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.

Doozer,

Just an FTI,
If you use the Post Reply button at the lower left, the previous post will not be quoted. It can make it easier to reply because one does not need to scroll though a long quoted post. One can also put their reply above the quoted post for easier reading.

Please don't think about scar tissue. There is no such thing as scar tissue in the brain. Scarring is a healing action that builds up around a injury. The brain gets twp types of injury. Some of the tissue becomes dysfunctional and is allowed to die. It is not replaced. The other tissue is strained where the axons get stretched and injured so that they do not transmit information properly. Often this is due to injury to the myelin sheath that insulated the axons and/or glymph system that transports waste out of the brain.

Another problem is the brain may have an improper amount of neurofibrilary tangles. This is triggered by the injury but also genetically supported.

The dead tissue is gone forever. Any neuro-regeneration is very slow. I doubt you have any tissue that died.

You have strained tissue that needs every nutritional and other opportunity to repair and get stronger.

The one year and two year comments are meaningless. They are not supported by research. They are sort of 'old wives tales'

Many on NT have had great recoveries long after a year has past. Usually, it is because they finally decided to accept their injury and move forward in a less stressful life. That less stressful life allowed improvement. But, it is a slow process.

One way to reduce stress is to stop looking for answers. They are not there. Reducing stress and anxiety should be your primary goal. If you can get some vision assessment and needed therapy, great. There is a lot of concussion research going on right now but none has provided a protocol to improve recovery.

You asked about neurofeedback. It can help if it is the right kind. There are many kinds. It is an unregulated market so there are protocols that have no science behind them. It is expensive and time consuming with a risk of little reward.

I suggest you set three goals.

1. Get started on a brain health vitamins and supplement regimen. There is no reason to research it because the regimen suggested is the basics that should be your minimum starting point. Lion's Mane and the many other supplements that claim to help will not help if you have not covered the basics. So, start there.

2. Reduce stressors in your life. You say childcare can be rewarding but also "stressful." Can you reduce that stress level ? You should also reduce the time spent looking for concussion fixes online. The screen time is not good and the research is anxiety inducing. The only research you should do is looking for a behavioral optometrist to see if that protocol can help. Check out http://babo.co.uk/ and
http://www.eyecaretrust.org.uk/view.php?item_id=122
Tell them you are looking for help with concussion related vision issues.

3. Reduce your anxiety levels. CBT (Cognitive Behavioral Therapy) helps some. Some need meds like an SSRI or SNRI. Some find benefit from counseling.

Research shows that those who recover the best do it by accepting their condition and moving forward from that point. You will never be what you were before your concussion. But, nothing says you can't have a full and productive life. It will just be different. You may be able to return to most of your activities but in a moderated level rather than full intensity. The intense life many try to live eventually causes problems. Those of us who learn to slow down can enjoy far more of life.

Very good advice, I guess still being fair new to the 'new me' will take some getting used to, and I must admit that when I stop worrying so much and just go forward, it eases symptoms. Thanks for taking the time to help me out, can I ask what happened to you, and what your current problems are?

I have already started on the vitamins you have listed and the lions mane also. I wish you a merry Christmas and a happy new year. I have pretty much run out of questions to ask, but fee free to add anything else you can think of that may help. Thank you again, all the best.

Glenn

I suffered a severe concussion in a bike accident in 1965. I've had a myriad of lesser concussions (14) over the 50 years since until a very minor one in 2001 put my brain past its ability to recover. I no longer have much of a functioning short term visual and auditory memory, I have slowed processing speed, and a serious problem with visual and auditory processing that makes it very easy to get visually or auditorily overwhelmed. I have been following concussion research for decades.