Greetings all...

Your site helped me 4 yrs ago when I had my last episode. Unfortunately at that time i found you near the end of the episode.

This episode began for me a few weeks ago. I'm not a runner, but began running more frequently right before this cycle began. Interestingly, this is the second cycle that could have been triggered by running. Anyone heard of such a thing? Sounds bizarre I know, but oddly enough when I was running I noticed I can almost feel my brain bouncing up and down with the motion. I just can't help but wonder if this is a trigger.

This is definitely one of the worst cycles in memory. I'm 38 yrs old and have cycles every 3-4 yrs or so back since high school. They typically last 8 weeks. I've used imitrex in the past to abort which works well, but thankfully I also now have O2 thanks to your site. My doc incorrectly only rxed 8lpm so I have to get that fixed. It still works but takes a full 20 minutes.

I'm about 4 weeks through the cycle (which means about half way through). I'm starting to feel the pain switch sides. I don't remember that happening, but does this indicate the cycle coming to an end to anyone?

My new neuro has me on topamax which I've endured despite being fatigued and not seeing results. I'm seeing a new specialist next Monday just for another opinion.

Anyway, this is such a great site. Its great to have a community of support and people who share such specific info. Im also ready to try the vitamin D regimen that Batch recommends.

Be well!

crouchingjedi wrote on Oct 21^st, 2012 at 4:24pm:

This is definitely one of the worst cycles in memory. My new neuro has me on topamax which I've endured despite being fatigued and not seeing results. I'm seeing a new specialist next Monday just for another opinion.

Greetings to you and welcome.

Using a preventive med and not seeing results is frustrating, you might expect them to work, do something to help.  The dosage may need adjusting or a different preventative tried, but your doctor shouldn't leave you like that, unless he doesn't know.  Getting Imitrex and oxygen is a good move.  You just need a regulator that goes past 8Lpm.

If the new specialist is experienced with clusters, he may work on that preventative with you, feedback is important for adjusting to an effective level. 

A week can be a long time when getting hit, good you've got abortive help.  Hang in and look for a higher flow regulator in the meantime.  From what I've heard, ebay and Harbor Freight stores have them.  Some other suggestions may come, stick around.    :)

Actually running is good for CH.  Its the stopping...thats the culpret. Someone here has that at his tagline.  Do not relax...EVER. try chugging some of those energy drinks like Red Bull, Rockstar, etc. Strong coffee,the strongerthe better.

Thanks guys. I just ordered a new regulator.

I saw that about the running, Linda. I just don't get it. In my experience I can be running or doing cardio activity and feel the cluster coming on. Perhaps I'm allergic to exercise  ;)

Actually when I'm not in a cycle I'm a regular at the gym doing weights and aerobic activity, so this is frustrating. Hopefully over soon!

Can't say anything with any certainty when it comes to cycles and how they'll play out. Just when you think you got it figured out, the next one comes along and changes everything. Running shouldn't be a trigger for a cycle, and pain switching sides isn't that uncommon either. Hope you get out of this cycle ASAP.

Lancet. 1999 Sep 18;354(9183):1001-2.
Comment in:
Lancet. 2000 Jan 8;355(9198):147.

A new cluster headache precipitant: increased body heat.

Blau JN, Engel HO.

Exercise, a hot bath, or elevated environmental temperature provoked cluster headaches, within 1 h, in 75 out of 200 patients. This new observation accords with recognised precipitants--alcohol, histamine, and gyceryl trinitrate--perhaps via generalised vasodilatation or hypothalamic activation.

Publication Types:
Letter

PMID: 10501368 [PubMed]

Makes sense now.