my 13 year old grandson with Hemiplegic Migraine

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I hope my message helps someone with this horrible condition.

2 months ago my Grandson was diagnosed with HM and he was put on Propanalol 40mg twice a day and this turned him into a Zombie like state.

I decided there must be something i could do to help him and i made him a promise that i would do everything to try and find a solution.

my grandson was having daily stroke like symptoms with right sided Paralysis and speech and right eye problems.

It was a disturbing sight to see.

After many hours and days of reaearch i came up with my own ideas and i decided to give this a try.

1st i cut the Propanalol down to 20mg twice a day which helped with his sleep pattern before he was sleeping 14/15 hours a day.

Now he was down to 10 Hours a day.

2nd I gave him vitamin B1-B2-B12 first thing in the morning.

3rd i gave him Magnesium and Cacium at Bedtime.

This treatment started 10 days ago and in the last 5 days he as had no attacks of Migraines.

This is only early days but may be an idea to try this and see how you go

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  • Posted

    Good job! All those things are great. Try some CoQ10 also. Additionally, track everything he is eating. Some food triggers are all natural and healthy like bananas and avocados, yogurt, yeast extracts like marmite or seasoning packets, anything with tyramine which occurs in ripening fruits and veg. Caffeine chocolate, cheese. Food trucks goers are abundant!
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    • Posted

      Thanks for the info Meghan i was already thinking of Q10 but i wanted to see how he went with the vitamins and reducing his Propanolol.

      I will try these if he gets further attacks.

      Best wishes to you

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  • Posted

    dear Edwin 

    Your grandson is blessed with a loving grandma , good for you challenging propranolol .Ive been HM and Suna many years now but I have also been a teacher a lecturer of those both children and adults with learning difficulties , many doctors prescribe drugs for valid medical reasons with very little understanding of what effects those drugs can have upon the child teenager or adult.I had propranolol and came of it within weeks because I could not function neither did it help my HM similar to your sons but on the left side with major paralysis.What you are doing is the beginning to finding the best treatment for your grandson.It is an upward battle many doctors have little understanding of HM let alone seen it or been honestly truthful about understanding the drugs they prescribe the good ones refer you to a specialist.Research those in your area, research their portfolio  look on line.

    Your right in not letting your grandson be Zombiefied .Ive tried to work with many children and students who have been out on drugs primarily for epilepsy that have no positive effect upon that specific child's condition except Zombiefied them which effects their learning comprehension and retention it affects all areas of their learning and most teachers are sadly lacking in the skills time and knowledge of what and what not is appropriate in teaching practise and support.

    There are non 'drug' medications ie Feverfew , doesn't work for everyone and dosage is trial and error.Always check whatever you give with the professional you really trust who knows what their talking about.Ive been in hospital and A&E many times being so called treated by those with little or no understanding of HM.You and your children need to be your grandsons protector defender and informer to the medical profession.Learning yourself is always the best step then you educate others and your grandson.Hes at a tough age my heart goes out to him.But tell him there are medications that can control his attacks , diet,and activities hobbies etc all help.Having a right attitude is essential being positive throughout even when it's tough at school is paramount in avoiding disaffection towards learning. Educate his teachers they probably have little or no understanding of HM.Refer them to the site The Migraine Trust.Every year there are events activities and advertising posters .I handed some out to medical surgeries, schools and my church .Very little is known or understood by the general public and sadly the same in the medical profession .Text book I Know quips are no use at all when dealing with and helping someone during an attack and afterwards.

    HM affects the lives around the sufferer .I don't know where you live but there are centres of excellence in neurological care and understanding you can get referred to for private consultation and NHS consultation.It took me three years till I found Professor Goadsby at the UcL London deny Neurology and neurosurgery.He has now left but there is a doctor there I totally trust .dr Paul Shanhan .hes on the web so are his colleagues.There are others like him with various practises towards HM .Dont settle for treatment from those that do not really know or understand HM.Your grandson deserves proper treatment from professionals who really know their stuff and have an understanding that just dashing out another tablet prescription is not the answer.If the judicatory would allow I would offer you my contact name and email.I have taught for nearly 15 years all ages all capabilities up to degree across the board.Maths up to basics of year 8.

    Whatever your son has a passion for in subjects at school encourage him with those.ie arts,film,music,history,geography,languages sports English or maths.even sciences astronomy the law,IT.I struggled to get two of my four girls into support for severe Dyslexia they are now post degree independent makers in the film and craft industries .Whilst you and his parents search for the best care he can recieve on the NHS (you can pay for private consultation and then go back to the NHS for treatment) encourage him in his hobbies interests and strengths.Good luck and all my best wishes for your grandson.If I can help in any way please just send me a message , judicatory how does this operate ? no charge my help is free willing given because I and my family have been where you are now.

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    • Posted

      Thanks for your input Yvonne only a few months ago my grandson was a 13 year old superfit young man and over the years he as had to fight many times back to full health.

      When he was a baby he was struck down with Septicamia and he spent 10 days fighting for his life.

      Only 5 years ago he was coming out of school and he was struck by a car and the driver drove off and was never found.

      Ethan my grandson had to undergo surgery and Physiotherapy Rehabilitation.

      And now he as to deal with this and as i said he was superfit and one of the best 13 year old swimmers in the UK.

      He is a fighter and will come back and get in the pool again to perform.

      Not only that in the last 2 years he as raised in excess of £15000 for those in need.

      He combined his swimming with fundraising and he raised thousands for Francis House Hospice-St Anns Hospice-Asthma Uk-The royal Manchester Childrens Hospital Cancer Unit- and he collected hundreds of items of food for a local food bank.

      He is a fantastic kid and does not deserve the things that life has thrown at him.

      you can view a story about him and his illness and everything he has achived by going online and look at Paralysis-hit fundrasing star vows i wont quit and this will show what he as done for many people.

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    • Posted

      thank you Edwin,

      ethan sounds a wonderful young man .How sad he was involved in such an horrific accident. thank the Lord he survived and became a brilliant example of challenging adversity and helping others so much.Well done Ethan.If ever he needs help in the future you can contact me. What a great character his determination will take him far.I sincerely wish him a good recovery and happy life ahead .Yvonne

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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