Now that my exams are out of the way, I thought I would share my journey with Chronic Migraine. It is relatively short really as I haven’t been diagnosed for long, and having read others posts and heard their stories, I think I can consider myself quite lucky so far. I apologise in advance that this is realllllly long and probably pretty boring, but as I’ve said before my blog is a place for me to get everything out.
This all started in summer 2012 around the Queen’s Diamond Jubilee weekend, I was having a year out before starting University in September and after being sent to A&E the on call opthalmologist said that I had Ptosis (or drooping of the upper eyelid) and asked me to attend the eye clinic at the hospital the next week. I went along to my appointment the following week, expecting it to be a quick in and out as my eye lid had near enough gone back to normal, but the consultant was concerned with my Optic Disks/Nerve and I ended up having to stay and have lots of tests and an MRI. Everything was normal, but they were still worried about the abnormalities at the back of my eye and so referred me to see a neurologist. By the time my appointment came I was suffering from the headaches most days, he arranged for me to have a lumber puncture. The lumber puncture was horrendous, I still had the headaches and now I could hardly walk from back pain, I was off work for a couple of weeks but then started to get used to the headaches and returned to work. I saw the neurologist again and he started me on Nortriptyline which I started taking and gradually increased the dose so that I was taking 50mg by the beginning of October 2012. Between then and this summer, the Nortriptyline was great, apart from the occasional weeks were I would have a bad migraine and be bed bound, everything was fine and I could carry on with day to day life and enjoy my time at University.
Then came this summer and my headaches were starting to get worse again. They weren’t as frequent or as intense as they had been before the Nortriptyline, but the medication was definitely not working as well as it had been. I tried to get an appointment with the GP but they would only let me have a phone consultation, the GP dismissed that it was the same type of headache, insisting that I must be stressed and need to try exercise and if it was no better in three weeks to ring back. So I tried waiting three weeks, I didn’t want to be impatient but the headaches were getting even worse and I now had them more often than I didn’t have them. Then, the Monday after Halloween I woke up with the worst headache I had ever experienced and the Ptosis, I went straight to the doctors and explained but they said it was probably stress and reluctantly increased my betablocker (which I had been taking since March 2013 due to a fast heart rate). He said I should go back in a week, so back I went the following week feeling exactly the same and having spent the weekend in bed and off both university and work. This time they put me on a low dose of Propanolol, again saying that it was all due to stress and anxiety, this time they told me to see a counsellor at university. I was furious, I was not stressed nor anxious but I was in a lot of pain and they were ignoring me. I went back again, they said I had to wait another week. I still felt exactly the same, it was so bad I was considering dropping my dissertation and went into University to arrange to go home for a couple of weeks. After another week, my mum drove me back to the GP from home and explained that I could not go on like this, this GP that I saw was sympathetic and more understanding and said she would be happy to refer me to a neurologist again. In the mean time prescribed me a steroid spray in case I had a sinus infection as the pain is mainly around my sinuses, eyes and side of my head. Luckily, I was covered on my mums private health plan and I was able to see a private neurologist who specialised in headache and migraine the following week. He was really helpful, understanding and knowledgeable and diagnosed me with Chronic Daily Migraine. He took me off the Nortriptyline as he expected that was the cause of my fast heart rate and kept me on the Propanolol, increasing my dose and said I should increase it to a maximum of 240mg if I wasn’t seeing an effect. Going home from the appointment I cried my eyes out, I couldn’t believe there was nothing he could do to take the pain away there and then and didn’t know how I was going to continue to manage the pain. After getting the diagnosis, I slowly started trying to do more as until then I had spent the majority of my time in bed. I knew that I couldn’t carry on like this forever and so I kept pushing myself as I had a lot of coursework due in, I was now beginning to get used to feeling like crap. Luckily, I only had a few weeks left before I broke up for Christmas and this was the only thing getting me through the days.
So where am I now? I came back to University yesterday, I know it is going to be tough but I just need one last push to get me through the semester so I can graduate. I am eating both gluten free and only things that are natural. I have seen a nutritional therapist who has put me on an array of vitamins and supplements. The pain is no different from when it started and I am now on the 240mg dose of Propanolol. I am going to see my GP in two weeks time when I will have been on the medication for three months. I’ve had the worst few months of my life, and that’s saying something considering my parents split up when I was fourteen. I am in constant pain and there isn’t a second of the day or night that I don’t have a headache, it has been continuous since the end of October and isn’t improving in the slightest. I am just teaching myself how to get used to the pain and get on with life. I work on the checkouts in a supermarket and can’t even go on a checkout for longer than half an hour anymore, I was made to go on for two hours a couple of weeks ago and had to go home as I felt like I was going to be sick, was dizzy, had drooping eye lids and the pain was unbearable, I’m not sure how I got home but I was in bed for two days afterwards. I now have to spend both of my two eight hour shifts on the self service checkouts just standing there, it sucks the life out of me, as well as making me feel like a nuisance and that I can’t even do my job properly anymore.
The hardest part is that people do not understand that the pain never goes away. I used to sleep great and get about nine or ten hours sleep a night, but now I wake up during the night from the pain and often cannot sleep at all. Nobody at work understands why I can’t do the same job that I used to do and though on the most part University have been really good about everything, my dissertation supervisor doesn’t understand why a) I am really behind, b) why I can’t catch up quickly and c) that I am not being lazy. I couldn’t wait to do my dissertation, it was optional but I was so motivated. Now I am so behind and doubt I will get a very good mark because I can’t dedicate the time to it that I need to and I struggle to spend very long sat on a computer (which when you are doing a dissertation in the field of sociolinguistics is pretty necessary). People don’t understand why I have had the occasional night out, shopping trip and meal out since becoming ill and the other set of people don’t understand why I cannot go out with them every week. I feel like I am trying to fight a losing battle and that no one is happy with what I do. I don’t ever feel like doing anything other than staying in bed, but nothing changes how I feel so why should I not go out and have a few drinks once a month? If I have to push myself to go to university and work I don’t see the difference between pushing myself to go out somewhere too. I don’t want to lose all of my friends as well as be in constant pain, and if it makes me feel no worse then the way I see it is that I am not harming anyone.
If I didn’t still get to see my friends every so often I can’t imagine how much lower I would feel. I am a brave person, someone who just gets on with everything without speaking to anyone about it and just dealing with the emotions myself. Everything gets bottled up and I am usually ok but Chronic Migraine is really starting to rock the boat. I feel so useless and pointless and cannot adjust to the fact that my life cannot be the same anymore. I can’t accept that it is now the norm for me to have to nap every day just so that I can get through the days, that I can’t do the same job I did before, that I won’t be able to get a 1st in my degree like I thought I might be able to and that I’m not sure what jobs I can even consider applying for when I graduate because I don’t know if I am well enough to. In September I had wrote a list of all the graduate schemes I wanted to apply for but after getting ill, I have ended up missing all the deadlines as I’ve had other stuff going on. I have always had a part time job and been self-sufficient, I go home from University at weekends so that I can carry on the job I had before, I do volunteer work, yet I feel that when this summer comes I am going to feel like I have wasted everything I have tried hard for just because I cannot function as I used to.
All this said, there is quite a while before I graduate and I hope they might find a medication that works for me by then. It may not seem it but I am trying to remain positive. Like I said at the beginning, I know that I am lucky not to have too many side effects to my tablets or symptoms other than the continuous pain.