u/satansxbbg

Hi Cluster Headache community. I'm from San Francisco California, coming to reddit because both my providers and myself have been faced with limited options that not brought more than 24 hours of relief.

Context:

As of today, July 4th, is day 235 of cluster headaches, migraines, and atypical facial pain that resembles trigeminal and occipital neuralgia. The pain I have been dealing with is debilitating and incapacitating, with sensations of hot searing and stabbing eye pain that radiates throughout the left side of my face and entire left 1/2 of head, feeling like hot oil is burning my skin. I have been to UCSF and Stanford ER with both practically saying there is nothing more they can outside of steroids. I'm trying to research a better care team at UCSF that can best advocate for my well being as my current has facilitated poor health management and comprehension of the severity despite my elaborations.

Oxygen therapy can be helpful, but Stanford will not prescribe it to me because I don't qualify in their parameters because my respiratory system is not compromised. My pain management team at UCSF is struggling to find a solution to bring this pain to a tolerable level, and I'm at a loss on where to turn looking for a more diligent team. Pain Management's advice was pain reprocessing therapy, which has been only officially studied for low back pain.

So far I've tried Triptans, Lyrica, Nortriptyline, Botox, Aimovig, Botox, Celebrex, Tylenol, Verapamil, GLP-1's, acupuncture, massage. Unfortunately, all have not brought substantial relief.

The ask:

If you're local do you know of any providers, primarily in SF, that are experienced with complex care/ chronic pain conditions and takes San Francisco Health Plan/ Medi- Cal? I'm willing to go outside for SF as well but wanted to start close.
Any wisdom on how to handle this mentally and how to advocate. Whether it's personal experience, advocacy groups or orgs for the disabled/chronically ill (local preferred).

Thank you all for your time to read this.

-Naomi

Hi SF, I'm coming to reddit because both my providers and myself have been faced with limited options that not brought more than 24 hours of relief from an illness called the "suicide disease". I'm turning 26 this month, nearly bed bound, and am struggling over this on various levels. Especially mentally. Photo attached for perspective

Context:

As of today, July 4th, is day 235 of cluster headaches and atypical facial pain that resembles trigeminal and occipital neuralgia. The pain I have been dealing with is debilitating and incapacitating, with sensations of hot searing and stabbing eye pain that radiates throughout the left side of my face and entire left 1/2 of head, feeling like hot oil is burning my skin. I have been to UCSF and Stanford ER with both practically saying there is nothing more they can outside of steroids. I'm trying to research a better care team at UCSF that can best advocate for my well being as my current has facilitated poor health management and comprehension of the severity despite my elaborations.

So far I've tried Triptans, Lyrica, Nortriptyline, Botox, Aimovig, Botox, Celebrex, Tylenol, Verapamil, GLP-1's, acupuncture, massage. Unfortunately, all have not brought substantial relief.

The ask:

I need help finding a provider primarily in SF that is experienced with complex care/ chronic pain conditions and takes San Francisco Health Plan/ Medi- Cal. I'm willing to go outside for SF as well but wanted to start close.
Any wisdom on how to handle this mentally and how to advocate. Whether it's personal experience, advocacy groups or orgs for the disabled/chronically ill (local preferred).
(Semi related) Working is rather limited because I've been bed bound.I'm looking for low income vet care and or grants so I can care for my babies.

Thank you all for your time to read this.

-Naomi

Cluster Headache and Aytipical Facial Pain Sufferer From San Francisco Seeking Guidence

Cluster Headache and Aytipical Facial Pain Sufferer Seeking SF/Bay Area Guidence