Something more than migraine.

[JB52]

If you have all the symptoms of chronic migraine but something in yourself tells you that it is not just migraine, what can be done?

Do you listen to your body or discount it and has anyone else ever experienced this?

[Onthemove1971]

Is it most likely something else.. usually something else is causing the migraine.

Do you have neck and back pain?

[JB52 in reply to Onthemove1971]

It's not me who suffers from migraine, it's my daughter, but yes she has neck pain. She also has occipital neuralgia.

[Nonameavailable]

I keep suggesting to the professionals my chronic migraine at the moment is secondary. It’s hard work to get anyone to listen to you and do any further tests.

Good luck . And although we may not all be medical professionals I think we are probably the experts on our bodies

[JB52 in reply to Nonameavailable]

Thanks for your reply.

I am asking on behalf of my daughter. That is what my daughter has had to deal with as well. There must be a way to move this up to people who will listen. Let me know if you get to that point and I will do the same

[Sprout]

Ask for an MRI scan to check for physical damage to the brain,

[scottlondon]

Check out a tms group on Facebook, or pain free you on Facebook, or journal speak with Nicole Sachs, unlearnyourpain.com, sirpa, the book the great pain deception.

Trust your gut

[Chleo11]

Hello JB52. I'm having this issue as well at the moment of combined chronic migraine and other types of head pain + facial neuralgia. Specialists are not interested as for them a head pain is a head pain. I've done some digging and it looks like what works for chronic migraines will work as well for occipital neuralgia or tension headaches and possibly, vice-versa. Non-migraine head pain can trigger a migraine and migraines can trigger other kind of head pains. They reckon that even the best specialists would struggle to entangle the whole web when someone shows signs of the 'whole package'. A brain MRI won't show anything, except if there is really something very serious going on and you really need to have a frank discussion with your doctors about your fears. I have started to see a chiropractor and he will do some Xrays of my neck next time I see him. From his first appraisal he said that especially my neck, but the whole of my spine is in a very poor state. He did confirm that you can get a mixture of head pains (including migraines), as well as facial neuralgia, all caused by neck issues. He is a Doctor in Chiro, so I sort of trust him, I believe.

I don't know how old your daughter is but did the GP check the basics, like blood pressure, blood tests, eyes, weight and so on? She should get checked for her hormones as well. Insist on being referred to a head specialist if you feel it is right. My daughter has started getting more and more migraines lately and yes, it scares the hell out of me to think she could become like me. Give your daughter plenty of love, cuddles, always take the time to listen to her (I'm sure you already do). Tell her she'll be fine, because. let's face it, when this migraine/head pain issue is dealt with early on in life, it is much easier.

All the best.

[Nonameavailable in reply to Chleo11]

My consultant put the Botox down side of my upper spine yesterday , and focus on shoulders too. She is an Angel . She doesn't do the standard 31 jags. We identified my personal trigger points and she injects there. It helps my trigeminal neuralgia masses. Cuts way down on frequency and severity . Spine is new. I will feed back in a couple of weeks.

[Chleo11 in reply to Nonameavailable]

Hello. Yes, please, let us know how things go. Thank you for letting us know.

[JB52 in reply to Nonameavailable]

Best of luck. Feedback will help everyone I think

[bamboo89]

Your daughter should be given an MRI of the brain to exclude the possibility of cyst or tumour, but otherwise, if there's no life threatening cause, it will be classed as migraine, which is an umbrella term covering a range of neurological symptoms, often of unknown origin.

In my experience certain foods can be a trigger (its cheese and dairy for me) but also the neck is often involved - I highly recommend seeing a cranial osteopath to resolve/help with neck issues.

[Littlemisssunshine87]

I felt like this back in 2016 when I was diagnosed with chronic migraine after a year of being unwell. I told the neurologist some symptoms I had such as muscle weakness, fatigue, stomach issues, exercise intolerance.... he wanted to ignore all those as they came months before the migraines started. Anyway I was right, I have now been diagnosed with Sjögren’s syndrome. I kept pushing for more tests and my GP did everything she could think of to rule everything out before being diagnosed with CFS.

My migraines are triggered by Sjögren’s through my eyes, they are very dry and very light sensitive to the point I can’t work, it triggers migraines all the time.

We all know our own bodies more than anyone and if it doesn’t quite feel right the keep looking. The neurologist I saw did actually say there is always a cause for migraine but finding the cause is like finding a needle in the haystack. Unfortunately for me the medications I’ve been offered for Sjögren’s exacerbate my migraines. Catch 22 isn’t it!

What symptoms is it that make you feel this way?