Persistent headache at base of skull halfway between ear and spine

[RootSkier]

Going on 14 days...have had massage, seen two doctors, on a course of antibiotics "just in case."

No motor/vision/speech/strength issues at all, so doctors are reluctant to order MRI but we will be going there soon. Pain comes and goes but comes more often than it goes as time goes on.

I am seeing an acupuncturist tomorrow. In the meantime, Percocet is the only thing that mutes the pain. Ice, heat, ibuprofen, naproxen sodium, acetaminophen, hot showers, and changing position all have zero effect.

The pain is confined to a very small area the size of an almond just inside the skull and cannot be induced or reduced by pushing, poking, or prodding.

Any TGR docs have any ideas?

[kingdom-tele]

Recent head injury?

Any x rays yet?

C1 (atlas) and a bony prominence on C2 called the dens that sticks up into C1

could be a ligament strain, mm insertion strain, stable fx, but all of these would coinside with some type of trauma

[telepariah]

I have something similar in a couple of places. Doctors could not diagnose even after MRI. My chiropuncturist diagnosed neuralgia. I have two nerves involved from different origins. One is the occipital nerve which emerges from the joint between C1 and C2 and that is the one behind my ear. The other is the trigeminal nerve, which is a facial nerve in front of the ear. There are trigger points that set off the occipital neuralgia, which in my case happens a lot more often then the trigeminal neuralgia.

At first I was just taking massive doses of ibuprophen and then my doctor said we have to get you on something safer so she put me on celebrex. Chiro and accupuncture seemed to help reduce the frequency though I would always get it the day after an adjustment. I haven't done that in a couple of years because I learned that I could manage the pain by lying flat on a hard floor for about 2 to 3 hours. I haven't taken celebrex in a long time either though I still have the script.

Recently I have been getting it just about every day. Glasses touch the trigger point, as do helmets and other headgear. Bad posture and stress also contribute. It sucks but it is not life threatening if you don't take drugs for it (my mom had it too and the drugs they put her on for 20 years eventually took her life).

[mtcham]

Root, the location between the ear and spine can be the source for trigeminal neuralgia where a vein exerts pressure around a nerve. But usually the pain is referred to one of the branches in the face.

Does it feel like somebody's putting an ice pick thru your head or a lesser type pain? My father suffered from TN for years then finally had surgery and has been pain free since.

Hope it is just something minor but if it persists an MRI might be a good idea.

[OSECS]

Does it feel like somebody's putting an ice pick thru your head or a lesser type pain?

He is applying to law school isn't he ? Isn't that sorta like having an ice pick jammed through your face ??

[RootSkier]

I got into law school...so maybe it's related.

I would describe the pain as more like being pinched with a large vice grip inside the skull. Anyways, 2 doctor visits, a mess of percocet, a few acupuncture treatments, no relief so far.

I had an MRI this morning...which sucked. I really wasn't prepared for the industrial alien sounds at 160 decibels 3" from my ear.

Thanks for the all the ideas/advice so far...hopefully I'll hear back about MRI results soon.

[crackboy]

probabably unrelated but before i had my shoulder surgery i would get persistant migraines. think it was from guarding but my neck/deltoids got so tight that it travelled up and induced tension migraines

[senior researcher]

It's from not skiing! Get well soon.

[telepariah]

Root, the location between the ear and spine can be the source for trigeminal neuralgia where a vein exerts pressure around a nerve. But usually the pain is referred to one of the branches in the face.

Does it feel like somebody's putting an ice pick thru your head or a lesser type pain? My father suffered from TN for years then finally had surgery and has been pain free since.

Yep, that's me. Ice picks behind the ear, in the corner of the jaw and the top front corner of the ear. All on the left side. I've heard that surgery sometimes works and sometimes not. I've had enough surgeries to last me a long time so I'm hoping to avoid it. I tried not wearing my glasses this weekend and it helped a lot. I hope Root doesn't have TM cause it sucks.

[RootSkier]

I started taking notes yesterday. I've realized a few things.

- chewing sucks and is a huge aggravator
- reading is no problem (I think I have about 60 posts today)
- I have noticed some pain in the ear area and a little behind my eye...still all on the same side
- exertion/raised heart rate is bad news. this sucks badly.

so...in conclusion...

[ame]http://en.wikipedia.org/wiki/Atypical_trigeminal_neuralgia[/ame]

...I have the fear.

tp, does exercise cause problems?

[telepariah]

After ten years, it's still really hard to discern a pattern. Sometimes I think it comes on if I get dehydrated, but sometimes exercise with dehydration doesn't trigger it. I ran 8 miles today for my first real run since shoulder surgery without bringing water because I didn't expect to go that far and tonight I feel fine. But after a big day of skiing I often get it but it seems to be worse if I wear a helmet, so resort skiing is more likely to cause it than backcountry, where I rarely wear a helmet. Just exercising and elevating my heartrate doesn't seem to do it, there usually is another factor involving those trigger points behind my ear. As I mentioned before, wearing glasses seems to do it to me but I need them for reading and working at the computer. All my sunglasses have the temples cut off and croakies attached so there is no pressure from them.

When it's going off, bending over for any reason really kills -- just drives the icepick harder into my head with pain radiating out from the point.

One thing I think that does do it is a bad habit I have (kind of unconscious) of propping my chin on my hand while leaning on a table and working. This hyperextends my neck and I think any inflamation around the C1-C2 joint will result in a TN or ON episode.

It's interesting that in my case, chewing sometimes helps.

Let me say this. Do not accept high doses of prednisone as a treatment for the symptoms. This is what put my mother on the path that spiraled downward for 20 years. First, they thought she was crazy and put her on lithium. Then they tried the prednisone in massive doses. This cured the pain but then when they tried to wean her off it, the pain came back with a vengeance, so she stayed on it. Years of this fucked with her blood chemistry enough to put her in the hospital at least once a year. It caused such bad osteoporosis she couldn't ski anymore. Then her spine started to disintegrate and she was in just unbearable pain for the last couple of years. The cocktail of drugs then came to include opiates for pain and other pain killers both steroid and non-steroid. Finally, incapacitated, they decided that she was on too many drugs and they gave her methadone to help kick the multiple addictions. She stopped breathing and suffered brain damage. Soon after that she died.

It's a sad story, but my takeaway is do not be satisfied with a medical treatment that only focuses on the symptoms. Figure out what causes it and learn to manage it. Get alternative treatments. Accupuncture seems to work wonders for me. And don't let it stop you from being active. I haven't. It hurts like a motherfucker sometimes, but if I lie flat on the floor for a couple of hours, I can make it go away.

[mtcham]

From my experience, true trigeminal neuralgia is a one way ticket to a lot of pain and suffering, but may be easily fixed. Unfortunately my father had to deal with an inept local neurologist and a shitty MRI scanner that did not have the higher resolutions of today's machines. After 5 or 6 years he was correctly diagnosed and at that time there were just a handful of very good surgeons doing the vascular decompression surgery. He went to the Doc in California who pioneered the surgical technique.

With him each attack got longer and longer and more frequent. He was self medicating himself with very high levels of neurontin, then later a different drug. Nobody should have to withstand that kind of pain when surgically one can be relieved of it.

Good luck guys!

[RootSkier]

MRI = negative.

Appointment with neurologist scheduled....in three weeks.

Got a call in to a kayaking doctor buddy for recs for other neurologists.

[mysteryzombie]

some of those symptoms you describe are also common signs of a lyme disease infection. but usually you would have had a fever at some point, or the neck pain would have build up in the area at the base of the skull and worked its way outward from there. the reason i suggest the lyme is that the increased heart rate deal is also very common in the lyme infection as it is probably due to nerve inflammations.
you most likely don't have lyme but if docs are totally baffled as of now then at least ask that neurologist to do a western blot test for you. insurance covers it and it should be routine if you ever 1) spend time outside and 2) have symptoms of lyme.

[RootSkier]

That's real interesting...I did have a serious case of flu like symptoms (chills/fever/bad body ache) about two weeks before onset of headaches. On the other hand...it's not exactly tick season in Montana...and I'm not sure we even have Lyme disease here.

Are there general blood tests than can check for a variety of ailments like this or are blood tests very specific? I have an appointment with a neurologist in three weeks but I feel like I should go back to my primary care doc as the symptoms have evolved a fair amount since I last saw her. Also...I am nearly out of pain meds.

[mysteryzombie]

there's lyme in montana. just not as much as in other places. tick season is happening anytime out of deep freeze. but ticks also can come in via a pet or firewood or mice.

there is a western blot for lyme, also check for bartonella, babesia, and rmsf at the same time. titers show antibodies but the blot is much better.
tell your doc you might have been bitten and you had a bite at one point but found no tick, that'll warrant the test.

[RootSkier]

Thanks for the info and ideas...much appreciated.

[crackboy]

you don't always get the fever. i got lyme a couple years ago in Northern california. they don't have lyme there either. i had pretty good joint pain , fatigue and acheyness . while the rash is also pretty indicative, it disappears fast. i luckily spotted my rash on my thigh where i had no tick bite and it only lasted 3 days; saw it on friday was gone by monday. i also tested negative through the test but i went with the antibiotics based on the joint, fatigue and rash. its worth it. its like 21 days of doxy though i took cipro. might be worth it since neuro symptoms are usually the last ones to show up. typcially once they set in they are hard to get rid of

[mysteryzombie]

the rash only appears in about 50-60 % of people infected. docs sometimes don't do a good job of properly diagnosing it, and often the test will be false negative. wetsern blots are a more accurate test. i was trashed from lyme for months while i battled both docs and insurance and finally got diagnosed due to my own persistence. and since crackboy sounds educated on the lyme, and was probably being sacrastic...yes there is lyme all over northern cali, its just more identified as a northeastern/midatlantic disease.

[crackboy]

yes being sarcastic about the lyme not being in cali. if you check out the CDC lymes page they list one reported case of it. it seems like lymes is a lot of circumstantial symptoms. in most cases it seems like if you even suspect it is lyme, then its probably better to go on antibiotics even if it isn't confirmed rather than let it get worse

[mysteryzombie]

you hit it on the head. the problem here is that it's cdc/ama/idsa vs docs that understand lyme, and all the $ behind the cdc/ama/idsa is keeping people from being treated. i could go on and on about it but this would be a forum in itself. one thing to do is go find "under our skin" and at least watch the trailer on the site.
during my battle with the disease i met some VERY ill people. the antibiotics can knock it down if caught early, and if caught later, megadoses of abx plus other supplements are used long-term to beat it. i did that long term for 9 months with moderate success, then banged it out using a mode of alternative medicine. i went from seeing spots, in pain, not being able to sleep, and stuttering to feeling pretty good. and now, about 16 months out of treating it, feel pretty back to where i was before, aside from a few seeing spots moments, which i can live with.
its not a disease to take lightly. this tgr forum is a good place to raise awareness, as all of us enjoy the outdoors.

[RootSkier]

On the recommendation of a no-bullshit client who had some life-altering migraines cured in a few days, I spent an hour with this guy: 4quantumhealing.com

His card says "Chiropractic and Applied Kinesiology" but he doesn't do typical chiropractic adjustments. Anyways, after talking to him for 10 minutes he says, "I think there's something wrong with your jaw." So he finds some excruciating pressure points, and then sticks a gloved hand in my mouth and pushed on the site of my former wisdom teeth, which was one of the most singularly painful experiences of my life. He then did some extremely mellow massage like treatments to my head, neck, and jaw. He then returned to the painful areas, and the pain had diminished at least 90% in all areas.

I stopped taking Indomethacin immediately and by the next day I felt about 95% better. Day 2 I was more or less 100%. I have now been completely headache and drug free for a week.

Second treatment he did something similar with my left ankle and hip...I was more than a little skeptical of this until I went kayaking this weekend, spent about 9 hours in my playboat, and realized that my left leg/foot didn't even get a hint of tingling, whereas normally I have to get out and wake my lower leg up about every 45 minutes due to severe pain/tingling. I had never really even figured this was a mechanical problem, I just blamed it on poor boat outfitting.

Anyways...thanks for the advice everybody. If anybody is in MT and has issues, I can't recommend Dr. Steve Smith enough.

[senior researcher]

That is awesome!

[telepariah]

My chiropuncturist used to do the gloved hand in my mouth thing. I never knew if it was just that or other things she did that helped me. Sometimes I try to do it to myself when it is coming on. Not so effective when I do it.