Originally Posted by Pedalspinner

First off…my history. I had never experienced a spinal injury or concussion.

I was an active person. Tennis, trail jogging, hiking, backpacking, basketball, road and xc cyclist, avid dirtbike trail rider and relaxing paced jumping on private mx tracks, home fixer upper (seriously large and physical and heavy labor hours projects. (from tree felling,removal, heavy equipment digging to woodwork or metalwork projects…to laborious landscaping…to additions…to roofing. I was also a swiss style cnc screw machinist. (I was a go get r dun kind of guy). Then a distracted driver plowed into my all but stopped car, never got to the brake pedal, sent me spinning and off a telephone pole. And my world changed forever?

Evac to hospital. Severe concussion per first neurologist. Long road ahead of physical therapy, speech therapy, cognitive therapy, life adjusting therapy, eye retraining and strengthening, etc. As time went by, improvement started to level off and certain things still had very impacting unwanted results.

First neurologist eventually became frustrated with my lack of continued progress, had me put in even more aggressive physical therapy with instructions to try to keep pushing past the symptoms that were literally forcing me lay awake, unable to sleep for up to 30hrs or so, tears streaming down my face, in bed for days at a time, barely able to crawl to a restroom, or get easy quick nourishment for myself. She eventually accused me of things in front of my wife that were blatantly false, and when I called her on it…she thought it was best I see someone new. (I later found out that same neurologist had other patients who experienced similiar treatment and had abruptly left)

Second neurologist at a WELL known facility for concussions. Dr performed same usual physical exam, did not understand why I said my responses to certian phyical stimuli and things were what they were...(but did not entertain me about these micro impacts and said he would inquire and review with colleages). Next visit, I heard the word somatoform, and he advised first with neuropsych testing and counseling. (I had to look the word up to find out…talk about WTH? moment).

Limited eye endurance, but I kept searching online for any answers, any leads, anything. Third neurologist….this one I found out about by online patient testimony on a generic forum.

First visit, within 90 seconds, he had actually foretold what he thinks had been misdiagnosed, had performed a simple hands on test (single finger tip each hand on my neck area), and I all but fell off exam table in pain.
There is a spinal nerve located near your C2 vertabrate. There is a vital spinal nerve called the: occipital spinal nerve.

If you research these two (C2 spinal nerve….and occipital neuritis…occipital neuralgia), you will see just what this spinal nerve can limit your eye use, cognitive, balance, hearing, tinnitus, and just overall ability to function in life).

When your head is thrashed in a way it should not, this vital spinal nerve can be at least one or more of the following: damaged or misplaced or face inflammation induced compression, or scar tissue build up which causes misplacement, compression, neuroma?, etc. Icing that area of your neck to the point of somewhere between burning cold to numb to touch will allow greater function and endurance, but once it “thaws” out…lol…You will pay the price as if you never iced it. (temp. survival skill…of numbing that nerve). This occipital nerve can also cause peripheral sensitivity to the upper left rear of head….like even laying still on a pillow there….will cause pain.

The neurologist performed a three round attempt of nerve blocking injections to that neck area…over 4 months…with self icing…and severe activity restrictions along with that icing. Most patients have a measurable response to clearly decide whether a likely candidate for nerve decompression surgery, etc. I regretfully only had a measurable but low response. I was warned ahead of time that due to over a years plus of approved neck therapy, scar tissue had likely formed and he did not expect similar responses to nerve blocking injections…because of it.

If twisting your neck left and right, stretching it, up down, left right, tilt left right….increases your symptoms….very good chance of possible occipital nerve issue. A hands on physical test just by fingertip pressure point locations on your neck that takes under 20 seconds…can possibly diagnose it.

I have been referred to pain management to further collect data and see if occipital nerve surgery would have a high enough likelihood of success in helping me function better in life. (not yet a candidate for the invasive surgery).

But now to my unresolved brain and head movement related issues.
I also suffer from the micro vibration, micro impact, bumps, wife moving on bed mattress, someone else moving on sofa, nephews and nieces running around on wood floor when I am sitting in a chair on the wood floor, driving, walking, rough pot holed roads or just patched pavement, road feel on a road bicycle, or just even micro impacts from riding on a railtrail, etc. and just about anything that has a more solid impact transfer. It all adds up depending on severity and duration…and has taken over 2 weeks before to settle out. Until settled out, hypersensitivity will persist.

If I introduce the stimulis, or I am in charge of the object introducing stimulis…symptomatic elevation tends to be less. (me drive vs someone else drive, me jump into the air vs just an elevator starting and stopping…even with my knees bent and ready for it, me moving around on a couch or bed vs someone else moving around on the same couch or bed, me moving my head vs someone else moving my head, me tapping on my shoulder vs someone else tapping on my shoulder, and so on and so forth). Yes as previously mentioned above, it is like my brain is unable to keep up with the outside stimuli, and fights to try to play mental catch up.

Depending on symptom levels, an elevated heart rate will proportionately increase symptoms. Other times with low level symptoms, I have reached max hr without symptom increase such as a very slow paced quatting on a linear ball bearing smith machine...or a long slow uphill bycicle climb (14-15 degree pitch)

These symptoms may include at least one or more of the following: eye soreness, light sensitivity, cognitive loss, ability to react, balance, brain area pain and burning, tinnitus, left eye shutting, mentally glazing over like world is around me, but I am just somewhere between reality and what’s going on.
I can temporarily run a weed trimmer, with limited walking, but walking gets me. I can spin at slower cadence on a fat tire xc full suspension mt bike on a paved and smooth rail trail, but have it turn to crusher run stone and I start feeling it instantaneously…sometime slowly, sometimes faster.
I know that the 15minute drive to my local lake and back bothers me more than paddling my kayak the 10 miles over a 2 hour period. It is like the water acts as a cushion to the impacts of my paddle going into the water and my body movements as I paddle. Now if you add in choppy water from other boats or wind, symptoms will increase. (I prefer nighttime flatwater paddling when maybe 2-3 boats are on the entire lake). Smooth water, but a way for me to get exercise and feel kinda normal again…as close as I can right now.

To avoid micro impacts on the bicycle, I try to spin on an indoor trainer. But session to session, it varies, and once my cadence reaches a point where the small rhythmic movements of my head barely moving in response to my not so perfect spin….lol…symptoms elevate. so lower pace cadence (yuck) and holding onto something to steady my upper body...limits symptom onset...sometimes.

I have also experimented with a metronome in use. Free standing squatting, once the pace of up and down motion get too fast, (vertical head movements), symptoms elevate. I have done the same with my linear ball bearing smith machine. (truly trying to limit head movements….with and without a snug Velcro padded cervical neck collar…just to try to isolate g forces vs possible neck movements. At a certain pace, varying day to day, the G forces on my head of up and down movements…elevates my symptoms.

I have proven that if on a very long slower cadence climb on my mtn bike (full suspension, paved road) low symptom day, I can reach max hr without symptom increase...or I can do slow paced linear ball bearing smith machine squats until i tire out...and high heart rate...without elevating symptoms...and stand there in be okay...but start to walk...and the impact viabrations can elevate rather fast and hard.

There is also a condition called Intracranial hypotension. thank you Nurotalk for allowing people to seek out and discuss things!

Around our brains we have a fluid called cerebrospinal fluid that works like a cushion for our brains. Sometimes if a person hurts his neck, back or cranium he/she can get a tear in the dura (sack) that contains this cerebrospinal fluid and it can start to leak. This will cause less volume of fluid around his/her brain and lower than normal pressure inside the cranium. This in turn will make the brain more sensitive to vibrations or impacts.

You can check if you are suffering from intracranial hypotension by holding your breath and increase your abdominal pressure (this increases your intracranial pressure momentarily), while you drive over a bump. If this maneuver helps you take the bump, then you know that you are suffering from too low intracranial pressure.

You typically diagnose this with a MRI with contrast of your skull.
It is treatable, but it will typically not go away without treatment.

I have just began to intermittently try the: hold breath and what not procedure as above…and plan to continue trying that out. May some of my story maybe help some of the readers.

Btw, I have over 2400.00 in safety gear that I wore when I use to recreational ride the dirtbike. (only missing work once in 17 yrs was a good thing). My last neurologist stated that if I had indeed been wearing my 550.00 neck protection/brace and my helmet….yes…lol…when driving…my outcome likely not have had the same outcome. (like we leave our homes everyday wearing that stuff). Double edged sword? If I had been on the dual sport, that and my body armor would have been on…but a SUV hitting you at excessive speed, no brakes, with you on a dualsport…just might be worse….just a tad.

I look forward to any leads and responses.

Pre injury, I had never done more than 150 miles in one day on the bike. I was 16 months away from attempting (completing a respectable timed ) double century in one day. That may now turn into a bucket list that may never be reached...like I said..."may"...at this rate...It will not happen...so something has to change. I must keep a promise I made to a friend who tragically was killed in an auto accident before we could do it together. We may not do it together...but I hope to do it for him.

NEVER GIVE UP. NEVER GIVE IN. I AINT ABOUT TO QUIT.