactly how it started but it did. All my friends disappeared fed up with the depressed girl who always had a headache. I had no one. Eventually I started seeing the school counselor who is amazing. It was hard to talk about it all at first but eventually it got easier and now she is the one person I tell everything to.

I stopped seeing doctors for a while, all the ones in Dubai were useless. I started seeking out alternative treatments, osteopathy, physical therapy, reiki, and my school counselor got me to try acupuncture. None of them helped in the slightest, but the acupuncturist gave my case to the GP at his practice as he thought she may be able to help me. I had finally found a doctor who wanted to help and was interested in my case. However there wasn’t much she could do unfortunately every test came back normal.

Going back in time for Postural Orthostatic Tachycardia Syndrome (AKA POTS)… Since I was 12 I have had these black out type things but they got progressively worse. I would black out every time I stood up. Sometimes so bad I would shake an jerk to the floor and look like I was having some sort of seizure. But no one knew what was wrong with me. My resting heart rate was way too high, at 120bpm and my blood pressure too low but no one could figure out why and why I was blacking out and having seizure type things. My GP thought that I may have POTS but I  would need to go to England for it to be diagnosed as no one would be able to help me in Dubai.

Forward in time… In the summer of 2011 I went to England and saw several doctors. First a cardiologist and then a neurologist for my headache. After a short stay in hospital they eventually referred me to an autonomic dysfunction professor. He sent me for lots of tests to determine whether  or not I had POTS. Turns out I do have POTS. And also something called Elhers Danlos Syndrome Type III. A connective tissue disorder which cause hyper mobility. I also went to a neurology conference at a London hospital to present my case and make neurologists more aware of POTS. I was then put on three medications to control my symptoms of POTS, two types of pills and one I have to inject 3x a day. This combination means that I no longer have blackouts. However my resting heart rate is still quite high and I do get tired quite easily.

Back to my main problem, my headache… Originally it was thought my headache was linked to my POTS. Turns out it’s not because my POTS is under control. But my headache is still has resistant as ever. My professor referred me to a neurologist who is a headache specialist in London at the National Hospital of Neurology and Neurosurgery. He diagnosed me with New Daily Persistent Headache (Migraine Variant). He then started me on medication trials, over the past 2 and a half years I have tried many different medications in an attempt to treat my headache none of which have helped in the slightest. One even made over half my hair fall out as a side effect. In conjunction with these medication trials I pursued more aggressive forms of treatment as well. Botox several times, multiple nerve blocks, occipital nerve blocks, infusions of DHE. None made any impact on my pain. I have now tried all the medications my neurologist wanted me to try, but with no luck. I am now a candidate for Occipital Nerve Stimualtion Surgery, however the wait for this could be a few years due to funding issues.

Throughout all this I was getting more and more depressed, and self harming quite a lot having stitches in my wrist 3 times. Because of everything I was failing my A levels at school. I just couldn’t concentrate cause of the pain. I repeated year 12 nearly 3 times. However I did manage to get one A level in Physical Education.

On September 30th 2012 I took a rather large overdose of anti depressants that I had been hording for quite a while. I just couldn’t take the pain anymore and didn’t want to continue living in pain. I ended up in intensive care in hospital for 3 days, being fed charcoal. Suicide is illegal in Dubai but luckily we managed to persuade the police it was an accidental overdose and got away with it.
(I am not proud of this but I am also not ashamed, I am not telling you this because I want attention, I don’t! I simply want to educate you on how hard it is to live with a chronic illness and pain all day every day for who knows how long.) It was then decided that I shouldn’t go back to school until my pain levels were under control and I could concentrate again. Which wasn’t going to be any time soon. I then came back to England for a few weeks to see my psychiatrist in London and my neurologist. I also saw a pain management specialist but he wanted to put me on opitates but my neuro said no as they are the wrong treatment for headaches. After a few weeks I went back to Dubai.

After a few months of doing a bit better emotionally, still depressed but not wanting to immediately kill myself. And being clean from self harm for around 5 months. I relapsed, badly into self harm. I told the relevant people that I was feeling bad and suicidal again, my school counselor, psychologist and psychiatrist. My psychiatrist put me on some anti anxiety meds. Which helped me sleep away the day so I didn’t have to face it. Eventually I ran out so went to my psychiatrist for a repeat prescription, the previous week I had told him I was suicidal again, but instead of giving me a prescription he gave me a full bottle of pills. I was very tempted to take them right there and then and end it all, or take them home and hoard them. But instead I drove to school and gave them to my school counselor. It was then decided that I needed to come to England because it wasn’t safe for me to be in Dubai with how I was feeling and I needed more help than people in Dubai could offer me.

I came back to England a few days later. Not expecting to have to stay longer than a month. But the psychiatrist I saw said that if I wanted to get better emotionally I would have to stay for a year to 18 months approximately. I was distraught, Dubai is my home and I want to go back. I don’t usually cry but I cried a lot when I found out I would have to stay in England. Eventually I started seeing a team of psychiatric nurses which would come and visit me every day. But that was only a short term for a month and now I’ve been moved onto the longer term program where I see a psychiatric nurse once every two weeks, and to be honest it’s pretty rubbish and isn’t helping.

I now see a psychologist who specialises in treating people with chronic pain. She is helping a lot, I feel like she understands on some level with what I’m going through. I also see my care coordinator on the NHS once every 2 weeks and she’s okay but she doesn’t really know how to help me anymore. At the minute I’m too sick to go to university and I’m too sick to get a job so I basically do nothing. One thing I have been able to do is taekwondo (on good days) I’ve been a black belt for 9 years and I love the sport, it’s the one thing I refuse to let my illness take away. And doing it helps me forget about everything for a while, the pain is still there but I forget about everything else when I’m in that moment.

In November (2013) I saw my neurologist. After going to my GP to beg for something for the pain because triptans weren’t helping and I am desperate for some relief. She wrote to my neurologist saying she didn’t know what to do and that I wanted to go on opiates. Not that I asked for opiates specifically, I just asked for something, anything that I could take when the pain was bad. My neuro told me I could go on opiates if I wanted to, but it would mean I wouldn’t be able to get surgery. My last and final option is Occipital nerve stimulation surgery. Other than that there is nothing more my neuro can do for me because I have tried everything else with no success. However the wait for surgery is very long, the NHS haven’t decided whether they are even going to fund this type of surgery anymore. And even once they have decided if it’s a yes it could still take up to a year to get funding from them. And then there is a 6 month wait on the surgery waiting list. So it’s probably going to take at least 2 years before I can get it done. Meaning I have to suffer in pain for that long as I am not allowed to take opiates if I want surgery. The only thing I can take is triptans, which hardly ever work and I’ve tried every form of them available. The surgery isn’t a cure and I will probably never be completely pain free. It is just meant to decrease the pain levels to a more manageable level. So it’s my best option, my only option left.

This is my story so far. Living with chronic pain and illness is hard and the fact that I may have to live with this for who knows how long, 5 years 10 years, forever i don’t know and that’s what makes it even harder, like you are waiting for the day that it may go, and every day could be that day..but it’s not, and you’re waiting for a day that will never come and I feel future-less. So now I’m completely lost and even more helpless than I was before, what are you meant to do when your last resort has failed, give up? Because I don’t know how much longer I can do this for.

I hope that this blog will educate people to what it is like to live with chronic pain and illness.

Feel free to contact me on iamtheneverendingheadache@gmail.com

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.
    -Zyp

    • 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,
    -Zyp

  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: http://www.upright-health.com/ehlers-danlos.html 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:
        http://charleyross.wordpress.com/2012/01/31/through-with-day-2-of-i-match-and-i-have-learned-something/
        http://charleyross.wordpress.com/2012/02/03/finished-week-1-of-i-match/
        http://charleyross.wordpress.com/2012/02/11/i-match-progress-report/
        http://charleyross.wordpress.com/2012/02/19/done-with-i-match/

        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.

    Ken

  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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