Hi there. I am turning 40 this year and I have had clusters since 19. I live in Santa Clara, CA married, 2 little girls.

Always episodic thank god and I have had remissions as long as 2 years. In my 20's the clusters were always spring/fall. Now that has changed and they are at random times of year. Now I am currently in an attack for about a month.

I take verapamil and use Oxygen to treat headaches. I am looking into some of the other options, shrooms, rc seeds and willing to try.

I was diagnosed at 19 with cluster headaches and got my hands on the oxygen about 10 years ago. I had a good neuro in San Francisco who helped me out. Btw, i Just bought the O2 optimask and after tinkering with it it just blows away the crappy masks I was using before.

If you are reading this and are a sufferer I definitely feel for you, but in my opinion treatment options and info are so much better than it was say 10 years ago. For many years I didn't want to admit I had something wrong with me and wouldn't take care of the headaches properly. The first step for me was realizing what I had and seeking out treatments to help me.

I am not one to complain. There are other people in this world who have it much much worse than me whether it be a disease or just their quality of life.

I am interested to know if there are any other CH sufferers in the Northern California area.

Welcome to CH,com Koctail...
What does your O2 regulator go up to? Today 15lpm is considered minimum and many of us need more like 25lpm and above. You can purchase the higher reg's on your own.

The O2pti mask is the best thing since sliced bread. The best way to use this is being able to hyperventilate the O2 without emptying the bag during a breath. If you can then you need a higher flow reg.

My CH began in 1988, about when you started. Read around the site to find the most up to date info and ask questions as needed.

Don

thanks don. yep we have had ch for about the same time. mine started in the late 80s also. my regulator maxes out at 15 lpm. i am lucky though 12lpm seems to do the job for me.

Glad to here the O2 is working well. I've been using it since '89, even at 5-7lpm it was a big help. Better now though @ 25+. Whatever it takes.

Don

Hi Koctail,

Mine morphed from spring/fall too, now to late summer. I'm so glad the o2 is working well for you. There is a lot of new info out about higher lpm's- definitely read up on that to get the best results.

As far as alternative methods of treating ch, you can research START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE to help make an informed decision on what are the best treatment options for you.

Another who ia danged glad to hear you've been given oxygen. Shows we're having a little bit of success in getting that treatment out there!

Like you I started young, at 18, and also have 2 little girls, now 26 and 24...with the eldest getting married Saturday!! I used to have 2 cycles, spring and fall, 8-12 weeks, 2 hits a day. They were setting the atomic clock to my cycles. I hit my 40's and they went all over the map, skipping a year, then running an 8 month cycle!!! I will say since hitting my mid to late 40's the cycles don't seem as severe.

As to the alternative treatments, I'm in law enforcement so they are not an option. But there's certainly no arguing with their success rate.

Welcome to the board, a So-Cal person here...but I'll still talk to you!  :)

Joe

my headaches have changed a lot as well from when i was younger, but i think its for the better. i seem to have longer breaks inbetween headache attacks and the pain isnt as severe as when i was younger. im glad to have the oxygen and look forward to trying some of the other new alternatives.

i appreciate all your support. for years i thought i was the only one who had this bizarre problem. its reassuring to know there are others who can empathize with the pain, missed diagnosis, life disruptions this causes. in some ways i feel that the headaches have made me stronger, tougher. if i can live through these i feel i can take just about anything else on.

Hey Koctail,

I live just a city north of you in Sunnyvale. I have only been experiencing the ahem :-/ pleasure of clusters for a year and a ~third now, but am chronic.  I have been trying many things to try to better "deal" with the beast, but O2 is the only thing that seems to work for me!!  I am slowly getting my life back to a place where I am getting things done, and do love talking to other ch'ers.   ;)  I thoroughly enjoyed meeting many at the OUCH convention last year!  What an experience - I'd love to chat anyway!! 

Val