Hello everybody,
If this is against the rules, please let me know. I am here seeking advice about my headaches. I am here out of desperation. I’m not necessarily seeking a diagnosis for my issue but rather advice on where to go next, what questions to ask my physicians, etc.
I am a 25-year-old male. I weigh 185 pounds. I have diagnoses of IBS with constipation, generalized anxiety disorder, and I am currently being evaluated by a sleep specialist for possible sleep apnea. I have dealt with headaches my entire life. My first MRI for headaches was after an accident in gymnastics where I hit my head in 2005. I had a CT in the ER, where they noticed a shadow, so the radiologist recommended an MRI. During this MRI, they noticed what they believed was a neuroepithelial cyst. This cyst is still present today and is slightly larger than it was previously.
Fast forward to high school, I had another MRI due to recurrent headaches. During this time, bilateral maxillary sinus retention cysts were noted. I was treated for allergies with nasal steroids and these headaches went away.
Fast forward to June, 2019. I started a new job where I had to park quite a way from my workspace. After arriving at work each day, I noticed I had a headache that would go away with a few minutes of inactivity and by cooling down. Eventually, however, these headaches became harder to abort. I ended up in the ER four times before I was hospitalized the first time, for what the neurologist called an intractable migraine. During my ER visits, I was given multiple doses of Toradol which provided no relief. I was also given Fioricet and given a lumbar puncture, which showed an elevated opening pressure of 29. I was started on Diamox by my ER physician for suspected IIH.
During my first hospitalization, my neurologists claimed my ER physician performed the LP incorrectly, as it is not likely for a male of normal weight to have elevated pressure or to have IIH. The LP was never repeated during this stay. I was diagnosed with an intractable migraine due to my symptoms: A headache that caused the worse pain of my entire life, balance issues making it hard to walk, slurred speech, and double vision. I had no light or sound sensitivity. I was treated with the valproic acid/DHE protocol, and I was discharged in the same condition that I was admitted in. During this stay, I had a CTA/CTV of the head/neck, an MRI with/without contrast of the head/neck/face. Everything was normal except for the cyst, which everybody agreed was benign.
I requested a second opinion and saw a neurologist at home. This neurologist agreed with the ER doctor and gave me a suspected diagnosis of IIH and increased my Diamox to 1,500mg/day. A repeat LP was ordered. About 2 months later, I had the repeat LP and had a normal opening pressure of 16. The neurologist said the Diamox was working and that was good. Due to my headaches worsening, the neurologist also started me on Depakote. I noticed no improvement with my symptoms.
I sought a 3rd opinion at the biggest hospital in my state with their headache specialist. He basically said the ER doctor and my last neurologist were wrong and diagnosed me with a migraine disorder. He continued the Depakote and prescribed Aimovig.
Two weeks later, I was hospitalized with a near inability to walk due to my headaches and dizziness. They continued the DHE/valproic acid protocol which provided no relief. I was also given an occipital nerve block just in case. After a few days, I had a new attending neurologist. He didn’t believe I had any symptoms of a migraine and started me on indomethacin, titrating me up to 250mg/day. This medication relieved my symptoms almost immediately, and I was diagnosed with with an indomethacin-responsive headache syndrome, chronic paroxysmal hemicrania. I was also diagnosed with primary exercise headaches.
However, I still experience headaches on a daily basis. If I take less than 200mg/day of indomethacin, I have debilitating headaches that nearly justify hospitalization. My headaches are worsened by any amount of exertion. Even doing dishes and sweeping my floors will trigger an immense headache.
Is there something my neurologists could be missing? Is there another medication I should ask about? What can treat the exertion aspect of the headaches? I will include a list of medications I am currently on, as well as a list of things I have tried for the headaches and their effectiveness.
Currently Taking:
Prazosin - 4mg/day for headaches
Venlafaxine - 75mg/day for headaches/anxiety
Doxepin - 10mg/day for sleep issues
Indomethacin - 200mg/day for headaches
Acetaminophen - 2,000 to 4,000mg/day for headaches
Miralax for constipation
Medications I have Tried for Headaches
Depakote - No relief
Aimovig - Six months so far and no relief
Sumatriptan - Oral and injections - No relief and negative cardiac symptoms
Nasal and IM Dihydroergotamine - No relief and based on recommendation of cardiologist in ER, I should not take again due to negative cardiac symptoms
Topiramate - No relief
Propranolol - No relief and negative side effects
Amitriptyline - No relief and negative side effects
Duloxetine - No relief