Racer1_NC

Personally I'd switch doctors if one laughed at me.... Internet based cluster headache communities helped save my life. I have no time for self important gasbags who believe they know it all.

Some of you may know about Lilly's new drug Emgality. It appears that it's now FDA approved and ready to go for migraine. The interesting thing is during an interview this morning on CNBC, Christi Shaw, Lilly Bio-Medicines president spoke not only of the new drug's effectiveness with migraine but of Lilly's desire for FDA approval for cluster headache. Have a listen.....the CH reference starts at approximately 1:55. CNBC Video More about Emgality

It was good to see everyone. I no long take pics at the gatherings as I used to. I'm sure there are those that do and I hope some of them get posted up here.

If they can coil it, a pipeline could be a 3rd option. No doc here but we were faced with the choices when my wife was diagnosed a few years ago.

They like people to register in advance, but I think walk ups are fine.

They will have a couple larger tanks that will accept welding regs. You do not need a script to buy a medical tank regulator. Even though you use welding O2 it pays to keep a medical reg around. They can be had for under 30 bucks online. I hope you'll attend one of my informal O2 sessions where such things are covered in as much detail as possible. Please check your PM's here.

Depending on the location of the aneurysm a pipeline stint could be used. A small cut in the groin area beats brain surgery. Ask your doctor's opinion.

My thoughts on Verapamil from a different thread...

I THINK it was Lincare but I'm not 100% certain. From what I've gathered from others...and my own experience, your local office (of what ever supplier you can name) makes all the difference when negotiating rates. I had a supplier that was good as gold for years but when the management changed I was treated like a liar and a thief. Long story short, they had failed to charge out several tanks and accused me of stealing them. How I was supposedly able to steal these tanks from outside a locked cage was never addressed. Apparently anything but blaming employee incompetence was an acceptable answer. Needless to say I'm no longer with this vendor.

I have known several people that paid out of pocket for tanks. One in particular had a deal for $10 E tanks anywhere in the country. It can be done.

Mum3115, check your messages.

I believe you will find the rough outline in this thread: Here.

Very cool indeed!

I second CHFather's O2 statements. To the first question...yes.....someone can go from episodic to chronic....and back again. I know first hand because it happened to me. Now...I want you to take the following as just another piece of information from someone's experience, not as full on truth. Keeping that in mind I'd like to address Verapamil. Verapamil if often one of the first drugs a doctor will prescribe for CH. I know it sure helped me.....at first. I was on it for several years. At first when the cycle ended I could taper off and be drug free until the next cycle. After a time that changed.....the cycle would appear to be gone but if I tried to taper off, the CH would return. Enter the "controlled chronic" stage...and then the "not so controlled chronic" stage. After having quite enough of my head hurting I decided to make changes....tapered off verapamil during a low cycle while trying every known alternative...repeatedly. It took a while....a good while....but my head is now clear enough to just use D3 to stay PF. I know the CH is there.....just below the surface. Those "funny feelings" come every once in a while causing me to up the D3 for a while. I'm not cured. CH changes, adapts and never really is far away. I know that tomorrow I could wake up running for the O2 tank, but for now....head wise life is good. I'm not a doctor. Just someone with CH that believes continued Verapamil use turned me chronic for a while. As stated before...this was my experience. Everyone else in the world could be different.

I can't speak for everyone else but I will be holding at least 2 "Using O2, What Works for Me" sessions. I generally cover equipment and methods that seem to work best for the majority of us. Plenty of time for Q&A and sharing experiences.

Shucks....I was hoping to drive to the top on Sunday. Throw a O2 tank the back and head up. Glad you will be attending, always good to meet another ch'r.

There is a list of speakers / presenters here: https://clusterbusters.org/event/13th-annual-clusterbusters-patient-conference/ . It has been updated recently.

Many have found a low cost (under $30.00) CGA540 can be had on Amazon. Here It take a little bit of time to get the flow right because this regulator will provide much more O2 than needed for our use. Once you find the sweet spot, it's set and forget.

CBD has helped with a family member's fibro and migraines…..to the point that she's been able to scale back mainstream medications and have a better quality of life too. Cut out 4 rounds of Botox injections a year saving about $1600.00. YMMV

Gabapentin...I took it once cycle.....I called it my "Zero F**** Given" pill. Did dookie for clusters but I was in the best mood....didn't give a damn about anything. Don't worry, be happy come to life. Kinda freaked me out.

I think it's worth a shot.....heck....dang near anything with some verifiable data behind it is worth a trying.

As long as the situation allows, I will be there! Looking forward to seeing you again!

I second this.....come prepared!!

SMH.....

There was a gentleman around in the fledgling days of Clusterbusters who believed that the closer to the equator you lived, the better your head would be. If memory serves he moved south though I can't remember where other than he left the US. I've never tested the theory so I offer no opinion.