Invisible illness: fighting back

Invisible illness: fighting back

Hi all,

Great to see a place with lots of advice and support, it just not always easy to talk to people not going through something similar.

I get migraines, with and without aura, nausea and sometimes vertigo, all with a thumping head. The triggers seem to be growing. This all came on out of the blue 4 years ago, I'm in my mid 20s. My body can't seem to keep up with my mind but, there's got to be more to life than just suffering, right?

Misunderstood and understudied, it feels the only way to fight back against this invisible illness is to take up the case myself. There are thousands of potential combinations of causes and "cures". I've started a blog to document and share my journey, there is a life behind the condition after all. It'd be great to hear your thoughts and stories!

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  • Hi there, It's an impossible illness at times. Because it changes the goalposts all the time it's brutal trying to explain to the GP without looking like a loony! !

    The best person to sort this and get to the bottom of it is you, it's difficult though as your usually in pain, can't focus or concentrate ๐Ÿ˜” sigh!!!

    That's what i done. I finally recognised i was having 2 types of migraine, jaw migraines and aura migraines (which neurology called Hemacrania Continua ) but i never believed the label they gave me. So....i set out to fix myself.

    I've gone from persistent daily headaches which escalated to multiple daily migraines to a dull headache every couple of days since 8th December. Finally getting it under control although I've been registered disabled and lost my job in the process!!

    The dull headaches should reduce over time.

    Tried everything from botox , nerve blocks to supplement mixtures eventually botox into my jaw muscles stopped the neck,temple, eye and head pain!!

    I wish you luck on your journey ๐Ÿ˜” be well.

  • Cally,

    Interesting points raised, and some journey you've been on yourself! Sounds positive and I hope it's the start of the end of your problems.

    I've seen Neurology specialists as a routine MRI about 12 months ago showed a subarachnoid bleed and I was admitted to hospital. I understand GPs do not typically specialise in the area, nor does every neurologist, which has meant despite seeing various experts I still just have 'migraine'. I could really do with understanding each migraine type further as this could help understand how to best tackle this. Any advice?

  • My_Graine,

    It's a long journey but it just makes you more determined to win everytime your knocked down. I've had migraine 40yrs and managed them pretty well until 4yrs ago when everything changed, weeks in bed at a time, constant migraine daily for 3yrs. Had every tablet the docs could throw at me, cefaly,tens machine, physio, chiropractic specialist, occipital nerve blocks,botox . Nothing worked so GP & Hospital just kept prescribing oral morph, pain meds for end of life....they had no clue what to do.

    Everytime i hit the bottom i got up fighting ( yeah at times i thought I'd had enough, can't take anymore, i don't want to die but i can't live with this constant pain ) that just made me really angry. How can this be 2016 and no-one understands this invisible illness!! People would say "you look well" gawd if they could have 20mins of my pain they would understand.

    Take loads of notes, i already knew my food triggers and avoided them all my life. I started focusing on where the pain started, where it travelled to next and symptoms i was feeling. I kept tracing it back to my face, i would yawn and get a pain in my ear so zoned in more and finally seen a face specialist. Neurology done 3 mri and missed that i had no cartridge on the left side of my jaw. Long story but short version, jaws locked, purchased cerezen which has helped me avoid a jaw joint replacement for now. Botox has stopped all pain ๐Ÿ˜†.

    Be aware of your body, write it all down, don't get given a label and accept it, honestly don't trust neurology i don't think they know migraine at all!!! I saw 3 (2 privately -ask them questions, don't just take their answers as gospel - you know you!!!)

    Try not to overdo pain meds / triptans - that will make you worse. Only when i couldn't take no more i would use an imigraine injection. Most of the time i wrapped my head in ice packs, temples and nape of neck ( worked better than volterol/ deepfreeze etc )

    I also seen a herbal GP at Napiers in Edinburgh who made me a cream and a tincture - helped loads.

    This is just the surface of what I've done but hopefully it will give you some help on where to start ๐Ÿ˜˜

    Read peoples stories from their pages, you'll learn loads and it will help you identify whats going on with you.

    We're all here ๐Ÿ˜† be well ๐Ÿ’“

  • Cally,

    Thanks for sharing. That's great!

    I'll be documenting my progress (hopefully with a happy ending too!) on my blog, if you get a minute, check it out ..

  • Your very welcome ๐Ÿ˜† yeah i will check it out.

    Good luck huni ๐Ÿ˜†

  • Chris,

    Sounds like potentially a 'let down' migraine? I've seen them mentioned a bit - seems to be common with the demands of modern life.

    I've spent several hundred pounds this year on all sorts of things; accupuncture, osteopathy, chiropractors, supplements, and the emergency supplies needed to survive attacks. I wouldn't mind (as much) if any of it worked for me.

    Craniosacral (CST) and allergy tests are my next route.

    It's tough, trying to keep up with life with such a condition going on in the background. Especially with family and friends.

    What other things have you tried?

  • Chris,

    I hope that is the end of it for you and that it doesn't pass on (I have a little one too!). Have you had an attack whilst being pregnant?

    I'm with you, there's not much I wouldn't at least consider to put a stop to these. I'd be interested in hearing more on the book - a neurologist I'd read up on used a really good example that seems to explain why my triggers have got worse, even though I've never been as conscious about how I treat my body. He said the central nervous system is like a cup, something aggravates it and it fills up, yes that glass of wine may trigger it to spill (and migraine for us migraineurs), but cutting out the wine will not stop the cup filling and other triggers setting it off.

    Allergies, even ones with no symptoms, can be a big culprit apparently. Especially dietary ones. I want some thorough tests done but have heard endless reports of ones via GPS being quite the opposite - where did you get yours done?

    I think for most there is a simple solution. But it comes down to really knowing our bodies and fine tuning, could take a long time. It'd be so much easier if we came with on-board computers like cars ...

    The link is

    I've only just started - any thoughts greatly appreciated!


  • That's an interesting point on diet types - have never considered it. Have you ever tried it?

    I know - there was a neutrionalist talking about the links with migraines and the sheer amount of tests. One issue can be that only a limited number of tests are done within each area unless specifically requested, and then the range of what's 'normal' can be too generic and large and therefore overlooking a potential issue. I'm going to bite the bullet and go for the full works with a specialist to see if there are any deficiencies there.

    Have done the glasses thing too, same result but got glasses with coating for work just in case. No change unfortunately (worth a shot).

    Sorry to hear that. I hope you're not suffering - can you take abortive medication whilst pregnant?

    Also, I've seen the device. Ive read mixed reviews - like lots of the gadgets, slight reduction for a little while but not life changing. For the sake of ยฃ250 - worth a shot though!

  • They'll take your money and come with half a dozen things for you to keep off to justify it,buy some cayene pepper,Himalayan salt,bicarb mix it with some boswelia cream put it on your neck,forehead etc even a little in your nostrils but mind your eyes...look it up.

  • Feels like that sometimes, yeh.

    So is that a relief cream I take it, rather than a preventative?

  • I use it as both although you can tend to forget when you are ok.Talking of diet i wasn't a potato eater so i started eating boiled potatoes every day and my headaches were greatly reduced may be potasium connection there,still what works for one won't for the other,visa versa hence no one cure for all,everyone is looking for the magic pill but as we all know it doesn't exist we just have to keep on searching more so for our own relief of the differing symptoms we all suffer.Here's wishing good health to all.

  • Both worth a go! Thanks for sharing. You too.

  • Hi My-Graine.

    I've suffered ever since I was a little child with sometimes awful migraines. It has however been on and off. After reading some of the posts on here I don't know what I am on here for.

    When I was a child I don't think I drank enough and the sun affected me.

    When I was a teenager it was my hormones and I really suffered.

    As an adult it was because I was on HRT and they were getting bad again.

    Now I'm off of them I still get headaches and never know why. I also get aura migraines which started last year.

    The really bad migraines have gone. Hopefully for ever. I'm never too complacent about it. The headaches however can be quite frequent and the only way to stop them is through taking a Naramig. Then I feel groggy for the rest of the day. If I don't take one I can get a headache for days and nothing else will cure it.

    I was worried when I started the aura migraines as I never had them before but asking on this group has relieved my worries.

    I hope for all you really bad sufferers you'll maybe find something soon.

  • Hi Mavary,

    We all suffer in our own way. It's crazy how this condition evolves.

    Personally, if I were to experience new migraine symptoms or changes I would always speak to a doctor. It could be nothing and it may be a quick conversation but better to be safe than sorry, plus it's always good to have ongoing dialogue.

  • That's what I thought but when I mentioned it after my first two aura migraines she didn't seem very worried about it. I will be mentioning it again when I go next week.

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