I have had a headache for nearly 2 years and my doctors don't know what it is. Can anybody help me?

Posted , 4 users are following.

Problem:

I’ve had this headache that started on December 6, 2016, and has not gone away.

Background:

-I was 13 at the onset of the pain and I am now 15

-I am a female

-It first started when I went back to dance for the first time after a 3 week break

-I’ve had a history of headaches and migraines with aura before

-I have a history of General Anxiety Disorder and a therapist once told me I likely had clinical depression

-I had a concussion on March 3rd, 2018 which made things worse

-I have a 504 in school now

Symptoms:

-Located at my right temple

-I did not see my normal aura this time, however, there are times where my vision gets black around the edges

-The pain ranges from a 2/10-9/10

-Stress makes it worse

-Sometimes I’ll have another headache on top of my persistent one (a sinus headache or tension at other parts of my head)

-I have severe nausea but never any vomiting.

-I often have to take breaks in school

-Sometimes when the pain is bad it makes me unable to read or focus

-The concussion did not add any new symptoms, but it did make all my previous ones worse for about a month (nausea, headache, confusion, lightheadedness, memory loss)

Treatments and Tests:

-I’ve tried Reglan, amitriptyline, naproxen, steroids, Periactin, Topamax, Excedrin, Advil, Sudafed, Aleve, Tylenol, and prednisone. (not in that order)

-The only medication that has ever made it go away was the first round of steroids that I took about three weeks after the start of the pain

-As soon as I was off the steroids, the pain came back.

-Since the start of the headache, I have seen two neurologists, two therapists, an occupational therapist, two pediatricians, three ophthalmologists, been to patient first twice, and I even was in the ER once.

-Doctors have said the pain seems like a cluster headache but i have no other symptoms of them

-I have had an MRI scan and a CT with contrast in December 2016 and both were clear

-I had blood tests done and nothing of concern came up

-At my first pediatrician visit for the pain, the viewing of my optic nerve looked to be concerning, but when I went to an ophthalmologist they said the only issue was that I needed glasses (which I already had for about 5 years prior)

My current diagnosis is migraine with aura and status migrainosus, non intractable

My doctors can see why it started, but nobody can figure out why the pain has lasted for so long. Any ideas would help me at least find something to bring up at my next doctor visit.

 

0 likes, 4 replies

4 Replies

  • Posted

    Have you had your crp checked and esr? (Inflamation markers) have you tried cutting out foods that can cause inflamation like gluten and dairy?
    • Posted

      I have cut out those foods but have never even heard of crp or esr. I may have had them checked without knowing what it was, but I don't think I have. 

    • Posted

      You might see and have them check it if not. Have you had a ANA test done? You might have them check that too?
  • Posted

    Ask your neurologist or Dr if you can try a trial of indomethacin. It is the treatment for hemicrania continua. if you get better on indomethacin, that usually confirms the diagnosis of hemicrania continua.

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