I am new member.  Posting for the first time.

I presented at about 20 years of age.  Male.  Diagnosed properly at 40. Prior to that, either the episodes ended by the time I got to the doctor, or they pumped my sinuses up with antihistamines and sent me home or couldn't explain anything since most of my headaches happened at night. 

I will be 53 soon.  My attacks are not quite as severe as when I was younger, but last longer.  My first line is O2, my regulator maxes out at 7 lpm, I usually find relief in about 20 mins if I start O2 immediately. My headaches wake me up from sleep at EXACTLY the same time.

I tried Frovo last time and it worked remarkably well the first several times. I used to use sumatriptan, but it just seemed to stop working. Insurance only provides a couple of Frovo's a month. 

I also take Verapamil prophylacticly but I have no idea if it works.  I still get headaches. My triggers are certain chemical smells like paints, solvents and maybe some detergents, certain plants like gardenia (I think), but the most powerful trigger is the equinox / time changes.  That jacks me up worse than anything.  Just restarted the verapamil in anticipation of the time change / equinox.  I have also had them around the solstice, but not as frequently.  I find the Vitamin D discussion interesting because of my heliocentric episodes.  Hmmm?

I have a solid neurologist that is well studied on the topic and I am also 6 months into a Cluster Headache Research project at MemorialHermann. It is being underwritten by a $20 million grant by the parents of a young man that committed suicide because of Cluster Headaches. 

I think I am getting pretty good care.  I am considering  psilocibin following the Harvard Medical study and a poor man's version of the Vagus nerve stimulation device (TENS).

My eye is often tender post episode and so is my hair, like tender to the touch.  Sometimes my eye will start quickly twitching during the day rhythmically for a few moments.

I scored about an 87 on the intake survey for the research project with 45 being migraine and 100 being suicide.

My main reason for coming on this board is to see about publicizing the study.  If that is allowed.  There is no compensation, there are no meds, this isn't a part of drug trials.  They harvest eye fluid (annoying, but not particularly painful), extract a biopsy from your hip about the size of a number 2 pencil and about 1/4 inch deep to start a stem cell line.  I don't want to bias the study interview / intake by telling you what they do with the stem cells.  There is also an optional saliva collection for a Phase 2 genetics test.

There are 3 groups, blind to the actual researchers; cluster headache subjects (which they are still looking for participants), migraine suffers, and a independent control group.  Your data is sanitized and anonymous.  Only the lead doctor and his assistant can match a subject ID to a person.  It's not really the point.  The only "compensation" is knowing you might help find the source and in turn find a solution for others, maybe your great-grand-baby or great-great-grand-baby if this thing does have a genetic link that skips a few generations. 

If I am allowed to post the link to the study, I will, if not, I won't.  That's about it.  I fill my Rx's throughout the year and stockpile for my episodes.  Sometimes several per year, some years I have gone headache free (not many). They last about 1 to 1.5 months I guess.          

Thanks.  Nice to know I gave you a chuckle.  I actually have a an appt with my regular neurologist Thursday (not the research doc).  I'm going to get a Rx for a new regulator and mask based on what I have read this evening.  Also, taking her the Vitamin D report.  She called me last year to talk about the vagus stim when it came out, but my insurance wouldn't cover it. I see someone has reworked a $30.00 TENS.  I only drink a few drinks per week, if that.  When I am in the shit, I don't drink wine or liqueur for sure.  There are some other triggers that are joy-kills like orgasm. Smoking can trigger them.  Mostly, it's just a clock thing.  Ding, 2 AM, axe in your head. But once the party starts, those other things can kick off another rave.

This like a fundamentalist jihad on all of my vices. Thanks for O2 advice.

Welcome aboard. Wish you weren't here!

Your quote: "I also take Verapamil prophylacticly but I have no idea if it works.  I still get headaches."  My response, "If you wonder if your treatment is working, it isn't." -- Dr. Brian McGeeney (He's one of the best CH docs in the country right now and serves on the board of Clusterbusters.)

I'm fascinated by the study. I see no reason I couldn't be posted on the site, but the only thing I run around here is my mouth. I know I've certainly seen a lot worse publicized here for lesser reason.

jlc