Ndph (New daily persistent headache)

[Duvetdays15]

Anyone had a diagnosis of this? My daughter is 13. She has been suffering with continuous migraines for a year next month and she has just been diagnosed as either ndph or chronic migraines. We've been told that whatever label it's given treatment will be the same. She's now on Nortriptyline 3 weeks in and no improvement so far. Also taking 400mg riboflavin. Previously had pizotifen, imigran nasal spray, topiramate. Had 2 mri.

[Chleo11]

Hello. I'm very sorry to hear that your daughter suffers so much at such a young age. Many people on this forum have been diagnosed with chronic migraines. When it comes to NDPH it is quite rare and I am quite surprised that the doctors have told you that the treatments will be the same. I didn't think you would get triptans for the pain, or injections of CGRP (your daughter may be too young for this) in NDPH. They don't know much about headaches in general, not much research is being done and yes, they end up giving the same medication to everyone who suffers from chronic headaches, or chronic pain in general. There could be a hormonal issue, I'm thinking about her age.

In relation to Nortriptyline, it takes 3 months to start having an effect (like all tricyclic med), if it works. All the med you have mentioned are old (youngest one being the triptans you've mentioned, which are 30 years old) and as you already probably know, they are not med for chronic headaches but they do work for this condition on some people. I guess you're aware that Imigran is limited to 6 times a month and not a preventative.

You'll find plenty of info on this forum in previous threads. You and your daughter should try to work out if there are specific triggers which make the headaches worse. I wish your daughter the very best!

[Duvetdays15 in reply to Chleo11]

Thank you for your reply. Its so hard seeing her suffer, she's missing out on so much. The waiting to see if medicine works is draining in itself as we feel we are just in a holding place waiting for something to worse. I too keep thinking about the hormone aspect but the paediatric neurologist didn't say anything when I mentioned this. It's hard to know what to do next.

[Chleo11 in reply to Duvetdays15]

Being in pain all the time is very hard. Neurologists don't know much about hormones. There is no test to see if there is a connection or not between headaches and hormones. Chronic headaches should be treated by a multidisciplinary team and not only by neurologists, but unfortunately, it doesn't exist in the UK. Have a listen to the National Migraine centre podcasts: nationalmigrainecentre.org.... will help you understand a few things. The best thing you can do to help your daughter is to get as much info as you can. There is a forum on Healthunlocked managed by the National Migraine Centre. A lot of people are on it. If you have money to spare (yes, I know, times are hard), go private. And before you do or try anything with no medical advice, have a look on both forums to see what was said about it previously. Good luck!

[Duvetdays15 in reply to Chleo11]

I haven contacted the national migraine Centre yet. We did however get this diagnosis from a private paediatric neurologist and are waiting a appointment with headache clinic so hopefully they will have some more answers.