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Other migraine variants. UK Paediatric recommedations


#1

I have a migraine variant balance disorder - dizzy/ear ringing etc a lot for 22 years now. My 16 year old son has started displaying migraine variant symptoms - but not dizziness or headache (yet). His ears started ringing about 9 months ago and he was seen last month by ENT who said it was common in teenagers (although it rang alarm bells for me). He recently had 2 suspected ocular migraines and severe fatigue. Last week he “zoned out,” felt time had skipped without him whilst travelling in the car and became very fatigued after. It really upset and scared him the GP was a bit stumped. Last night he went to A&E as he had “zoned out” twice and didn’t know if he had passed out or fallen asleep, was very confused, fatigued and looked like he wouldcollapse. All his bloods, blood pressure, ECG were normal. The doctor suggested we ask the GP to refer him to neurology but the likely wait is 30 weeks to a year so we’d like to have him seen sooner. He is at that awkward age where most neurologists won’t see him until he is 18. Does anyone have experience of a good paediatric neurologist in the SE/London? Or suggest what is wrong - I suspect a silent type of migraine (or perhaps petit mal?)

He is starting 6th form college this week (on his own) and is terrified it will happen there.


#2

The daughter of a friend has had this (around same age) and she was diagnosed with migraines. She is taking a preventive, I can ask her which one.


#3

Thanks Dizzy. I thought someone might have heard of symptoms like this. I think it’s a migraine variant but want to get it diagnosed 9and treated) so that my son is less anxious/stressed. I feel gutted as I’ve passed on the genetic marker and was always worried my daughters would get migraines - hadn’t expected it in my son or at so young an age.


#4

So sorry to hear of your son’s predicament. There is/was some understanding in UK whereby all patients had to be seen with a specific time period. I thought it was 16 or 18 weeks. I’m unaware this has been changed. Might be worth enquiring at your local Citizens Advice Bureau or maybe your Health Centre can advise. Thirty weeks to a year is ridiculous time for anybody to have to wait. If he cannot be seen within alot less time than that, if I were you, I’d first ring Dr Surenthiran’s office and explain your situation to them. You-may need to go to see him privately initially but check out first because of the boy’s age. If he cannot see him I would imagine his office would be able to point you towards somebody who can deal with a person of his age within a reasonable timescale and travelling distance. Helen


#5

It was the A&E doctor that advised us that was the wait at present. I checked out some local private neurologists this morning who specialise in migraine but their websites say patients need to be 18+. I think the 16-18 zone is a bit difficult with services. I have recently seen Dr. S but his speciality is balance/tinnitus etc so I wasn’t sure this would really be his area but I can phone his secretary and speak to her on Monday. My son had to wait 5 months from referral for his recent ENT appointment and it took multiple GP visits over a few months to presuade the GP to refer him - so he had the ringing in both ears for 8 months by then.

I’d like him seen soon as Dr.S said that if someone gets treatment early it’s so much easier.