What works really well to give you a normal life?

[Jimmy Martinez]

Happy Holidays friends, I've been having CH since age 37, I'm now 52. They happen annually lasting for about 2-6 weeks. I've tried many many things (Vitamin D, oxygen, Verapamil, MM, acupuncture, Chinese herbs, Maxalt, etc.). What works best for me is:

* Oxygen to stop an attack but not KILL an attack.

* Maxalt: is my "go to" when I need to KILL an attack and extinguish for good.

In terms of dealing with this affliction and having it under control, I'd give myself a 2 out 10 rating. I feel I could be doing a much better job preventing cluster cycles, reducing the pain and frequency of attacks when I'm in a cycle, and curing myself completely.

I've read some stories about how some people have completely cured themselves of CH and they no longer have them at all. That is incredible and what I'm praying for.

I've read stories from people who seem to have a normal life and are able to successfully deal with and thwart their cycles/attacks. They still get CH but they seem to have it fully under control and mastered in terms of keeping it manageable so they can live a normal life.

And I've read stories like mine where people are not yet able to beat CH or manage it and they are in the throes of suffering (as I am now in my current cycle).

I'm basically a novice at dealing with CH so I was hoping some of you who have mastered either beating this demon or taming it very well can share some of their tried and true success stories. Based on scanning the cluster buster site, it seems like MM is the most prevalent device used to successfully combat CH. My problem with MM is that I don't know when my cycle is going to happen and I believe if you "bust" you cannot be on Verapamil or Maxalt which is impossible for me when I'm in a cycle. So I guess the answer is to "BUST" when you are not in a cycle and hope that during the busting session a cycle doesn't occur. I really need more info on Busting if anyone can start a thread with me I would be so grateful.

I vow to never leave anyone behind and that even if I find myself CH-Free one day, I will always donate, support, and be a part of the CH community because no one should ever experience pain like a CH attack. 

Also Gamma core, anyone have sustained positive experiences using it?

For the people that rate themselves a 7 or higher in terms of managing this horrible affliction (and having a normal life), please share your success stories and formulas and remedies as people like myself need help and hope.

I wish we could speak on the phone and have more FaceTime together.

By the way,  I'm a healthy guy who doesn't smoke or drink/use drugs. I'm more stressed than your average bear and have always wondered if stress is the real cause of my CH.

Thank you! Jimmy M in Los Angeles. 

[FunTimes]

Not sure what a "Normal" life is anymore. My new normal is to deal with things one day at a time and adjust. I know I am going to get beat down with a massive cluster at any time of any day so I am always ready to fight back with whatever I can. I keep oxygen in the car at all times, I have it in my office at work keep a triptan injection near by as much as I can and a 5hr energy drink in my pocket. I can no longer drink alcohol so my new norm in a social aspect is water and coffee. I am not shy or hiding my clusters so when someone who does not know what I deal with and comments about not drinking or avoiding some sort of smell I tell them how it is. I can no longer burn a candle, my wife can no longer ware perfumes and depending on how my clusters are on any given day I need to avoid other scented things like cooking dinner. 

This is my normal life, not great but it is what I have so I embrace it and know things could always be worse. The new normal and I still love it. 

[IslandStorm]

Follow your instincts & wisdom & knowledge of your own body, Jimmy. Adaptation for survival.

On Verapimil you wrote on November 21st:

"...it makes me feel very "off" and like I'm going to have a heart attack or seizure. And I feel very nervous exercising or exerting myself while (I) take it. "

Being active & outdoors on average 2+ hours/day is the game changer that shifted my "new normal" for my Chronic CH.

We are all unique physiologically & changing too. Exercise sounded insane to me 16 years ago when I had Episodic CH. 

When you are able to go 5 days without meds that are blockers (& cause rebounds) it may be possible to try busting again with better results. Have your O2 ready & cold caffeine if a CH hits. Ginger soft gels & CBD/THC help me with nausea.

Still busting every 7 days since starting out with every 5 in September after getting hit at the CB Conference & getting rescue O2 & compassionate support & encouragement from our CB family.

Grateful.

Best wishes.

[xBoss]

I'm just super grateful that the condition is tamed with less cycles and supportive tools for when in cycle. I consider it a huge win. DMT vape pens are magical abort tools for our condition.