Told to lower my expectations for headaches

by Harmony
(Washington, DC)

I am a 28 year old female experiencing daily headaches for the last 6 weeks with a history of frequent headaches and episodes of chronic daily headaches beginning when I was in my early teens. I was diagnosed with a combination of migraines and tension headaches February 2010.

Headaches start anywhere from the time I wake up to early afternoon. Pain is usually in a spot just above my right eye, around temples/just above ears, and/or the back of my head, and sometimes it feels like my whole head. I have tenderness on my scalp, especially above my ears. I am typically able to function, but it often takes effort. I have been known to grind and clench my teeth, but I do not have the pain in my jaw that I typically associate with doing that. I do have a night guard, but wearing it or not hasn’t had any noticeable effects. I do get tension in my neck and upper back and have been seeing a chiropractor for the last month; my neck and back feel better, but no improvement in headaches. Additional symptoms that may or may not be related- allergies, pain in/around joints (myofascial pain), bruise and scar easily, often have cold extremities, somewhat frequently digestive upset, and I’m very forgetful. There have been no accidents or head injuries that I am aware of that could be causing my symptoms.

I exercise 2-3 times per week- elliptical and running/walking treadmill and light strength training. I do not drink caffeine often, drink plenty of water, and try to eat somewhat well. I do not smoke, but do drink socially at times when I'm not experiencing headaches.

I had an MRI (normal), an EEG (non-distinguishable), and routine bloodwork (normal) within the last 2 years.

I currently take propranolol 20mg, Allegra 180mg, Veramyst, Nora-BE, riboflavin, butterbur, magnesium, a multivitamin, calcium, fish oil, and sam-e daily.

Headaches were under control for 2 years with amitriptyline, with occasional increases in dose. After which I was switched to Topamax (Feb/Mar 2012). Topamax reduced the headaches to about 4 per week initially, but due to unacceptable side effects I had to reduce dose and headaches became daily again until I stopped taking the Topamax. I was then switched to propranolol, which I’ve been on for 19 days and had headaches all but one, though the intensity of the headaches has been better the last few days. I have Maxalt, Imitrex, and Naprosyn to help with headaches, but am afraid of rebound headaches so only use these on really bad headaches or when I simply can’t stand to hurt anymore- I limit it to no more than twice a week, but usually less.

I have seen my PCP, 2 neurologists, an ENT, an allergist, a chiropractor, an ophthalmologist, a therapist, a psychiatrist, and taken stress management classes trying to find the cause of my headaches. My current neurologist told me yesterday that I need to lower my expectations. Have I really exhausted all my options? Am I really damned to live like this for the rest of my life?



Hi Harmony,

I am not quite sure what "lower your expectations means"..are you supposed to learn to live with chronic pain? I hope not! If you are expecting a cure for headache then the neurologist had a point, but there is management and the goal is one headache a month.

I do not see where you received infusions to break the cycle of pain. This really could help and you may need 2-3 in a row. We use IV steroid, magnesium and even depakon with toradol to break daily headaches. DHE-45 subcutaneous injectable twice a day for three days is another option.

Also Botox might be an excellent option. Talk to your neurologist and if you haven't seen a headache specialist please get to one near you. They might be able to provide the infusions for you or do the Botox.

Good luck
Mary Kay Betz MS RPA-C

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