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.

Had a medication review and he will be starting candesartan. Read a couple of papers and it seems this has a better response that Amitriptyline though still only 26% had a positive effect. From the paper no one got a complete effect but just bringing the pain down will be so good.

Fingers crossed it works for him with no unpleasant side effects.

Anyone any experience with this medication?

I'm not so familiar with it for headaches.
It's an ARB used for hypertension

Used for migraine prophylaxis

Really hope it helps for him. For me it has been fairly effective (I do still get migraines but get less of them and they are much less debilitating).

If you have the time watch this talk on youtube discussing the metabolic causes of migraine, it might give you some useful tips.

Ketogenic Therapy for Migraine Management - with Dr. Elena Gross

If this appeared post virus, have they considered ME/CFS? Some people do have chronic headaches/pain with it and it would explain the fatigue.

Have they looked for reactivated viruses like herpes or EBV in his blood? You can also get chronic headaches from that

Fingers crossed you see some progress poor lad

Has anyone checked his iron, b12 and vit D levels?

Mine were horribly low after the flu a few years ago and my main symptoms were headaches and persistent fatigue. It was horrible but resolved quickly after treating the low levels.

I was wondering this too, although I would think that would have been tested. I had fatigue and a persistent headache that didn't respond to painkillers when iron and ferritin was low. Hope your son improves soon, OP.

Has he tried topirmate? Totally "cured" my DC's migraines. On 50mg. Tried to reduce to 25mg and daily migraines came back. Was getting migraine every single day for 6 months before we tried this.

Hope the new medication works for him.

He had full bloods taken before Christmas and all came back clear - he often has low vit D but tablets and a SAD lamp have move that fully into the normal range.

Thank you, we haven’t tried that one but it might be on the list for the future. I’m glad it has worked for you and you have found relief.

My daughter has New Daily Chronic Headache (New Daily Persistent Headache / NDCH/ NDPH). I would try to get him CGRP injections (eg. Aimovig, Ajovy), as they are the only medication developed specifically for migraine and can work wonders. My daughter recently experienced her first 2 days of being pain free, after three years of 24/7 headaches and several migraine days every month.

All other medications prescribed to prevent migraine and treat chronic headache are antidepressants, beta-blockers or antiseizure meds. They do work for a lot of people of course, but if he has tried 3 different meds and they did not work, he can move on the CGRP injections.

I would read: "Pain in Children and Young Adults: The Journey Back to Normal" by Zeltzer and Zeltzer. It contains a wealth of helpful information. And "The Explain Pain Handbook: Protectometer" by Lorimer Moseley https://amzn.eu/d/1MnfbyF Watch: TEDxAdelaide - Lorimer Moseley - Why Things Hurt

Entertaining and informative.

Check out #themigrainelife on Instagram and take her course if you can. It will safe you a lot of time while you trying to get on top of this.

You could register for the Migraine World Summit on 25 March here: https://migraineworldsummit.com/ They offer a lot of free information.

I find the Manage my Pain app best to record pain levels and other symptoms.

I would not just read about headaches and chronic pain, but also about FND (functional neurological disorder). If your son has NDCH, he is organically fine. This is a functional problem. It is similar to a software problem in a computer. The hardware is fine. So regular blood tests are not needed if he has NDCH. They will not find anything, because this is a problem with dysregulation of the nervous system (central sensitisation).

The best book on FND is "Functional Somatic Symptoms in Children and Adolescents" by Kasia Kozlowska. It contains the most information and ideas of the ones I have read.

If you have questions, drop me a PM.

Thank you so much. It is so hard to find information on this and it is horrible to see them in pain all the time.

Your poor daughter - 3 years of constant headache. I’m glad she has some pain free days now. Can I ask how did she manage to get on with her life during this time or was she completely floored?

The latest meds are the third so if that doesn’t work we are going to look at the injections. But it fingers crossed he responds to these.

i will look up the reading. Thank you again.

NDCH is a rare disorder, so there is little specific information. There is a lot on migraine though and that’s mostly relevant, as is information on chronic pain. It is important to not just try to tackle this with medication but other interventions as well, such as paced breathing, meditation, exercise etc.

my daughter has had very difficult years but she is a highly complex case. She is doing amazingly well considering.

best of luck!