Introducing myself and my 'migraines'

Hi everyone,

I'm 19 and for the past 5-6 years have suffered with terrible, debilitating headaches that sometimes last up to 7 days, and don't respond to any form of painkiller. During a particularly bad attack, that was so painful I was in tears and quite frankly considering doing something to knock myself out long term, I decided enough was enough, no more being fobbed off by the GP's with another ineffective painkiller, and I had my mum make me an appointment.

The doctor put me on an oxygen tank, and put a referral to a neurologist through, finally. She gave me some diahydracoedine, which knocked that one on the head, and some anti-nausea tablets too since I'd been off food for over three days due to the migraine.

After seeing a neurologist, it was concluded that I had chronic migraine syndrome, which I have to say, I don't entirely agree with. I fully believe a lot of the time I do get migraines, but sometimes they're on a different level, and better fit the description of cluster headache. Either way, I agreed to do a 12 week painkiller detox (after 5-6 years of just being pumped with them to try to function with the headaches, my body was overloaded!), and when it was completed, I was put on propanalol, however it aggravated my asthma too much, and today I was given amitriptyline.

I'd love to get some perspective off other migraine sufferers, because I'm convinced it's not just migraine going on here. I have so many symptoms during attacks that have nothing to do with migraine to the best of my knowledge, and every doctor I've seen remains ignorant to that fact.

I'm glad to have finally found somewhere I can express all this - dealing with it on my own isn't easy! Looking forward to your responses, and thank you for reading such a long post.

7 Replies

  • Out of interest what are your other symptoms, I have Hughes Syndrome, otherwise known as Antiphospholipid Syndrome. This alongside Lupus causes me terrible headaches at times. MaryF

  • Hi MaryF,

    I get the one sidedness associated with cluster - sweating, nasal issues, eye pain etc. I also have horrendous temperature issues during my attacks, I'm either too hot to the point I feel I'll pass out, or absolutely freezing. No joy when I asked the doctors if there was anything that could help with that.

    I also get visual disturbances, but they're pretty much constant, and worsen when I have an attack. Whenever I close my eyes it's like I'm looking through a kaleidoscope. Very annoying. The headaches also trigger my TMJ, which means even more trouble eating, along side the nausea. Dizziness at times too. Also neck pain.

    I have Fibromyalgia, TMJ, and migraine, all of which can trigger each other. Have to sort all three to get them to go, because it's impossible to sort one, as one of the others will just restart it. Isn't it always the way, one illness isn't enough, something has to pile on top of it.


  • Fibro is often undiagnosed Thyroid issues and often TMJ can show up in that! I hope you get better soon. MaryF

  • Hi. I was imigran injections for a long time and eventually due to nhs cuts in the uk i was taken off them and was put on sumatriptan which were great when the pharmacist gave me this one particular brand in which the tablets were like a pinkish salmon colour but when he gave me the white brand they didnt work. Then the neurologist put me on topirimate(topomax) they made my headaches worse. I have fibromyalgia and for the pain one of my medications is amitriptyline and my dose is 3x25mg at night. But when a migraine starts i take a couple with my painkillers which are 30/500 cocodamol and that works for my migraine. But the gp and nhs cutbacks have made the gp prescribe zapain which is a far cheaper version of cocodamol abd this does nothing for my migraines. I got the mims book from the pharmacist and when you look at your meds in there it makes you see why your medications are different. Its all down to cost at the detriment to your health and this angers me when it comes to things like migraine cos its a pain lime nothing else :(

  • Have you read the book " The migraine brain " , really good on different symptoms ,...can't remember the author ,a Dr somebody but google it and I'm sure it will come up,.

  • It's good that you are seeing a neurologist. There's no doubt that most chronic headache sufferers in desperation take so many pain killers that the pills become a major problem in themselves, causing at least as many headaches as the underlying illness does. You have to detox and stay detoxed and that is very difficult. Of the triptans, the most effective for me has been Eletriptan but again it's easy to overdose.

    There are many prophylactic treatments, Propanalol helps many people but an alternative approach which seems very promising and has few side effects is Botox treatment. If your local hospital cannot provide it, you may consider having it done privately at Queen Square to see if it works. It costs about £500 but if it works you may be able to argue a case for getting it free on the NHS.

    It's essential you keep a detailed diary of your headaches and note any changes which may explain the pattern: foods, weather, sleeping, unusual activities....

  • Sorry you have suffered so much. I've had chronic pain in my face for many years, and also suffer from migraines, so I agree that it can sometimes be difficult to work out what's migraine and what's something else - including what might just be a "normal" headache and feeling unwell like everyone else gets!

    I'm finding that my symptoms and therefore the treatment changes every now and again. And it can take a while to find something that will work for you - I know we all want to feel better straight away but we have to be patient and try different treatments.

    Probably the biggest thing I have learnt is that you need to give a new medication time to work and time for any side effects to settle down (unless they are completely unbearable). And if it doesn't work, go back to the doctor. You don't have to suffer in silence.

    Oh - and it might be a combination of things that helps you, and that sometimes those things aren't all going to be medication.

    Good luck.

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