Hello, long time lurker on this site, never contributed until now.  I don't expect anyone to read a long verbose self description, but I have found great comfort in reading other peoples intros and stories so will post mine.  I wanted to finally make my first post as I have recently medicated the last few cycles and wanted to share my notes.  I also wanted to vent to someone other than my loving wife who hears enough of me…

I have been suffering from episodic CHs for 11 years, since I was 20.  I remember the first time I got CHs I was sure I was allergic to a particular wheat beer I had been drinking as I would get pinged with about a 5-6 Kip every time I had one. Coincidentially my other drink of choice at that time was redbull and vodka and I never got dinged when drinking those.  Through a little investigation (Via this site), I quickly backed into a self diagnosis of CHs, although I have been to Neuro several times since and have been officially diagnosed. I had a 2 year break about 6 years ago, but am back at my regular 2 a year.

First the Venting: I had my regularly scheduled cluster hit around early thanksgiving.  Medicated with a prednisone taper (which did not fully abort the cycle but kept me CH free during the cycle) and then was done around Dec10th.  Should be good until July or August now…...Not sure if it was the prednisone or what, but for the first time ever, I got a second cycle, starting Dec 28th.  The real pisser is I just moved to italy for 6 months on Jan first, which creates several problems.  1. I CANT DRINK VINO.  2. Only have 4 Imitrex injections with me.  3. Am in a non english speaking part of the country and don't think I can explain to a doc what CH is. 


Question: has anyone else gotten a second (definitely distinct, not continued) cycle right after another if prednisone was used.  I like to think I'm not going chronic.

Some random notes:

Usual Cycles: One winter, One late summer.  Always 1 night hit, never days.  Usually I can expect a 60 minute 5-6 Kip.  average cycle length is 42 days, and on average I probably get a hit 2 of every 3 nights.

This Cycle: still only nights and only one a night.  This one has been particularly intense with lots of 8's and 9s.  Tried Imitrex  injections for the first time ever on this cycle and it works like magic, abortion of cycle within 2 minutes both times.

I don't like meds in general.  Im not a super health nut but generally try to stay away from pharma.  Prednisone was too much for me, won't be doing that again.  Tried it for 2 cycles.  Doc next recommended Topomax, I have decided not to even give it a try, the cognitive impairment is really a turnoff as I am not that bright to begin with.

Never tried oxygen, but its on the list of things to try. 

I am trying melatonin for the first time this cycle, and had 3 PF nights in a row.  I know I am still in cycle because on night 4 I gave the middle finger to the beast and drank a glass of fine italian red wine.  He gave me the finger back and hit me with an 8.

also, I am really looking forward to the vit. D regiment, but am only trying one thing per cycle, and this time is melatonin. 

Anyways, Hi all, glad to meet you all and sorry to be a part of your club

Metoo wrote
Batch will help you understand the O2 thing.  I'll bet you can get a source of welding O2 wherever you are and find a regulator to use directly from an oxygen tube.  I've done it several times and it's oddly rewarding to beat the beast in a MacGyver sort of way when the Optimask isn't available and I get caught with my pants down. 

I think you mean the vitamin D3 regime. You can find info
on oxygen to your left on this page.

Hoppy.

Hoppy wrote on Jan 13^th, 2014 at 11:39pm:


Batch is also an oxygen guru, so he can help you with both!

I used a prednisone taper at the start of my cycles for many years, I'd do an 80 mg to zero taper over about two weeks while I waited for my prevent, lithium, to build up to a therapeutic dose. I can't say that it ever altered or lengthened a cycle for me. The beasts tendency to morph can make the cause and effect thing a real bear to figure out!

Joe