Long Time Cluster Sufferer Who Beat the Devil

[Bill H.]

 

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. 

 

[snafu]

Was a smoker for 15 years, haven't smoked for 25 years. i still get attacks.

i am glad that the disease went into remission for you. but i highly doubt that there is a connection between that and quitting smoking.

 

 

[Shaun brearley]

4 hours ago, snugz365 said:

 

i am glad that the disease went into remission for you. but i highly doubt that there is a connection between that and quitting smoking.

 

 

@snugz365I'd agree 

[Bejeeber]

The fact that your attacks suddenly stopped when you quit smoking, and have stayed gone for 12 years since, suggests to me that for your individual case, there could be a connection between CH and smoking, even though this hasn't been seen for others. Whatever the case, congrats on this 12 year stint so far of beating the devil - it's always so great to hear of someone escaping the clutches!!!

[Chet20]

My clusters started at 18 before I started smoking! First started smoking around 21..quit multiple times in between hoping it'll end the CH, but still kept getting cycles. Infact after quitting, I usually pick up smoking again as result of the anxiety and trauma caused due to the attacks. Smoking somehow just helps deal with it (purely psychological i'm guessing, but I guess it acts a crutch to deal with the trauma).

But glad it worked for you!! 

[ScreamingEyeballs]

Was the pill Sansert by Sandoz/Novartis

 

Worked perfectly for me when I was 17. Off market now as you mention.  Wish i could still get it.

 

Good to hear this from you.

[Living with pain]

Congratulations with relief from all headaches. I’m not an expert, but smoking depletes several nutrients in the body. It’s just as easy to dismiss a correlation of smoking and CH, as it is to acknowledge a casual inference. The underlying causes of most headaches are complex.

In my case, hypnosis, NLP, ketogenic diet, a naturopathic doctor, and an integrative care team provided much relief. Sometimes my sparing partner is my release (Krav Maga and Catch Qrestling). One of my contributors was myofascial pain, which causes muscle knots (read properly). Trigger point injections in the muscles around the neck prevents a few types of headaches that I have. A posture corrective brace and neuromuscular stimulation prescription unit, prevents knot development.

Having the conditions is inspiring me to return to college-at mid-life-and complete degrees in biomedical science, with minors in neuropsychology and neurobiology. I plan on following up with a masters in nutritional biochemistry.

For now, I may be able to assist with hypnosis and NLP, as I am supposed to complete training as an NLP Practitioner in June. And, I should be completing my rapid behavioral profiling and hypnosis training by next year. I’ll check back in time. 

Resolutions to CH exist, just not in traditional medicine. When things are about to go South, I have dry needling done. I am waiting to try hyperbaric oxygen. While preposterous to most, I swear by ice baths and standing barefoot outside in just my trunks, when ten below outside. I avoid warm or hot showers, and I use tactical breathing techniques throughout my day. I’m slowly integrating meditation into my daily routine. 

Best of luck to all. Be well.