@rocky1 hello Roxanne, I’m glad you’re here, but sorry to hear about your difficulties.
Would you please tell us what SUNCT/SUNA2 is about. I’ve never heard of this, I guess it’s because it’s rare…

Thanks

@rocky1 I was diagnosed with unremitting SUNCT in 2020 at UCSanFrancisco. I did my initial appt online and had follow ups ultrasound guided SPG etc in person.
The hardest part is a real diagnosis as Doctors (I have seen/spoken with research neurologists at 4 med schools ) continually say misdiagnosis is rampant. The only real way to know is if you respond to Lamotrigine. It doesn’t help SUNA or other Trigeminal issues. Presumably you were prescribed Lamotrigine by whoever diagnosed your SUNCT? If not - you need to focus on 1) Making an appt - perhaps online - at a campus with faculty doing research (eg UTHouston, Thomas Jefferson (Philadelphia) UCLA, UCSF, and having familiarity with SUNCT. This can take 6 months to get. My experience is that few Neurologists actually work with SUNCT patients but if they do they are interested in you. Check NIH online eg Pubmed to find researchers 2) Email the faculty member directly. 3) Most specialists will only act in an advisory capacity and you will need a local GP/ PCP or Neurologists to write prescription refills and work with them. I just want to warn you that a general headache medicine neurologist who may list SUNCT & TAC among of boatload of their specialties is not going to get you there unless they are engaged in. Research and communicating with other SUNCT researchers. I was lucky to find the right doctors and had a background in science research. Let us know how you get on.

@rocky1
Hi Roxanne - my name is Sharon and I was diagnosed with SUNcT at UC San Francisco in 2020. I connected on another page but just want to be sure that you find the right answer & point you in the right direction as this is not an easy path.
I did my initial UCSF appt online (I was referred from UCDavis as a possible TAC patient) and had follow ups ultrasound guided SPG etc in person.
The hardest part is a real diagnosis, as Doctors (I have seen/spoken with research neurologists at 4 med schools ) continually say misdiagnosis is rampant. The only real way to know is if you respond to Lamotrigine. It doesn’t help SUNA or other Trigeminal issues. Presumably you were prescribed Lamotrigine by whoever diagnosed your SUNCT? If not - you need to focus on 1) Making an appt - perhaps online - at a campus with faculty doing research (eg UTHouston, Thomas Jefferson (Philadelphia) UCLA, UCSF, and having familiarity with SUNCT. This can take 6 months to get. I would avoid generic headache Neurologists. My experience is that few Neurologists actually work with SUNCT patients, but if they do they are interested in you. Check NIH online eg Pubmed to find researchers 2) Email the faculty member directly - ChatGPT or Google . 3) Most specialists will only act in an advisory capacity and you will need a local GP/ PCP or Neurologists to write prescription refills and work with them. I just want to warn you that a general headache medicine neurologist who may list SUNCT & TAC among a boatload of their specialties is not going to get you there. Research and communicating with other SUNCT researchers is vital. I was lucky to find the right doctors and had a background in science research. Let us know how you get on.