17yrs old and life wrecked by over 6 week long severe chronic migraine

Sustained a TBI in sept 2013 suffered increasing post concussion stabbing pains from 4 a week to now 100 times a day totally disturbing sleep and now triggering horrendous migraine

has been in hospital on a drip 3 times in 6 weeks for 3 days at a time for the severe vomiting migraine attacks but meanwhile 6 weeks in a darkened silent room is the only way she copes

Not one single drug works on either the neuropathic pain or the migraine and the side effects of every one that has been tried are horrendous within days and discontinued

The only thing to apparently stop the neuropathic pain is a week long IV infusion of Lidocaine but this is not available in her hospital

They refuse to transfer her to a hospital; in London who will do it

she then needs IV  DHE to break the migraine but that too is not licensed in her hospital

Her life is down the tubes and not one single person on the NHS gives a dam

Just what do we do now

9 Replies

  • Hì 😊 I have had DHE treatment IV every 7hr over 4 full days ( day/night) multiple migraines a day, 2mths in bed, no noise, no light...no life. The whole time on the IV i had no migraine , as soon as the treatments ended i had a migraine within 24hrs.

    I had to do the treatment privately , the drugs were sent from Canada.

    Has occipital nerve blocks  been discussed ?  Might be worth a try. No treatment worked for me. 18 months of multiple migraines every treatment from nhs/ private but don't let this dishearten you, eventually diagnosed with a problem with my jaw which needs a couple of ops.

    Every migraine tablet gave me horrendous side effects. Hang in there. 

    Take care x

  • Oh my life

    Occipital nerve blocks done no effect 

    Its over 20k for iv lidocaine and iv dhe 

    And if neither work i dont know what we will do 

    Which consultant were you under ?

    Send me a pm 

  • Hey where r u based? I would suggest seeking help from a local headway group- they are great with supporting folk with Brain injury but some groups may help u get help from NHS/dr. All groups are different so it will depend where you live but worth a shot. Tell them how bad it is and ask if they can help fight your corner or help you be heard. Could they help speak to the hospital? 

    Other option is speak to PALS within that hospital and beg for their advice or go back to the GP and ask them how to get them moved to correct hospital...

    Failing that take it to your local MP- no one should have to suffer and if there's treatment available just at a different hospital then why can't they move them??

    I hope you get her some relief-must be horrendous :-( 

  • Local Headway group useless 

    They told us she is stuck like this for life 

  • No way!! Where r u based? Which group said that?


  • PALS useless and any move to the top neurologist and hospital is 6 to 8 month wait on NHS

    Local hospital and neurologist and pain team hopeless all they want to offer is opiods which of course is the very last thing she needs 

    Already tried fenytnal patches but they barely touched the pain and she has come off all pain killers al by herself 

    Its not medication induced headache

    Not hemiplegic migraine 

    Its full blown chronic severe status migraine and she is told to put up with it 

    Cannot even get proper fast track treatment and a quiet darkened room in hospital when she suffers the continuous vomiting sessions which means she has to be on a drip

    By look of things only real up to date help is in USA 

  • So sad to read this, I suffered with continuous hemiplegic migraine for 4 months, resulting in paralysis down the left hand side of my body, all manner of drugs tried & failed. The only thing that stopped the horrendous cycle for me was high dose Amitriptyline 100mg at night, yes they do make you very drowsy, but this wore off after a few weeks of use, although to be fair feeling drowsy, was easy to cope with compared to the migraine. Hoping a solution is found soon.

  • She has tried amitryptaline but on the lowest dose she is like a zombie

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