Two steps forward, one step back: Wonder if anyone... - Headway

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Two steps forward, one step back


Wonder if anyone has experienced anything similar. 

Earlier in the week I posted about my recent minor head injury that mostly seems to be getting better. However occasionally I find myself getting worse again - headaches, dizziness, tiredness etc. When this happens I also have a tendency to get quite worried, although I have never been diagnosed with any form of anxiety (though I am starting to think that I should get checked out for it).

I'm currently waiting for a neurologist appointment as my GP has basically said that he can't help me. It's somewhat frustrating because in the meantime I don't feel like I can go back to see someone who has admitted that they can't help, but equally I can't keep taking myself off to the hospital when I do have a bad day. 

I guess it's a fine line...

13 Replies

It's not unusual at all, far from it. As I've often said before, I genuinely can't recall the last time I woke up and felt 100% OK. It's before the whack to my bonce, that's for sure. Sometimes is easier to live with than others however and the bad days obviously stand out for all the wrong reasons. 

It's about how you deal with those bad days that will help you cope. I have to look after myself, sleep if I need to, don't panic or even worry too much and get myself through the day, safe in the knowledge that I'm allowed to be ill and I'm always going to be slightly more prone to periods of ill health than most.

In essence, what you're going through is normal. Unless I'm sub normal.

All the best


Since my BI my GP has offered nothing more than 'Don't know/Don't really care, so I've found myself another.  My new GP has treated me like a private patient and seemed genuinely concerned about the total lack of aftercare.

She admitted to having only basic knowledge herself and so referred me there & then to a neurologist.  So at least, after 4&1/2 years I might just get some answers & peace of mind.

Hope it's the same for you Clare. And if we're stuck with our symptoms, at least we might have the necessary explanation & reassurance to cope with them.    x   :-/

ClareO1986 in reply to cat3

I can understand that GPs have to be "jack of all trades" or, as a friend of mine says; "one page ahead on Google", but to show a complete lack of interest because I'm able to "articulate my problems so well"... (my GPs words at my last appointment). He did refer me to a neurologist but only after going to see him 5 times in as many weeks! Even then, I doubt he will have put me through as an urgent case.

I'd like to find myself a new GP, which will most likely end up being a swap to another in the same surgery. Living in a more rural location means that finding one that will accept you isn't always easy.

It never ceases to amaze me how much variation there is in levels of care and understanding from doctors. I understand the time and resource constraints better than most with having family in the NHS but it doesn't take anything really to show some compassion.

cat3 in reply to ClareO1986

No, I agree Clare that it's just basic treatment showing patients courtesy.  It's we, and others like us, who keep these people in employment after all.  But when, as was the case with my previous GP, they don't even bother to make eye contact, surely it's time for them to quit working in a 'Caring' profession.

I was actually embarrassed by the thoroughness and patience from my new doctor.  Just shows what poor treatment we can become accustomed to.  Hope you find a good replacement !   xx

ClareO1986 in reply to cat3

Thank you for your kind words of reassurance. I was starting to think that I was overreacting, despite my partner and friends trying to convince me otherwise. It has definitely made me more determined to try and get an appointment with a different GP. Coincidencidentally, I've recently seen my dad take early retirement from an NHS critical care setting because he wasn't being given the chance to care as much as he would have liked. It is very sad and I know he will be missed on the unit. He is one of the most caring people I and his colleagues know!

steve55 in reply to ClareO1986

clare01986 i remember your post, my advice was to make an absolute nuisance of youself and tell him you want a scan. i stick by that advice, the only way you get anywhere is to push push push.

gp wont do anything then you present yourself to your local a and e explain what happened and you would like reassurance that there isnt a bleed or any damage.

i dont want to seem harsh , but i have a brain injury and thats what i would do,

good luck

ClareO1986 in reply to cat3

Progress has been made... I was in a lot of pain at work today so went home and tried to arrange to see a GP. Usual story - no appointments for weeks but persisted and managed to get a phone call with a doctor, who got me to go in and see her. She was so lovely, listened to my concerns, actually looked at my head (something that my previous GP had never done) and examined my neck. She found a nasty knotted muscle in my shoulder explained really well about how it will be referring pain around my head. She wasn't overly concerned that it was a complication from my head injury because there were no other concerning signs. Her thoughts were that it fits with the whiplash and has been worsened by my job and being more anxious at the moment. She has actually given me suitable pain relief and gave helpful suggestions on returning to climbing and trying pilates for relieving the tension and anxiety. I must admit that I do feel much better about the situation, all because someone took the time to listen and not just jump to conclusions.

cat3 in reply to ClareO1986

Yes Clare, it can make a world of difference when someone does the job they're paid to do. I'm so glad you've found such a great replacement ; stick with her ! xx

Hello Clare,

I'm going through something very similar at the moment post op 3 years right temporal brain abscess and 2 years right side radical canal wall down mastoidectomy.

Funnily enough today been for an audiology test to someone else and explained my history and symptoms I get and like my Neurologist and ENT Dr he has said the same its the side effects from what's happened.

Now days I try not to get to anxious try not to worry which is easier said than done but from experience it doe's not help and it's normal.

At first I was sick of hearing from the dr's don't get stressed but I'm learning to accept it more now.

My neurologist I see regular and keep playing around with my anti seizure tablets but you will get good days and then when you get your bad days you are like wtf now!!!!

It's like taking 2 steps forward and 3 back sometimes especially when from the outside you look fine to everyone.

In fact I do a lot of shift work and tiredness really has an effect on me so when I hear colleagues whinging about the shifts and how tired they are I'm screaming inside my head. It's even worse for me but they wouldn't or don't understand and I've got to the stage I don't even bother with them unless I have to or my mouth runs away with me and I p*** them off by speaking the truth!!!

Clare I was like you at first for taking myself off to the Dr'S or A&E and each time being told I'm ok and don't get anxious!!!!

My neurologist last month really put it into perspective and told me you do realize how many CT scans you have had, its like comparing for example having 50 or more xrays meaning the radiation involved even though CT radiation is not as strong as xrays...

Each time I went to A&E most of the time I was given CT scan because of my history and in between having scans for my mastoid and ear problems.

It helps a lot when you come across a Dr who will actually listen to you as well and not treat you like some over anxious /stressed person.

I don't come on a lot but do pop in now and again so good luck and you will be given some good advice from the site because everyone understands where your coming from even though we are all different(**,) (**,)

Hi Clare

You're probably sick of hearing it already but it is still early days for you.

Try not to worry as it is very common for us to make chunks of progress and then stall.

I think that the stalling is just as important because it gives the brain a chance to assimilate the new knowledge/skill and make it connect in as many ways as possible.

Even if it is 2 steps forward and 1 back that is still forward progress.

Keep it up

Love n hugs


I understand that it's early days but what I'm struggling to understand is how I was more or less ok and had very few signs of concussion until a few weeks ago when I got a virus.

Claire are you sure you had a virus or could it have been something else? Or if a virus something like glandular fever? Have you got into the good day/bad day cycle by doing too much on a good day? Having a cold makes you feel so much worse than before because you are already working harder than a normal person in everyday life.

Just throwing the ideas up in the air.

ClareO1986 in reply to Stardrop

I was told by an out of hours doctor while I was away from home and by my own GP that I'd had a virus. My GP also did quite expensive blood tests that showed nothing untoward.

It is possible that I'm tiring myself out. I'm in a position where I am still working so it is feasible.

I do know what you mean about trying to throw ideas around.

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