Chronic headache and fatigue - blood test question

[OhBeAFineGuyKissMe]

I’ve posted about my DS before as this is an ongoing problem. Quick summary

March 2022 severe headache came on following a virus infection. Headache and fatigue have never gone away, which has been debilitating with lots of school missed, repeating a year and still not back full time. MRI and endoscope down nose all clear.

Medication tried so far: naproxen, propanol and Amitriptyline. Nothing has worked consistently so far.

Going back for another medication review for the next option. But I am also going to ask for blood tests as they haven’t been done since march 22. This is my question - what should I ask the doctor to do? (Not demand just be informed before the appointment)

Thank you.

Ask them to test everything possible, are they under the care of a specialist consultant ? I hate that we have to fight to get answers it's so frustrating. Have eye problems been ruled out ? Auto immune ? Can you give a little more info OP on what they have tested for and ruled out maybe ? Your poor DS god love them x

I know you said it's most likely post viral but have other causes been liked at?
Diet, TMJ syndrome, stress, migraines.

Ask to try pizotifen which is migraine prophylactic.

How old is DS?

Headache are notoriously difficult to treat and I really feel for your DS

I would be requesting the following MRI or a brain scan. Given that nothing else seems to be working, I would want a full workup. Another cause of being unwell can exist simultaneously as a viral infection. Have they been tested for guillain-barre syndrome?

Sorry at work.

Eye problems ruled out a rare eye problem was found and treated with 2 ops but totally unrelated to headaches.

MRI completely clear

He is under care of a neurologist who has diagnosed persistent headaches. First 2 medications haven’t worked so need to move onto third.

He was tested for Gillian Barr last time and that was clear. He is 18 now. This all started at 18.

Seen doctor who has requested a full blood test so fingers crossed something pops up from that otherwise we will continue stumbling around in the dark.

Thought I would come back to this as it is still ongoing. Last set of bloods were all clear. Totally off the 2nd medication - which reduced the headache a bit but too many side effects. He is currently not on any medication and feeling pretty bad.

Needs to be back in school or A levels this year are out the window. Then we will move on to plan D. Problem is I have no idea what plan D is.

Have you spoken to the Migraine Trust? They may have helpful ideas. I wonder if a specialist NHS headache clinic would be willing to try botox injections. Might be worth discussing. Also, have you read through the NICE guidelines for headaches in adults?

Thanks for the migraine trust info. I will look at the information.. I think we might be able to go back to the consultant and ask to try Botox - nothing else has worked.

Just really hard to see him in daily pain and unable to get on with his life.

For me, amitriptyline did help but caused too many side effects but candesartan has mostly solved my migraine issues and hasn't caused such significant side effects.

A friend found the medications didn't help but was referred to one of the NHS headache clinics and regular botox injections have really helped them.

There are several other prophylactic migraine treatments that might be worth a try if he has only tried 2 so far. Does he get any relief from triptans?

Is he keeping a headache diary? I think the secondary care clinics would expect to see at least 8 weeks of headache diaries.

The migraine trust has a list of headache clinics he could ask to be referred to.

Interesting it was amitriptyline that had the side effects. He hasn’t been keeping a diary at the moment as she has had the headache (singular it has never gone away) for nearly 2 years.

He has tried Sumatriptan to no effect. Pain killers seem to do nothing. Good to hear you have had success with different medication, means there is still hope.

Is it worse when he is reading ?

Have you checked for Irlens Syndrome?

It sounds a bit like this?

https://practicalneurology.com/articles/2022-may/new-daily-persistent-headache

Must be absolutely debilitating for your son and so sad for you to see him struggling with this for so long.

He has a diagnosis of new daily persistent headache. He has no vision disturbances or trouble with reading or depth perception so I don’t think it is Irlens.

He's under adult health at 18 ( from 16)

This started when he was 16 and so he was treated as paediatric. I posted here initially and stated in this group, partially as the neurologist think it might be puberty related and partially to discuss the impact on schooling.

The cut off for inpatient paediatrics is 16 birthday, and most children in children's services Ruth chronic illness transition at that age to adult services.
Well of course up to you I did look to see if it was a new thread and think it is so thought you might be more limited responses for an adult on a children's topic.

Think you mentioned headache started at 18 so that was also why I wondered but thought it may be an error

Headaches started in March 2023 (said 22 by mistake in original post) when he was 16. He is now 18. We have BUPA so got a private referral but needed to be a neurologist that saw paediatric patients.

Is it worth going down the NHS route?
Might be worth doing in tandem.
Persistent headaches isn't a diagnosis - what sort of headaches does the Dr think they are?

I think the NHS specialist headache clinics are meant to be pretty good if you can get a referral

I will ask the doctor (he has an appointment tomorrow)about the headache clinic. We are due to start the next medication having gradually stopped the
amitriptyline over the last month.

Can you do both NHS and private, I would have thought having two separate prescribers wouldn’t be a good idea.

As far as I know the diagnosis is New Daily Persistent Headache.

I will ask mumsnet to move to move this to general health as he is now an adult.

Now this is in the general health board I will bump and ask if anyone has experience of New Daily Persistent Headache, and dealing with constant pain.

Any advice or next steps?

Has the specialist you've seen got special interest?
I'm no neurologist but am a medic in general med - you can see both nhs and private yes.
I'm no headache expert as most are managed by Gps but cluster headaches migraines and analgesia headaches are common.

This is who we have been seeing https://www.candoverclinic.com/consultant/dr-adrian-miller/

He gave the gp a list of meds to try and we have been going through them in order. It is just such a slow process* and it is hard to see him in constant pain and not be able to get on with his life with his peers.

*took ages to get to neurology as he had some eye problems (surgery on both eyes) then MRI showed some inflammation on the sinuses then finally got to neurology. Each medicine you need to titrate up, be on it for a good while before deciding it’s not working, titrate down before you can start the next one!

He looks very highly qualified doesn't he?
Maybe just see what he says about how things have gone and how the symptoms are ?