Introduction

[PointOfFact]

I experienced a minor bump to the head three years ago. The symptoms I experienced in the weeks after were extremely unpleasant, the most noticeable being a feeling like my head was filling up - a very fuzzy and very disconcerting feeling. On reflection, these symptoms were some of the worst I’ve experienced of any illness and became almost scary in that I did not know what was going to happen - I felt that the pressure in my head was continually building up.

I have had variable symptoms over the years and am not seeing a great deal of improvement. I have periods, days, weeks, even months when I seem to feel reasonable, although things seems to be getting worse now, not better. It’s the periods of feeling okay that make me think that it’s finally gone and I can just get on with things like normal. Then I have crashes and it’s back to square one as it were.

The symptoms I have are various, such as stabbing pains to the head. These are rarely bad that they are unsettling, but can occasionally be sharp and surprise me. They are predominantly to the side of the head where I was hit. These pains can come and go - I can go for weeks without them sometimes, but then they come back. It’s the symptom I can live with and have become used to.

I also experience stiff neck and cracking in the neck. Again, this comes and goes, but always comes before the onset of fatigue. I saw an osteopath, but whilst this appeared to provide some temporary relief, I decided that it was not a solution after the stiffness returned shortly after a few sessions.

Fatigue is the main issue for me. Lately I’ve been finding that I can sleep for anything up to five hours in the evening from around 8pm. This disrupts my routine, as sometimes I can find it difficult to get back to sleep again after. I will wake from these prolonged naps feeling exhausted. This does not happen every night, but can be concurrent over a number of evenings.

The fatigue can be sudden - I can be fine one minute throughout the day then it hits and I need to stop and rest or lie down. It will be accompanied by the usual fuzzy, dazed, heavy feeling in the head. Weakness in the legs also always occurs at this time. It is like a sudden shutdown - no energy, instant exhaustion. On bad days, such as today, I cannot be on my feet for more than ten minutes at a time and need to lie down. It is not tiredness, it is a need to rest, but will often result in sleep.

I have found sound can be a factor in the onset of fatigue - a brief spell in a noisy shopping centre can result in heavy eyes very quickly, although this is variable.

I have also experienced a tightening sensation around the back of the head.

I have also noticed that I have very minimal sense of taste. This has come and gone over the years, but in the last few months I would say that it is continually minimal to non-existent.

My short term memory is now, I would say, very poor. It’s hard for me to recall things from a few moments ago - instructions or tasks are forgotten almost instantly.

I had a brain scan in September 2020 which was all-clear. I was put on medication which I eventually stopped, as it seemed to be exacerbating symptoms. I was prescribed Gabapentin, but decided not to take it after discussing the side-effects and the addictive properties.

More recently I have been prescribed medication for neuropathic pain, to be taken as and when needed. I don’t find this particularly useful, as it’s for a symptom I’ve become accustomed to.

It is the variable nature of my symptoms that is most frustrating. Sometimes when I feel “fine” for longer periods I start to think that maybe I’m making something out of nothing. Then when I have a bad day or period, I can find myself almost at the point of tears wondering why this is happening, how I can feel this bad? It is a zombie-like state and ends up in rest or sleep.

I hope that things will improve and I am aware that my symptoms are probably nothing compared to others, although the bad days are very difficult to cope with and make me wonder if things will get better or not.

[Leaf100]

Hi PointOfFact

Have you been in contact with Headway? Getting treatment really is necessary, and they have lots of info. This will include understanding info, coping strategies, tests , professionals that ought to check you out.

Wait and see, which is what some docs say, is not necessarily all there is to it.

Your symptoms are not uncommon. Sure, we all feel for the souls in the hospital, bedridden, etc - and that still doesn't mean your life hadn't been impacted in a significant or major way.

You also deserve to get help.

It is also true no one can tell you how this will go but you will do better by finding out what you can do, than you will if you sit and wait.

For example, a neuropsychologist can do testing and then recommend some treatments or courses of action. Perhaps an OT can assess how you do certain activities and help you learn to do them differently. If you would benefit from medication , a neuropsychiatrist can help with that. (Don't be put off by the 'psychiatrist ' bit - because of medical history brain injury ended up there - along with the study of vitamins and minerals and how they effect us...affect...? I always mix those up.)

CBT is also something often recommended- basically teaching you to observe your thoughts and see what works for tou and what may work instead.

There are not any real standards of practise at the moment and it is an inury really underserved- go for what help there is anyway.

Start with Hesdway - phone number is pinned under the link on the right.

Leaf

[PointOfFact in reply to Leaf100]

I have spoken to Headway on many occasions and would say that they have been the most helpful throughout. GP recently suggested neuropsychologist and CBT. Looking at the CBT options on offer, it appears to be a short online course with or without support.

I am also concerned about employment. I am a stay at home parent, my partner works and is not greatly understanding of the PCS. They do not appear interested in reading about it and often refer to laziness - whether joking or not.

I need to look for work, but after an absence I worry about how I may fare. I have been doing things at my own pace up until now and do not know how the PCS might affect me day to day in a work environment. I would say that a constantly noisy environment would not be suitable for me. I worry about the instant onset of fatigue and also the general impact on energy levels. At the moment it is unpleasant and disorienting to lose whole evenings to rest/sleep and I wonder if upping my routine will increase the regularity of this downtime.

I’d like to tell myself it’s nothing to worry about and just to get on with things, as I have been trying to do for the past three years, but when the fatigue hits I see that it still remains a problem.

[Leaf100 in reply to PointOfFact]

It's common for people to not get it, as disappointing as that is.

Have you discussed a back to work plan with Headway? Mu understanding is OTs can assess what might be suitable .

Not working is a huge deal for most, and we'd find a way to, if we could. If it's not in the cards, then you need to look at applying for benefits.

Also consider asking Headway about couples counselling . Unfortunately sometimes people need to hear what's so from someone else .

It is a lot to go through, it's tough. That is the plain hard truth of it. It isn't well understood by most medical people, never mind the general public.

Hang in there, and keep us posted.

[Johnny-One]

After a severe illness, a crash on a motorway where I landed on the wrong side of the carriageway, and collapsing for 35 minute whilst doing Judo, I was referred to several neurologists and sleep clinics. Nobody had touched me at the Judo competition it is just I have no memory of about 35 minutes of my life.

I have been on Topiramate 250 mg per day for 9 years now; 5 tablets a day. This is two on a morning and three on an evening. I can go up to 1,000 mg, but the most I have seen anyone on is 500 mg. However due to the UK leaving the EU, Topiramate is no longer an option so I use Candarstan instead, since December 2022. I was advised to go up to 16mg, but am finding 8mg is fine for the moment.

With Topiramate some people say about memory loss, and others say about weight loss, i.e. you forget whether you have eaten or not. I think using any strong drug you need to be careful, but I have not suffered weight loss ... I wish!

With memory loss, when I first started using it, I was finding I occasionally started forgetting words, but could not decide whether that was due to other conditions or not, so I started taking Omega Fish Oil, which is supposed to help with brain functions. I have not suffered since. Now is this because I am taking Omega Fish Oil or just because I believe it is good for me?

I was asked by my neurologist to measure my headaches from 1 to 10, and also the frequency. With 10 being the worst possible. I used to be on a 9 or a 10 most days. I now get about 2 or 3 headaches a month maximum and the most I get as severity goes is a 5 or 6, and even that is rare. I have not had a headache since 7th November 2022.

I have two degrees, know over thirty programming languages, recently taught myself two new ones, and so I keep myself mentally challenged constantly. I am still a black belt in Judo (although am not allowed to do this anymore), can still swim and walk about four to six miles each day, so am reasonably fit for my age, but not an athlete.

What you really wanted to know is about Gabapentin. I am also taking Gabapentin because my headaches were interfering with my sleep patterns, 400 mg each night. Gabapentin is now classed as a Category C drug. Once again, I am allowed up to 1,000 mg but I found at 600 mg I was not as alert the next day, so cut back down to 400 mg. I am now able to sleep at night, without my headaches interfering with my sleep. I say sleep, I usually turn in at 09:00 and read for 30 minutes, then I sleep. I cannot keep awake any longer. However, I start waking from about 04:00 am.

I am also a narcoleptic sufferer and have chronic lung issues, so am not as active as I used to be 15 years ago.

I really hope that helps and gives you an insight. To look at me there does not look like there is anything wrong with me, and that is the way I want to keep it. I want to keep as fit as I can.

The one thing I would stress though is everyone’s normal is different.

On Health Unlocked I have found some great stories that I find very encouraging, knowing you are not alone in your suffering. Over the years I have met others who tell me about what has occurred to them and I always refer them here.

Good luck.

[PointOfFact in reply to Johnny-One]

One thing I have noticed since I hit my head is that I rarely, if ever, get headaches. This seems to be contrary to what most experience with PCS. On the rare occasion that I do get a headache, I will feel absolutely terrible and will need to rest.

I definitely notice that this change has come about since the injury - before I would have headaches now and then and they were in no way severe or debilitating. This does seem to be a bizarre quirk of PCS for me.

[LondonGee]

I’m sorry to hear that you are suffering. I had a similar experience after a “relatively minor” bump on the head 7 years ago and was made to feel that it was psychological. It certainly wasn’t. Similar to you my head would “fill up” and want to explode. I would have days when I was okay and something would set it off. I couldn’t cope with shops, restaurants, bright lights and noise, even talking with more than one person at a time. Changes in floor patterns would confuse me and after any “set off” I would lose my words and suffer total exhaustion. I would lie down for a rest and go into a deep sleep. My memory was terrible

Are you aware of what triggers these episodes? For me it was light and noise. I started to wear special tinted glasses (FL41?). See, even now I lose words and names!

My first visit to an osteopath made a huge difference and instantly the fog lifted, albeit temporarily, it was a huge relief to realise I could feel clear headed.

That, together with the glasses and avoidance of over-stimulation helped. Covid lockdown was a blessing for me as I was able to avoid all the trigger stimulation.

Gradually things have improved. I’m still very careful and avoid things but I’m so much better than I was. I still hate the bright lights but my eyes are far less sensitive than they were. My mental maths has improved although it’s not what it was and I still lose words but have found coping strategies.

Seven years is a long time but now I feel better. My first doctor said to me that I would return to normal, it might just be a different type of normal. This statement made me angry, but in reality that is what has happened.

I hope that helps!

[PointOfFact]

It’s difficult to say what causes the fatigue. I am almost certain that excessive ambient noise is a trigger, as this will result in heavy eyes almost instantly. It is usually in environments such as a shopping centre or a busy road, where background noise is consistent and overwhelming. Lots of different overlapping sounds seems to be a trigger.

Sometimes I almost feel like a fraud, like I’m fine, as I have the days where I can get on with things fine. For example, today I had some physical tasks to do and needed to do an additional physical task in the evening. I knew this would probably be too much, but it needed doing. As I expected, I then lose the remainder of the evening to sleep. This is disorienting, as I will wake around midnight and I often find that I cannot sleep again until the early hours of the morning.

Regarding returning to work, I do not think that a physically demanding job in a noisy environment is going to be something I could sustain. Even if it were manageable, I would likely find myself having no free time, as I would likely need to rest/sleep. I’m already noticing the effect on my mental health of losing evenings to sleep.

I know that I should be sensible and pace myself, but I just want to make the most of the times when I feel fine. It’s good to feel “normal”. This is probably why I’m almost in tears on the bad days, as it’s such a contrast to the good days. I’m literally a zombie wondering how I can possibly feel so awful and how my body can be so drained. It’s complete shutdown without tiredness. I’ve actually noted that I don’t really feel what I remember as normal tiredness that much anymore.

[Luzern61]

I can empathise with a lot of what you have mentioned.

The pattern you describe of being on a 'roller coaster' resonates strongly. I that you feel you are making good progress and often go for weeks or months with nothing significant, and then out of nowhere you get hit like a bombshell without warning or being able to relate it to any obvious patterns or routines that might explain it. Overall, there is often a downward trajectory, but this not always perceptible. It can often only be appreciated by comparing say, the symptoms experienced a few years back with those that are more recent.

It is incredibly frustrating and debilitating, and can drag your confidence and quality of life down to a low ebb. A good suggestion is to keep as active as possible and trying whatever works for you. This may not be what you did before TBI but anything that helps you break out of the vicious cycle of negativity is well worth it. As has been said repeatedly, hang on in there.