Weird headache lasting many years


Diagnosed with ME in 1994, my son suffered from debilitating fatigue, unable to sit up and barely able to talk until 1997, when he was admitted to the National Neurological Hospital, London. Following 10 weeks as an inpatient, he learnt to sit and walk again but after some medication which was ceased, had developed constant dizziness, shortly after he developed tinnitus.
By 2003, he was 50% recovered, driving, teaching guitar, studying, working in a bookshop, when he contracted Epstein-Barr virus, undiagnosed for eight weeks. Immediately after the fever, he developed an indescribable headache, deep in his head, making him feel very ill. He managed to keep going for some years until 2021, when the ME symptoms, mainly the weird headache and other normal headaches worsened. Plus the other symptoms. As this has lasted 30 years, every kind of medication and doctor available in the UK (including Dr Bansal) has been consulted and nothing has helped.
Following reports of idiopathic intracranial hypotension, in Health Rising, I contacted Dr Higgins, Cambridge but unfortunately, he is ‘under review’ and no longer allowed to treat M E patients with this possible condition.

Does anybody reading this suffers from this kind of horrendous headache? I’ve never seen it mentioned. Could it be that my son has some other illness since he no longer suffers from extreme fatigue? And what could this be? I would be glad of any suggestions.


Active Member
Hi Susana, I have had a variety of different symptom presentations over a 20 year time period and I believe this is a nervous system disorder caused by a maladaptive stress response resulting in lack of ability to maintain homeostasis in the body. The brain can create any symptoms it wants to get the persons attention and deliver the danger message that something isn't ok seek safety.
The first time I got sick at 21 it was all weird neurological symptoms and brain fog. The second time I got ill in my 30s it was all pain in my head and face and then shoulders. I was diagnosed with atypical face pain and get trigeminal nerve blocks. I didn't even make the connection that I am dealing with the same illness bc symptoms are so completely different. The fatigue part of it has varied greatly at different times.

I have been following the protocol of Alan Gordon who wrote a book "the way out" and took his zoom class pain reporocessing therapy and it has taken a lot of effort and I had difficulty understanding how it all works, but my pain has been getting better and better as I learn how to implement this system and safety in my body in a way my body can register and understand it is safe. Essentially I am teaching my brain yes things are safe. I hope that makes some sense and let me know if you have further questions
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Hi Ughhh, Thanks so much for your reply. This is most interesting; I've not heard of Alan Gordon and shall certainly follow this up. I'm glad you're getting better and better! And I'll certainly pass this on to my son and suggest he contacts you if he has any more questions. Thank you!

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