Chronic migraine

Hi I am new to this forum so was wondering if anyone can give any of their experiences of suffering with Chronic migraine/ rebound headaches. My daughter who is 14 years old as just been to see a specialist consultant regarding her constant headaches over the last 12 months. In the interim period through our GP she was prescribed propronal which was making her very sleepy and not easing her headaches.The consultant put her on 10mg of Amitriptyline at bedtime, however she was still was waken each morning with a thumping left sided headache with blurred vision. The consultant discussed with use and decided to wean her of these tablets over the next 6-8 weeks. She is still suffering these deliberating headaches on a daily basis so taken her back to the doctors today. I am at my wits end seeing her suffer from these headaches each day. She as not been to to school for the past 7 weeks due to her suffering and is starting to not want to do anything socially with her friends. The doctor as now given her Sumatriptan(50mg) to take 1 then repeat if needed after 2hours. She will try anything if it will help with the pain. But just feel that she is taking a lot of medication at a young age and that she is only a very slim in statue so worry about the effects these medication will have on her on the long term. As a parent it is very difficult to see her suffer on a daily basis. Just want her back to her old self enjoying her school and social activities. As anyone suffered these deliberating headaches at such a young age?

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  • I come from a family where we all suffer from a similar condition and some of us have continual migraines seriously so, do other family members have any autoimmune diseases or history of multiple migraines? I think it is always important to work out what sort of headache it is. going along to The National Migraine Centre for an appointment was one thing I did for my son, and you can self refer and fund. MaryF

  • A very distressing situation. There are no easy answers, unfortunately, but there are a few things you might try which could help and won't do any harm.

    Many people with chronic headache make things much worse by taking too many painkillers: anything with caffeine in it should be strictly avoided and paracetamol and ibuprofen too since they are known to generate rebound headaches. It's very difficult to break the cycle but two days' agony usually does the trick. Triptans work like magic but they also cause severe rebound headaches so it's important to take no more than two or three doses in any one week otherwise you end up with chronic triptan dependency. Sumatriptan is the cheapest triptan but not the best choice for everyone. Eletriptan works more slowly but the effects are longer-lasting. See if you can persuade your GP to try that. But all triptans cause rebound headaches if you take too many.

    More positively, it would be worth looking very carefully at diet since many people are intolerant of things they consume every day: especially bread and milk. You will lose nothing by trying a week without any dairy products, wheat, anything with msg in it, chocolate, any caffeinated drinks (including tea, coffee and cola) or processed meats such as bacon. Simply eating lots of fresh fruit, salads and vegetables can make you feel amazingly healthy. It's also important to drink lots of water.

    If none of this helps (it's important to keep a diary so you can see exactly the pattern of headaches) you need to consult a neurologist: GPs simply haven't the expertise. There are lots of other prophylactic treatments but by far the most promising treatment for migraine is botox which has none of the ghastly side-effects drugs have.

  • Maybe also worth looking into magnesium, riboflavin and q10 as supplements or going down the alternative route of acupuncture. There could also be a link to hormones kicking in which may settle with increasing age. Hope you find something that helps. I personally think that prescription drugs and even supplement doses should be started much lower. 10mg of ami is quite alot for someone so young. Headache prone brains are very sensitive.

  • I would also suggest a trip to the national migraine centre. It is also worth considering whether the headaches are linked to her hormones as she is at about the age where they can go a bit haywire - mine started at the other end as I went into peri menopause and I need to take oestrogen. Triptans can also cause overuse headaches I am afraid and everything may need to stop for a while - but with medical advice. One last thing is to make sure she's drinking plenty of water - the tablets make you very dry and dehydration will just make things worse.

  • I would also highly recommend her learning mindfulness meditation, but she would need to want to do this. It has helped me hugely.

    amazon.co.uk/Mindfulness-He...

    There is light at the end of the tunnel. I do take medication daily but am now mostly pain free.

  • Hi Paulacg

    I am also experiencing chronic migraines as peri-menopausal and i have recently been given Sumatriptan by my GP, started today...but concerned re: rebound headaches and i'm curious what you have found that is helping you? Many thanks...

  • Hi joseph97

    Last September my migraines started to become more regularly by November I could barely work I couldn't eat I couldn't do anything, my headaches were so bad, eventually it was diagnosed with medication overuse headaches an the only way to get through it is stop everything it sounds horrible and you think there is no light at the end of the tunnel but there is, I started withdrawl in November an went off work from dec until middle of March because during the withdrawl is horrible, I am now back at work but things are a lot better an still go a way to go but I now take amitriptyline 30mg an i am slowly increasing my propranolol every two weeks till I get 80mg. I'm still getting a migraine every 2 weeks but allowed to take aspirin up to 6 times a month. I am also very small an was concerned with the doses but it will take several weeks to get over the tiredness an to increase the dose slowly.

    I also noticed you said she is taking sumatriptan, with these headaches everyday it sounds like MOH, she needs to stop taking all medication apart from a preventative so all analgesics an all triptans as they all cause rebound headaches.

    I know it's hard seeing her like it, but there is a light at the end of the tunnel.

    Dani

  • Hi Dani, I have just found your post from 2 years ago. I'm not sure if you will see this message. I notice you went through medication withdrawal which you decribed as "horrible" and I'm sure it was. I also need to come of the 'triptan' tablets as I've been taking them for far too long and they are just giving me rebound migraines every day/every other day. It seems the only solution but if I don't take a triptan to control the migraine I become violently sick and cannot keep fluids down so it then becomes a medical emergency. I wonder if you had this problem and if so, how did you deal with it. I am at a loss to know how to cope with going cold turkey. I can stand the migraine but I cannot cope with the sickness and losing so much. Any info. would be really helpful.

  • Thank you all for your advice, I am sure and hoping that the headaches will settle down for her. She has managed half a day in school this week. Today as been a difficult day for her. She as struggled especially with blurred vision most of the day. She started to come around at tea time and was very hungry. She is now settled in bed. Just hoping tomorrow morning when she wakes up she can open her eyes without having the headache/ blurry vision. Fingers crossed, just feel so helpless and want to take the pain away

  • i also started having migraines as a skinny 14-year-old... i think i took empirin for it back then [61 years ago!], then something that i think started with an 's' after empirin was discontinued... they worked well... and in later decades, fiorinal was [and remains] one of my 2 mainstays for forestalling and stopping a headache... the other is what is commonly referred to as 'mexican aspirin' and is sold in colombia [where my doctor first prescribed it] as 'neosaldina' [metamizole]...

    it's my first choice, since there are no side effects and it works within 15-20 minutes... will stop one from starting, if taken when first visual sign occurs [bright 'jagged-edged circle'], or you can feel one coming on... and gets rid of one already in progress just as quickly...

    the generic fiorinal is much more costly [but you can't buy metamizole in the us, have to have someone get it for you in mexico], but it works best on an ongoing 'bad' migraine a bit better, as it also is a bit of a mood-lifter thanks to being a barbiturate...

    neither one is habit-forming or harmful taken over a period of years/decades, as i am living proof of same... i feel [as do doctors in the many countries where it's available] that the fda's warning about the 'foreign' medication is due more to the competition factor than any actual basis in fact regarding any down side... especially since it can be bought over the counter everywhere but in the us, costs much less and doesn't add to doctors' income...

    i hope your daughter's headaches are not a symptom of anything more serious... if you haven't done so yet, please be sure to have her evaluated by a neurologist, to make sure...

    i've lived for 61 years being otherwise relatively healthy, thanks to the medications i've been taking for the migraines, so it's definitely possible...

    love and healing hugs to your daughter, maia

  • forgot to add:

    meditation combined with vit. b2 has also worked for me, in stopping an attack... as has meditation/bio-feedback... a change in diet is a major factor you should consider, as well...

  • Hi

    Thank you for you advice. I have recently seen a nueologist whom as prescribed her Amitriptyline (10mg early evening) and sumatriptan when needed(1tablet then another 2hours later if needed). She takes amitriptyline each evening and started to take sumatriptan last week due to the headaches getting worse. She appears to have had some side effects to the sumatriptan and woken up this morning which she describes as the worse headache ever. She as been pacing up and down unable to lie down as this makes the headache worse and preceded to vomit. I am at my wits end seeing her suffer this on a daily basis. I have just emailed the consultant to seek out even further advice.

  • Unfortunately we see a lot of children of school age at the clinic and totally understand your concern. It can have such an impact on a young person missing lessons and denting confidence, not to mention constantly feeling unwell and lacking in energy. Please do call us for an appointment for a second opinion as being the only headache treatment charity in the UK, we have a great deal of experience with young people. we'd love to help her get her normal life and personalisty back! Our number is 0207 251 3322 (or more info on our website nationalmigrainecentre.org.uk) Wishing you all the best.

  • i just recalled what i used to take as a teenager... it was 'edrisal' and it worked... you might try to find out what the ingredienets were and see if a generic equal is on the market now...it sounds like you need to find a better neurologist, or try alternative methods... ask to try generic fiorinal... it has stopped even my worst migraines cold and should do a much better job than all those other drugs, with no side effect other than a slight 'upper' feeling that can only mitigate the 'down' of her suffering...

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