Where do we go from here ? Post traumatic chronic migraine

My poor now 18 yr old granddaughter was hit on right parietal area of head over 3 yrs ago by an unsecured panel of wood falling from a cupboard

instead of getting better she is worse with repeated stabbing pains at point of injury day and night disturbing what little sleep she gets

accompanied by what was a dull background headache 24/7 but now full blown chronic migraine inc nausea 24/7 which just 1 week of Venflaxine seems to have triggered off

thus spent 14 weeks earlier this year in and out of hospital with severe vomiting and status migraine unable to tolerate any light or noise

She has seen total of 5 neurologists inc the Worlds Leading Headache expert all of whom claim its Post Traumatic Chronic Migraine

cannot tolerate any of the mind bending drugs thrown at her

went through the utter hell of IV DHE for 5 days in Aug that was claimed would "turn the ship around "

The only treatment that gives any relief at all albeit briefly is IV lidocaine or Greater Occipital Nerve Block but on NHS theres 6 to 8 month waiting lists for anything

Even privately getting GON cant get apt till 31st Jan 2017

She should be doing her exams in May ( already deferred from this year to take up a place to study law at Oxford also deferred) .........they want her so much because of immense talent

However unless we can find a solution to the hell she is suffering all that and her life is out the window

No neurologist seems to know what to do let alone care and the NHS is hopeless

We have a legal case going on but people who caused the accident and their insurers have prevaricated for so long the legal bills are off the wall never mind all the costs of mileage and medical fees paid out that need refunding

We just do not see any end to this hell

6 Replies

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  • Hi, just wanted to say I'll have a think and sorry to hear all about this

    ...just going out but will message you later.

    Take care of yourself too.

    K

  • Hi again,

    Sorry, no magic wand for any of us, but a few things came to mind while I was out (sorry if you have tried these already)....

    Have you tried the community neuro rehab team? can they suggest anything ?

    Have headway any ideas?

    Can Oxford suggest anything (if they have a legal team they may have some ideas?) . if they really want her they might be willing to help....even if just in an emotionally supportive way....keeping her spirits up etc. (My eldest went to Oxford and they told him at interview to just askfor anything he needed.....maybe they could help in some way in advance ??)

    Sorry not to have the magic formula for us all .

    Good luck ! X

  • Hello there,

    I'm posting a link for you here to read about migraines that come about due to inappropriate medication. It was my problem for years. Have a look at it and perhaps speak to these people.

    migrainetrust.org/about-mig...

    I am a grandmother too. I can't imagine the distress it is causing you watching from the sidelines.

    A year or so out of the pressures of study or exams is ok for her, she can always study later on, her health for now is most important.

    Perhaps it might be better if she had some talking therapy re PTSD rather than more meds if she is intolerant to them? If you think it appropriate perhaps talk to someone at Headway for suggestions of how to get this.

    She has been through a very frightening time and it's just a suggestion from me, please know that I care.

    TN

  • Oh reallyfedup I feel for you all.

    Please talk to the Headway helpline.

    In the mean time I whole heartedly agree with tired nan and Moo.

    Breaking things down a bit....

    The post trauma element needs dealing with and that could be simple counselling, CBT or a number of other things but it sounds like it's important.

    The eye migraine bit is a lot more complex.

    We are not medics but some things to work with are....

    Making sure that your grand daughter is properly hydrated. Avoid caffeine.

    You could try wearing an eye patch over the affected eye wearing it all the time for 2 days and gradually increase the time when it is not being worn.

    Encourage her to learn to see again and how to pay attention to the important things rather than seeing everything.

    Hope there is something you can use.

    Love n hugs

    Xoxo

  • Me again

    Just noticed that you don't mention whether your granddaughter has had an MRI.

    You also mention noise sensitivity. There are so many types......volume, pitch tone etc. If you can find out what is causing the biggest problem it could help .

    If it is response to unexpected sounds then , as soon as you can, examine the sound. Ask these questions

    Did I end up in hospital?

    Am I hurt?

    Is there any damage anywhere?

    When you answer no to these questions it is safe to ignore that sound in the future.

    Please remember that after any brain injury we are like babies in some respects.

    Love n hugs

    Xoxo

  • sadly all of above and more tried ...definitely not medication overuse she wont even take any at all now ...the non stop day in and day out pain and resulting lack of sleep have taken their toll on memory and the last appt with Neuro so demoralising by offering not one single ounce of hope of an end to the pain that her previous chin up and optimistic attitude is now out the window...Local Headway said a year ago she is stuck with this for life

    It is without any doubt a very talented girls life utterly destroyed and the entire medical profession utterly useless

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