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Archer Leo

Living with migraines for almost twenty years - my story


Blog posts have been thin on the ground this week thanks to a particularly bad run of migraine attacks. It sucks, but it's also my life and what I've been dealing with since I was small. In the future I now know to have pre written posts set aside for when my cluster migraines occur, but for now I've been spurred in to doing a series about my migraine journey, the ways in which it's affected my life and tips I've learnt along the way. I don't know of any other migraine sufferers but if I can help a single other sufferer out there reading these posts then it will be worth it.

I experienced my first migraine attack at 9 years old. I came home from primary school one afternoon complaining of pain in my head and of feeling sick. I'm pretty sure my mum thought I had a bug at the time, but then it kept on happening. 


My migraine back story 

So my migraines started in primary school.They were sporadic back then but as I moved into high school they became more and more regular, and painful. I started throwing up with them, which I never had before. And experiencing extreme fatigue and muscle weakness along with it. My mum sought out the GP and it was only after trying the medications they could offer and failing to find one that helped that I was referred to a migraine specialist, a neurologist. 

I was about 15 at the time and I clearly remember that it took ages for an appointment to come through.During this time I would struggle through school and head home most days and go straight to bed. As my GCSE's came closer I eventually got seen by a lovely neurologist who was very understanding and starting me on preventative medication. As the years went by I tried medication after medication - off the top of my head Amitriptyline, Nortryptyline, Epilim, Topirimate, Pizotifen, Gabapentin, Flunarizine, Candesartan,  Propranolol, and a few to take after the attacks had occurred to settle them downRizatriptan, Zolmitriptan and Imitrex,. There was one medication that seemed to improve them, Methysergide, but a few months after starting it it got discontinued (as is my luck) and is now completely unavailable. I also had six round of botox on the NHS for my migraines in 2013, again to little effect and tried the botox again recently this year - again to no effect. I have also tried diet changes, herbal supplements and acupuncture.

What people dont know about migraines


Chronic Migraines don't just cause head pain. They also effect other parts of your body during an attack. This can be a change in vision and hearing, muscle weakness or muscle pain, nausea and aversion to food or a combination of all mentioned.
Symptoms continue after the pain has subsided. Every attack leaves you  24 hours of the 'hangover effect' which basically means that after the pain has gone you are still left with the nausea, exhaustion, mental fatigue and aching muscles, aptly called the hangover effect by sufferers as it feels exactly as though you are hungover.
Migraine attacks typically go in stages - The warning stage, followed by the attack stage, or pain stage as many refer, the resolution stage (whether this be pain relief, keeping still, sleeping, whatever works for you) and the recovery stage, also know as the hangover period mentioned above.

It's a lot more complex than people think!

So where am I now, 19 years from my first attack?


Still here and still getting migraines several days of the week. I go through good and bad patches and I'm currently in a bad patch. I have just finished my second attempt at botox with no success and my next neurology appointment is at the end of March.

My plan is to use my blog as a bit of a migraine diary. For myself to look back on and hopefully to help others too. Next post will probably be up following the latest neurology appointment.

Take care

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9 comments

  1. Migraines are horrific. I had my first one in a LONG time last month (my last one was during B's pregnancy when I had them constantly) and I couldn't see or move for pain. Botox sounds interesting! I hope your appointment goes well next month xx

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  2. I really feel for you. When I was about 8 years old I started to get migraines. I had the visual disturbances, muscle weakness, sickness and of course the headaches. After years it was finally discovered cheese caused them. I feel quite lucky that there is a trigger to them. I only ever get them now if I am over tired or eat cheddar cheese. I hope you get some relief from them soon x

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  3. I feel for you, My brother has always suffered from them and when we were children I would see first hand the pain he was in. I hope you find something that helps you soon x

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  4. I really feel for you migraines are horrendous and I can't imagine what it must be like to have them so regularly.

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  5. I have sporadic migraines and have done for years, they are so awful and it's so hard when people think of them as 'bad headaches' I hope that your next neurology appointment goes well.

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  6. I totally sympathise. I too suffer with horrific migraines, so bad that I now have lesions on my brain from them. I take medication each day for them to try and ward them off and see my neurologist every 3 months.

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  7. Oh my goodness, this is awful. To have to deal with this so regularly. I went through a spell when I hit puberty. I had a handful of migraines and each one left me bed ridden until it passed. I would lose vision, vomit and lose my balance - bed was the only place for me. A pitch black room the only answer. I still remember the pain of them now so I really do feel for you and anyone else who has to deal with them.

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  8. I really feel for you, my dad has suffered from migraines on and off for his whole life (he's in his 60's) and I know how debilitating they can be. His are triggered by citrus, chocolate, coffee, wine and something else I can't remember, and then sometimes more general things that he's just not sure of. I hope that you keeping a record helps you, and others who come across it and that you hopefully find some ways to lessen them

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  9. 20 years is so harsh. I don't currently suffer. I started just like you around the beginning of puberty, until I was getting one every 2 or 3 weeks in my teens and early 20's. I'd have blurry vision as my warning and feel off my food. I'd be incredibly sick for around 6-8 hours each time, then have that hangover which you describe so well. I was incredibly lucky and Amitryptiline worked for me. I took it for about 10 years in total, stopping whenever I was pregnant. I've not had it since my youngest 2, and I've had only a handful of migraines. I really hope that for whatever reason, you find your cure or you 'grow out of it' too. I cannot imagine 20 years of that hell - it's soul-destroying and really impacts your life.

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