Hello from mum of boy with Acute Confusional Migraine

Hello,

I am so glad to have found this forum. I am a mum of two and full-time carer to my son who suffers from Acute Confusional Migraine. He was diagnosed in December 2010 but has suffered from it for a number of years - a difficult path without diagnosis. At its peak he had up to fifty episodes a week but these have decreased since starting medication, but are still present. Unfortunately he has been absent from school since November of last year on account of the migraines but is slowly returning to school with one-to-one support for two hours a week, as his attacks allow.

I would be very interested to hear from anybody else who suffers from Acute Confusional Migraine, or anyone who cares for an ACM sufferer. Any support would be gratefully received,

thanks,

Maureen

Hello Maureen

I am so so sorry to read your post - having children with migraine and a rare one at that - is no fun at all.

I have heard of this type of migraine, but you are the first person i have met who has experience of it - i do hope someone on here will be able to help more.

How old is your son? My son is now 10 and he suffers from abdominal migraine but with aura (had his first at 5) - I did do a bit of research into childhood migraine and found that most kids grow out of the childhood types, but go on to develop classical or common migraine.

Is there anything that trigger this? Although if I remember right this type can be linked to blood flow?

Tee

Hello Tee,

thank you for your reply. No it's not easy for my son with his migraines (it looks like a seizure, he falls to the ground, and thrashes around and screams during the attack and cannot hear you nor can he remember the event). Caring for him is a wee bit of a challenge too, the migraines come on with little warning generally,although he can have an aura of voice-hearing or visual hallucinations. The migraines can be triggered, amongst many things, by strip lighting, noise, crowds....needless to say the supermarket is a big trigger!

The neurologist (a five hour round trip....) is optimistic that my son will grow out of the ACM, but in the meantime, like many young sufferers it is having a huge impact on his life at a formative time(he's 12). The migraines are quite limiting for my son just now as they are triggered by many quite everyday things and situations-hunger,boredom,exercise, high-pitched sounds, sudden loud noises, tiredness, coming down with the 'flu...the list goes on.

As my son also has Asperger's Syndrome, many of the stresses associated with Asperger's are the triggers for the migraine...it is a daily balancing act!

As you say in your post Tee, I think it is to do with the blood flow. He can sometimes feel the migraine coming on in 'waves'. He also faints intermittently which are not part of the migraine itself but according to the Neurologist is common in connection with this type of migraine - particularly when brushing teeth of all things or going to the loo. So he has the odd bruise from falling to the floor.

It's been a l-o-n-g and difficult journey to get a diagnosis. He's been having symptoms since he was 6 and a half and we have been in and out of so many doctor's/consultant's rooms over the years, not all of them satisfactory experiences...on account of the voice-hearing presentation of the aura, many are quick to assign a psychiatric reason, which has brought with it much stigma. It has been a real test of inner strength and resource. It has taken five and a half years -and a lot of dogged persisitence - for a diagnosis.

BIG HUGS Sweetie - you are doing a wonderful job.

The stigma associated with illness is a bug bear of mine grrrrr But at least he has a diagnosis now Hearing things and seeing things are quite a common migraine aura. (As a side point what you describe sounds a lot like Basilar artery migraine too, i have a friend who gets them just by lowering her head - which made me think about the fainting and the teeth brushing - it might not be the brushing but the way he is holding his head / neck - just a thought)

I totally understand his stress of very day stuff being a trigger - My migraines are triggered by over stimuli - so the supermarket is a no no for me too. (thankfully they deliver or we would starve lol) Too much sound, smell, bright lights, people, action, or even too much thinking and pow i am gone.

Hang in there - I do admire your strength and i hope with all my heart he does grow out of this soon.

tee

Oh Tee,

that's sweet of you, thank you!

Interesting about your friend with the Basilar artery migraine, thanks for that, I'll investigate further when I next see the Neurologist.

I'm sorry to hear you are living with migraine too - we live in a vastly over-stimulated world...it must be very difficult avoiding triggers, there's nowhere to hide these days!

Thanks for your kind words

Maureen

Thankfully I live in a very peaceful place by the sea I have an amazing husband who takes over the looking of the kids (I have 4) and i go and hid in bed

Hi Maureen welcome on board.

I'm glad you found the forum and we will all do our best to support you. I have worked with adults with Aspergers in the past so when you mentioned the triggers I thought, blimey that stimuli would be bad enough for a person with Aspergers alone never mind managing these migraines on top. It must be so disorientating for your son.

I think you are doing an amazing job and I hate to think how hard you have battled to get the correct diagnosis. I believe many of us on here were sent 'down the mental illness' route regarding our odd sounding symptoms at some stage or another. I include myself in that.

I have never heard of that particular type of migraine before but as with all of them it sounds horrendous and to think of a child trying to make sense of it..well..I am at a loss of how to put it into words without sounding trite or patronizing. Excuse my inadequacies.

Please keep in touch and if you need to vent please do.

Kindest regards
Jane
x

Dear Jane,

thanks for your message, it is so nice to have support after the wasteland we've been in....I've done a lot of venting up until now, most of it behind closed doors and directed at the medical profession! (Happily the Neurologist seems to have a handle on the ACM and is supportive).

My son is an amazing boy, it is very hard for him coping with the ACM, but he is very accepting of other people's differences and therefore accepts his own - having the correct diagnosis has made a huge difference to him. Suddenly with a diagnosis, we've left the land of schizophrenia, pseudopsychosis, brain tumor, personality disorder and bipolar disorder in an instant, which in the absence of a diagnosis we'd inhabited for nearly two years. It is such a relief - although a desperately painful and unpleasant reality - that it is ACM and that he will grow out of it.

Thanks for your support Jane,

best wishes

Maureen

You're welcome..I had a lengthy journey there and back down the bi polar route too. Bipolar terrible illness but it's equally unpleasant having a misdiagnosis. Plus in a lot of cases the more you protest the more ill they think you are.

Your son sounds a wonderful young man and I am sure it is because you take great pains to explain everything to him. I am so relieved you have found a good neuro to guide you through the maze....good professional help is worth it's weight in gold. You must have felt a great weight lifting when he explained your sons symptoms to you and it all started to make sense.

I am pleased you are here as the thought of your lone voice at home when you are up against it must be tough on your shredded nerves.

Feel free to let of steam and you can always PM me if you want a more private chat etc. I have twin boys with a rare form of respiratory problem and I can relate in some way to battling to get the care they need at the right time. I know it's not the same as what you have to deal with but I understand some of the frustrations you are probably facing.

Take care
Jane
xxx