Bill H.

A couple years ago I posted to this board that I beat the devil by stopping smoking. Some members said they too had stopped smoking and it hadn't stopped the attacks. Well, I was wrong. Got hit last night with what seems to be a new cluster cycle after a 13 year hiatus. Although I had good resources when I was in NY-- including the wonderful Dr. Larry Newman, I'm now in Central Texas, starting from scratch. We have good quality medical care here, and I have a lead or two that I will follow up as soon as Monday rolls around. And the local hospital will treat me on an emergency basis, though I hate using emergency room services unless absolutely necessary. Not sure what triggered these-- I caught what I thought was the flu last week and didn't have any headache symptoms until yesterday-- and then last night, the throbbing ocular one sided pain started. So, I'm back in the battle. A couple questions for you troopers- first, there is some new injectable that is supposed to work as a blocker. It did not exist back when I was suffering originally. And if anybody knows, what's up with Medicare and o2 treatment? That was my relief back in the day, for home. The doctor would write a script, and a supplier of tanks would drop off some 02, I bought some hi-flo masks and could at least relieve the suffering temporarily. Now that I'm on Medicare (geezer), I looked up how they covered and it seems to be limited to patients in trials or sanctioned tests. If anybody here is in Austin and can give me local insight, it would be appreciated. It sucks to be back!!! regards, PS: I could have sworn I was on another board back in the day-- but back then, had a different email address (before I retired).

Greetings. I suffered from clusters since I was a teenager. I'm now close to 70 years old. When I was working, crazy hours, high stress, lots of coffee, cigarettes, etc. I suffered clusters like clockwork. (Sometimes, the cycle would begin a year to the day from the date of the last prescription, it was uncanny). I was using some ergotamine based pill prescribed by a neurologist that eventually got taken off the market in the U.S. The headaches were really killing me. I discovered Larry Newman, MD. who, at the time, was at St. Luke's in NYC. (He's now at NYU). He knew clusters unlike a lot of neurologists who just randomly picked medications that were part of the migraine treatment menu. I went through several in-hospital stays getting IVs of DHE 45. Finally, after a brain scan, I was told that I would likely have a stroke unless I quit smoking. The conventional wisdom at the time-- before 2010-- was that smoking was bad, but was not contributing or causing the headaches. I was a pretty heavy smoker and enjoyed it. But, the idea of a stroke scared me-- fast death OK, slow, agonizing wheel chair life, not so much. So I did a stint at a smoker cessation program. And guess what? No cluster headaches since. It's now been around 12 years. It's a miracle. Hey, I'm not down on smokers- I was one for 40 years and really did NOT want to quit. I enjoyed it. But, lo and behold, stopping helped me. Something to consider. These headaches are a pinnacle of pain that are impossible to describe to somebody who hasn't suffered one (icepick in the eye only starts to describe it). Man, I feel for anybody in the clutches of this stuff. I used to post on a Cluster Headache forum that I'm not sure still exists. But, I found this place. I get that you are supporting Psychedelics as a treatment and at the time I was dealing with this last, Harvard was supposed to do a study. I don't know if that happened. So, treat this as a PSA. Larry Newman is an awesome doctor if you are anywhere near NY. And in the meantime, my regards to all of you. I'm not sure what motivated me to sign up and post this other than to give back. Bill H.