My name is Sian and I’m 23 years old and From England. I lived in Dubai for 5 years from 2008-2013 and that is where this story starts.
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 Professor of Neurovascular medicine, and one of the nicest doctors I have ever met. He 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 Professor 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 at The National Hospital of Neurology and Neurosurgery. 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 optioned 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.
However, along with my lovely horrendous headache, I am now very unwell possibly with EDS related problems of my GI system which landed me with a week’s hospital stay about a month ago now. I am pretty much bed bound with pain (abdomen & joints & headache as well), weakness and exhaustion and POTS symptoms. I can now longer tolerate food at all (causes agonising pain, nausea and other symptoms) so am on a liquid pre-digested diet, but not able to tolerate a nutritionally adequate amount. I’m practically wasting away and since April have now lost 25% of my body weight and have probably never felt so unwell. I see a top neurogastroenterologist in London who is trying to figure out what the problem is and help me, but we are now at the stage of it being time to seriously discuss putting a tube feed in to provide me with adequate nutrition. Not too sure what is going on with it all, but on an illness front as a whole I am probably the most unwell I have ever been, bed bound mostly, wasting away and need a wheelchair to leave the house due to not being able to walk very far without heart rate and collapsing issues, and increased pain. Hopefully it will get figured out.
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.
I’ve had a rocky time, with everything, no treatments so far have worked for me, but everyone is so individual. I know plenty of people with NDPH or other headache and migraine conditions who have responded very well to treatments that I did not. There is no one size fits all with conditions like these. NDPH is very resistant but there are things out there things that I have tried that do help some sufferers an awful lot. Nobody knows the cause of NDPH, there are several different theories but not everyone diagnosed seems to fit into each of them, the theory of it possibly being a post viral cause does not seem to fit with people who did not experience an illness prior to their onset (me). Or there is another theory of cranial neck instability causing headaches like NDPH, EDS patients can have cranial neck instability so I could potentially fit into that theory. I think there is a few more theories floating around. The issue is I don’t believe there is enough research and funding into this because of it being unknown and rare in the terms of headache and migraine disorders. I hope one day they figure it out for us all that are suffering, so that we can at least know why did we one day get a headache and then it never left?
(Updated July 2017)
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