Anyone had IV DHE and is worse than before

my poor 18yr old grandaughter who has 24 /7 level 10 post traumatic chronic migraine was assured by the worlds top headache professor that it was the best option "to turn this ship around "

It was 5 days of pure hell akin to chemo and now a month later she is far worse with added problems of chest pain and room spinning and the migraine worse than ever instead of better

i am in pieces watching her suffering and absolutely no one seems to care

28 Replies

  • 😣😭😭 can't believe she still has no relief. I got one migraine while receiving the treatment but they came straight back when it was over.

    What about this SCS implant treatment one of the group had done?

    Have a look down the page and find the post.

  • Even whilst in hospital her migraine was worse with every infusion

    HE refuses point blank to do the implant

    Because he wont do anything that cant be reversed

    Apart from which the waiting list on NHS would be interminable

    For DHE its 8 months so to think we even paid for this hell makes it worse

    Not one single med helps they all make her ill and crazy

    Poor kid just wants to finish school and go to uni but that wont happen like this

  • That's shocking 😠 I'm sure SCS is reversible. Have a friend who had it but not for migraine and it caused her so much pain they removed it.

    Think it was a spinal injury she actually got it for.

    Surly someone can help her 😢

  • Its utterly criminal and its destroying a girl who was destined for a very high flying legal career

    Shame its not the clown that failed to replace 2 screws in a wood panel that fell on her head 3yrs ago and trigerred all this hell

  • I feel for you, it's so hard not being able to get a minutes relief from pain and just as hard for those who care. I've had dhe without success too.

    Not sure where you live but my first suggestion is get a new consultant.

    Also, how can any of the treatments we try be reversible?? The dhe can't be undone just like any other drug we put inside us.

    I hope you find something that works for your granddaughter soon.

  • Because she is under top worlds consultant no one else will touch her

  • Didn't see that bit, Who is the world's top consultant?

  • according to International Headache Society its Professor Peter Goadsby he claims 80% of post traumatic chronic migraine caes recover in 5 yrs 20 % will not ,he claimed DHE was best option to " turn this ship around " instead of which she is worse and its now 3 yrs and a week after she was injured innocently sitting having a cup if tea

    this girl also saw Manthura and a few more besides inc GOSH

    no one has any answers and we seriously fear she is stuck in this hell for life

  • I thought it may be him as I've heard that name a lot. You must be in or near to London and that is a huge advantage over other parts of the country when it comes to treatment - honest.

    I'm lucky enough to have a great consultant in Birmingham but she still has no answers for my 4 year long pain, it was hoped the dhe would provide a turning point.

    It's only when you experience it that you realise how much isn't known and the vast amount of research that is needed to find effective treatment, and hopefully a cure.

  • All the neuros have been at a symposium in the USA for last x days all claiming theres new stuff in the pipeline

    what gets me is the poor kid is worse after DHE not better

  • The reversable treatment we we're referring to is scs implant, obviously not drugs orally /IV .

  • I was referring to the quote - "HE refuses point blank to do the implant

    Because he wont do anything that cant be reversed"

    But if he is willing to try dhe which can't be reversed then why not the scs?

    Did I make sense this time Cally01?

  • Hey jane-birmingham yeah i got ya and absolutely agree 😆 can't believe the pain this girl is in and for far too long 😢

    There much be something someone can do!!!

  • I totally agree and sure wish I knew what it was we certainly bitterly regret agreeing to DHE

  • Reallyfedup123... i feel so sick with whats going on 😢 as I'm sure wee all do.

    Honest to god i would be writing letters of complaint everywhere, patients experience panal, NHS main complaints , my MP!!! The bloomin lot. Local paper would be involved....I'd raise her profile and scream and shout until someone does something. She's a child with no life or future......soooo god damn angry 😠😠

  • You would really scream if you knew who my MP is

  • I'm scared to ask !!!

    Maybe social media, go fund me page, something to get her known and hopefully someone in USA will help!!

    Someone here will hopefully have skills to do this!!

  • Ask if she can have a trial of GammaCore which is a neurostimulator you apply externally to your neck three times a day as prevention, and extra treatments for acute pain. It works on the vagus nerve.

    There's also the Cephaly device which you can buy yourself on the internet direct from the company and get most of the money back if it doesn't work. This works on the trigeminal nerve (like a "Startrek" headband.)

    Has her neck been looked at/scanned - after a head injury I had acute and chronic neck problems which worsened my migraine but which the doctors have never taken seriously.

    Another option is to try acupuncture, gentle chiropractic, cranial osteopathy and Alexander Technique if the medical doctors can't or won't help. These may help to lessen and manage the pain, but obviously there's paying for it. This is the route I was forced to take in my 20's/30's.

    I use ice packs for the pain in my neck and head (I have to move them round) and this helps with the worst of the pain.

  • Apart from gamma core all has been done and tried cefally does not work she has a TMS device which is also useless

    i agree i think theres hidden damage in her neck but also theres nerve damage at point of impact and botox has not helped that

    If only all the mri or ct scans she has had would show where the damage is it might help but idiot doctors and the professor think they know it all and make things worse not better

  • When all else fails try looking this up: Angela Stanton Migraine Protocol or desperate times call for desperate measures, try the migraine surgery centre in London they remove the trapped nerves. Hope this helps

  • She'll be fine.

  • Nonidea how you think she will be fine the last 3 years have been total hell

  • I really feel for your granddaughter and all her family. Sounds like hell. What does Prof G suggest now? What is his plan? I presume she has had GON injections?

  • GON eased the migrain a notch or 2 for just a few weeks but they wont repeat more than every 3 months

    Prof G not yet responded to the fact that DHE has caused more pain

    but all he has said in past is " i will get her well eventually " which means nothing because unless she can get her exams next may and get to Oxford next Sept there is absolutely no point to life 3 yrs has already been totally and utterly wasted

    Nothing stops the repeated stabbing pains from point if impact which occur many times a day and wake her many times a night

    she is highly affected by light,smells ,sound in fact everything other people have no problem with so there is no quality of life its just one never ever round of pain and now more pain and discomfort

    hence no matter how hard you try regular sleep is impossible

    I dont think any neuro bothers to really listen or understand either NHS or private

  • Was that you who just sent me an email reallyfedup123 ? If so, I just sent you an email response.


  • yes and have replied

  • I have read the above posts and feel compelled to comment. What an awful situation for you all. I too am a migraine sufferer, although not on this scale. I found it to be quite distressing reading. I can only imagine the daily hell that you are going through. I also found Franklin_Fulcher12 comment unhelpful and wholly inappropriate. I guess he/she is not a migraine sufferer and is fortunate enough not to have to care for anyone that is. It is absolutely outrageous that medical professionals can still be so dismissive of this condition especially as, I am told, that a recent survey found migraine to be the 4th most known debilitating illness. I so hope that your grand daughter gets some relief soon so that she can get back to living her life rather than just existing. If there is anything that I or other members of this site can do to assist her plight (fund raise, petition, raise awareness etc) then do please post again. I shall look out for your updates. Finally, take care of yourself and your daughter too, without your support I'm sure your grand daughter's condition would be just that little bit worse (although I'm sure that doesn't even seem possible). My thoughts are with you and your family.

  • Thank you .....not that financial compensation is the answer to her suffering but the one thing this entire sorry situation has highlighted is :-

    If it was a workplace injury there would be absolutely no arguing whatever as to whose fault it was is always 100% the employer irrespective and the compensation would be in Billions without costing the injured person a penny

    But because it is the fault of a landlord and a so called qualified contractor any compensation with be a minute fraction of that and looses at least 20% in legal costs because Government has not enacted the same legal protectionas they have for workplace injuries

    If the medical profession in the last 3 years had taken her situation far more seriously and getting Neuro appts on NHS not so tortuous maybe just maybe she would not be in this situation

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