Hi all,

I am new to this forum but have been reading it since my injury happened.

Basically, just over a year ago, I had been a self defence practitioner for 7 years. I practiced this for such a long time with very few injuries and no major injuries due to the stringent safety rules that the club practices. Unfortunately, I made the mistake of training with somebody who was not very conscious for the safety of others during training and I managed to catch a thump to the right side of the back of my head. This seems to have rattled my brain which hit both sides of the inside of my skull right side to left side, which felt odd at the time, but I didn't lose consciousness. I felt fine after the session and thought no more about it. A mild headache woke me from my sleep that night, followed by nausea the next morning, that was Monday. By Wednesday, these feelings still hadn't gone away, so I went to A&E and waited to see a Doctor. After giving me a very brief check over, she said it's nothing, just muscles and unless you are slurring your speech, you are fine.

In the weeks that followed, I took the Doctors advice to heart and thought that I must be fine. I returned to work, I went for a run, I watched t.v and played video games, I went to the cinema (in 3D). Basically, I did many of the things that I love, but now know I should not have done, because I was told "it's just muscles, you're fine" by a supposed medical professional.

From then on my brain hasn't played ball. I developed a very unpleasant pulse on the right side of my head when I tried to sleep. Massive headaches when I tried to drive anywhere. What I called "sleep breaks" in which I'd wake up at around 3am, usually shivering and panicking with a weird feeling in my head. Brain fog when I woke up. Tingling at the site of injury. Feeling weird and the world sounded odd, kind of more aggressive than usual. Feeling pressure at either side of the back of my head. Upper neck symptoms. I could no longer tolerate screens of any kind, so my freelance graphic design went out of the window, games, films, t.v all gone. Drawing on paper seemed to bring out worse symptoms, so that was out. Reading, gone. Socialising was difficult and would make the side of my head burn. Basically, most of the stuff I enjoyed in my life is gone, and I'm at a loss as to how to alleviate the boredom. So this leads to bouts of depression and feeling down about it all.

These days, some of the issues still linger. I still have neck symptoms, still have the feeling of pressure either side, still cannot tolerate screens for as long as I should, although I have seen many improvements in the first year, it still lingers to the point where it's a depressing slog. Of course, this affects my mood, so on a good day, I'll be like the old me. I'm a married father of two young kids. So on my good days, I'll play with the kids, we will go out and it will be like nothing had happened. On my bad days, I'll be a short tempered grump who moans and is generally no fun to be around. Even I don't want to be around me on my bad days. It's affected my life negatively, for sure, and I've had some very, very dark moments and dark thoughts.

Things I've tried are, acupuncture, chiropractor (these two seemed to just want my money) I went for 6 sessions of HBOT, which seemed to turn me into a zombie when I came out for a while, so I stopped. I've seen 9 Doctors and a Neurologist, who all basically say, "you'll get better on your own, it'll be fine". I take a decent quality multi vitamin daily and a high quality krill oil, which I don't know if they help or not, but I take them anyway.

One thing I will say is that this has gone away, a few times. I go back to normal. No symptoms, no depression, no worry, great sleep. It's like heaven, I call them my little holidays, I am happy again. I play with my kids and my wife doesn't hear me grumble and moan anymore, it's wonderful. I feel like my old self. During these times I enjoy my life again, rather than just exist. But inevitably, the old black crow (that's what I've named it) comes and settles back on my shoulder, and the slog begins again. It's a sad state of affairs and it's affected not just me, but everyone in my family and friends. No man is an Island, as they say.

Question is, was my Neurologist telling the truth when he said this will go away on it's own, or was he just trying to get rid of me because he knows he can't do anything about it? I can function, but when I say function, it is on the level of a robot. This thing has taken my life quality to the bare bones, and I'm tired of it. Does anyone know if there is anything else I can try? I do go for daily walks to keep on top of my exercise (I was super fit at one stage) I try to keep positive, but reading about other people struggling for years doesn't help at all. Is this really forever? I'm not sure how I'll cope with that!

Is biofeedback worth a go? I also hear that something called Lions mane helps with nerve issues. Any suggestions or help would be very much appreciated. Apologies for the long post, but this is my story in a nutshell.

Thanks for your time.

Doozer,

Welcome to NeuroTalk. Sorry to hear of your struggles. Apparently, you have not read much on NT this past year. The multi-vitamin is just better than nothing. They are designed to prevent malnutrition, not to improve health. You should read the Vitamins sticky at the top. B-12, a B-50 Complex, D-3, Mag citrate, and a few others should be added to the multi and fish oil.

You good days are healing days. They are not days for pushing your limits so that you return to bad days. You need to moderate your activity levels on these good days so they continue.

You mentioned an upper neck issue. What are you doing to take care of your neck ?

What are you doing to help with your recovery ?

The Doctors advice was OK. 85% recover spontaneously. But, you should have been resting for the first few days or even a week. Live and learn...We all do it.

You attention to detail in your post suggests you are prone to being intense and detail oriented. This personality style is difficult with PCS. There is a need to moderate thought patterns to just let life happen rather than try to expect life to happen in a certain way. I understand the needs of a family. Been there, done that. But, life can be lived at a simpler pace.

In you self defense training, did you work with head gear and have some contact training ?

Are you continuing to train ?

What is a normal day's activities like ?

Hi Mark, thank you for taking the time to reply, I appreciate it.

I will definitely work on a vitamin regimen, I still struggle with screens for prolonged periods, so I have only really been able to read bits and pieces on here, usually focused on other people's recovery in the hope I may find some hope. Probably 9 months of the year I've had this I've been only able to read the forum for a few minutes at a time.

So the days that I feel ok, means that my brain is healing? I find that very encouraging. I will make sure that I reel in activity on these days to help myself in that case. I do tend to try and do things I like doing, which is probably slowing me down in the long run.

I tend to still get issues with my neck, which come and go. It's not pain, more discomfort, and very annoying. I'm not really too sure what I can do to take care of my neck other than just gently put it though some motion to try and ease the spasms. You'd think that over a year of seeing Doctors and a specialist, they would have given me more advice!

In terms of helping my recovery, I am eating relatively healthily (fruit and vegetables every day) I have cut out pretty much all processed foods. I have cut out foods containing a lot of processed sugar. I generally only drink water. I don't drink, I don't smoke and don't take drugs (and never have). I go for walks on a daily basis and I try to keep in contact with friends and family, which helps keep my spirits up. I will start looking into a supplement regimen also, this includes trying Lions mane, which I've heard good things about.

You are right, I am a very detailed person. I like neatness, I have a large range of imagination, I'm fairly switched on and am a heavy brain user, I like to play chess and board games, research, watch general knowledge on you tube and think up ideas, theories and stories. I get bored easily and can suffer from stress when the kids are playing up. Not being able to do much in the winter (summer is better) ensures that I tend to think on my condition more. So when I was 100% winter or summer made little difference, I was always busy. Now much of the time I feel like a caged animal! This probably doesn't help, but what's the alternative?

We didn't work with head gear in sparring as it tends to make people hit harder, but we did spar with very padded boxing gloves, light contact only. So, in truth, I've probably taken a few sub concussive blows in my time. I also fractured my skull when I was an infant, but the extent that affected my brain isn't known. I do know that my c1 upper cervical is not on straight, however, the neurologist didn't seem concerned at all about this, and to tell you the truth, I think it was always like this.

No. I have never gone back to training and I never will. My brain is much more important than martial arts, in fact, if I'd have known what I know now, I'd have not taken it up in the first place.

Day to day living, I'm functional. I can do anything except the things I like doing. Which is kind of like water torture.

A vitamin regimen is meaningless unless it has the brain health supplements I suggested. B vitamins are important for remyelination and to help strengthen the blood brain barrier. Lions Mane is supposed to help with remyelination, too. But both regimens need to be maintained to receive the benefit. Lions Mane benefit drops after a few weeks off the Lions Mane. Neither is a Try it and see unless you consider many months as your trial period.

There are ways to make the computer screen easier. fLux can dim the screen or change the color temp. Worth a try. Font size can help as well as screen size to line lengths do not exceed 60 to 80 characters. You use of frequent paragraph double spacing suggests you may have visual tracking problems. Not uncommon. A good exam by a neuro optometrist or behavioral optometrist may help.

I can watch as much low intensity TV as I want but I need to listen to the audio with headphones. If I listen to the room speakers, the audio creates a risk of over-stimulation or fatigue. At the least, I struggle to follow the dialogue.

Learning how to understand your visual and audio stimulation limits can go a long way. You comment about the children playing suggest you have an audio over-stimulation problem. Have you tried using headphones or ear plugs to reduce audio stimulation ?

Doozer,
My daughter had a lot of over-stimulation both audio and visual.

For visual stuff, She went to Cal Berkeley eye center which did amazing testing. She has tinted prism glasses and can now read where as she couldn't before. I don't know where you live but maybe they can direct you to a center that does the same type of in depth testing.

Mark's vitamin sticky is good.

It does take time,

I will do the vitamin research and stick to it. I don't have anything to lose by doing so. I live in the uk, which I gather isn't the best place to have a concussion, we don't seem to have much in the way of help here other than big standard neurologists, and on the nhs it's taken me a year to see one of those. Who did nothing.

My main worry is being stuck like this, fairly common I'd imagine. If I had a date when I'd be better by, even if that was 3 years from now, it wouldn't be as bad. But nobody knows, even the professionals. Had a bad night last night, woke up feeling like my head was under water, it's very frustrating when I thought I was making progress only a week ago.

Can anyone tell me why my symptoms go away completely and then come back? It feels like I'm being toyed with.

Thanks for your replies and suggestions so far.

Hi Doozer,

I am over 2 years post concussion and still suffer regularly from PCS. I am very much like you and kept needing a date as to when I would improve. After I passed the 1 year mark and had my brain doc tell me that from here it would be a very very very slow process, not something that we can measure or really notice.

Those good days, for me they are because I was listening to my brain. I didn't do too much, push myself and try to act normal. Then if I slept well I would wake up and almost feel like my old self. Problem is we push ourselves on those days so we fall back into symptoms.

I try to take it one day at a time, it is the only way I am motivated to keep moving forward.

And yes get on those supplements ASAP, they really do make a difference.

Ah. Well, that doesn't bode well. I guess it's likely that I really am stuck like this. Can I ask what happened to you? The hit I received didn't even seem that bad at the time, I think that it's what I did after which has really dragged this out. Has anybody ever tried or know much about neuro feedback? I have a book on it and many people say that it really does work, any thoughts on this? I know it's pretty expensive.

Doozer,

The UK is not at a disadvantage for people with concussions. There is not anything the doctors can do for you. Waiting to see a neurologist is just better than worthless unless you need a neuro to refer you to specialists.

The specialists you can seek are"
Vision specialist, This can be a behavioral optometrist or neuro-ophthalmologist. The BO is likely better than the NO for most people with PCS. Plus, It is easier to get an appointment with the BO than the NO. Tinted lenses, prisms, vision therapy, etc. can help.

Vestibular therapists if you have any dizziness. It didn't sound like you do.

Behavioral therapist, psychologist, etc. to help you accept your current condition and lower the stress in your life.

The most important specialist to engage is YOU. You have the most insights into what is happening. Accepting that these bad days are the new you is the first step. Any improvements or good days are celebrated but not taken for granted. Just as we have triggers that lead to bad days, we have triggers that lead to good day. Good sleep, low stress activities, low emotional stress days, low stress productivity, etc.

It can be amazing how a day of being productive without anxiety or other stress can set us up for a good day. I think this comes from learning how to pace our productivity and moderate our environment. You had a good night sleep. Your boss is leaving you alone to just get your work done. Your co-workers are being productive with their own tasks. Any problems are resolved without stress. The result can be finishing the day feeling great.

If we look back, we can see how the activities and environment of the day contributed to a good day. Then we decide to try to replicate that day with our personal attitude to keep stress low.

I learned decades ago that being in a hurry rarely gets more work done. The mistakes and screw ups can easily eat up any savings in time. With PCS, those stress induced screw ups are a given. Being in a hurry is the worst stressor for PCS.

I hope you can learn to recognize the positive and negative triggers in your life.

Do you ever spend one on one time with your children ? You might find that to be a good trigger. It can be an opportunity for them to see a part of their father that they do not usually see. It may improve how they see you and help you when you are having a bad day. It would be important for that time to be in a quiet place without interruptions or any hurriedness.

You commented about the future. "My main worry is being stuck like this, fairly common I'd imagine." Your injury is for a lifetime. Your symptoms are not necessarily for a lifetime. Most will resolve with adequate low stress time and maybe some help by a specialist. Some will become manageable because you have learned work-arounds. Either way, you can still live a full life. It just may be different that what you originally expected.

Thanks for your insight, I am getting some very good feedback from everyone here. I am now the primary career for our kids, since I was no long able to tolerate monitor screens, it seemed the next logical step to make up my income from childcare fees. I spend most of my time one to one with the kids, this being my current role in the family is very rewarding but can be stressful at times.

In researching of this topic, I have found many conflicting information and opinions on concussion. Some say "over 1 year and that's as good as it gets" others say 2 years, others still say that the brain never stops adapting and changing. I think that probably the last one is true, whilst there may be microscopic "scarring" of the brain tissue due to an insult, I think the body is much more dynamic than we currently realise.

My injury seems to be (thankfully) of the lesser type of concussion, only going by my symptoms, which, whilst very annoying and at times depressing and uncomfortable, are nowhere near what some people I read about suffer. I honestly admire the people with severe concussion symptoms.

One thing I will say that has very likely slowed down my recovery is the fact that my wife had a major operation to remove a brain tumour this year. Obviously this has been a huge, unimaginable amount of stress and emotional termoil for all of us, thankfully it turned out that the operation was a success and she has made a rapid recovery. Much more rapid than me, I might add.

So with all of this in mind, it may be an idea to go back to the neurologist and ask to see some specialists to help things along. When you say that "my symptoms don't have to be for life" being that this seems to be lesser symptom wise than many concussions I have read about, do you think that it's likely that my symptoms will eventually vanish, leaving the scar tissue on the brain?

I really hope this is the case, as I am finding it very difficult to adjust to not being able to do much of anything without being on symptoms.