Stop calling it a headache!

[Miss_B_Haven]

I may always have been slow on the uptake. All I know is that I had this epiphany more than 3 1/2 years after my head injury.

It isnt a headache!

My brain hurts.

It dawned on me that when I say headache, people make an assumption. Because everyone has headaches and everyone knows what they are like and how to deal with them. So the assumption is that I can recover as easily as they do , using the same methods and medications.

This is absolutely false!

And it is my ( our) fault for using the term headache.

If we say, as I have started to do, "my brain hurts" or " that makes my brain hurt". The listener hears something entirely different and far more accurate. The look on their faces proves that they are reacting differently than before when I used the term headache. They are jolted into thinking differently and realize that I am experiencing something rather more intense than a mere headache that can be resolved by a few aspirin.

Then they listen!

Please try it and let me know if you experience the same changes in reactions.

[Kirk5w7]

Thank you, I will try this. My consultant seemed to understand as i was being wiped out every couple of weeks for a few days. It was like a migraine but no pain just an intense feeling of pressure and absolutely zero energy.

He prescribed me pregabalin and for me it has worked, up to now. I am hoping that once lockdown ends and i can resume my “normal” life i will improve. But if not its vack to the consultant.

But i still get those brain hurting moments but with no pain. As you say it is reacting to something, mis behaving, making me feel strange most of the time.

I dont know what the answer is or even how to communicate the problems i have properly.

Take care

Janet x

[Miss_B_Haven in reply to Kirk5w7]

I hear that! So many things to try to understand. And we are asked to communicate how we feel and what we feel and we don't have the words or knowledge to do that properly. And we hurt ourselves by not being able to communicate properly! Doctors, employers, coworkers, family. We are the ones that have to teach them what we need and we don't even know that ourselves.

And teaching makes my brain hurt!I am glad they found something that helps you. I have not used any meds myself, other than ibuprofen. It just scares me too much.

Let me know if you notice any difference in peoples reactions when you tell them your brain hurts.

I have, even from my boss , which is huge!

[sealiphone]

A internal 'different' experience highlights what we normally don't recognise when we talk to others, in that we presume a word means the same to each person.

The position we're in is that there isn't a shared lexicon, so we're forced to use words which seem closest to our experience and mean something to others.

I've noticed 'brain fog' being used around long Covid, Even though others can't know what that means,there's a recognition that it's bad, so perhaps we should claim the description.

[Kirk5w7 in reply to sealiphone]

This is where everyone’s experiences are different, because i wouldnt describe mine as fog.I am more often than not 💭 ng and doing very clearly so its not a fog as such.

I get so tired of trying to understand it myself.

Perhaps ill just get on with coping.

J x

[sealiphone in reply to Kirk5w7]

That was my point, as in we may be better off just using a word others think they understand, then we all know what we've got isn't good

[Miss_B_Haven in reply to sealiphone]

I have to disagree. We already know what we know. We live it, we feel it, we dont need to communicate to ourselves.However if we need help and we want to get appropriate help. We need to communicate clearly.

I have been unable to get any real help at all, other than from family and friends. Certainly not from my workplace or my Workers Compensation Board. And I am just now realizing that I have not communicated to them correctly as I did not understand the experiences well enough.Another example for me is being asked if I "experienced difficulty initiating"

Nope .

And then I realized I do, but only in certain circumstances and I would not use that description. Rather it is more like mental impotence. Not a difficulty, a total inability. No matter how strong the desire.

You should see the eyebrows shoot up when you use the term impotence! Now they are paying attention and listening.

So I am learning that shock has it's value.

My experiences may not be relatable for many, But if even one person can use my experience to gain better understanding and make even a small improvement in their struggles then I will celebrate that.

[Miss_B_Haven in reply to Kirk5w7]

Coping is a very good thing! Kind of exhausting though isn't it?

♥️

[Miss_B_Haven in reply to sealiphone]

This is precisely what I am getting at. If we are to have understanding we need to communicate clearly to others what we are feeling. It is all subjective. But if we do not use accurate terms we will fail to gain understanding.

So pain in the head that is different from a headache should not be called a headache.

A car and a truck are both automobiles but they are not the same.

The same applies to fatigue.

Anyone who has experienced it knows it is very different from being tired. So calling it tired is misleading and will not gain the communication we need.

I don't believe it should be up to us , in our injured state, to educate all those around us on what we need. However there it is.

[Kirk5w7 in reply to Miss_B_Haven]

I am so glad i dont have to negotiate the workplace, negotiating DWP for the few years i had to was bad enough. But, it kept me on my toes. I only have family and friends now. For the most part i am on top, except my husband who persists on asking me daily how i am today.

For the most part i am the same every day, just subtle changes that become apparent as the day progresses. Take yesterday i felt at my best as i was preparing for bed, maybe i had just relaxed. I will cogitate over that notion, there are often times during the day when i find my body all wound up, particularly my neck and shoulders.

Funnily enough my son did something yesterday that used to help in the early days, he held my head. A simple thing but it meant i could relax all those muscles holding my head up, such a feeling of relief.

Enough now, thank you for reading, these are all thoughts i used to share with my sister, but she died from covid in February. Tragic .

Janet x

[Miss_B_Haven in reply to Kirk5w7]

aaaw I am so sorry! Always hard to lose a loved one, but to lose ones only confidant that is even more so. I know well the lack of someone to confide in so perhaps we can utilize each other?? Message me if you like. ( I assume there is a way to do that on here!)

[Kirk5w7 in reply to Miss_B_Haven]

Thats very kind thank you very much. If i dont its because i often use a journal to sort my thoughts and i do tend to fill my day with this or that. I keep my mind as busy as possible.J x

[sealiphone in reply to Miss_B_Haven]

I understand what you say but don't agree.

After my 1st bleed I had major problems at work and was unable to communicate what the difficulty was.

It was obvious to me that expecting someone to understand is a vain hope, I'm satisfied if I'm just believed when I say I have a problem doing something.

Consider your Neuropsychologist do they understand your internal experience and clearly they don't, so what hope is there for others.

To make it easier for others if I'm having problems and require help using a self checkout for example, I'll say I'm having a migraine attack .

[Miss_B_Haven in reply to sealiphone]

Keeping things simple is a good defence as well. As long as it works for you keep on keeping on.For anyone who it isnt working for, perhaps this may be a new approach to try.

[sealiphone in reply to Miss_B_Haven]

I don't even feeling I'm a fraud, as I have visual problems, which are something like when I did have migraine attacks.

I've even had to ask staff to hold my hand and help me out of supermarkets etc

[tigeranne14]

Ha! I know where you are coming from. I have always felt I made up my own words to describe how my brain injury affects me/makes me feel. I always said from the beginning my brain hurts its not a headache but my brain hurts. The GP Rx Tramadol and diazepam which allowed my brain to relax.

[sealiphone]

Just listening to a BBC piece about long Covid, concentrating on fatigue and the ME Society managed to get more of the time about acute fatigue and ME

[Miss_B_Haven in reply to sealiphone]

What is ME? Sorry but I am not familiar with all the terms for every thing. There are so many!

[sealiphone in reply to Miss_B_Haven]

It's the acute phase of Chronic Fatigue Syndrome and a lot of advice given by the NHS to us is based on US research into ME & CFS.

Symptoms of ME, cognitive fatigue, visual problems and other symptoms seen in a ABI.

In fact a area in the frontal lobe when damaged, shows up as dysfunctional in brain scans of those with ME, although I seem to remember this was a different symptom than fatigue.

A few years ago ME was generally considered psychological and not biological, probably the most discriminated against group at that time.

Edit:

I've recalled the damaged area relates to my particular injury in the, frontal lobe, it's difficult to describe but losing sense that you're embedded in the world, perception of space and time changing and other experiences, which I'm struggling to think of any analogy.

[Miss_B_Haven in reply to sealiphone]

no worries no fuss, when you think of something post it please.

[Chelle3069]

I've been using these words for a while now and it does make a difference with people, another one I use is my brain is tired or I've got brain ache give me a minute sometimes longer.

[Miss_B_Haven in reply to Chelle3069]

Thank you! My brain IS tired a lot of the time, I never thought of it that way ! Clarity is good!! Thank you for that help. I am going to use it!