Teenage daily migraines : First of all... - National Migraine...

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Teenage daily migraines

Angebombange72 profile image
27 Replies

First of all, sorry about my long-winded message.

My 14 year old daughter has been getting daily “migraine-like” headaches that last from the moment she wakes up to the moment she goes to sleep. (This is the description the neurologist gives). She has had them now for 3 months & is unable to participate in full-time school, sports, etc.

Prior to this, very sporty and intelligent girl. Although, not without some anxiety and trouble with friends and self esteem issues. But this normal for a lot of teenage girls right?

We have trialled many migraine tablets (triptans, periactin, etc, etc) aspirin, nuerofen, paracetamol, Pizotifen (Sandomigran), Endep (Amitriptyline). We are getting to point that we are running out of options because of her age, as she can’t have botex or some medications are not suitable/approved for children.

She ended up in hospital a couple of weeks ago with 9/10 pain. Tried largactil infusion, local injections into the base of the skull, etc.

We have also tried acupuncture, heat packs, cold packs, Kinesologist (1 session only). Just started Physio too.

What I want to know, is there anything else that other people have found that works? Medication or natural? I am getting desperate and my daughter is going crazy and also getting depressed.

Thanks in advance and much love to all out there that are in the same situation and suffering like my daughter xx

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Angebombange72
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27 Replies
Onthemove1971 profile image
Onthemove1971

Have the doctors done a sleep study on her? Sometimes when you wake up in the morning with a migraine is can be related to not sleeping.

Have she seen a "migraine specialist" NOT a Neurologist?

Also.. what preventative is she taking? This is where I have had the best luck..

I take Magnesium glycinate 3x ( 400mg) daily and Feverfew ( 2x).

What dose triptans is she taking and are they only in pill form? I take both pill and injection ( it's like an Epi-pen and my Imitrix is a higher dose.

When I have gone into the ER, my Neurologist has a special formula they use. A cocktail, anti-inflammatory, anti-nausea ( even when I am not going to throw up) caffeine and dolotted. These are all given IV with a ton of fluid. I can usually walk away about a 3 out of 9 or 10.

One last resource which will help a ton! The Podcast- "Heads up", this has changed my life..it is put on by 3 UK migraine specialist.

Hope some of this helps. Let me know if you want me to give you step by step what I dose to help stop my migraines.

Angebombange72 profile image
Angebombange72 in reply to Onthemove1971

Thanks so much for your reply. I’m working on getting a referral to see specialist at a children’s headache clinic, so unfortunately she hasn’t seen anyone yet other than the neurologist & a paediatrician. The paediatrician was supposed to refer while she was in hospital and almost 4 weeks later, nothing! Not impressed. Going to GP tomorrow to get it sorted. From there, I’m hoping they will have more ideas to help. Haven’t done a sleep study yet. I will talk to the doctors about that.

She’s tried many different triptans, including an infusion in hospital. Didn’t work.

As she’s still classed as a child, she can only have certain medications. They tried heaps of different things while she was in hospital and the best she got was 5/10 pain.

Will definitely check out the podcast. Thanks again! X

Gambit62 profile image
Gambit62

this is a link to the headsup podcasts mentioned by Onthemove1971nationalmigrainecentre.org....

Do the headaches seem to have any relation to hormoal changes - 14 sounds as if they may.

If her diet excludes animal products it would also be a good idea to check on what is happening with B12 levels and start introducing a B12 supplement in case that is contributing. My migraines have a hormonal element and are triggered by changes in hormone levels rather than just being triggered by changes in a particular hormone. B12 deficiency (and folate deficiency) are also associated with anxiety.

I find some aromas can help - particularly perpermint, lavendar, citrus and ylang ylang, and there are some smells that I know to avoid like the plague.

You may be able to self refer to the national migraine centre and see if they can offer any suggestions.

Angebombange72 profile image
Angebombange72 in reply to Gambit62

Thanks for the link, we will check it out. The Doctors don’t seem to think it’s hormonal. Everyone we see has a different opinion, so frustrating.

She doesn’t eat a lot of red meat, but we do eat meat. She going for a blood test this week to check these levels.

We are in Australia. Can I still self refer to national migraine centre do you think?

Have tried lavender in a diffuser but didn’t seem to help much and bathe in magnesium salt with lavender too.

Thanks so much for your help X

Gambit62 profile image
Gambit62 in reply to Angebombange72

It may be worth contacting them - they seem to have a network of contacts around the world so might be able to suggest something similar in Australia.I hope that the blood tests show up something

Onthemove1971 profile image
Onthemove1971 in reply to Gambit62

Yes I agree about sense. I have a roll on peppermint so when I feel it start I take deep breaths and it helps a lot.

Cat00 profile image
Cat00

I agree with others that hormones are very likely involved with the onset being 14. I don't know if she has already reached puberty so obviously if she hasn't she wouldn't be able to go on any kind of hormone pill, but equally if she hasn't reached puberty things may get better when she does. As sometimes menopause can improve things for people with chronic migraines later in life.

I also agree with Onthemove that seeing a migraine specialist would be better than neurologist and also going to a pain management clinic too but not instead of a migraine specialist. I also think it would be best if she could get some therapy, I was in chronic pain at a young age and it messes with the construction of your identity later on. Talking therapies are hard to get without a lot of pushing, you might need to make a nuisance of yourself with your GP's, keep asking and write lots of letters, doctors can't ignore letters and they have to go in your records whereas they are very good a "forgetting" things that have been said. Group therapy is also very helpful and if she can't get it through the NHS there are charities she might be able to use and of there is private of course.

Angebombange72 profile image
Angebombange72 in reply to Cat00

Thanks for your reply Cat00. She started menstrating at 10.5 years old. I will be pushing for a referral to the children’s headache clinic in Brisbane (QCH) and from there, they can do more referrals.

She sees a psychologist at the moment and I encourage her to talk to me and friends.

Why particular therapies helped you in particular? X

Cat00 profile image
Cat00 in reply to Angebombange72

To be honest nothing really helped me until I got botox and then very recently the CGRP injection. I started having migraines when I was 5 but they didn't become chronic until I hit puberty but we hit puberty very late in my family so I was almost 15 I think. I tried lots of preventatives (about 13) first bc Botox didn't exist as a treatment then. I also take a combined pill but I don't come off it so I don't get periods, this was in part bc my hormonal migraines are the worst and don't respond to triptans. Although we did try this before when I was I my 20s but it didn't help then fortunately it does now.

Another suggestion is to go back to previous preventatives and go on higher doses as doctors often don't go high enough for them to be effective for intractable migraines. I had accupuncture and osteopaths too but they didn't help.

It's good she's having some therapy. I've have never actually met anyone with chronic migraines, and the doctors didn't believe me, or my school where I boarded, if it wasn't for this forum I would still be thinking I was the only one 30 years later. Knowing people on here has helped me fight more effectively and if it wasn't for my mother I don't think I'd still be alive, it's so important someone believes you. She sounds like she has a good mum fighting for her!

Chleo11 profile image
Chleo11

Hello. I'm sorry to hear about the pain your daughter is going through. I agree with what was said and I believe that there may be an hormonal aspect to her migraines. Unfortunately, you won't find many doctors who will agree with this. Hormones is a dirty word for many doctors especially headache specialists. Your daughter may have some issues at school and talking to someone may help. 14 is not always an easy time for many teenagers. Have you checked the Australian migraine organisation website? headacheaustralia.org.au/

Right now, and I mean TODAY there is an interview in the Migraine World summit about integrative approaches to migraines. The interview is available for free just for a few more hours I believe: migraineworldsummit.com/ You can register for free. You can buy a pass though to listen to all the interviews and have access to all the resources.

It is probably the best thing around for migraineurs.

I wish you and your daughter all the best.

Angebombange72 profile image
Angebombange72 in reply to Chleo11

Hi Chleo11. Thank-you. She had issues at school last year, but she’s barely been able to attend school to have any issues this year.

I haven’t checked out that website, but I will and I will listen to the interviews too. Thanks so much x

White10 profile image
White10

Definitely try b2 and magnesium. (Magnesium orally is best (whichever she can tolerate a high does - less evidence on baths) This is hugely recommended and has scientific data. I take 600mg which was recommended by a migraine specialist and by many others. I also take 400mg of b2 which is also very helpful. These are not quick fixes but science say lessens the severity and frequency.I have recently looked at my genes which I got tested and learned a few things going along but I would seriously consider given her a high quality vitamin (especially with all the b complex to them). To support her hormones. You can buy sprays (I use some of then betteryou ones which go in the mouth ) if she’s not good at pills or has digestion issues. I can’t stress enough about the B vits. Especially through her changes. (Maybe look at the methylated ones as they are good).

I would also recommend like the others to see a migraine specialist. They will be far more beneficial.

Maybe also a cefaly device?! I have found this very helpful.

Hope you get some help soon

Angebombange72 profile image
Angebombange72 in reply to White10

Thanks, I am going to buy vitamins today, as a previous GP we saw has recommended them, particularly vitamin B’s. I looked into the cefaly device, however it is recommended for 18+, so not keen to do this to a young brain. X

CINDY471 profile image
CINDY471

Hi there, I'd have her take a food ae sensitivity test (not food allergy test).

I suffered from chronic migraines for 27 years and my daughter started getting them at age 11.

We were both told they were hereditary. But, 2 years ago, I opted to give up dairy for a month and 11 days later, my 27 year battle finally ended.

6 months later, I had pasta and got another migraine. Turns out I was sensitive to both dairy and glyphosate (roundup). US farmers are allowed to saturate their fields with glyphosate to help speed the drying cycle.

Once I've given up both, I've been 100% migraine free.

My daughter has just given up all forms of dairy and she has also been migraine free.

Since going dairy free, I've also stopped taking all meds (and I was on daily meds, monthly meds and even botox).

So, start with a food sensitivity test (not covered by insurance, but well worth the $125.00) to find out what her body is is senstive to.

An ER doctor once told me your brain is trying to communicate with you by saying you are exposing yourself to something it doesn't like. Instead of making the pain by taking meds, try to figure out what it deams as poison and avoid it.

He was the only doctor that I ever saw that was honest and gave me insight to truly solving my 27 year long battle.

Luckily, my daughter only suffered for 3 years before she decided to see if it was dairy.

The way I explain it to non-migrainers is your body is like a cup. The more toxins you add to it, the more it fills up, once it reaches the top, it over flows and you get a migraine. For me, I ate dairy everyday and pasta weekly. Same thing with my daughter.

Never once did a doctor ever recommend avoiding dairy and infact, it's not even listed on the migraine food trigger list, yet it's a very common migraine trigger.

It has nothing to do with being hereditary, it has everything to so with what she is exposing her body to.

CINDY471 profile image
CINDY471

Btw, our doctors said it was hormonal and yes, it can be, but once we removed what our body deamed as toxic, we are still migraine free

Now, she may be sensitive to lots of other foods that an allergy test will not pick up. So, the secret is a food sensitivity test.

Angebombange72 profile image
Angebombange72 in reply to CINDY471

Thanks so much Cindy! Will definitely look into this. So happy for you and your daughter that you found the cause. X

caroash profile image
caroash

Hi so sorry to hear your daughter is suffering like this My daughter was diagnosed with migraines last summer after being told they were chronic headaches.Was put on Candisatan which did help a lot,but they've flared up again lately.If she's got run down they get bad again.Shes had acupuncture which helped at first ,but not so much lately.The biggest thing that helped has been Hyperbaric Oxygen Therapy,she couldn't go for a while due to Covid ,but open again now.we're in the UK.A foot spa with lavender and peppermint also helps.The problem is you can start getting medication overuse headaches,which has happened lately.So going to speak to GP about an alternative possibly Prednisone. The hyperbaric oxygen works best if you can have a course of 10-15 close together 3-5 a week then top ups.You can get it at a reduced rate in some paediatric centres or some MS centres have them.

Angebombange72 profile image
Angebombange72 in reply to caroash

Thanks for your reply. I’m not sure in Australia, if Drs would do this for a teenager, but I’ll look into it. I’m happy to hear it’s working for your daughter x

caroash profile image
caroash in reply to Angebombange72

pubmed.ncbi.nlm.nih.gov/777... yes my daughter is 19 and was put on Candisatan by neurologist.As for hyperbaric oxygen we pay for this privately.Hyperbaric oxygen helps the body to heal and alkalises the blood and really boosts the immune system mWe met a woman who recovered from cancer through regular oxygen sessions.

caroash profile image
caroash

Also to help any hormone imbalance the herb Agnus Castus is a good adaptogen help rebalance hormones and the Pharmepa fish oils are very good too(anti inflammatory)

Angebombange72 profile image
Angebombange72 in reply to caroash

Thanks!

caroash profile image
caroash in reply to Angebombange72

This brand is very good was recommended by Dr Perrin,they are high in EPA which helps inflammatory response .

Onthemove1971 profile image
Onthemove1971

One more thing... increase amount of water she is drinking.. this helps a lot!

troy04 profile image
troy04

Angebombange72 I have phases when I get daily headaches (all day) for several months at a time, so I understand how horrible it is. (I'm no teenager though).

The fact that she is getting them for the last 3 months suggest something has changed or contributing to this - see if you can find out. Doing blood test is always useful but it depends how far you(or your doctor) would like to go.

There is actually no cure unless the obvious reason is found out. Some people get these from Lupus or APS and treating them can also prevent headaches.

Hormone change is an obvious area but she would have to be unlucky to get headaches everyday from it. Lots of things have already been suggested, but I would suggest trying the following 3 steps for just 1 month (even though it may not be easy):

1) Complete dairy and meat free diet (B12 deficiency can be dealt via vegetarian option / supplements) and avoid sugary drinks and sugary food as much as possible

2) Sleeping same time (no later than 11pm) and waking up same time (if possible)

3) 15/20 min jogging every day. If not possible then skipping (jump rope) around 100 to 150 every day. Don't let her get dehydrated all times.

For remedy, as already been suggested - daily 600mg Magnesium (chelated) is the best option. Other option may be tried gradually.

Please ensure all 3 steps are strictly followed - just for 1 month to see the difference.

Best wishes.

// Troy

Angebombange72 profile image
Angebombange72 in reply to troy04

Hi Troy. Trying to get to the bottom of it!

We’ve tried going dairy-free, but made no difference. She’s been tested for lupus, which was negative. Will look at testing for APS.

She has a strict sleeping routine and doesn’t take her phone into her room at the night. Unfortunately she’s on a blood pressure tablet, so it’s not recommended to do any high-energy exercise. She has tried light jogging, but it upset her migraine too much.

Will get a food sensitivity test though, as was recommended by someone else.

Appreciate your reply.

RobinC21 profile image
RobinC21

Hello,Please make sure your daughter gets tested for Lyme disease. This is a cause of new onset migraine type headaches which can easily be missed. Check the Horowitz Lyme disease questionnaire to see she has any of the other symptoms of tick borne infections. You can easily be bitten by a tick and not know it or get a rash. This is what happened to me. I had sudden onset of migraines, neck stiffness and some change in mood too. I’ve only recently found out that I have Lyme disease and have probably had it for a long time.

I also found the App Curable helpful as a way of managing chronic pain.

All the best for her recovery.

GeneralZeesh profile image
GeneralZeesh

If the aspirin and triptans aren't helping the best course would be botox injections all through the forehead and trap muscles around the shoulder's. I know the subject can't have botox due to age but as someone who also suffers from cervicogenic migraines maybe also have a MRI done on the subject's neck as cervicogenic migraines are a whole different disaster. I've suffered from it for almost 10 years. Also muscle relaxes such as baclofen can greatly reduce pain as they reduce any tension that muscles in the neck area can cause.

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