Hey, i'm months into pcs and wanted to share my story. Also ask for some tips

What happened? I hit the back of my head against a closet just after my 25th birthday which had send me into pcs.

So the first month was pretty bad. Had tons of symptoms: fatigue, insomnia, fast heartbeat, mild tinnitus, no balace, dubble vision, clenching teeth, sound and light sensitivity, etc

I thought i just sleep it of and with rest it should get better, but that didn't really work. So i went to the neurologist. Everything came out fine and the neurologist told me i would be fine in a few weeks

Second month: still verry tired (took naps everyday), tinnitus got much worse and became constant , still some slight light and sound sensitivity, insomnia, panic attacks, depression, clenching teeth, some balance issues and mental fog. Luckily my vision repaired itself and i could see again.

Now after 3 months of resting a lot of symptoms had resolved, but some got worse for no reason. I went to several doctors and none took me seriously. One actually said that it is impossible for a concussion to last more then 2 weeks and that i was faking it.

But eureka! I went to a osteopath who took my complaint very serious. After examination she was kinda shocked..... apparently i had one of the worst neck injuries she ever saw. No wonder my concussion isn't healing. My blood flow in my neck must have been very restricted. She actually wondered how i managed to live for 3 month with such injury. Already after one session of releasing the tension in my neck the fog lifted. Finally i can think again!

Now i still have some bad symptoms like tinnitus, insomnia and severe fatigue. But i finally feel that i'm getting somewhere

What I've learned that if you suffer from pcs you should also check if you haven't sustained any other physical injuries due to the accident.

Also any tips on fatigue? I'm very limited in the things i can do during the day.

Thanks for reading!

Lebber,

Welcome to Neurotalk.

We routinely discus subtle neck injuries and how they can be a major contributor to concussion symptoms. Restoring alignment at C-1 and C-2 and reducing inflammation can make a big difference. She should have suggested icing your neck to reduce inflammation. Your sleep posture will impact your neck. Try to maintain a straight head and neck posture.

Just to clarify a term, you did not experience PCS immediately. That is just called concussion recovery. PCS is the prolonged struggles with a concussion after 6 weeks to a few months.

Your current fatigue struggles could be related to sleep. Your napping may have your sleep system all messed up thus the insomnia. You should only be sleeping at night during regular times. No sleeping past a normal wake up time, even on weekends. This helps the brain go through the normal sleep stages. It is a key part of concussion recovery. Rest and napping are only advised during the first 48 hours, not after that.

You need to find activities that stimulate blood flow to your brain without causing stress or risk of aggravating your neck. Good blood flow is as important as good sleep.

Try to ignore the tinnitus, maybe using subtle background sounds. There is not much you can do for tinnitus. But, if you can get the proper sleep and brain blood flow, your tinnitus may improve. I've had tinnitus for decades. My ears are screaming right now, likely because I just had a glass of cold milk. For some reason, cool beverages make my tinnitus worse. I can barely hear my laptop fan over my tinnitus.

Be patient. You have 3 months of non-treatment to overcome.

My best to you.

Thanks for the good tips Mark! I will definitely follow it.

The insomnia came right after the blow to my head. But i do think that the fact of sleeping to much made it worse. For the past month i try not to nap, because i felt that it was indeed more counter-productive rather then helping me. My brain probably needs some more time to restore it's sleep patern after months of abnormal sleep pattern.

Also I'm switching to a firmer mattress tonight for my neck.

Good thing you said i should do light activities to increase bloodflow. I'm ridiculously fatigued during the day and that made me scared of doing any physical activity. Whenever i went for a small walk the fog would come back and i would feel weak. But what you said made me motivated to do some light activity. I'm thinking of doing some expose and recover with mild excersises.

And yes, the fatigue, insomnia, reduced blood flow, tinnitus are probably a vicious circle i need to break through.

Thanks Mark for giving me insight on my symptoms

What did the doctor do to relieve the tension in your neck that led to alleviation of some of the mental fog?

The mental fog is not directly related to the neck issue. Inflammation is usually the issue. Some therapists (chiros, osteopaths, PTs, even some massage therapists) can reduce the tension with gentle traction and mobilization or gentle spinal manipulation or massage or pressure/trigger point or myofacial release the muscle tension. There is not one size fits all treatment. What is more important is finding the right therapist and therapy that works for you. In the experience of many, only 1 in 20 who say they can help can actually help.

Plus, you need to be disciplined with head and neck posture and even icing to help keep the inflammation down. Reducing the inflammation can increase blood flow that can improve quality of sleep and help with the mental fog.

Hey Billboby,

Kinda what Mark said. The therapist did a combination of massage and pressing on trigger points to both relieve tension in the neck, head and facial area. She actually did this for a full hour because there were several areas that had abnormal tension.

Fog can be indeed related to inflammation but for me it wasn't the case. I had some bloodwork done and my inflamation markers were fine. It was more related to the tension and lack of blood flow because of it.

You can try to get an examination by a good therapist and see what they say. My therapist also said it doesn't work for everybody. It depends on what injury you have sustained.

Hopefully it works for you

Sacro cranial therapy and acupuncture helped me immensely - 3 years on still have a top up of sacro cranial and chiro adjustment from time to time.

Management of fatigue is a biggy, sometimes there are reasons why and other times the big F hits without warning for no apparent reason. One day of overdoing it equates to 3 or 4 days recovery for many of us so factor this in when there is something you really want to do and you know you will pay the price.

Eat healthy, take Omega supplements - IMO vital - and having time out in day whereby I put on the headphones, cover my eyes with lightly weighted eyepad brings absolute peace and bliss. So ooo restful and rejuvenating.

In time it does get better than it is today.

Best of . . .

I totally agree chasan. Before i didnt believe in sacrocranial therapy, but seeing how much it helped after just 1 session convinced me. Of course it isn't for everybody. And yes the fatigue is probably the biggest struggle for all of us. For me the acceptance that i'm CURRENTLY in this situation where i have no stamina at all made it more manageable.

Also i wanted to add something on the neck issue. I was talking with someone about how adressing my neck made a lot of things better. He said, yup the neck can do that. He went to neck surgery and had mental fog, fatigue and tinnitus for months. Pcs and neck issues are often closely related. My symptoms are of course because of pcs, but according to my therapist my neck isssues are the main contributor to the problem.

The body truly is complex. I can't stress enough to get a full checkup to see if there are other problems at hand.

Lebber,

Many have symptoms come directly from a subtle neck injury. There is large overlap of symptoms between those symptoms from bad blood flow due to neck issues and those that are from the trauma to the brain. Researchers discovered that those with stronger necks had fewer or shorter lasting symptoms. They claimed that a stronger neck reduced the jarring to the head. It is more likely that those with stronger necks suffer less or no neck injuries.

My last head injury was 90% neck. But, my PCS like symptoms were worse than any of my prior 13 concussions. I was a mess until my neck was treated 18 months later.

Regarding cranialsacral therapy. Research shows the spinal manipulations can be very beneficial. They can show no direct benefit from cranial work. The research I read was reported by an osteopath who is also a professor at a major osteopathic college. This research is why they changed the term Cranial Sacral Therapy to Osteopathic Manipulation. They are leaving out the Cranial part. I wish I had save a link so I could post his report. This does not negate any placebo value. Hands on touching is well known to have value in stimulating healthy responses regardless of actual therapeutic value.

Thanks for the info Mark Well before my concussion i already kinda knew that having a 'weak' neck can put you at risk for concussions. I actually have some limited work experience with acquired brain injuries believe it or not. But what you said made me understand it much more. I didn't realise that the neck can be such a big part of it all.

And for the therapy. Well as a psychologist i also wondered if it was placebo or not. I think partly real effect, partly placebo. What went better for me? No more fog, very significant drop in headaches/tingly brain feeling, weirdly also right after the session my right ear popped and the pressure readjusted itself. I have no idea how that last improvement came. Maybe coincidence? What was the placebo part of it? The therapy made me relax, way less stress. And stress makes everything worse. Now i can manage my tinnitus better and relax more, be more happy.
I did have a spinal adjusted between my shoulders at the same time. So that most likely contributed as well. Unfortunately i will have to wait for spinal adjustment in my neck. According to the osteopath the soft tissue damage is so bad, adjusting the spine at this moment is a risk for further injury. So I'll have to wait for that to happen.

Things are slowely getting better . My sleep is starting to get better, tinnitus bothers me less and less. The only thing remaining is the severe fatigue. I can only have patience and believe i get better. Compared to the first 2 months, things actually have drastically improved.

Going through this is a humbling experience. Before i thought that i knew a lot about the brain. Boy was i wrong. I remember someone once told me: "you can never understand what it is, unless you have brain injury yourself". So true. I'm glad to have joined this forum. It made me even understand more. And luckily we have people like Mark who share their knowledge