Hi from Edinburgh

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Hi from Edinburgh

Post by migrainecarer on Thu Nov 24, 2011 8:23 am

Hi All

I have been reading the forum messages and it seems like a pretty supportive group you have so I thought I would join in!!

I do not suffer from Migraines but my 14 year old teenage daughter does. She started getting severe migraines weekly lasting from roughly 52 to 84 hours per week just over 13 weeks ago.
I have to say it has been utter hell our lives have been transformed in such a short time. My daughter did get the odd migraine before this but they averaged about two a year and lasted for a day and were managed easily with over the counter painkillers. To go from that to migraines that last from 3 to 4 days per week is horrific. She cannot function in any way has to be in a darkened room and if she even moves her head or talks she is in extreme pain then when the migraine stops she is exhausted. I really did not realise people suffered like this. My mother had migraines but again nothing like the intensity my child has experienced lately.
Then there is the medication!! Her gp and pediatrician prescribed the maximum adult dose of preventatives 4.5mg prizotifen,but I reduced it to 3mg as she was so exhausted and spaced out on it, zomig at the start of migraine, migraleve x 8 tabs maximum in 24 hr period, and diclofenac x 3 tabs per 24hr period throughout the migraine. I feel like I'm turning her into a junkie, two years ago she was on calpol! I must admit to struggling with the medication.
Anyway on a more positive note she has had a ct scan and mri all of which came back as normal, she has been referred to a migraine clinic in glasgow (after a fight) which has a 10 week waiting list so in the interim I am taking her to the London migraine clinic as I want an external perspective on everything including meds.
I also wanted to say my daughter is amazing I'm so proud of her and how she is coping with it all ( sad parent!).
I was wondering if anybody on the forum has been to the London migraine clinic? Any parents out there going through something similar ?

thanks Susan

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Re: Hi from Edinburgh

Post by Tee on Fri Nov 25, 2011 6:23 am

Hi Susan and welcome Smile

I a sorry to read about your daughter - to watch your kids have these is so hard Sad

Couple of questions - do you know which type of migraine she has?
And have you been able to work out any of the triggers? - I am assuming due to her age - there maybe a hormone link??? If so the London Migraine Clinic is a fab start - there is a doctor there called Ann McGregor and whilst I have never met her, I know she has a great reputation in treating hormone migraine - she also does a lot of research work - so is always pushing for answers.

Migraines often start or get worse during early teens and then settle - which I hope happens for your daughter.

The meds do sound a bit heavy.... but that is one to talk to the doctors about. There are a lot of possibilities re meds out there - have a look on the other threads - but please read the side effects on anything which is suggested, some of them can have horrid side effects. Also have a look at some of the alternative treatments, they might be worth a go - stress can be a big trigger, so its worth seeing if there is anything she is worried about....

Do you keep a migraine diary - it can help with patterns and aid to help find the triggers. There are examples here:

http://migrainetalk.forumotion.co.uk/t223-migraine-diaries

The doctors also love to see these - so do take it with you when you see them.

This list might also help with working out triggers:

http://migrainetalk.forumotion.co.uk/t330-types-of-triggers

Do let us know how you get on at the clinic.

Tee

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Re: Hi from Edinburgh

Post by migrainecarer on Fri Nov 25, 2011 8:26 pm

Hi Tee

thanks for your reply, my daughter has not been diagnosed with a specific type of migraine yet. Her gp and pediatrician have not mentioned this perhaps when she goes to the migraine clinic they wil look into what type she gets. She gets squiggly lines and flashing lights first, has imbalance, then feels sick, gets pain above the right eye which gradually spreads and is extremely sensitive to light and sound. She didnt have anything that she was excessively worried about before the migraines started but as the weeks are going on she is getting stressed about the amount of time she is missing school, In scotland kids sit there standard grades ( o levels)a year earlier than in England so this is an important year for her. Also peoples perception of what migraines are get to her such as teachers, peers etc, although in fairness to the school they are taking a learning curve in this area like myself.
In regards to triggers I think I have it sussed then she gets a migraine again and I feel like I am back to square one. What i think her triggers are is lack of sleep, missing breakfast, possibly not eating enough at lunch at school. The kids in her group tend to skip or eat rubbish and also If she is upset or worried about something. In regards to what she eats I cannot find a link yet.
She doesnt eat meat, drink fizzy juice or coffee and is not keen on chocolate. The only thing i can think of is perhaps something is missing from her diet? I do keep a migraine diary only thing I have noticed is that she wakes up with migraines a lot and they appear to start during the night I dont know if that is common or not. when she does wake up it is a full blown migraine no aura I'm assuming that occurs whilst she is asleep? I think like you tee there may be a hormone link as migraines became severe 6 months after her periods started and she is going through puberty at the moment.
She has her appt on Tuesday at the London Migraine Clinic will update on my return.
I hope it is a good day for you Smile

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Re: Hi from Edinburgh

Post by Tee on Fri Nov 25, 2011 8:58 pm

Oh hugs hun - its always a puzzle and so hard to work out as everyone is different............. however, sounds like she has classic migraine as she is getting the aura - one to ask the docs about.

As for triggers, puberty could well kick this off on its own - but the stress of the exams will not be helping, and as you have already worked out - with migs you need a regular sleep pattern, regular food, lots of water..... if she has not had it yet a blood test to check levels would be a good idea and so would a mineral test - not easy to get and controversial - BUT if her diet is bad, it will, as you say be more like something she is missing - and minerals like iron, iodine, magnesium, zinc etc need to be balanced - but don't rush into adding them - you need to read up first and ask the doctors first - there is loads of info under the alternative thread.

With the sleep trigger - hard one to crack - its quite common but the reason is not known, some think its REM sleep - but 3 things pop to mind - does she grind her teeth at night? You can get a guard you wear to help stop this? Also does she eat before bed? If not might be worth trying that - as its easy to test - but low blood sugar can be a trigger. 3rd look at her bed - I had problems with the chemicals, ie in the pillow and washing powder - its worth testing other pillows, or washing powder, (I have found non bio fairy the best) the way her head lays is also worth a look at - 30 degree incline is suppose to be the best on a natural pillow - I now use a water pillow and have found if I am lower its better - everyone is different - so its trail and error.

Triggers are so damn hard to work out - and you learn more all the time - I reacted yesterday to some wood - my son was building a model and within 20 mins - I had the swollen tongue...... 40 yrs and still adding triggers to the list.............

Hang in there - small steps - make sure you write all your questions down before you seethe doctor Wink

Good luck

tee


PS There has just been some guidelines for schools published I will try and find them for you - its worth asking them to put some things in place to help her - ie let her have water on her desk, not to have her directly under those horrid lights, or close to a blind in summer, have a quite place to go to if needed, eat snacks or have sugar sweets to nibble on, extension on homework.....

PPS - Have a read of this - it might help you spot when one is coming....http://migrainetalk.forumotion.co.uk/t100-potential-migraine-phases-and-symptoms - It might be worth sharing this with the school too Smile

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Re: Hi from Edinburgh

Post by Sarah on Fri Nov 25, 2011 10:30 pm

Hi and welcome.

I developed a problem with my migraines at the age of 16, and I often wonder how my poor mum coped. We did troop along to the London Migraine Clinic, which turned out to be an utterly pointless appointment (all I came away with was advice to go to bed a bit earlier), but bear in mind that was absolutely years ago, so others will hopefully have a more up to date experience.
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Re: Hi from Edinburgh

Post by migrainecarer on Fri Nov 25, 2011 10:45 pm

Hi Tee

Interesting about the blood tests you mentioned will do some research and mention to the migraine clinic and her pediatrician about the possibility of getting it checked out. It certainly doesnt do any harm and if it gives us more information to manage her migraines all to the good. She wears a retainer at night as she got her braces off a few months ago so I think if she was grinding her teeth this would help but again has an appt with the orthodontist in December will mention it to him.
Tee its not that her diet is bad its just I cannot monitor it when she is at school, she eats a really good diet at home a lot better than mine lol, full of salad and vegies,but because she doesnt eat meat your never sure if she is getting everything she needs.
I think its difficult for teenagers because although intelectually she is bright on an emotional level she wants to be the same as her friends and the reality is she cant be.
I did read the new policy document and attached guidlines which are good but dont go far enough. Ive found with a lot of information out there in regards to migraines and children (probably the same for adults)that they tend to be geared towards the majority within the migraine spectrum and do not fit the needs of those outwith that. Due to the severity and longitude of her migraine attacks she doesnt fit into the "norm" for kids migraines if you know what I mean!
Thanks for all the tips they have been really helpful as has the links, I hadn't even thought about mattresses, pillows etc Hubby will be pleased when I tell him we should perhaps invest in a new mattress!!!
Sarah thanks for your feedback for the migraine clinic hopefully it has improved since then if not the search goes on!!

susan

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Re: Hi from Edinburgh

Post by Sarah on Fri Nov 25, 2011 10:50 pm

It's interesting you should say that she doesn't eat meat, as I've been doing a lot of reading recently on vegetarian diets and deficiencies. The main ones would be zinc and vitamin B12. A vegetarian diet is usually high in copper and low in zinc, and vitamin B12 is only found in animal produce (with meat being the best source).

Vitamin B12 is best taken sublingually, ie under the tongue, so it is best absorbed. Zinc is best taken with food, away from any other minerals. Magnesium is another good one, but should be taken away from zinc.
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Re: Hi from Edinburgh

Post by migrainecarer on Sat Nov 26, 2011 12:50 am

Hi Sara

I know her b12 is fine as she was tested for this just last week. Having a deficiency in this seems to run on my hubbys side of the family tree so docs tested for this to be on the safe side. In regards to the others I havent got a clue will mention to her pediatrician when I see him. Sara if you dont mind me asking how did you cope as a teenager and how did you find school and keeping up with school work.

thanks Susan

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Re: Hi from Edinburgh

Post by Sarah on Sat Nov 26, 2011 10:56 am

The thing with vitamin b12 is that the blood test only shows up pernicious anaemia, ie dangerous levels. She could still be on the low side, even without anything showing up in the blood test.

What happened with me was that I suddenly developed a daily migraine after a bad cold just after my mock GCSEs. I went in to school when I could, and struggled through my GCSEs. Then I started the 6th form and suddenly felt better for a few months, only for them to return.

I missed a lot of school, then suddenly again they improved for a few years, until my final year of university. I remember when I came to revise my A levels (by which time they had really improved), there were whole chunks that I couldn't revise, as I'd missed far too much and had too many gaps!

So yes, your daughter really does have my sympathy. It's very hard to make both friends and teachers really understand. I remember I used to have real trouble with Mondays, for some reason, and I once had a teacher say 'whatever are you doing at the weekend to have such a bad migraine every Monday?' That really annoyed me, as you can imagine!
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Re: Hi from Edinburgh

Post by migrainecarer on Sat Nov 26, 2011 9:02 pm

Hi Sara
My goodness how do you know if you are low on b12 if the blood test doesn't show this?

Interesting about the Mondays and migraines my daughter is the same. I put it down to different sleep patterns at weekends then the change to school sleep patterns i.e. having to get up early and perhaps worried about first day at school, particularily if she has been off with a migraine the previous week.

Its reassuring that although it must have been so difficult completing your education you managed to get through it succesfully.
I must admit I do worry about this aspect for my daughter. Her potential is being blighted by these migraines.

My daughter has experienced ridiculous comments like yours from certain teachers its bad enough kids having to cope with migraines and worries about their education without having to deal with that, it makes me so furious as a parent.

Anyway thanks for your comments I will pass on your experiences to my daughter it will help her to not feel so isolated and alone in dealing with this and that others have gone through the same Smile

susan

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Re: Hi from Edinburgh

Post by Sarah on Sat Nov 26, 2011 11:38 pm

It's a bit of a trial and error thing with the vitamin B12 if the test doesn't show up pernicious anaemia, unfortunately. But, it's not one of the vitamins you have to be extra careful about supplementing, for fear of overdose, luckily. I have been taking vitamin B12 sublingually for about 3 months now, which hasn't affected my migraines, but I have had some improvements in other symptoms, which have made me think that I must have been on the low side. Who knows, maybe eventually the migraines will improve?! Let me know if you need further information about all this, as I'm very happy to help.

I think you're probably right about the Monday migraines. I have never been a morning person, so I think when I was at school waking up early on a Monday knocked me for six after sleeping differently at the weekend. Try as I might, I could never force myself to get up early at the weekend, and I still can't!

I really hope your daughter's school is being sympathetic, although there is obviously only so much they can do. When it came to revision, what I tried to do was look at the areas where I'd been feeling better, so my attendance had been better, and try to revise those thoroughly, rather than even attempting to revise the areas where I'd hardly been there. It worked for me, much as I'd have preferred to have a greater range of questions I could answer in the exams!
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Re: Hi from Edinburgh

Post by migrainecarer on Fri Dec 02, 2011 9:54 pm

Hi just a quick update, went to london migraine clinic and visit went well. They recommended changing some of her meds and helped us get a better understanding on triggers. How they have a cumalitive effect and that if you go up a stage towards your migraine threshold with a trigger you cannot go back down so each succesive trigger leads to the enivitable migraine.
I know that seems really simplistic but it made sense of the difficulty I had understanding my daughters triggers.
They also explained that although my daughter gets squiggly lines at the start of a migraine because she gets pain with them she does not have migraine with aura but actually migraine without aura. Another learning curve!
I suppose I felt we can possibly get a handle on some of the triggers and improve the situation.

On another completely different note her pediatrician in Edinburgh who has been ruling out possible physical things that are causing the migraines has mentioned a few times about doing a lumbar puncture. It seems very extreme and I cannot get a handle on why he would do this. Has other migraine sufferers had this done is it normal practise in this situation?
Sara your comments have been very reasuring for my daughter I just wanted to thank you.
susan

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Re: Hi from Edinburgh

Post by Tee on Fri Dec 02, 2011 11:49 pm

Hi there

Glad the visit was useful- trigger finding is hard work - but stick with it - some will be obvious - other not - but as you eliminate obvious ones the others start to stand out - and they still pop up with me 20 years on - discovered I was reacting to a wooden model my son was making only last week - bless him - even bought one with no glue and still I went down Sad

I am confused a little with the with out aura bit though, is that the only aura she gets? Ie no numbness, loss of words, confusion - there are loads. If I am honest I have never heard of anyone who gets squiggles to get a without aura diagnosis...???

Re the lumber punch - that is quite normal - a lot of migrainers have had this done and are often down to rule out other things and you are quite right to question him why as its not a pleasant thing to go through and of course there are risks - it would be ask him what exactly he is looking for (maybe when she is not there) and then make a judgement.

I am pleased you have a plan in place - good luck with the meds and trigger xx

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Re: Hi from Edinburgh

Post by migrainecarer on Sat Dec 03, 2011 1:05 am

Hi Tee

Nope she doesnt get any of the other aura type symptoms you mention just the squiggly lines which apparently start of far apart then get closer and closer till she feels she might faint as she can barely see anything else. This also affects her balance and she has a dry mouth but not aware of anything else. I must admit I was surprised too at the no aura diagnosis but apparently if you get pain at the same time it is not aura. It has to be aura first then pain. Thanks for the info re lumbar puncture glad to know it is common. Saying that I'm certainly not rushing in to anything your spot on tee the reason I asked was that my daughter was present so did not want to explore to much with her listening as she was freeked by it when he mentioned it. If poss will try and catch him on the phone. thanks

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Re: Hi from Edinburgh

Post by Sarah on Sat Dec 03, 2011 3:05 am

Ohh how annoying - I posted then lost it!

What I put was that I am sceptical and confused about the aura thing. I mostly get no-aura migraines, but I also get aura-only and aura plus pain migraines. The aura I get virtually blinds me, plus I get confusion, can't think of words etc. But when I get the pain, it happens virtually at the same time as the aura. If I was told that meant I didn't have an aura I'd think it was a load of rubbish, to be honest.

Am really glad to be of help to your daughter, and I hope the change of meds helps. x
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