Ndph (new persistent daily headaches) /chronic migraine

[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.

[Francesca21]

Am so sorry to hear of this. Definitely sounds hormonal dosnt it. Awful to see your child suffer. My son suffered a lot between age 10-15. And is still very headachey person at 29. But over the counter meds work for him they dont touch it for me.can she see a paediatrician? Gynaecologist? Prof Anne Macgregor london is specifically interested in hormonal migraines , its £300 for an appt but worth paying for the right advice. She isnt a charlatan like some neurologists and actively encouraged me to cancel my appt with her once she had rec. a look at my history and knew she couldnt help me. She explains that the body dosnt mind no hormones and it dosnt mind lots of hormone but it hates fluctuating hormones. I dont know if bp drugs like propranolol and candesarten can be used in children but Id definitely want her to see a neuro or paediatric dr and pay for initial referral then ask for nhs treatment? As wait times can be 42 wks! I hope she gets some help and soon. Poor love . Anti histamines may help and peppermint oil and ice in flannels. Does elec light and televisions bother her? They bother me immensely. Best of Luck

[Duvetdays15 in reply to Francesca21]

Thanks for the reply. We have seen 2 paediatric doctors and now a paediatric neurologist. Thanks for the info about this lady something to consider. Light bothers her, sensitive to the sunlight. It's so hard knowing what to do next and she's missing out on socialising and school.

[LieslT in reply to Duvetdays15]

hi there, I hope your daughter has had some improvement or found a cure.

My 10-year-old son is on 3 months of constant headaches nothing has changed them and they haven't gone away and he has had no relief.

he has just started back at school doing half days for the past 6 weeks but can't make the full day .

MRI , CT , Lumbar puncture and lots of blood tests still no answer.

I only came across NDPH and it fits all his symptoms.

I've mentioned it to the neurologist but i don't know if I'm being taken seriously.

we have been passed on to a pain specialist and waiting on an appointment .

we have tried Amitriptyline and Sandommigran with no changes .

Have you found anything that has worked ?

i really hope you have

Liesl

[Duvetdays15 in reply to LieslT]

Hi sorry to hear your son is suffering with this too, so young to be in constant pain. We haven't found anything that works yet. Now trying Propranolol as too many side effects on Nortriptyline. We have a diagnosis of chronic migraine with possibility of ndph as the events surrounding it are sketchy. With ndph you normally know the exact date of headache onset. Even the neurologist seems a bit baffled by my daughter's persistent headache and has said he's running out of options. Interested to see your son has had a ct scan and lumbar puncture do you know what these would show/do differently from a mri? Are you in the UK? We are looking at alternatives to medication too and are going to try osteopathy next. Good luck

[LieslT in reply to Duvetdays15]

Its so upsetting to hear there has being no child with your daughter .

Yes we can pinpoint the exact date my sons headaches started , he had just been treated for a Stye and what I have read is that NDPH can start after an infection or back end of a virus .

His MRI scan ( had 2 ) came back clear and also his Lumbar puncture was clear .

His CT scan was clear and ruled out anything sinister .

Doesn’t make it any easier with no answers still .

The lumbar puncture checked for pressure in the brain and also tested the spinal fluid to see if the was an infecting hiding , that can’t been seen through MRI ect .

We are about to start a cause of steroids .

I have heard of a steroid reset , when they give you a high dose and it resets the brain .

My gut says NDPH .

My elder son suffers from Migraines and headaches but they come in waves and are completely different .

NDPH does not give them a break it’s constant .

We have tried a headache specialist working on the neck , this is not going to help :

We may try Chinese medicine , if nothing works .

I’ll let you know how the steroids go and if that changes anything with my son

Thank you so much for getting back to me , I pray that both our children recover from this and can enjoy life once again .

Warm regards

Liesl x

[Duvetdays15 in reply to LieslT]

I think I will enquire about a ct scan and a lumbar puncture, although I have heard this isn't very pleasant? The paediatric neurologist did say we could do all sorts of tests but they probably won't show anything! I wish someone would look at it as a whole rather than just treating the symptoms. There's got to be something more, we've yet to find it though. Such a frustrating illness. I hope that you find some relief soon.

[LieslT in reply to Duvetdays15]

hi again ,

Yes the lumbar puncture is not pleasant at all but someone that had to be done to rule out pressure , even though we were 99% sure that it would be clear .

I left this until week 10 because I was very hesitate , I’m saying that , he recovered quickly with only a sore back for a week .

There has to be something that can fix this for our kids .

My son is unwell with a virus but once his recovered I’ll start him on the steroids and see how it goes .

I’ll let you know this week if there is any change .

X

[fishbang]

If the headache is one sided it's worth considering that it could be Hemicrania Continua. I spend four years with a persistant daily headache and found this myself. The suggested treatment is indomethacin with I couldn't stomache in the long term so I take Celebrex and Pregabalin.

[Duvetdays15 in reply to fishbang]

Thanks for the info. I've never heard of this before or ndph until neurologist said.

[1518]

How awful this must be for your daughter and for you. Hard to know what advice to give as you are you’ve seen quite a few doctors and tried a few drugs. As others have said it sounds connected to hormones, amazing how powerful they are. I’ll just add a couple of suggestions if I may, I would try and stay away from over the counter analgesics, I know it’s hard but in the long run they can cause more problems than they solve. My experience has been that any profilactic you try probably won’t have an effect very quickly so to stick with it for a while before trying something else. Also earlier this year I had an video appointment at the National Migraine Centre and after years of disappointing consultations and drugs I finally spoke with someone who was extremely knowledgeable about migraine and gave me a raft of strategies and suggestions for a different way of managing drugs and lifestyle. Of course the suggestions will be different for your daughter so I won’t list them, but the consultation changed everything for me and if the regime I’m on now stops working, which has been the pattern, then there are other strategies I can go to next. I really hope that your daughter finds something that works, I wouldn’t wish this on anyone. Good luck.

PS the doctor I saw was Dr Munro

[Duvetdays15 in reply to 1518]

I've seen her talk about migraine and listened to her podcasts. Something for us to think about. My daughter could definitely benefit from someone looking at everything rather than treating the symptoms.

[Xandi2 in reply to Duvetdays15]

I was just reading about your daughter's light sensitivity. Avulux migraine glasses are extremely good for this. They will also accept returns at 60 days if she finds they dont help. Thry are expensive but definitely worth it - they allow people to work in computers and go in shops eith that unbearable strip lighting so definitely worth it.

[Duvetdays15 in reply to Xandi2]

Thank you for your reply. My daughter has prescription glasses so not sure how these would work, I'll take a look, thanks

[troy04 in reply to Duvetdays15]

A lot has been already said, I would just add that - you may try to rule out Temporomandibular Joint Disorder (TMJ/TMD). It may not be always obvious, one of my friends went to a dentist and the treatment reduced her migraine 80%. I am not saying it is the case here, but I think it is worth a try. If you can find a dentist who is interested in this area (Migraine / TMJ) that will be better although most dentists should be able to deal with this. Also, a GP in the UK is able to prescribe "duloxetine" which works better than other preventatives for NDPH, you can ask their GP about it. No medicine is without side effects though, but Duloxetine is better than Topiramate or Gabapentin if it is compared for adverse side effects.

[Duvetdays15 in reply to troy04]

Thanks for the reply. She has seen the dentist and a maxillofacial facial surgeon and tmj was ruled out, so that's good. I've not heard of the medication you mention I will look into this thank you

[Xandi2 in reply to troy04]

I just looked up duloxetine, I had never heard of it, looks fantastic in some cases of chronic pain. Good to know. It looks like it takes affect after a few weeks too.

[Boeingbabe]

So Sorry to hear this. If hormone issues are ruled out please check for autoimmune issues like connective tissue disorder and PoTs and indeed, an mri of the neck. Cervical migraines are very common! Also invest in an orthopedic pillow, especially is she wakes up with migraine. Do investigate low bloodpressure which can cause cerebral hypotension which can cause migraines and otber issues.

[Duvetdays15 in reply to Boeingbabe]

Blood pressure is fine as we are taking due to the medication she's on. I've heard a lot about pots, will read up on that. No one has mentioned any other mri apart from the 2 she had on the head. We are seeing an osteopath next week who runs a headache clinic so hopefully this will help. I will look into the pillow. Lots of good advice thank you

[LieslT]

I’ve sent you a private message ??