I think I have broken through this cycle and want to quickly share my story, maybe there will be something in here for somebody.

I had surgery for Prostate cancer on 8/11 and was home on 8/13. For 2 weeks I recovered and slept on and off whenever I could over a 24 hour day...about two weeks after surgery, around the end of August my first CH came back after 2 years. I was beside myself having to deal with post surgery and clusters. It was the strangest cycle I can remember after having these for 20 years (I am 41). I had them on both sides, but the predominant pain was on my left. Over the final 4 weeks or so I could bank on a CH in the early afternoon, and then every 1-2 hours when I should have been sleeping. I could not get my doctor to give me O2 and every Neurologist I called couldn't see me for 2 weeks and I never followed through...always hoping/thinking they would go away. Last week I went back to my Dr. to get my refills on Imitrex and asked him if he would give me Verapamil.....only because I read about it on this site. He started me off on 40mgs 3x per day which I did to start, and then I bumped myself up an extra 40mg when I went to bed. The shadows started lifting pretty quickly and then we had daylight savings on Sunday. Yesterday was the first 24 hour pain free day I have had in 8 weeks. It might all be coincidence because as best as I can remember, my recent cycles have been about that long. I have always believed daylight exposure, days getting longer/shorter, napping were the primary triggers for a cycle to start.

I also got recent news that my cancer fight is not over and the dr. said one of the things I have to prepare for is hormone therapy. Some of the recent posts have me a little scared because I can't imagine going through treatment while having CH...I am trying to keep a positive mind about it all. I am in the NY/NJ area if anybody needs support or help in any way.

I also love photography as a hobby and like to plug my website :)  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

If you made it this far, thanks for reading!

Doesn't it just all come at once, sometimes?!  Good luck to you!!!

Sorry to hear about the prostate cancer. My father has it too. In most cases it is treatable, my father has been getting hormone implants for a couple years.

I suggest you do what you have to do with getting O2. If you like your Dr. and he is afraid to give you O2 but will give you Imitrex and Verapamil (low dose BTW) you must see someone that will RX the O2.

With what you've been through and what is coming, taking charge of CH is something you have to do.

Good luck brother, Don

Hi David,

Yikes, sorry for the double whammy...one beast at a time is definitely enough...

Hang in, hang on...one day at a time brother...one day at a time...

Best,

Jon

Dave, I've been thru the same combination myself. You're looking into the future and getting anxious. You know how to deal with the CH (although I'd press the doc to increase the Verap to reduce the potential for attacks) and so this is not a new trip.

The hormone therapy has some annoying side effects but it's not going to knock you into the gutter. It's not likely that the two conditions will combine effects and make life impossible.

Two steps: print this article on Verap dosing and use it to talk to your doc and then look over this support group for PCA--an excellent group with men who have very deep experience and knowledge.
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Also explore: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

and, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
========

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

Welcome to the board...damn...when I feel like whining about my CH someone like you comes along and shows me my plate isn't nearly as full as I thought it was.

Oxygen...31 year CH'er here and the 02 has been the single biggest break thru for me on treatment. I can shut the beast down in less then 10 minutes. And anything Bob gives you to read....well that's golden. Wishing you success in the cancer war.

Joe

Tough spot. I don't know anything about how to cope in that situation, but the previous poster seemed to know quite alot about what you are facing.

I just wanted to give som kudos for the photos. Quite good stuff. You've managed to get quite an extreme amount of color and range without getting that oversaturated unreal look. I am a bit envious either of the nature you've seen or of your talent.
How much slider pulling have you been doing? :-)

Tip: I want to know more about the photo I'm looking at - it would be nice if you extracted some EXIF information and posted with the picture - or at least I would like to know what lense you were using.

Anyways, great work. Chin up, get through it and keep up the photography. :-)

May I suggest you print off some of the info in the "oxygen info" button in yellow to the left of the screen and take it with you to the Dr next time.  Ask him what his reasoning is for denying you something that has no side effects, and has proven to be quite beneficial to so many of us who use it.  When it is compared with the potential problems with Imitrex it makes no sense to me to deny its use, other than profit.

Jerry

Unable to check your pics on dial-up, but will like to when I get a chance at a different computer.

I'd have to say, you must have been the youngest patient in your urologist's office, hard to suspect at your age.  Not acquainted the affect of hormone therapy and clusters.  Going through the surgery recovery might be a set experience, but improving the CH experience can be managed better.  Going to check the links myself Bob posted.

Hope this cycle has ended and if it has, next time follow through with a headache specialist for oxygen, the verap seemed to work ok as a preventative.  Some good advice above and we're always here for support.