1. Community
  2. Brain and nerves
  3. Headache

Complicated Headaches - Long Post

Posted , 4 users are following.

barberry20
barberry20

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

2 likes, 2 replies

2 Replies

  • pat81257
    pat81257 barberry20

    Edited

    Hi Barberry.

    I suppose I'm not being of any help to you replying to your desperate letter as I have not got a clue, but I do sympathise with you as I suffered bad head pain on the top, left and back of my head daily for a few years now which pushes my BP up

    I suffer with everyday headaches from when I get up in the morning to bedtime. I do sleep because I now take 10mgs of Melatonin by morning my head is hurting again.

    I can tell my doctor has not a clue and is treating the symptoms and not the cause. He offered me Amitriptyline 10mgs one to five at night. These drugs have been on the market since 1961 and were used as a antidepressant, now used for pain/headaches , they did ease my headaches

    After 6 months I stopped taking them as I felt brain dead and unresponsive by morning and it took me a long time to wake up.

    Now trying Diazepam 5mg twice daily. They are addictive and I don't want to take them.

    I take BP meds and think perhaps they are the cause of my bad heads!

    I don't have a TV so spend a lot of time on my computer so now I'm trying anti blue light glasses, deep breathing and tapping. Perhaps alternative medicine may help?

    I do get out walking twice daily in the fresh air, I'm lucky enough to live by the coast.

    Hope it helps !

    I wish you well, take care and stay safe

  • tracy3210
    tracy3210 barberry20

    Posted

    I had headaches for more than one year. I took many kinds of stress headaches and migraines, too. My headaches was no relief. It took me a years to go many doctors. Now, I was diagnosed with anxiety disorders. I have been taking Duloxetine for almost year and the headaches are gone. It took about 8 months to feel the headaches relief.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.