Hi Hattie,

I know exactly your experience of 24/7 headaches of some sort of so many different types.
I think that there are three things to describe which I have called where, when and what. What the headaches actually feel like is very difficult to describe. However, the other 2 are pretty easy, so perhaps if you manage to communicate two out of three, then you are getting somewhere.

Where the headache is is fairly easy to say and that does tell something about it. Probably the listener will get that it isn't your usual headache just from this. It can be all over the head at different times. I have never had a headache that isn't symmetrical before. I think that when you tell someone that you have a headache, they assume that it will be the sort of headache that they have had themselves, and fairly mild, but that isn't the case.

Describing headaches to me is pretty much the reverse of the problem that you have with your friend, because I have virtually never had a headache in my life till I had a brain injury. So, I know lots about different sorts of post-concussion headache but I don't really know what a "normal" headache is like, the sort that people often complain about and take painkillers for. However, on the only occasion of my life when I remember having what was probably a tension headache, I remember it being the same on both sides and it wasn't precisely localized to one spot that you could put your finger on.

I have found that sometimes it is with post-concussion headaches. There can be a region around my right eye that aches. Etc.

Also, you can say that the headache isn't due to a bump on the head. Some people think that it might be caused by damage to the scalp, rather than what is inside your skull. But I assume that like me you can press your scalp with no pain. This shows that it isn't an external injury like a bump. Even one neurologist that I saw thought that it might be some external bump. Not true.

So, my point is that you can already say quite a bit about your headache just by the location.

Second was when you have them. Pretty much all the time, and they can change. Again this seems to be completely outside most people's experience (thank goodness). There is already quite a bit that you can talk about, if the other person is truly interested about this fact.

So, by the time that you get to all the different types of headache you have probably said quite a lot. But I do agree that there are lots of different types and they are difficult to describe, probably because these types of headaches are outside of people's normal experience.

Perhaps if you go through all the different sensations, unusual and unwanted sensations that you get in your head. Some of mine aren't even pain.

I did get sensations of touch going down the sides of my face. These have pretty much stopped.

Then there is a feeling of pressure in various places, particularly like a band pulling tight across the top and sides of my head.

Then there are different levels of pain, sometimes a sharp pain at a particular point on my forehead, but at other times a more dispersed aching across the top of the right side of my head.

One thing that you mentioned, Hattie, was one like a vice round the back of your head. I did have pain in straight lines across the back of my head. This went away after a year or so and I now think that that particular pain was not due to concussion at all but rather due to damage to the connection points of tendons that were violently stretched by the impact that I experienced.

As I had a rear-end collision, there was a whiplash effect on my back and neck as well as damage caused directly by concussion. Tendons and muscles connect parts of the back to parts of the head and I had pain at both ends of these points. My back hurt as well and this pain also went away after a year or so.

So, it was difficult for me to differentiate what pain at the back of my head was due to concussion and what was due to the whiplash effect on connection points of tendons.

I do hope that some of your pain in that area might be due to the latter effect because I found that that healed up completely with the passage of time.

Apart from describing your headaches to your friends and family, perhaps it is also worth noting for yourself exactly what they are like, where they occur, how often, what they are like. Then when you are getting better you can compare and see that there have been improvements, like in my case, the straight lines of pain across the back of my head have disappeared.

If you don't note precisely what your headaches are like it is easy to focus on the headaches that you still have, with a "glass half empty" mentality, and forget about those headaches that you are no longer having.

I still get daily headaches, but when I go into detail, I can see that I have made a lot of improvements in the types of headaches, where then occur and how often and for how long.

Best wishes to all,
CS