Daily Occipital Headaches

by Robin J.
(Lee's Summit, MO)

I am a 31 y/o female with daily occipital headaches times 6 months. I was first diagnosed with tension headaches by my primary care physician. The pain started out as bilateral occipital pain and progressed to generalized severe daily headaches.

Since then I have developed ringing in my ears, nausea, muscle tenderness in my legs, orthostatic hypotension (which resulted in one episode of syncope) and tingling in my hands, feet, and lips. My headache pain is made worse with increased activity. Due to that and the increased heart rate and dizziness upon standing, I have not been able to work for almost two months.

I have seen 2 neurologists (neither were headache specialists), a pain management doctor, and an endocrinologist. I have been diagnosed with occipital neuralgia and given 2 occipital nerve blocks which did not work.

I have had an MRI w/ and w/o contrast which were both negative. I tried Amitriptyline and Voltaren, neither of which helped. I am now on Topamax which has brought my pain down to 5/10 and restricted my pain to the occipital region.

I do have a history of migraines but these headaches do not feel like my previous migraines and they do not respond to my migraine medicines. I also went 2 weeks without any medications per the directions of the neurologist in order to rule out rebound headaches. I do not currently take any OTC medications.

You mentioned in a previous question that some occipital pain can be from a vascular problem. I have not had any doctors mention this possibility. Is a MRA required to see this? Can you please elaborate on this? I have always experienced mild orthostatic hypotension but it has been much worse over the last couple of months. Could this be related to my headaches?
Can you recommend a headache specialist in my area?

I am a mother of two and an ER nurse. I would really like to get back to my life. Any advice you can give me would be very helpful.

Thank you,
Robin

Answer:

Hi Robin,

I am glad you got to see neurologists but I am a bit surprised that with a new onset of occipital headache that no one has ordered the MRA. Although an MRI can show a moderate to large aneurysm, small ones can be missed. Your instincts are correct, especially with worsening hypotension, to get an MRA and view not only the Circle of Willis but also the vertebral/basilar arteries and rule out aneurysm.

External MRA of carotids or carotid dopplers should also be performed and with worsening hyptotension you need a cardiac workup. The neurologist would not do this but it should be directed by your PMD or a cardiologist. If the MRA and dopplers are normal, then I would also request a tilt table test to r/o neurocardiogenic syncope. You would be surprised how many of my female migraineurs have this!

Additionally, I do not see an EEG. With a new episode of syncope this is pretty much standard in our clinic.

Our standard blood work for a new headache patient includes TSH, thyroid panel, ESR, ANA, Vitamin B12, methylmelonic acid, CBC with diff, and Vitamin D levels.

Lets say all tests come back normal..if the topamax is working, the dose can be increased a bit and you might respond well to low dose steroid for a few weeks.

If repeated nerve blocks fail and you do indeed have occipital neuralgia that is chronic and refractory, occipital stimulators are showing excellent promise for this and other headache syndromes.

As far as headache specialists are concerned, near you there is only one listed for Kansas City:

Jennifer Bickel, MD
Univ of Kansas
913-588-3210

There is also a headache center in St Louis:

Dr. Robert Ryan and his associates,
Ryan Headache Center
314-205-0007

Good luck!
Mary Kay Betz MS RPA-C