Looking for someone maybe with the same or similar problems or some ideas on what the heck is going on. Also apologize for how long this post is going to be, lot of info to post. 29 yr old female with no previous injury or trauma to neck or head aside from minor whiplash in wreck 10+ yrs ago. Started in Nov. '05 with severe right sided headache to the point of ending up in ER. ER Doc diagnosed as Occipital Neuralgia triggered by a sinus infection. Pain continued associated with right sided neck pain despite pain relievers and muscle relaxers. Symptoms faded and just disappeared on their own around Jan. '06.

No recurrence or any problems until Sept. '06. Lymph nodes along back of right neck and behind right ear started swelling and the headaches and neck pain returned. A round of antibiotics made the swelling go away but the pain remained. Always starting with an ache in the back of right side of neck, spreading up towards back of skull and then settling as sharp, strong throbbing in right temple. Ended up having to take Hydrocodone 10/500 regularly because it was the only thing that helped and GP's had no better ideas. Visual changes as well, prescription changing in as little as 15 minutes plus seeing shadows moving behind and in front of objects without full obstruction and not just in the periphery.

Finally come Jan. '07 I had had enough and started pushing for neurological aid. First doctor told me it was migraines and threw a bunch of pills at me that did nothing but make me sick. Wasn't happy with that treatment obviously so sought out a second neuro who sent me for all kinds of tests, emg/ncv, eeg, mri, xray (I'll post results below) and diagnosed me with "Partial epilepsy with impairment of consciousness, with intractable epilepsy. Cervical spondylosis without myelopathy. Displacement of cervical intervertebral disc without myelopathy. Cervical root lesions, not elsewhere classified."

Never had any physical signs of epilepsy and doc sent me for a cervical epidural for the nerve damage. Went through it under local and had to mention the pain several times during the actual injection. Ever since the night of the injection, I haven't had any of the previous headaches but I have constant searing pain all along the back of my neck, shoulders and down my back to the bottom of my shoulder blades radiating outward from the spine. Pain also made worse by movement, especially turning or bending. Can't even dress myself without ending up on floor whimpering, even had to chop my hair off because I couldn't take care of it (was waist length hair) Told the doctors before the injection that I had had bad reactions to previous steroid injections in wrist and knee, to the point of not being able to use my knee for about a week as it was unresponsive and severely painful, they said it was bad injections and blamed on the administering doctor. Tried pain relievers and muscle relaxers also for this, currently taking 200-300mg of Ultram just to keep pain at a tolerable level. Seeing a spine specialist orthopedist tomorrow but looking for any ideas on what's going on. I'm tired of ending up on the floor crying and screaming.

MRI of the Brain with and without contrast. Technique: Sagittal T1, axial T1, axial T2, coronal FLAIR, axial T1 post contrast, coronal T1 post contrast. The visualized paranasal sinuses, mastoid air cells, and orbits appear to be within normal limits. No masses, mass effect, or midline shift is seen. There is a small focus of bright T2 and decreased T1 signal in the white matter adjacent to the posterior horn of the right lateral ventricle. Small non enhancing focal white matter lesion in the right periventricular white matter adjacent to the posterior horn. This may represent gliosis or demyelination. No abnormal enhancing signal foci are identified on the postcontrast images. No extra axial fluid collections or evidence for intracranial hemorrhage is seen. The ventricles, sulca, and basal cisterns appear to be within normal limits.

X-rays Technique: Lateral neutral, flexion, and extension views. AP, odontoid, and oblique views of the cervical spine. Findings: There is mild reversal of the cervical lordosis on the lateral neutral view. There is good flexion and extension. The C7-T1 alignment is not well seen on the flexion or extension views but is unremarkable on the neutral view. There is cervical spondylosis which is most prominent and mild at the C5-6 level. There are facet hypertrophic changes at several levels. The facet joint is slightly more widened in the posterior region at the C4-5 level with flexion versus extension with minimal anterolisthesis with flexion. With extension there is minimal retrolisthesis at C3-4. With extension there appears to be dorsal spondylosis at C3-4 and C4-5 mildly narrowing the anterior canal. There is no evidence of significant foramen stenosis from hypertrophic changes. There is an accessory ossicle near the articulation of the first rib with the T1 transverse process.

24hr EEG: There is symmetric and reactive occipital dominant rhythm of 9-12Hz. Low voltage 18-22Hz activity is noted over the anterior regions during awake recording. There are rare left Centro-temporal and left temporal sharp wave discharges. Abnormal ambulatory EEG showing intermittent left Centro-temporal and temporal spike and sharp wave discharges. No background asymmetry is noted during awake or sleep recording.

Sorry again for how long this is.
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replied May 9th, 2007
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Hi
Hello and never apologize for having to explain yourself! I for one totally understand. I have been going through the headaches things for over 30 years, survived a cerebral anuerysm 8 years ago....and still have neck pain and headaches.....Have had all the above test you mentioned, yet several neurologist can not pin point a thing and damned if I am going to have to survive on pain pills. I have to function! From reading your test, no abnormalities such as a tumor or anuerysm (nothing severe needing immediate attention) was noted. Have you ever gone to a chiropractor? I went several years ago and have intentions on finding another. The one I had moved away, but I felt immediate relief and found it helped me immensly. I do hope you find some relief. Just wanted you to know someone was reading your post and someone cared! Laughing
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replied May 9th, 2007
Hi Fairy and thanks. I don't think I could take this for over 30 years though, that's just..depressing but you have my admiration for being that strong. I know what you mean about the pills though, between the Lamictal and the Ultram I'm about to scream from the lethargy and "drug-head". I tried a chiropractor during the first spell of the neck pain but it only provided relief for about a day, ended up going 3 times a week but my insurance won't cover many visits. Thanks for the thoughts and I hope you find a pill-less relief as well. Smile
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replied March 11th, 2009
Hi moonlytes
Get tested for gluten intolerance/celiac disease.
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