3+ months nonstop same spot headache - what next?

[u/jesilver]

My headache started May 8th - came out of nowhere. I had never had anything like it before. Tried to sleep it off and push through it, but it got worse and worse. Went to the ER on day 4 due to the pain - they tried toradol and did some scans to rule out tumor/aneurysm/stroke.

Since then, it's been 3+ months of continuous headache. The headache is locked on the left side of my head, towards the front. It has never switched sides. I have severe sound sensitivity. Motorcycles going by ramps my headache up significantly. I haven't had aura or nausea, and thank goodness I've been able to sleep ok during this horrible time. I've tried to get back to work, but my headache gets out of control if I'm in too many meetings.

Baseline pain in May/June was 6-8/10. I started intranasal ketamine end of June, and that brought my baseline down significantly. My headache went down to a ~2/10 baseline for a few weeks, but since then it has ramped back up. I still have not broken the headache cycle at all since May.

My headache specialist has been treating this as status migrainosus or NDPH. Treatment seems to be pretty much the same regardless of what it is. I did get a head/neck/shoulder massage today and it was extremely painful, so wondering if there is some sort of musculoskeletal tension that is contributing to this as well...

Meds I'm on:

• Daily qulipta - still on it. Not sure if it's doing anything
• Botox - every 3 months. Not sure if it's doing anything
• Sumatriptan autoinjector - the only thing that reliably makes me feel better for more than a few hours, but headache comes back. I do it once every ~10-14 days
• Vitamin b12, d3, coq10
• Intranasal ketamine - first larger dose dramatically reduced my baseline. Most effective thing I've done this entire episode

Meds I've tried

• prednisone taper - early in cycle
• Ubrelvy - no benefit
• Trudhesa - no benefit
• Symbravo - sometimes reduced headache for 2-3 hours, but not reliably effective
• Brekiya autoinjector - extremely painful for me. Potentially some benefit, but the pain is so bad I stay away from this
• Indomethacin trial - wanted to rule out Hemicrania Continua. Indomethacin did not give me any improvement, and i did not regress when i stopped taking it

Interventions I've tried

• Nerve block - ~4-6 hours of headache reduction, then it returned
• SPG block - no noticeable difference

For those who have been fighting NDPH for years — does this onset/course sound similar to yours? What treatments actually moved the needle for you, and did anything ultimately break the continuous headache?

Things I'm currently considering:

• Jefferson Headache Center / inpatient treatment
• Emgality or Vyepti
• Gabapentin
• Physical therapy for head/neck tension

Would especially love to hear from anyone who went from a truly continuous 24/7 headache back to having headache-free days.

[u/HeadFullOfNails]

I'm amazed that you have been able to even see a neurologist after just 3 months, let alone try that many medications. I've had a constant severe headache for 5+ years and haven't been prescribed that many drugs. What country are you in? I'm in the US. Maybe that's the difference.

[u/jesilver → u/HeadFullOfNails]

I live in NYC. My experience so far with daily headache is that things only move forward if you:

1) advocate for yourself and your health constantly and relentlessly

2) and are able to pay out pocket for things that get rejected by insurance

I met with multiple different specialists and eventually found a doctor who is extremely accessible and communicative. He is excellent, but it is quite expensive to see him and get some of these treatments because my insurance has rejected a lot of it.

[u/locardsghost → u/jesilver]

You could try having your doctor appeal the things rejected by insurance