I am quite worried about a dear friend of mine.

For more than 20 years, he has suffered from what I have just realised are nerve-based headaches on a fairly frequent basis. After not being diagnosed for a long time, he was eventually told that he had Occipital Neuralgia, but on the basis that no one has ever been able to treat the pain, or provide any relief whatsoever, this just does not seem right.

In any case, this autumn, he has had it much worse and more frequently than before. So much so that his dad’s behest, he went to a BUPA hospital and had some sort of nerve injections in late October. But of course, these did not work. Now today, he was in a terrible state: horrible headache, and a numb face.

He gets very impatient, and in his despair at never having been properly diagnosed and treated, I know that he doesn’t explain his condition very well when sitting with doctors. But it is getting to the point where I can’t help but think he is going to start suffering from depression (if he doesn’t already), and possibly other things, and frankly, I don’t know what to do.

His symptoms are:

1. a constant pain in the crown of the his head that does not respond to any painkillers

2. periodic numbing/tingle sensation in his face

3. [could be unrelated] periodic numbing in his hands, although he hasn’t verbalised any connection between this latter symptom and the first two.

Does anyone on here have any experience with such symptoms? If you are a doctor, do you have any left-of-centre notion as to what it might be? Any suggested relief? I know that a few years ago for nerve pain in my leg, I was prescribed an anti-depressant as a painkiller; is there any sort of surprising treatment like that that I could suggest he ask about?

I am happy to answer questions if that would clarify anything; I am pretty sure that what I can get off here will be at least as good as whatever he has been told these last couple of decades!

Anyway, thanks for your attention.

How’s his B12?

I’ll ask him.

google “ice pick headaches” because thats what they may feel like.Has he had a brain scan, neurological tests etc, does he get dehydrated,

It’s numbers that are needed, not an opinion that it’s ‘fine’. UK guidelines are set too low according to the Pernicious Anaemia Society.

Sounds right to me.
I’ve had occipital neuralgia since a car accident in my teens with varying frequency and you’ve done a decent job of describing the symptoms.
Thankfully I get episodes infrequently now but when I do, very little helps other than heat applied to my neck whilst lying in a quiet, darkened room.

I feel for your friend and hope he can find some relief. If he does, let me know how.

google “ice pick headaches” because thats what they may feel like. Has he had a brain scan, neurological tests etc, does he get dehydrated,

He has had a number of brain scans/head scans/MRIs. As for dehydration, he always has a bottle of water on the go, so I wouldn’t think so.

Pernicious Anaemia Society

I’ll look into this.

@perchypanther: At what age did your episodes start to become less frequent?

Has he hit his head at any time? Also drinking water doesn’t necessarily mean you won’t get dehydrated. Does he take salt with or in his food?

Does he take salt with or in his food?

Not in quantities beyond what any of us eat. In other words, I have never seen him add it, and his normal diet is pretty, well… normal. And I don’t know if this will come up as a question, but he is not especially overweight, either.

OK, has he seen a dentist or an ENT consultant? It must be incredibly frustrating for him to be feeling so rubbish.

Edit: could this be helpful:

http://www.drmyhill.co.uk/wiki/Headache_-_common_causes_of

I know that he doesn’t explain his condition very well when sitting with doctors.

If thats the case you (or someone) can accompany him to an appointment. I’ve done that a few times for people- in fact I’ve done it today with someone getting an dementia diagnosis.

Pain is a very subjective thing to describe but the nuances of describing it can be key in making a diagnosis. Pain isn’t going to show up in a blood test or an X-ray so a description is the only tool you’ve got.

does not respond to any painkillers

Some painkillers when taken for any extended amount of time cause a ‘bounce back’ and the drugs themselves can exacerbate or even be the source of the pain – stuff like co-codomol can get people into a cycle where they’re taking the pills for headaches that are in fact a side effect of the pills.

Amitriptyline can be used for nerve pain, has he ever tried it? It’s used quite a lot for migraine prophylaxis and shingles pain.

@perchypanther: At what age did your episodes start to become less frequent?

Peaked when I was in my late thirties. Tended to be stress related as I hold a lot of tension in my neck which sets it off.

It’s all about the neck for me. The occipital nerve passes through the neck muscles at the back and over the top of each side of the skull. When I strain or over tense my neck this pinches? The nerve on the right side and I get half a headache.

Bizarrely, about 90% of my headaches were on a Sunday.
I rarely missed work as a result.

I have only had 4 this year compared to roughly twice weekly at my peak. They are completely debilitating and painkillers do not help.

Try cannabis, ingest or vape if a non smoker. Go abroad for a weekend if necessary. No harm in at least ruling it out as an effective medication. Comparatively harmless compared to other options. Do it, what have you got to lose.

periodic numbing/tingle sensation in his face

3. [could be unrelated] periodic numbing in his hands, although he hasn’t verbalised any connection between this latter symptom and the first two.

To add my voice to Perchy’s, my wife has had almost exactly this for years, including the pain behind the eye. It is caused, we now think, by the same problem – neck and shoulder muscle problems interfering with various facial etc nerves. Exacerbated by desk work/bad posture.

We looked into many of the options listed above – ENT, dentists, even opthalmologists etc.

A good physio will be able to reproduce all the symptoms simply by pressing on the muscles at the point they are screwing with the nerves. Worth doing this if only to exclude this as a potential cause.