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Help When Multiple Meds Not Worked

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#1 Thu, 13/02/2025 - 19:01
RouteOne
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Last seen: 1 month 1 week ago
Joined: 13/02/2025 - 18:25

Help When Multiple Meds Not Worked

Hello,

Newbie to the forum here. Please could anyone let me know what worked for their headaches if other treatments failed?

My daughter is 15 and has been experiencing chronic daily headaches since June 2024 and no treatment has proven effective so far.

Below are the tests she has had and the treatments she has tried so far:
 

Test & Imaging

Blood Tests (NHS): Normal in September 2024

MRI (NHS): Normal MRI in October 2024

Eye Tests (NHS): Normal eye examination at Hospital1 in July 2024, Hospital2 in September 2024 and at Hospital3 in November 2024.

ECGs (private): Showed mild left axis deviation and probable RVH

ECHO (private): following ECG findings: Essentially normal with an insignificant PFO

Medication & Treatments

Paracetomol

No improvement 

 

Ibuprofen

No improvement

 

Codeine

No improvement

 

She only takes the above medication when offered them in A&E as they do not help her with the pain and she is worried about rebound headaches.

 

Propranolol (private prescription)

20mg morning and 20mg evening (max dose)

 28th September to 23rd November 2024

No improvement

 

Verapamil (private prescription)

80mg morning, 80mg evening (max dose)

23rd November 2024 to present day

No improvement

 

Indomethacin (NHS)

50mg morning, 50mg evening (max dose)

17th January 2025 to present day

No improvement 

 

She also takes 40mg omeprazole every morning whilst on Indomethacin

 

Sumatriptan spray 10mg (NHS)

Summer 2024 and January 2025

No improvement 

 

Sumatriptan spray 20mg (private prescription)

October 2024

No improvement 

 

Sumatriptan injection (NHS) 

17th January 2025

No improvement 

 

High-flow oxygen (NHS) - initially helped with the pain whilst she was on the oxygen but no longer effective

Food Exclusion 

She has tried a food exclusion diet for at least 8 weeks of gluten, citrus, sulphites, chocolate, caffeine, dairy.

No improvement 

As you can see she has had some treatment on the NHS and some privately.
 

Her GP referred her to our local hospital last year and we went private whilst we were waiting for her referral to come through (6 months!). My daughter had her appointment at the local hospital last week and has now been referred on to paeds neurology at St George's, however, I have been in contact with them and the wait list there is 3-6 months.

There is no way she can wait that long again to be seen by the NHS as she is in such severe daily pain - she has been to A&E 10+ times in the last 3 months as it has been that bad - so we have decided to go back to the private Dr again in the meantime but wanted to get an idea of what other people have tried when the above treatments have failed.

She has also just started taking: Vitamin D, B2 (Riboflavin), magnesium body oil and CoQ-10. 
 

Any help/advice would be much appreciated.

TIA

Fri, 14/02/2025 - 20:59
Phil
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Last seen: 1 day 48 min ago
Joined: 26/02/2014 - 17:02

Sorry to hear your daughter is struggling with headaches. We're not doctors, but we can offer advice on which Neurologists can help with an actual diagnosis.

I strongly suggest you give the advice line a call.

Keep a headache diary, noting when the headaches begin and end, intensity and whether the headache is affected by anything: Foods, temperature, strong smells, vaping, hair products, solvents and stress are just some of the triggers of various headache disorders.

We have a section on this site, Do I have CH?

It's not a diagnostic tool, but may possibly help.

Phil.

Wed, 19/02/2025 - 01:29
Dr ron
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Last seen: 3 weeks 7 hours ago
Joined: 19/02/2025 - 00:10

Ha, funnily enough I started eating walnuts the other day and they seemed to have an effect on my brain....maybe just me but anything is worth a try hey?

Thu, 20/02/2025 - 06:30
Phil
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Last seen: 1 day 48 min ago
Joined: 26/02/2014 - 17:02

I think the trigeminal nerve, on top of the pain it "causes", also tightens your ear drum so loud food doesn't deafen you. It's also there stopping you from biting your face while eating.

Your walnuts may be distracting that nerve. Maybe.

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