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New Member Looking to Get Acquainted (Read 282 times)
HouTx
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New Member Looking to Get Acquainted
Mar 5th, 2018 at 9:25pm
 
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.
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« Last Edit: Mar 5th, 2018 at 10:00pm by HouTx »  
 
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AussieBrian
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CH - It's all in your
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Cairns, Qld, Australia
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Re: New Member Looking to Get Acquainted
Reply #1 - Mar 5th, 2018 at 10:06pm
 
Welcome,  HouTx,  and thank you for the most delighted smile spread across my dial.  There's been some cracker comments here over the years and yours certainly goes into my collection of great memories -

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

That's right up there with the bestest ever description of our suffering which was written not by a ClusterHead at all,  but by one of our greatest supporters - 

"They go a place we can't access, nor ever hope to understand."

As to another part of your post,  I notice you use O2 at 7lpm while others are getting sentational results at 15lpm and anything up to 25.  On the left side of your screen is a list of buttons and half way down is one for Oxygen Info. A quick read can't hurt and might even help.

Thanks for the smile and I'm having a beer to toast your damn fine health,

Brian in Oz.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email meanytime at briandinkum@yahoo.com
 
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HouTx
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Re: New Member Looking to Get Acquainted
Reply #2 - Mar 5th, 2018 at 10:26pm
 
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.
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Mike NZ
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Oxygen rocks! D3 too!


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Auckland, New Zealand
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Re: New Member Looking to Get Acquainted
Reply #3 - Mar 6th, 2018 at 4:18pm
 
The O2 page is - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Quote:
"They go a place we can't access, nor ever hope to understand."


And for those close to us, we never want them to truly understand what a CH really is like, although in seeing us go through our CH torture sessions they get a vague idea. As we've often commented, it is hard for someone with CH to watch a video on YouTube or similar going through a CH and yet our supporters can be there every time.
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Callico
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Aurora IL
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Re: New Member Looking to Get Acquainted
Reply #4 - Mar 12th, 2018 at 3:34am
 
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
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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
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