A few of you have asked me to write about my experience of going to the
National Migraine Centre so here it is!
A few weeks ago I
blogged about how bad my migraines had got and how I really needed to take action. Finding Victoria's blog
The Migraine Monologues was a turning point for me. I started by getting a few books she recommended and realised that for years I've been pretty uneducated about my migraines. In the same week I also booked an appointment to speak to a
migraine specialist nurse through the charity Migraine Action that I'm a member of, made an appointment with a new GP surgery AND made an appointment at the
National Migraine Centre. I figured at least one of these might help!
I spoke with the migraine nurse first. It's a great service. If you are a member it costs £10 and if you aren't then you can still access the service for £30. The nurse was lovely and really helpful. We talked through a lot of my concerns about preventative medication and she explained that like antidepressants - preventative medication for migraine isn't supposed to be for life; it's just to help you gain a bit more control. Often people only stay on preventatives for six months and then start reducing the dosage. I had never seen it like this and it was a big revelation for me.
She also explained that the dosage of amitryptaline I was taking (a preventative) was very low and so to feel the effects I would need to up dosage but I could do this very slowly, and if I started experiencing bad side effects could take it down again. It might seem daft, but I had never even thought about taking my dosage down if things got rough!
She also told me about two other drugs that could help me. The first was Naproxen - an anti inflammatory that I could take with my triptan (the drug I take when I feel an attack coming on) which would mean it would hit the migraine harder therefore making it more likely to work and in turn it would mean I was less likely to get more migraines in the future.
The second drug she told me about was domperidone which is an anti sickness drug. When you get a migraine, your whole body shuts down and this drug helps get your stomach working meaning you can absorb your medication in tablet form quicker. I was so over the moon to talk to someone who knew what they were talking about.

A few days later I went for a visit at my new GPs. I walked in the room, sat down and said "I'm here to talk about my migraines and I warn you I'm probably going to cry" and then promptly burst into tears. I blubbed my way through my story and lo and behold she was AMAZING! Incredibly supportive, kind and took the time to listen to me. Hallelujah! She prescribed me the Naproxen and Domperidone and we talked about upping my dosage of amitryptaline. I also told her I was planning to go to the National Migraine Centre and she couldn't have been more supportive. Her exact words were "...and if they tell you something different to me, then trust them....they are specialists and really know their stuff." I was gobsmacked. She was a keeper.
So the following week, I jumped on a train to London and went in search of help. The doctor I saw was fantastic. By this point I had done a lot of reading and from my own education, speaking to the migraine nurse and the GP I knew my diagnosis before she even said it. I was suffering from something called "Medication Overuse Headache (MOH)". This basically is what it says - I had taking too many triptans and as a result was now getting constant headaches on a daily basis because of it.
The doctor told me the best way to get out of it, was to go cold turkey off the triptans for six weeks. "Uh...what now?! but but but....triptans are my saviour!" I shut up and listened and it all made sense. If I could stop taking the triptans then my body would be able to sort itself out, I'd have time to give my preventatives chance to kick in and after the cold turkey, the triptans would actually work better...so in the long run, less migraines.
But how was I going to function for six weeks? The first thing she prescribed me was a course of Naproxen. I could take 250mg three times a day for the first two weeks, then cut it down to two times a day for the next two weeks and finally once a day for the final two weeks. If I was in desperate pain I could take 900mg of aspirin in coke but had to be careful not to overdo it. When people are going cold turkey they often get signed off from work full time - we agreed part time should be enough so she recommended this to my GP. We also talked about lifestyle and other things that could help - but I'll write a separate post about that.
I came out from the centre feeling relieved. Finally, I was getting somewhere - I was understanding what was wrong with me and I could do something about it. Funny, because ahead of me I had a very harsh six weeks to get through - yet I felt positive. I felt, for the first time, that I actually could get my migraines under control.
At the next opportunity I went back to my GP. She was so lovely, and really eager to hear about what I had learnt. She prescribed me the necessary drugs, and signed me off part time. This was terrifying. I had only been at my current job for six months and here I was asking to take time off (not to mention the 8 sick days I'd already had in that time). The GP was very reassuring, saying that in the long run this would be beneficial for everyone, and that she'd be surprised if they turned it down. I still felt sick.
My boss had been away on annual leave for a week, so I felt terrified of telling him. I told my (sort of) manager and she was really supportive. When it came to telling my boss I was so stressed out I had a pounding headache. Luckily, he was fantastic and very lovely about it all. He said he just wanted me to be able to get better and that he couldn't imagine how awful it was for me.
I worried that my boss and my colleagues would think I was such a skyver and that I was just taking the piss. I tried to focus on the positives, like how hard I'd worked in the six months I'd been there and how many good things I'd done for the company. The next day, my manager sent an email round to everyone in the company telling them I was going part time for six weeks and the reason why. I was completely taken aback when I had several emails from colleagues telling me they were sorry to hear things were so bad and offering their support. I was speechless. It was so nice to feel supported.
So here I am. Week 1 of cold turkey. So far I've had a pounding headache every day and the only way I can describe it is like a really awful hangover where you don't feel sick. If you don't suffer with migraines then you might think that's quite bad, but I'm telling you - it's a walk in the park compared to a migraine! It might hurt and be very annoying, but it means I'm not completely debilitated. My body still aches and my skin still feels raw but I'm still positive.
I'm trying not to feel terribly guilty about not being at work and instead focus on getting better. I don't know what the next five weeks will be like - but right now I feel positive that I can take back control of my life and manage these wretched migraines.
I'll be writing another post very soon to share some of the information I've read and learnt recently about managing migraines. Of course, it goes without saying, if you suffer from migraines and are having a rough time then please leave me a comment or drop me an email.