Migraines and visual disturbances anyone?

[Idobelieveinfairies]

Just need some advice from anyone in the know really.

DS(9) was diagnosed with abdominal migraines about 18 mths ago. He was put on medication (sanomigraine) as he was missing so much school because of the attacks, this wasn't meant to be long term.

He has been off this medication now for about 3 months, gradually he is getting more and more attacks....not as bad as previous, he will still go pale and clamy-but no actual sickness happens like it used to. He then has to sleep it off-sometimes an hour, other times 3 hours.

He has also complained of actual headaches-rather than just the tummy aches, i am guessing this is as he is getting older? He has mentioned having 'funny eyes' too. i am guessing visual disturbances that are linked with migraines? he is saying they are blurry and dizzy.

We are coping without the medication (just) but wanted to know if these visual disturbnces will get any worse? They seem to happen the day before he has an actual migrane Do you think i should take him back to the doctor? Or is it something that he will have to get used to?

He has an MRI when he was first diagnosed and it was clear.

Thanks!

I get both focal migraines and 'classic' migraines. I have suffered from them since I was about 16/17. They are getting steadily worse, in my case.

Sometimes I can have an attack with pain and nausea but no visual issues. Sometimes I can just get the visual problems (total loss of peripheral vision, loss of depth perception, blind spots, blurred vision) with no pain at all, this is a focal migraine. If I'm really lucky () then I get them both together.

Migraine is a horrible affliction and generally pretty misunderstood by those who do not have direct experience of it ("oh it's a bad headche"). GP's are often not terribly well informed about them either. If you felt it was appropriate you could request that your son is referred to a Cerebrovascular consultant who specialises in migraines.

your poor DS -

there was a thread not so long ago and there is some good advice

Right...will take him back to the g.p then, and he should refer DS back to the peadiatrician.

Oh goodness was hoping he was over the worst and might soon outgrow

Migraines are in my side of the family big time. My mum and 4 sisters all suffered from them (some into adulthood), but theirs were more numbing of areas e.g tongue. DD1 used to get them but she has outgrown them-she never got the eye thing though.

Me and my dad are the lucky ones and have never had them.

for you NomDePlume...it is horrid.

I've had migraines as you described from age 6; I feel for your poor ds. I fear its smoething (just I did) that he will have to learn to manage himself. I have awful memories of me throwing up in the school playground/staff room/sick bay, being able to 'see' only half of everything/a pain in my head that was so painful...awful, awful, awful. The only thing that gets me thru' one nowadays (much less now) is to take a strong sleeping tablet, which of course is assuming I'm in a position to crash out - very rarely. Good luck x

I get just visual disturbances with my migraines but I don't feel I have enough of them to take special medication.

it sounds to me like your ds's meds aren't working and I would definitely take him back - do you know if the paed you saw has a special interest in headache/migraine? there are a few dr's around the country who specialise.

It is horrible, it is excitement that brings his on...a friend came round to play on saturday afternoon...he was obviously excited...an hour after his friend arrived he lost his colour and felt nauseous...he fell asleep for about 2 hours, when he woke he was fine and carried on. Luckily his friend played with the brothers. So horrible that anyhting he will get excited about will end up with him getting ill.

whereabouts do you live idobelieveinfairies?

ibundle-i live on an island so we have the 1 hospital. When he was first refered we thought his atacks were down to constipation (he was constipated) but when we got all that sorted these attacks continued. It was me that done research and found the symptoms were exactly like abdominal migraines. I asked the peadiatricin about it and with the family history he agreed it was this.

They took him off meds as they didn't want him on them long term. I don't know why?

It's just that they seem to be more headachey rather than tummy aches now....so i am guessing they will get worse again..just in a differnt way.

jersey

have you kept a diary of food/activities/sleep etc for him, alongside how many migraines/exact symptoms?

Yes i did in the beginning, he eats very limited foods tbh...very very fussy, he eats bland things. plain pasta and cheerios mostly, apples, bananas, melon..a few other fruits-no veg and no meat. only brown bread.

He has seen the dietician, had an mri, definately down to excitement. He can't sleep over at friends houses as he will be ill...guaranteed!

It's the visual side that seems to be happening now that i wasn't sure about. Do people actually pass out with this do you know?

iBundle makes a good point about the diary. I know for certain that white crumbly cheese and cream will trigger an attack, as will greater than normal levels of stress e.g when dh was made redundant last week .

I've never heard of people passing out, but the range of symptoms for migraine is pretty wide.

Did he have an ECG too when he went for tests? and full bloods?

He had full bloods but no ECG.

Do you know why children aren't meant to be on medication long term???

Wondering what side-effects there are to it. Would like to decide whether i want him back on the meds before i go.

He was on the sanomigraine-pitizofen one.