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Hey DM. How did it go with Dr. Burish? He's in Houston, right? I'm up the road in Austin and might be interested in participating in the study. Let me know what your experience was like. 

Thanks! 

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He's awesome! A very cool, down to earth guy. I'm still super sensitive to sound, so he ensured the nurse taking the blood was aware of my sensitivity. Which, I must add, she was amazing. Whispered to me the entire time, ha! While I was giving blood, Dr. Burish went into the waiting room and asked my Dad if he wanted anything to eat or drink and they chatted until the blood work was completed. Then it was just a simple Q&A / interview session.

The greatest part is that he genuinely cares and is focused on what I find most fascinating about CH, the circadian aspects.

Yes - He's here in Houston, only a couple hours away. Please participate, let's be pioneers!

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Hey DM and AJS,

I've looked over the study protocol at clinicaltrials.gov for the Will Erwin Headache Research Center - Cluster Headache Study (WEC1).  This study covers the waterfront for Cluster Headache types and other TACs, or Trigeminal Neuralgias including but not limited to SUNCT, SUNA and hemicrania continua (HC) with the goal of characterizing the disease in detail.  It has an excellent data collection protocol for genetic and molecular biomarkers and imagery as well as objective clinical assessment measures including HIT-6 and GAD-7 scores. 

As this is essentially an investigation/survey of patients with these headache conditions with no specific interventions listed and no exclusion criteria for interventions being taken by participants at the time, this may be a fantastic opportunity to have a prestigious headache research center collect specific lab and clinical data on the effects of vitamin D3 and cofactors in preventing cluster headache and other TACs.

If you are interested, please let me know.  The sequence is to go through the initial screening exam and lab tests at the WEHRC to establish a baseline and to discuss your desire to start the anti-inflammatory regimen.  I will send you a copy of the latest anti-inflammatory regimen CH preventative treatment protocol if you decide to go further.

Thanks and take care,

V/R, Batch

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A brief update here: The Research Center touched base with me for the first time since I initially took part in the study. They asked to speak with my parents about behaviors I exhibited as a child.

I found that interesting.

Edit: Yes, my Mother obliged and is now actually going to take part in the study as well.  She's suffered from headache disorders for quite a while as well.

 

Edited by dmlonghorn

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