Hi everyone,

I’m in desperate need of some answers and treatment direction. Late 30's male living in Ontario Canada. This is my first post. Anyone know any good concussion specialists in the London/Toronto area?

History:

Major concussion from being hit with a softball on top LEFT side of head in June 2013. Another sports related concussion less than a month later. Went back way too early; I was still having some symptoms. CAT scan in 2013 was normal.

Had about 5 more concussions periodically over the last 6 years (mostly sports related).

Other than headaches and other classic concussion symptoms, I have neck stiffness/cracking/creaking/tearing. Pain back/base of my head/neck. Tingling on LEFT side of head when shrug my shoulders. LEFT ear popping when I yawn or stretch my jaw. Constant LEFT ear ringing for last 18 months. Went to chiropractor for several months in 2017 to adjust neck, but made it worse. Now I can literally hear a “tearing” sound in my neck every time I move it.

MRI of brain in February 2017 and MRI of neck in June 2018. Brain scan normal. Neck MRI mostly normal, showed moderate narrowing of nerve pathways LEFT side - family Dr. was not concerned. Subsequent MRI of brain in August 2018 was normal. To rule out sinus issues (where I normally get my headaches and pressure), CAT scan of sinuses in September 2018 was normal.

Went to neurologist in October 2018. Told me he can’t help and I will have the headaches the rest of my life. He at least admitted he had no concussion training.

Major Concerns:

Seem to get new concussions or aggravate symptoms easier and easier (after driving over pot holes/bumps, light/moderate bumps to head/body or moderate strenuous physical activity – lifting heavy things, snow shoveling, etc.). It now seems that any moderate jolt to my body causes problems. Other than a few little minor bumps, I haven’t actually had a major hit to my head/body in over a year and a half.

After some “triggers” (mostly driving over potholes, very bumpy train tracks, etc.) I get a sharp localized pain/pressure top left side head in the exact spot I was hit in 2013. It’s not a headache, it’s just a painful/puffy/inflamed feeling. Feels like this “spot” is damaged and over sensitive to pain and any over stimulation (vibration, bumps, jolts to the body, intense mental strain, etc.). This exact spot and the left side of my head is also often tender to the touch after being “aggravated".

Then shortly after the trigger I feel a tingling sensation in my sinuses/teeth/forehead/bridge of my nose that eventually leads to a major headache in my forehead. At which point my head feels completely inflamed, tight puffy forehead/sinuses etc. Then it’s super sensitive/painful and I “feel” every bump on the road when driving, every jolt etc. If the trigger is real bad, it gives me nausea as well. These symptoms can then last for days, weeks or months before they completely subside, it all depends on how bad the trigger was.

Not sure if my symptoms are from permanent concussion damage, multiple impact syndrome, post-concussion syndrome, neck damage, anxiety, a combination of all these, or something else.

With all the concussions I had in the past, I was always able to slowly get back to jogging and physical activity. Now it’s been about a year and a half and I can’t even get up to a speed walk or do anything moderately physical without getting symptoms. I can however go for normal paced walks no problem.

I feel like I can’t over exert myself physically or mentally at all without flaring my symptoms. I can get some relief and function at a moderate level if things are calm and “steady as she goes” and I don’t experience any “triggers”, major stress, or take part in any moderate physical activity, etc. It seems like if I’m super careful and limit my “triggers”, I can nurse myself back to a very modest tolerable baseline. But as soon as I have another “trigger”, or over exert myself in any way, I’m in crisis mode and struggle for days/weeks again.

My ability to remember new things is fine. My high-level cognitive function/intelligence/comprehension is still good. My ability to read is still ok, but much slower and often gives me a headache. My short term memory is terrible however.

Can anyone provide some insight on this and/or suggest some treatment options? I guess my biggest question is Am I getting new concussions all the time, is something else going on here, or has my brain just reached a level that it can no longer cope and properly repair itself. Also, should I be trying to push myself harder to "expand my baseline" or should I be listening to my body and slowing down more?

I realize I will never play sports or do any major physical activity again. I just hope that with the proper treatment, I can somehow get back to a decent quality of life and maybe even go for a light jog once and awhile and drive down the street without any issues. I'm trying to be realistic and really do have modest hopes/expectations. Any help would be greatly appreciated.

Hi Steve,

As a preliminary answer, I will suggest two things that several posters on this forum, myself included, how found helpful in dealing with this sensitivity to bumps.

The first is an anti-inflammatory diet. You can find lots of information about such diets online. Many posters here report significant relief from sensitivity to bumps after starting anti-inflammatory diets. For me the diet has been by far more helpful than anything else I've tried.

The second suggestion is aerobic exercise, starting light and gradually ratcheting up the intensity as you (with any luck) become more tolerant. Have you tried using a stationary bike or elliptical? When I first started trying to work out, I would be absolutely demolished by lifting and high-impact cardio (e.g. jogging), but I could tolerate low-impact cardio reasonably well.

There are many studies that show benefits of aerobic exercise for post-concussion symptoms. Anecdotally, I will join several others on this forum in confirming that exercise has reduced my sensitivity to bumps, and some other symptoms too.

These are just two preliminary suggestions. No doubt you will get many more from the other forum-goers.

Thanks so much for your reply, much appreciated!

I was actually giving some thought about trying an exercise bike, light swimming or something similar. I was just a bit hesitant that this would make my symptoms worse. I will take a leap of faith and give it a try by starting off very easy.

I find it curious that I can walk 15K/20K steps in a day if I push myself and my head is generally ok, I'm just a bit fatigued. But as soon as I try a speed walk or a very light jog I have problems. Perhaps its the jarring motion on my neck/head with these activities. Maybe the bike will work better for me as it should eliminate some of this.

Thanks for the idea about the anti-inflammatory diet, I will definitely do some research on this and give this a try as well. I've been struggling for a year and half with this sensitivity and I'm willing to try anything at this point. I can't even drive in a car on moderately bumpy roads without getting a headache and aggravating my symptoms.

Glad to hear others have had similar problems that have improved a bit. It's good to have a little hope.

Thanks again and take care.

It might be worth trying good headache medications to help with reading. Post-traumatic headache and migraine disorders are common, and in my experience, undertreated conditions.

Also, I have to do all my reading on my smartphone or Kindle paperwhite bc wider margins overstimulate me and exasperate my migraine.

Your comment about head/neck being jarred is worth investigating. Many concussions create instability at C-1 to occiput and C-2 to C-1. The inflammation in this area can trigger a myriad of symptoms.

When riding in the car and you see a bumpy area, roll your shoulder and head forward. This will increase the shock absorbing capacity of your spine.

It took me years of discipline to get my head to neck connection stabilized. Sleep posture was the most important.

Thanks Hamncheese. I normally only take Ibuprofen when my symptoms get really bad. Is there anything different you would recommend?


Thanks very much Mark! I will give that a try when I’m in the car next time.

I think my neck is at least part of the problem. Every time I do anything even remotely physical, my neck starts cracking shortly afterwards and is painful at the base of my skull/neck. As mentioned, I can also hear a tearing sound every time I move it. Just so strange that nothing really showed up on the neck MRI. Who would you recommend to explore the C1/C2 instability further? A chiropractor, neurologist, or some other kind of specialist?

I’ve read some of your other posts about Multiple Impact Syndrome. Do you think this is a possibility in my case because of so many concussions in such a short period of time or is this just PCS? I really feel like I’ve hit the wall and I’m past the point of no return. For the last year and a half I’ve basically felt like I’ve had a permanent concussion.

Any minor jolt or strain to my head is problematic. Even sitting down on a chair too hard, slipping on something, missing a step, driving in cars, shoveling light snow, bumping into someone, lifting anything moderately heavy, etc. I had to buy a snowblower and eliminate basically all physical activity except walking and cutting grass.

The best way I can describe it is I have a “deep extremely painful headache just below the surface” that is always there hiding in the background (which gets aggravated super easy). If I’m ULTRA careful, and eliminate absolutely all triggers, I can feel moderately OK and can get through most days. The moment I try to push myself to do anything moderately physical, or very mentally taxing, it’s a problem (Mostly from physical activity).

Lately I’ve wondered if this was maybe a spinal fluid issue, blood flow problem, neck issue, multiple impact syndrome, plain vanilla PCS or something else. It just feels so different than the typical concussion symptoms I had previously.

The irony is I have disability coverage and can’t find any doctor that actually understands what I’m going through to get a proper diagnosis. So I’ve been dragging myself through every day hanging on by a thread. I have a relatively low stress desk job and that is even getting very hard to cope with. I think I’m finally past the denial stage and starting to accept what I’m actually dealing with. I’m just trying to make some sense of this, and get the proper treatment and diagnosis.

Any additional insight would be greatly appreciated.

There is a special x-ray series that takes a live moving image of the neck as you move the head. It looks at the stability between C-1 and occiput (base of skull)

Look up myoworx.com in Guelph. Well worth checking in with your condition.

The Ontario NeuroTrauma Foundation may also be able to direct you to help.

Nobody will see the instability with CTs or MRIs. A very skilled physical therapist may be able to help you with some gentle traction and mobilization.

An upper cervical chiro may help

BUT, most of the treatment is self-treatment. Sleeping in straight posture with no head lift. FOR MONTHS AND MONTHS. Strained ligaments take a long time to heal. Some neck strengthening exercises, static exercise, NOT range of motion exercises may be in order.

Hey Steve15,

Well, if that allows you to read when your symptoms increase, maybe you don't need anything stronger.

But there are a lot of more effective headache medications a neurologist/headache specialist would likely try if you were interested in trying some to improve functionality. It seems like they often prescribe both preventives to lower the chance you get headaches in the first place and abortives that diminish your headaches once you have them. I use both kinds, though I can't really recommend them because it'll probably take a little bit to find the combination that works for you. (Like I'm finding one of the new CGRP drugs to he pretty effective, but apparently you have to have tried most other drugs before insurance will approve you for these. )

Thanks for giving me some options worth exploring further guys! I will do some more research on these topics and see if I can get the proper treatment.

Hi all. Car accident in November 2018 and PCS symptoms are now at a more manageable stage for me. I just wanted to mention a few things that have eased my symptoms. I have a lot of sympathy for anyone going through this.

"Doze" therapy. I sat in a comfortable position in front of a nice electric heater (it was during winter) and just closed my eyes, focusing on keeping my mind clear. I did this for at least an hour or two a day and would always feel more clarity afterward.

Lion's Mane and Chaga tinctures. I make double extraction mushroom tinctures as part of a side business, and I use them both twice daily - 2 droppers full each in a glass of water, morning and night. Clinical studies on Lion's mane mushroom show that it's a contributing factor towards regrowing nerve connections and nervous system health. Chaga fungus is an adaptogen with anti-inflammatory properties. Both of these fungi are used in traditional medicine around the world. I found that the chaga in particular had a dramatic effect for me in improving my ability to handle light exercise and rapid weather changes. More than anything, I credit chaga tincture for helping me get back to my normal routine.

Coffee and vitamin C "Emergen-C" packets. I'm a coffee addict and it helps my brain wake up. Additionally, vitamin C packets in a drink of water can really help maintain focus during difficult tasks.

Sunglasses and earplugs. Keep them within reach and give yourself plenty of time to rest in comfortable environments.

Conversely, I would avoid: restaurants (bright, loud, many voices at once), working with manual or power tools (tends to shake your melon and give you a setback), difficult yardwork (physical exhaustion tends to trigger symptoms for me).

I was just able to travel and complete a high level, week-long biology course taught for over 8 hours a day, staying in a hotel. 3 months ago I wasn't sure if I could do this, but managed to complete the course successfully. I am reaching a new stage of wellness in my recovery, finally, and my hope for you is that you find your wellness as well.