I am one of the lucky ones I guess it only took 1 pcp doctor and a trip to the emergency room. I have been suffering with this since September 5, 2015 since I fell. I haven't had any treatments yet but the doctor that was recommended has 3 out of 5 rating. Just like everybody else I fake to be happy. I have not lived since my fall. I am a prisoner in my head and in life. I miss a lot of work too. Luckily, I have a great boss, so I try to fake that I am normal. Do any of you drive? My pain is so bad that I don't trust myself behind the wheel. If it weren't for my love ones I would want to die as well. The pain makes you feel like you are going crazy. Please help?

I had an awful headache like no other for 9 days,with sinus pain and ear pain, after looking in striking back book and doing research and having trigeminal neuralgia and a mvd 13 years ago I recognised the pain and diagnosed Geniculate neuralgia, for once the des agreed with me. When I first had tn no one knew what it was and didn't suspect tn as I was 21 and they thought I was to young! It was only when I had Bell's palsy and was reading up on it I saw tn and the symptoms described I knew that's what I had, luckily dr then agreed and after awful meds and successful mvd cured. Now this gn is on other side. Very deep throbbing pain in ear it builds up you can't touch around your ear when it's really bad and you get a new wave of pain as well, and if I'm lucky not I have a few of the classic electric shock knife stabs thrown in. Anyone had any treatment for gn or did it show up on scan? I am due for mra scan in 2 weeks and hope it picks up something to give me an answer, I am now 43.

Hi,
I am new to this forum. I have suffered from this painful condition for nearly four years. The pain began in the left temporal region and has progressed to the base of skull, neck and right side also. The pain is constant and is extremely disabling and debilitating. I also get tingling/ crawling sensations all over my head, together with dizziness, light sensitivity, allodynia, poor balance, tinnitus and extreme sound sensitivity, chronic nausea and the obvious sleep problems. Unfortunately i was only diagnosed after 2.5 years of being in constant pain. In my case i think the cause is from extremely tight tense and spastic neck and shoulder muscles. Some of them are so spastic that they protrude noticeable. I have been clenching my teeth for a while and developed TMJ disc displacement as a result. I know this is contributing to the muscle tension but i am not sure how much as i know the condition itself causes lots of muscles in that area to spasm. My condition is getting worse a worse and am not sure what to do. I have no life, am extremely depressed and have just about given up hope. The muscle relaxants i have tried include valerian, baclofen (small dosage for two weeks) and valium (also small dosage for two weeks). The pain medications i have tried include endep, dothep, cymbalta, Lyrica all of which have not helped. I have tried massage, heat therapy, accupuncture, chiropractic adjustments which have not helped either. My Pain specialist performed a pulsed radiofrequency neurotomy of the left greater occipital nerve which also didn't help. I want to try an occipital nerve block but know if it works the results are not permanent and also worried that it will make the pain worse. However I want long term resolution to this condition and am desperate to pin point the precise cause of the nerve compression/ irritation and inflammation to develop an accurate treatment plan. I have looked into vitamin supplementation, particularly methylcobalimin b12 but am not sure if this is safe and proven effective in clinical human trials. Can anyone here suggest any other avenues for pain relief?

Thanks

i also have severe bilateral occiputal neuralgia...

i was hurt in May 2013

after 2 1/2 years of being led down the wrong path by one bad nuero after antother for a variety of reason including the fact that i have an mtbi fromt he same injury that caused the ON...

at least 8 neurologists missed the diagnosis of ON.

there are diagnostic blocks that can be done systematically in order to diagnose it properly...

i am awaiting my 2nd round of radiofrequency ablations (RFA's) which has been the ONLY TREATMENT that relieved 90% of the pain from the base of my skull, wrapped around both side of my head and my hurts to move them too fast...thend own my neck and turns into myofascial pain...

RFA's have been a godsend to me! i encourage folks to try this, although it is not permanent by any means...mine wore off after 2 months...

those of us that suffer know that one day of reduced pain is hard to find...RFA's gave me 2 months...

specifically, i had RFA's of the medical branch nerves, both sides C2 - C7.

i have 3 weeks to go until i get it done again...

it only buys time. it is a tool in my tool box that we all have: narcotics, steroids, lidocaine patches (yea!) lidocaine nostril spray, and a lot of different meds.

this is the most comprehensive info i have seen on this subject. in my travels, i have found not one flaw with anything written here:

http://dizziness-and-balance.com/dis...neuralgia.html

most interestingly: nerve decompression done by only a handful of surgeons in the US had the best success rate of any therapies, although their sample size was very small. 87%. pretty good to me.

the page discusses all the advanced therapies: nerve blocks, rhyzotomy, botox, surgically implanted impluse devices to block the pain signal, etc.

and the author, whom i have found no flaws in any evidence he has presented (and that doesn't happen when patients and docs agree when it comes to ON) states nerve decompression to have the most promise of success.

interestingly, my GOOD neuro (not my 2 bad neuros) gave me a referral to a clinic in Houston that has been doing this surgery with success for nearly 10 years now...

check this out:

https://www.youtube.com/watch?v=I9fVC-dwiTw

i am trying to go this route. it makes too much sense.

we are all surviving one day at a time.

i want to solve the problem.

and nerve decompression does not sound like snake oil to me at all...

wouldn't it be amazing if someone out there actually has had this done and can tell us their experience?

ON is rare and misdiagnosed as migraine all too often.

learn more.

you MUST be your own advocate.

and one important lesson i have learned.

do NOTHING unless 2 docs that you TRUST a lot tell you exactly the same thing.

no dart throwing. no drug of the day.

i use the "broken leg" example constantly with my family that suggest psychotherapy, copper bracelets, and sometimes exorcism...

if we had a broken leg, tell me this: would the doc give you pain meds and tell you to see a therapist?

use the broken leg example with your family. it will help them to understand you are hurt, and it needs to be fixed. just like a broken leg.

it is all ludacrist in every way.

we cannot survive on percocet, lyrica and prednisone...that **** will kill us off.

we need our broken leg to be fixed.

this surgeon has agreed i am a good candidate. cost: 15,000 usd

it might be covered. it might not.

we shall see.

i would trade 15,000 for fix.

i would pay a million dollars. but i have zero income and i am on medicaid...yikes..

but where there is a will, there is a way...and my will is strong on this..

we shall see what happens with this.

i hope i can remember to update you if i go thru with this and if it helps.

if this has "touched a nerve" (so to speak), lemme know what you think.

God Bless and Feliz Navidad amigos!

Brainstemmed

Hello! I would love to hear how your procedure went if possible. Thank you for sharing your story with us. I am finally just now realizing what my issue is.. Most likely ON. I would really sppreaciate it.

Thank you. D

First off…my history.
To my knowledge…and my mother whom I asked…(I may have been too young to remember…lol ), never experienced a concussion, etc. growing up.

I was an active person. Tennis, trail jogging, hiking, backpacking, basketball, road and xc cyclist, avid dirt bike 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, 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 impactful 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, with LOTS OF FAST NECK MOVEMENTS, 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.

Second neurologist at a WELL known facility for concussions. Dr performed same usual physical exam, did not understand why I said my responses to 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 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 possible result in at least one or more of the following: damaged or misplaced or face inflammation induced compression, or scar tissue build up which causes misplacement (neuroma), compression, 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 icing and 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 with my head area….will cause pain. My occipital nerve sensitivity has significantly increased…I personally think it was likely due to all the fast and repetitive neck movements in approved physical therapy…on site …and in the home…without the neurologist proving out a possible occipital nerve issue.

The neurologist performed a three round attempt of nerve blocking injections to that neck area…over 4 months….and icing…and severe activity restrictions along with 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. The temp pain of injections was miniscule compared to what I can daily go through. 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 usual 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….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 area 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 un resolved brain and head movement related issues.

I also suffer from the micro vibrations, micro impacts, 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 rail trail, 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. (disclaimer, standing with weight over pedals, minimal handlebar pressure, and attempting to keep my head movement very limited…produces less symptoms…but It will certainly flare up the inflammation and put me in downtime for a while…multiple days of hypersensitivity and more limited low function rather possibly.)

If I introduce the stimulus, or I am in charge of the object introducing stimulus…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 elevating heart rate will proportionately increase symptoms.

These symptoms may include at least one or more of the following: deep eye soreness and pain, light sensitivity, cognitive loss, ability to react, balance, brain area pain and burning, tinnitus, left eye shutting, memory loss, 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-vibration, with limited walking, but walking gets me. I can spin at slower cadence on a fat tire reduced air pressure 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 flat water paddling when maybe 2-3 boats are on the entire lake). Smooth water, but a way for me to get exercise and feel kind of 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. I have to almost maintain zero head movement via my reflection in a mirror…and then it still depends day to day.

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 recently read about someone with a possible lead to extreme sensitivity to micro impacts, large vibrations, etc. so besides from PCS, I may? also suffer from a condition called Intracranial hypotension.


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 may be 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 just wanted to point this out to all readers so that maybe someone can get the correct treatment. So for anyone who has suffered a concussion, and still has vibration and impact issues… it is not so unlikely that they may have also injured their cranium, neck or back at the same time. ..and have this intracranial pressure damage.


Once again, I don't want to step on anybody's toes here. I just had to write this because it took me a long time to learn of this…and hopefully someone else experiencing the same thing might learn faster.


I need to search my browser history and then I have some links to discuss the possible surgeries and outcomes....pdf format...including detailed captioned pics of differing surguries related to.

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 dual sport…just might be worse….just a tad.

If this info helps anyone… Great! I am now 28 months out with no clear indications of my future outcome. As a once cyclist; I had never cycled more than 145 miles on a single days ride. A friend and I had planned to someday due a double century. I had plans for doing one on what would have been 15 months after the distracted driver did their thing. As for my friend…He regretfully has passed in a motor vehicle accident. It was my goal to do the double century in his memory. That may never come to pass…may…but that does not mean it will not.

I look forward to any leads and responses. NEVER GIVE UP. NEVER GIVE IN. I AIN’T ABOUT TO QUIT.