New here + get your neck checked!
 

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 :cool:

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 :eek: 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 :hug:

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 ;)

Yes, the cranial work could have a placebo effect. There are massage points on the skull that could feel good. There was no cranial plate movements. But, the spine, from the bases of the skull down can be manipulated. Unlocking a misaligned cervical vertebra could provide some quick relief.

A chiro who knows upper cervical chiro could help you with your neck and upper back. A physical therapist with the right skills could also. For me, I needed gentle manipulations followed by ice and then I had to be disciplined with posture during sleep. I was a mess from C-1 to T-4.

We have to combine some therapeutic help and our own discipline and patience to see improvement.

Sounds like you are improving.

Looking at all the possibilities
 

I was in a car accident back in 2015 and didn't develop any symptoms until 5-6 months after. Long story short, I came home one day and experienced a vertigo attack which lasted around 5-10 minutes and felt like I was having a heart attack. Ever since I've had lite dizziness and brain/eye fatigue. I've been researching more about neck injuries as the main culprit and I stumbled on something called VBI (Vertebrobasilar Insufficiency). Since I'm only 34 and don't smoke and generally in good health I would like to know what other board members think about this condition as a self-diagnosis? I've gone through all of the exams and scans and every time the results came back negative for any problems. I'm 99% positive the whiplash from my car accident is the main cause of all my problems and not so much a neurological manifestation. Should I completely rule out VBI or go back and get another CT and MRI of the brain or just accept that my brain is still healing after 2+ years and it might take many months or years to fully recover? I'm also a strong advocate against taking prescription pills and the first thing my neurologist recommended is amitriptyline which I will not take. I've been seeing improvements with natural supplements and have not yet reached a point where I can't function without meds.

SPNS,

Welcome to NeuroTalk.

You may very well suffer from VBI. But, it is a broad concept. The question is What is causing it? Upper cervical inflammation can cause reduced blood flow.

The subtle neck injuries common to concussions and whiplash are often not visible in images. The radiologists who read the images do not often recognize the fine differences of such injuries as abnormal. Upper cervical chiros may be able to identify them. There is a motion imaging technique that may show instability.

You may have suffered a ministroke when the dizziness manifested. Certain neck movements can cause them. Small pieces of plaque in the vertebral arteries can break free and cause a ministroke. They do not show up on imaging either since they are usually transient. My wife likely had a ministroke last spring and recovered progressively over 24 to 48 hours. She felt like everything was leaning to the left. She passed all the vestibular tests.

A high T MRI angio may show something but it would be very unusual. The treatment would be blood thinners like aspirin to prescription versions. A CT Scan would be minimally useful to rule out a bleed. At this point, any bleed would have healed.

I doubt any doctors will give your complaints much credibility unless they are evident in a neurological exam. Nystagmus, balancing, finger to nose and other tests would be commonly done.

It's a tough problem.

Mark, thank you for taking your time to reply and I hope your wife is doing better. I never thought much of the first and only vertigo attack so far (hopefully non more) but you are right about it being a mini-stroke or "transient ischemic attack". The description is right on makes the most sense "A TIA is like a stroke in that it produces similar symptoms, but it only lasts a few minutes and causes no permanent damage." It's strange that 2 neurologists I've seen did not mention TIA as the reason why I felt vertigo during the first attack. However, one of my neurologists was onto something when he prescribed Nimodipone. After reading your response I believe he was on the right course to treat my symptoms. I guess at this stage any bleeding would have healed by now as well so further tests might not reveal anything new. I will do some further research on taking anti-platelet drugs and possibly an angiogram as a last resort.

I am doing much better :) I'm not out of the blue yet. I still wake up every hour or more most nights and simple things like unloading the dishwasher completely wear me out. But mentally i feel so much better. I guess accepting it and a 'go with the flow' attitude made it much easier to cope.

When i feel that i'm not progressing i look at things month by month. I wrote all my symptoms down according to each month. First month i could fill a whole page, second month 3/4 of a page, third month 3 main symptoms and some other mild issues that don't bother me so much. I'm also lucky to know someone who fully recovered from pcs after +2.5 years. So there is no real end date to healing.

@Mark I wish you and your wife all the best. You both have to endure so much.

Lebber, If you wake up frequently during the night, this is a common symptom of sleep apnea. Lack of proper breathing causes the brain to struggle and waking up is often part of that as the brain fights for oxygen. Do you wake with stressful dreams? Have you considered a sleep test ? The home sleep test could be worthwhile before doing a sleep lab test.

For me, the dishwasher was a challenge. Too much head and neck movement, especially the tipping the head forward.

SPNS, Yes, a ministroke is often a TIA. But, a ministroke can last longer. TIAs show no symptoms shortly after the event. Neuros often do not mention TIAs because they cause alarm and anxiety and are hard to treat. With proper high resolution imaging, some TIAs are observable as they leave very small pockets of damage or reduced flow. But, the imaging does not change treatment.

It would be important to determine if the stroke is a bleed or a blockage. You can treat a blockage with blood thinners. Blood thinners can be a problem if you have a bleed.

A Doppler ultrasound of the carotid and vertebral arteries could show plaque and blood flow issues.

I'd back away from strong meds until you have a more acute problem with chronic symptoms. There are risky side-effects. OTC blood thinners can be best.

@Mark, i was wondering if i had sleep apnea. I have considered a sleep test. But for now i can't afford much after so many specialized check ups. Didn't know there were home test. Good that you mention.

Well i did have very realistic nightmares at the beginning. But that's gone. Still more nigthmares then usual, but that's all about bumping my head again in my dreams. The dreams themself don't wake me up. I don't know what you can make of it. I don't know that much of sleep apnea.

I do have the idea i sleep much lighter since my concussion. I usually wake up so much because i hear something. Before i could sleep through everything.

There are some nights i sleep semi well. I can sometimes sleep 4 to 6 hours on end. It's difficult to find what's wrong because my sleep patterns has changed many times since the concussion.

The biggest problem is that i don't get quality sleep.

Thank you for your insight Mark! In a short period of time you've been more helpful than most specialists I've seen with providing answers.

Lebber,

If when you wake, you remember a stressful dream, not necessarily a nightmare, it can indicate a breathing issue.

Have you done everything you can to be comfortable in bed ? The PCS brain is more sensitive to minor sensations. Have you tried sleeping with foam ear plugs? Many of us use them.

You should be trying to regulate your sleep patterns by getting up at the same time every day. Do not nap during the day. Shut down stimulation levels an hour or 2 before bed. Do not get in bed unless you are sleepy. You should fall asleep within 5 minutes. If you lie awake for 10 minutes, get up and do something mundane until you feel sleepy again. Do not fight to go to sleep.

Do not read anything that you cannot finish before going to sleep. Get all of your tasks done. If you have tasks to do in the morning, set them out or write notes about getting the task done. You do not want your brain thinking about "I need to put xyz in the car before going to work" or any other things you would normally remember over night. This routine of getting things ready for the morning can be part of your settling your brain down.

If, as you lie in bed, a morning task comes to mind, get up, write a note or put the item on the counter. For me, I might have a thought that my brain wants an answer to. I'll get up. Find that answer and write it down.

I sleep in all cotton. No synthetics, too much sensation to trigger my brain.

I used to have to be watching a movie that I had seen before to get my mind into the sleepy mode. I still do sometimes but not always. I would watch a simple music video or listen to the same singer. Foreign language singers worked well for me because i was able to not focus on the words, just the music and beautiful voice.

As you can see. Sleep is important and can take work to do well. Until I figured this out, I dreaded trying to go to sleep or stay asleep. Now, my systems make it easy.

Thank you for all the good tips Mark! I really appreciate that you take the time to adress my problem.

Lately I'm very serious about my sleep hygiene. I always kinda did, but now it is really necessary. I use my bedroom only for sleeping nothing else. Also limited furniture so there isn't to much stimulation. I always go to bed at the exact same hour. No screen time hours before sleep, only some radio for tinnitus. Unfortunatly i can't wear earplugs because of the tinnitus.

I guess i have to find a way to regulate my sleep pattern again. I think when i get over my fatigue, physical excersise will help a lot.
It will probably get better with time and finding what works best for me.

Best wishes

It is more important to get up at the same time than it is go to bed at the same time. This is information I learned from a Neuro Rehabilitation sleep specialist. Wake up sets your go to sleep time. She told us to focus on get up time and let go to sleep time (sleepiness) come more naturally. You should be getting up at the same time every day of the week. No sleeping in on days off unless that staying in bed in the morning is due to bedroom activities. Those bedroom activities would be better before going to bed. But, you should wake up at the same time.

I have horrible tinnitus, louder than my laptops cooling fan and most ambient noise. I do better with the tinnitus that my wife's occasional snoring so I keep ear plugs handy. It takes work to learn to ignore tinnitus.

There are two issues, sleepiness and tiredness. Sleepiness is a brain issue. Tiredness is a body issue. Exercise can help with tiredness but not sleepiness.

Mild physical activity will temporarily reduce or overcome tiredness but it will not affect sleepiness. Intense activity can release adrenaline that can disrupt sleepiness.

I never realized sleeping was so complex but for an injured brain, it becomes a critical issue.

Alright i will discipline myself to wake up at the same time everyday. I didn't know that it was more inportant than sleep time.

What you said about sleepiness and being tired is very interessting. I was very sleepy for 2 months. Now I'm very tired, but not sleepy anymore. Actually I'm way more tired then in the beginning. I think lack of phsysical excersise and of course lack of sleep is the main culprit. My osteopath also thinks my brain must have healed well by now (can't tell for sure) but my biggest problem is physical (neck and muscle tension).

I got my c2 adjusted today so I'm excited to see progress.

Yeah getting over tinnitus is not easy. I'm at a point where i can tolerate it. I don't even mask it anymore. And sometimes i even forget it's there. Despite i can hear it over tv and stuff. But wearing earplugs is still something i can't do. But i will in time. It's not my biggest worry :)

Sleepiness is a part of the daily circadian rhythm. One would not feeling sleepy all day or for a week.

One can feel tired without being sleepy. The purpose of getting up at the same time is it helps the body set that sleep clock for sleepiness to set in 14 to 16 hours later. Sleepiness is triggered by awake time.

The mental fatigue of PCS is an entirely different issue. But, it can be managed so it does not interfere with the sleep cycle. A very short nap or doze can reduce mental fatigue without messing up the sleep cycle by much. 5 to 10 minutes should be the max.

Mental fatigue is often the result of lack of qualify of sleep. For me, it was a result of sleep apnea that also left me tired during the day. I would struggle to think because my brain was still full of the toxins from previous days.

A common problem with sleep is having food energy to use during sleep. Some people have a blood sugar drop 7 hours or so after a meal. This can interrupt sleep. I have to have 150 to 200 calories before bed. A slice of cheese with some crackers, some raisins and nuts, a piece of toast with peanut butter on it. I have a snack and 30 to 45 minutes later, I am ready for sleep and I will sleep soundly for 6 to 7 hours.

Ok thanks for the many tips on sleep. I will definitly follow them, since sleep is so important. I also felt that eating a snack in the evenening helps sleep.

Its only been 2 days but i don't feel any pain anymore since the neck adjustment. It feels like I'm in the last stage of recovery. If i can get my sleep right, then the fatigue would get better and break the vicious cycle.

Btw, do you sleep completely natural? I mean with not sleeping pills what so ever. My doctor gave me benzos, but i know that is a bad idea when you have a concussion.

I was put on benzos in the beginning because my undiagnosed sleep apnea was causing me to have seizure like movements. I was switched to gabapentin at 1200 mgs. I am down to 300 mgs. It helps my body let go of sensations so it does not twitch from them. I had a occasional restless leg issue. I also was sleeping with tensed muscles. With the gabapentin, those muscles relax.

Yes, benzos are not good. Gabapentin should also be limited to small doses.

Now that I’m off pain pills which was horrible idea, I can’t sleep. Ambien and Benzos make me too foggy the next day but I at least sleep. Without them very hard to get to sleep and I wake up at 3am.

How is gaba in regards to fatigue/fog next day. I was on 200mg a few years ago but forget what it was like. Now that I have 2 little ones I can’t function.

I have no side-effects from gabapentin. Never have even at the higher doses. I take it an hour or two before going to bed. I also need a small snack to get my blood sugar in a sleep mode. Crackers and cheese do me well.

If I forget to take my gabapentin, a few hours later, I am wondering why I am not sleepy yet. My mind wants to pay attention to too many things. Then, I take it and slowly my world settles down and all of the things my mind wants to pay attention to have faded away. Now, I can choose to let go and go to sleep without any effort.

The gabapentin does not make me sleepy. It lets me become sleepy if I choose to let go of the day. If something comes up that needs my attention, I can still be on top of my game.