*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 firstname.lastname@example.org