Adolescent (hemiplegic) migraine

Hi, my 12.5 year old daughter was diagnosed with Hemiplegic migraine about 2 years ago after being kept in overnight in hospital and having a CT scan (they initially thought she'd had a stroke). They started her off on Sumatriptan which had no effect whatsoever so then my GP put her on Amitriptyline 10 mg which was a God-send and reduced the frequency to about 1 every 1 or 2 months. However, she gained a considerable amount of weight and became quite lethargic. Last summer my husband suggested we reduce her dose to 5mg as he didn't like the fact that she had hardly any energy or motivation. This seemed to work very well, and after about a week she seemed to have alot more energy and less of an apetite and she had not had an attack. So we kept that up for a month. Then in September I took her for her pre-booked consultation at the hospital. The consultant suggested that she come off the medication altogether "as such a low dose wouldn't be doing anything", so she came off it. However, when she returned to school in September she started getting regular attacks again. We then tried her on Pizotifen (awful) and then Propranolol (no effect) so then I decided to put her back on 5mg of Amitriptyline, but this did not work so I went back to the hospital and it was agreed that she should go back on 10mg. However, she now has about 2 migraines a week (don't think they're hemiplegic any longer) and has missed loads of school. It only ever seems to happen during term time. She says there is nothing wrong and that she is happy at school and I totally believe her - she has also met with the school counsellor and Welfare Officer and they can find nothing wrong. I want to know what to do next. Do you think Antihistimines might be worth a try as a prevention? If so, which one? and can they be taken with Amitriptyline or should she come off that first? Many thanks for listening, Sue.

Hello there and welcome

Sorry your daughter has HM ...........

How long did it take for the Amitriptyline to work before? I ask as it mght be worth doing the 10mg for a bt long - as this drug builds in the body - and 5mg DOES make a difference - some people (myslef included) are very sensitive to it........ I know 5mg sounds a little, but I was on that amount for years and it was that that helped me get my sleeping back to normal - it can knock you out - so its worth taking it aournd 5 / 6 so you sleep during the worse knock out bits and therefore hopefully can get up better in the mornings.

Some of the other prevenatives are strong drugs and I would be wary giving them to a child - you need a good headache nero - there is one called Flunarazine - which is a calcium channel blocker which was created as a Antihistamin back in the 60s and it has a good rate of effect on HM, and the side effects are slighter than some of the others.... it is not licenced in this country - but a good nero can get it for you - its one I would recommend you talk to the docs about - your GP willnot have heard of it.


Now re school - HM is triggered - This is a list of POSSIBLE triggers - she will not have all of these and I would not recommend showing her the list - as it long and daunting - but it will give you an idea of the types of things to look out for - https://migrainetalk.forumotion.co.uk/t330-types-of-triggers

The school trigger could be a number of things - I suggest you go in and look at the room in which it happens the most - look for where she is sitting - it could be the lights (I have had to be carried out or schools now and have even collapsed at my sons school, due to the lights) Also look at the Window flicker ie blinds, white walls, lack of fresh air, smells, mould.......... her blood sugar also - at home does she snack but not at school? Stress is another - but f she says she is ok I suspect its the envirnoment.............My son has problems with school as a trigger.... things we have done, with the school are:

He is allowed water on his desk
A snack during the morning and afternoon
Does not sit under the lights
Does not sit next to the window
The wall in front of him is not white
He can wear his sunglasses in class if need be
He can leave the room to go to a quite dark place if he starts to see the dots (his per warning)
They know to call me if he gets to his full dot stage.

Everyone is different, which is what makes this hard to manage - but once you can work out her triggers you can start to avoid or plan round them.... Triggers can change and you can have more than one type of migraine.

Keeping a diary may help you both to work out the triggers - do not just look at what happends just before one, look as far back as 3 days..... food is often a trigger in children.

One other thing you may find useful is this -

https://migrainetalk.forumotion.co.uk/t100-potential-migraine-phases-and-symptoms

It might help you reconginse when one is coming - my husband can now tell the day before I get a big one.

Sorry I feel like I may have just thrown loads at you - but I hope it helps - migraine in children is so hard to watch (my son started at 5) ............. if you need anything or just want to vent we are here.

Tee x

Sensory input DEFINITELY increases at school! Fluorescent lights, noise, smells, everything!

Thanks so much Tee and Dr Pav. I don't want to appear dismissive of what you've both said but I should have stated that her migraines always come on shortly after she gets out of bed or when she's on the way to school - rarely once she's at school. Today, for example she was fine in the morning, got ready for school, then threw up when she got to the end of the road - my husband thinks that this one could have been triggered by the snow as this has happened before, so I think she has different triggers - she also has different types of symptoms - today's was a sicky one. She has also developed more stomach migraines lately and whenever she gets a migraine, no matter how bad the other symptoms are, she doesn't seem to have much of a pain in her head, it's more blindness, numbness and weakness. We have tried cutting out chocolate and nuts but she has been drinking quite a lot of milk lately - could this be a trigger? Any suggestions are welcome!

Thats fine hun - no problems at all.............. Having a migraine with no headache is possible and the aura you talk about can be worse at times................ snow could do it - I have real problems with white or glare and the cold - wear sun glasses

Blood sugar levels could be a problem - does she have a snack before going to bed - might be worth a go.

Pav will explain about the sleep pattern and mig trigger

Other things to look at food wise - is citus, sweetners, nitrates - what is she having for breakfast?

Triggers can be so hard to find - but once you have them it does get easier............. x

Ooh! I'm wanted! Thanks

When we sleep, we cycle through 4 stages of sleep, stage one being when we just nod off and stage 4 is the deepest level of sleep.

Migraineurs generally tend to get to stage 2 sleep and then struggle to get deeper. Stage 3 is important as it is this one which is regenerative. This is one of the reasons migraineurs suffer fatigue

Believe it or not (and most people don't so I won't be offended!) jaw clenching and tooth grinding is a MAJOR influencing factor for migraines, hence my ability to help. Now, when our teeth meet when we clench and grind our teeth, it send sensory input to the brain. You REALLY need to see my video blog on sensory input to understand why that's important.

Jaw clenching and tooth grinding peaks at around 2am, 4am then 6am and these tend to be the times migraieurs wake up. When people state that 'oversleeping' triggers their migraines, what is ACTUALLY happening is that it's an extra hour or two of jaw clenching and tooth grinding i.e. additional sensory overload of the brain

As Tee mentioned, keep a very accurate log of what is going on! I'm hoping to get an app available for this very soon and I want it to be free! Look for patterns, patterns and more patterns

Hi Sue - Just wondering how your daughter is getting on?