Constant Headache for 4 years that has never gone away

[Chappelll]

My now 15 year old daughter got headache 4 years ago when she was 11 years old. It has never gone away. She wake up with it and goes to sleep with it. The day she got it she also had a pain in her right side of her abdomen and fatigue. The pain in her abdomen went after 3 weeks but the fatigue and headache have never gone away, not even for 1 day. The G.P. at the time covered us with 2 Antibiotics over the first 4 weeks.

She describes the headache as 2 headaches - one all over her head and another on one side of her head. It’s about 6 out of 10 bad. But they can also turn 10 out of 10 bad. I notice not enough sleep or stress can make it very bad. Paracetamols and nurofen don’t help much.

She has had 2 CT scans on head over the 4 years which have come back clear. Numerous blood tests which have also always been clear.

We are seeing a neurologist and were told she picked up a virus or viral infection and it just never went away, apparently this can happen. She has taken Amitriptyline in the past and is now taking Topamax. The Topamax doesn’t help with the daily headache but does help with the headache spiking bad.

Has this happened to anyone else? If so has the headache/fatigue ever gone away?? Do you know how you got this?? Any advice??

Thanks!

It sounds like post viral fatigue/chronic fatigue/ME. I had it for years after glandular fever at 14. It is awful, i learned to manage it to an extent. I have to go out now but I'll be back later.

My fatigue did go away, but it took a long time to learn how to manage it, and it has definitely constrained my life.

I absolutely agree that stress/ lack of sleep make it much worse. Also nutrition has a huge impact.

Firstly, on a practical level, has she had her eyes tested? ME impacts your muscles, including the muscles in the eye, I started wearing glasses for the first time at that point which definitely helped.

Next is pacing, the word that every ME sufferer hates but it is crucial. You have to really tune in to how your body is feeling, and go with. No 'pushing through' if you're having a bad day you stay in bed/on the sofa in the hope that you'll feel better tomorrow.

Food is so important for me, a day of the wrong food and I really feel it. Just last weekend I had a busy Saturday and stupidly didn't eat well and I felt absolutely awful on Sunday. No processed foods, I'd really recommend a food diary to see if you can spot a pattern, there may be something that affects the headaches. Definitely no alcohol or caffeine for me. I also take a lot of supplements.

I'm in my 50s now, 3 children and a lovely career so there is hope. I'm sure there's an ME charity that will help, I'd try to find a GP or consultant with a specialist interest as a lot of doctors haven't a clue.

I had similar after covid and also vaccine ( couldn't say which caused it as had close together) in my case was constant back of head headache and I had neck pain with it too - gradually in my case it declined after 3 months of beta blockers and a ton of supplements- but the neck pain never really fully went ( I'm 63) - can't help wondering if this is post covid/vaccine reaction? I can say it was truly awful, impossible to concentrate.

Wanted to add the things that helped me - fully gluten free for about a year ( I now try to keep low gluten and seem ok) magnesium spray , vit D plus multi vit daily and at least 3 small bottles of water with electrolytes.

asparagusffern Thank you for all that info! I am now researching ME and a lot of it sounds very familiar. So happy to hear yours went away!!

She was already wearing glasses but she gets them checked and there is no difference.

Her diet is atrocious so definitely need to work on that anyway.

I will also look for for a specialist who deals with it so thank you 🙏🏼

Crikeyalmighty. Thank you for also responding, we did wonder was it Covid to begin with as it was January 2020 when it happened, she didn’t have a vaccine by then so definitely not that. She did do a test but it was negative (not sure if she took it too late though). She does take vitamins but misses them every few days , going to stay on top of that and I’m going to get those bottles of water too, I never heard of them, thank you 🙏🏼