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Chronic neck pain (upper left)
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Chronic neck pain (upper left)

I've had frequent headaches & migraines for over 20 years. (I'm 36 yrs old)  They've gotten worse & more frequent over time.  I've also had neck pain in the upper left side of my neck since I was about 18 yrs old.  The bulk ("root") of the pain seems to be at c-3.  I've gone to chiropractors for years, which give some help temporarily.  X-rays have been "normal," a CT scan for migraines came out "normal," a recent MRI for neck pain & headaches came back "normal."  Given the great pain I'm in almost constantly, it's hard to believe no doctors can find anything!

For migraine prevention, I'm currently taking 100 mg atenolol daily, 300 mg neurontin 3 x day, and 500 mg Keppra 2 x day.  For actual migraine attacks, I've tried Amerge (which used to work but doesn't work well anymore), Relpax, Axert, Imitrex, & Migranol.  Sometimes they work, but sometimes not.

I also have tried physical therapy, facet joint injections, trigger point injections, and botox injections.  The trigger point & botox helped for a very short time.  The other injections & physical therapy didn't help. I'm going to try trigger point & botox again to see if repeated doses will improve my reaction. I feel like I'm going crazy. My chiropractor thinks I have nerve & muscle pain.  The pain specialist isn't sure, but thinks I've got the tightest balled up muscle he's ever felt on the c-3. Also c-3 tends to stick out more to the left than my other bones.

Are there any other tests or types of specialists I should check into?  A neurosurgeon, orthopedic doctor?  Nobody seems to understand what's going on...
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Avatar_n_tn
You seem to have been through a wide range of therapies for your pain, which (although I'm speculating without knowing your case) is probably musckuloskeletal, especially if your MRI does not show a root entrapment. A CT myelogram may be useful to confirm no trapped roots, as it can pick things MRI does not. Flexion/Extension xrays of your cervical spine may be useful also if not already done - this allows a look at the way neck movement affects the bones which MRI cannot do.

There are a variety of other neuropathic pain medications you could try (assumming part of the pain is from a nerve), including a new one called Pregabalin (just approved this month)
Botox is pretty good for muscular pain - maybe bigger doses may be needed, a minority of patients develop antibodies which reduce the effectiveness of Botox - use of Myobloc another form of Botulinum toxin is then helpful.

If the pain is still intractable, and it is nerve related, you may be a candidate for a spinal cord stimulator, although I cannot assess this here, you would need to be referred to a participating center (liek the Cleveland Clinic Pain Center)

Good luck
9 Comments
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Avatar_n_tn
Hi Shelbell,Reading your post is strange because a lot of it reads like my story.I'm 39, Started having headaches at 13.The last 10 years have been the worst. For a long time the chiropractor seemed to help a lot but it got to the point where the relief was lasting only until I got to my car and by the time I drove home I had a massive headache. I also tried accupuncture for almost a year. same story. All of my x rays, CT scans,EEG,MRI,EMG each test came back normal aside from the MRI showing degenerative disc in the c-3 thru c-6 area. I have tried most of the treatments you have spoken of. I had 6 weeks of injections back in Feb '05,unfortunately they were in c-1 so they didn't help. I also did the facet injections , cortisone injections, botox , trigger point injections, physical therapy , electrical stimulation,traction and a multitude of drugs. Right now I take  Topamax 75mg. 2x a day and my neurologist says that there is a new pain med. coming out next month that I can try (non- sedating) I was told just today that if the botox helped and the trigger point helped but not completely that you might try doing both at the same time.Maybe the combined benefits will take hold of the pain for you. Good luck.
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Avatar_n_tn
It's discouraging to have no answers to this pain problem, huh?Do you know the name of the new medication that's coming out next month?  I'd like to ask my neuro about it.

Well, I'm gonna have the anesthetic injections this week & then we'll repeat the botox next month ('cause you can only do botox every 3 months).

Ugh-- I've gotten a headache every day for the past week.  The preventative meds don't seem to be helping.

thanks so much for your reply...

Shel
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Avatar_n_tn
Thank you for the suggestions.  I'm will look into the extra tests.  I'm not sure what type of specialist orders those tests, but will ask my pain management doctor this week.  Maybe he can refer me to someone.  I, too, suspect musculoskeletal, but hard to say.  Maybe it's even TMJ related?

I do appreciate your help.    Hoping to find a pain center in my area to put in a concerted effort in figuring this out.
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Avatar_n_tn
check your magnesium levels..........and even if you are a women check your testosterone levels......lower your stress levels .........get massages.............exercise your neck ....if you work on a computor all day find ways to take a break
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Avatar_n_tn
Hi Shellbell, I've been out of town just saw your post. No, I don't know the name of the drug but I go back to my neuro. on Oct.12 to start and I'll be glad to let you know what they are as soon as I get them. I've heard that that tmj can cause a lot of problems and I was told that I did have some issues but that was back in 1986 when it seemed like the rage to diagnose it and I had no insurance at the time so I never followed that route but it has been in the back of my mind on more than one occasion. There is something called cranial sacral therapy that you may want to look into also. You can get info on the internet about it. Good luck,Hon and I hope you feel better. Michele
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Avatar_n_tn
check out these links

TOS info:
http://www.nismat.org/ptcor/thoracic_outlet/
http://tos-syndrome.com/newpage12.htm
http://tos-syndrome.com
http://www.doctorellis.com
http://www.tellmeabouttos.com
http://www.causeof.org/posture_tos.htm
http://intraspec.ca/tos.php
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Avatar_n_tn
Hi, I wanted to get back with you. I hope you are doing well. I did go to the neuro and he did change my meds around. The new med is called Lyrica or Pregabalin, I was under the impression that it was taken when the pain started but it is something you have to take 3 times a day. I've been on it for a couple of days without any serious side effects.So good luck, give it a try if it sounds like something that may help and take care. Michele
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Avatar_m_tn
shellbell, i was a dentist until about 2 years ago, when i was forced to give up my practice due to serious neck/scapular pain that radiated to my shoulders and even my pectoral muscles. ALL of my tests for nerve related issues, and believe me there were a slew of them, came back negative including nerve conduction tests. As I had some limited ROM in my shoulders, I had both of them addressed surgically with minimal help with regard to pain (although my ROM is now excellent) I even had a 2 level minimally invasive surgical procedure on my neck, as there was some MRI/ radiographic evidence of formainal stenosis at c5/6 and c6/7. The neck surgery did nothing.
I am becoming more and more certain that my pain is of a myofascial (muscular, like your doctor told you) nature, brought on by years of poor posture and overuse. I would strongly suggest you contact a center that treats myofascial pain syndrome. Our solutions will revolve around muscle release and exercise to build up and "reprogram" affected muscles. It will not happen over night.. It may take months and months. Be patient and be committed.
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