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 :)

Hello, and welcome! Where in CO are you located, though sounds like you're in Italy for a bit? I'm in Centennial, south suburb of Denver.

Sorry but can't say of my experience with Prednisone.  Personally have always used Nortriptylene but it takes FOREVER to kick in.  So this year they added Verapamil 4 days ago and told me to taper off the Nortriptylene.  I was following the D3 regimen pretty well, and didn't have one last night!

I used to get 3-4 day (1 at night for certain) starting around Christmas. But this year experiencing only 1/night about 5-6 on KIP and a couple during the day, but have abstained from alcohol for past 6 months and that could be a reason for the lesser attacks/pain. I'd recommend abstaining as I was pretty certain wine was a factor.   

Good luck!

Cmorrish,

Finding vitamin D3 capsules at higher concentrations like 5,000 IU in Italy may be a challenge but it's worth a try.

As far as testing only the melatonin during this cycle goes...  we've several CH'ers who started the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 while taking melatonin...  At least 80% of them experienced a significant reduction in the frequency and severity of their CH or they experienced a completely pain free response.

To date, I'd estimate at least 500 CH'ers have started the anti-inflammatory regimen and so far, the raw efficacy is holding strong around 80%.

See the attached for information on studies of melatonin as a CH preventative...

Take care,

V/R, Batch

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Welcome, NG,

Like a lot of us, you've waited a while to jump in.  It's time, though, and you'll get a lot of very good advice here.  I'm in cycle right now, though I kind of thought it was leaving just a few days ago.  Apparently I haven't been punished enough. 

Topimax.  Only can tell you my story, and it's a bad one.  In my experience, it was prescribed because it's what they do at some point to "lessen the electrical storm" or some such thing.  I had a ton of unwelcome side effects which took about 10 months to shake off after I discontinued.  AND it didn't make any improvements in my CH.

As for Imitrex, I am delighted it works so well for you.  It does for me, too.  I don't care for the drug thing either, so I followed the 'imitrex tip' at the left of the post and found it totally adequate to use less than the full dose.  In fact, I have now split my doses to get (3) out of a single 6 mg vial.  Means I get(6) treatments out of the two vials (instead of 2). 

Prednisone?  Never used it for CH, but you'll find that the people here tend to use almost anything else first.  CHer's stories will support whatever your decision is, but by and large the feeling is that the least offensive treatment to get relief is going to leave you the most left over to enjoy life. 

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. 

Keep the faith.  Good to meet you.

TJ

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.

Hi cmorrish
Your more than welcome to join our club. But, sorry you had
to join. On the vitamin D3 regime, you can get the whole
regiment on line at iherb.com. After suffering from CH's for
43yrs, i'm now CH free, thanks to Batch.

Hoppy.

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

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.

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

Batch wrote on Jan 13^th, 2014 at 7:16pm:

Cmorrish, Finding vitamin D3 capsules at higher concentrations like 5,000 IU in Italy may be a challenge but it's worth a try. V/R, Batch

Yup, it seems that italians do not have the same GNC type of industry here and that finding specific vitamin doses is next to impossible so D3 will have to wait until my summer.  Even e-commerce is limited and getting anything shipped from the states and through customes is futile.  We will have a lot of visitors later in the spring so I may have them make a costco run before they head over.  The good news is I had yet another PF night with the Melatonin, which puts me at 5PF of 6 nights since I started at 10 mg, so am optimistic I will be able to deal with this cycle with Melatonin. (5 mg time release 60 mins prior to bed, 5 mg quick release tab 10 mins before bed)

THanks all, I look forward to sharing with all of you in the future.

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