Hi all.

Wanted to tell you my story, which I hope would be useful for some of you (I learned a lot here and it's time I give some back).

I'm episodic for 30 years now and I just broke one of the most vicious cycles I've ever had.

As in previous cycles I successfully used mainly O2 and Rizalt RPD (rizatriptan) as abortives and melatonin as a preventative. The RPD (dissolving wafers) is not as efficient as Imitrex injections but that's what I had.

This time the melatonin did not work as expected. Last year 2-3mg were enough to prevent my nocturnal attacks (I usually have one every night, exactly 90 minutes after falling asleep). I upped to dose to 5, 6, 8 and 9mg with no success. Than tried using 2mg of prolonged-release melatonin + 4.5mg of standard melatonin which works beautifully.

This happened after 4 weeks during which I had a Prednisone taper of 10 days for the first time (40mg x 3 days, down to 10mg). It stopped my nocturnal attacks, but I had more attacks and shadows during the day and nasty side effects. And when the taper was over, the attacks actually became worse.

The change in the way I use the melatonin made a huge change. Also, went for a subtle water therapy regimen - lots of water, especially when getting shadows and on the onset of every attack + one 8oz energy drink if the water didn't  help and than O2 at 15L/min. Had to use very little triptans this time.

My last 3 cycles were 6-7 weeks long and I think this one is not really over, since I'm on the 5th week and still have some shadows and non-CH headaches (I have the whole package: CH + TN + tension type + migraines). But I didn't wake up once during the past 4 nights, and didn't have one real attack in 5 days.

So although technically still in cycle, I don't suffer much. 

In the past few days I'm taking Vitamin D3 drops (my 25(OH)D is 21.5 which is a little low). Started with 1000 iu daily, than upped to 2000 iu, and I intend to gradually go into the full regimen. Also going to try Kudzu in powder form. But basically (hope I'm right) it seems like this year's cycle is ending.

Two final comments:
1. My use of energy drinks became MUCH more effective after realizing I should drink it at one sip. I think this is an under estimated abortive.
2. I read here that marijuana is a trigger for many. This, I think, has a lot to do with the specific variety used. True, THC is a vasodilator, but it's sometime efficient for "shutting off" excess brain activity and I know it's used successfully by Epilepsy sufferers. 

Good luck everybody!

A couple of others have posted that combining the standard and extended release melatonin made it a more effective combo to sleep thru the night.

I'm convinced the D-3 regimen has been at least partly responsible for my 30 month remission and have no intention of halting it until I'm proved wrong! ;)

Great to hear beasty is backing off, be sure and follow up with the full regimen, it's helping a lot of people.

Joe

Your Pred taper started too low, 80mg to start is most common.

You mentioned no preventative meds while your Pred transitional was in the process, are you not taking any preventatives at all?  Pred is a transitional med designed to be effective while the preventative med is titrating into your blood stream to therapeutic levels.  Pred alone is a poor prescription for CH's.

Your stated melatonin dosage is too low.  Many of us take 12--15mg about 30 minutes before bed.  It may take a few nights, but one should notice some improvement with night hits.  Melatonin is not an excellent choice as a promary preventative, but it has proven helpful for some.

Your o2 is too low for a fast abort, your D3 mg dosage is also too low and you didn;t share of you are ingestng other vitamins part of this anti-inflammatory regimen or not!?, marijuana is a common trigger-stay away!, good that you found energy drinks helpful when slammed at onset and not sipped ;), hmmm....are you under the care of a headache specialist? 

Really?....no preventative meds at all?

In order to abort fast with o2, you must hyperventilate to rid the co2, try increasing your o2 to 25 lpm and don't stop breathing fast til you pass out or abort, then reduce to 8--10 lpm and breath normal for 10 minutes just to make sure the beast is gone, then go enjoy life between hits. ;)  Are you using a NON-rebreather mask?

Hang tough! ;)

-Gregg in Las Vegas

Guiseppi - 10x!

LasVegas - First, thanks for the kind advice.

I'm Israeli. Most Headache "specialists" here are, how shell I put it... disappointing. For example: I had to find out for myself that I could benefit from O2, and only after finding CH.com and reading half of it I realized 15 lpm isn't the maximum there is... Fortunately, 12-15 lpm O2 (with NRM of course) usually works for me, and aborts the attack in 5-10 minutes.

I was misdiagnosed for many years. Than I was treated with Verapamil, Deralin, Depalept, Elatrol and several other meds, with partial success and lots of side effects. Since I'm episodic and suffer mostly from nocturnal attacks, the successful use of melatonin was perfect for me. Also, I had short cycles and long periods of remission until 5-6 years ago. 

I found melatonin to be effective (for me) in lower doses than other people take. This may be due to the fact that I'm also taking SSRI (which makes serotonin, and therefore melatonin as well, more available. I'm also on a Tryptophan rich diet for years).

To a lesser extent, melatonin also help with my daytime attacks, but I get less of these anyhow and am really good in aborting them (had many years of practice, even before being diagnosed).

I know 2000iu D3 is not much, but I believe in doing things gradually and only got my test results 5 days ago. Also, I have my first coffee on a sunny balcony every morning, which is a great way to earn some Vitamin D, get rid of excess melatonin and produce new serotonin.

Clearly, I'm not the worst case of CH there is. Maybe I'm just lucky and maybe it's because I know the beast so well after 30 years. I eat really well, I REALLY know my triggers, and I consume considerable amounts of coffee.      

...yet another PF night, this time with only 2+4mg melatonin.

That's great news Shooky, keep it coming!

Joe

shooky wrote on Oct 1^st, 2012 at 7:23am:

...yet another PF night, this time with only 2+4mg melatonin.

Great to read...congratulations! ;)

I've found nighttime relief with 15-20mg of Melatonin 10 minutes before I lay down.
I wake up around 3 AM or 4 AM, but I haven't had an attack at night in almost a week.

idorko - I know this waking up with no attack, happened to me too. The combination of regular and prolonged release melatonin helps me sleep for 7-8 hours strait now.

BTW -

7 PF days now.

Did have some kind of a strange hit today, very minor. Piece of cake.

After 15 days with no series hit, my cycle is officially over. Still have shadows and I do my best to avoid known triggers, but it's clear I'm not as sensitive as I was 2-3 weeks ago.

I'm on Vitamin D + Magnesium which might had some contribution to my recovery (technically, attacks stopped the day I started taking the D3, but this was when my cycle was gradually ending anyhow).

shooky wrote on Oct 16^th, 2012 at 5:30am:

After 15 days with no series hit, my cycle is officially over. Still have shadows and I do my best to avoid known triggers, but it's clear I'm not as sensitive as I was 2-3 weeks ago. I'm on Vitamin D + Magnesium which might had some contribution to my recovery (technically, attacks stopped the day I started taking the D3, but this was when my cycle was gradually ending anyhow).

That is wonderful to read shooky that your attacks have gone away. :)

However, if you are still experiencing shadows and still feel the need to avoid triggers, then with all due respect; you are unfortunately still in cycle.  The cycle is over when you no longer experience CH symptoms and you are successful with the "beer test" and/or other known triggers. 

Good luck, hope you end your cycle very soon and stay pain free for a long time ;)

-Gregg in Las Vegas

shooky wrote on Oct 16^th, 2012 at 5:30am:

After 15 days with no series hit, my cycle is officially over. Still have shadows and I do my best to avoid known triggers, but it's clear I'm not as sensitive as I was 2-3 weeks ago.

Congratulations, and welcome back to the land of the living! What, oh what, will you do with all that pain free time on your hands? God bless. lance

marijuana, does not trigger my hits, it actually helps a lot for CH Shadows and under kip-5 for me ! just thought i would through that out there.

thank guy.

LasVegas - in that case, maybe my formal diagnosis as CCH is true, because alcohol can give me an attack any time of the year, and I stopped drinking altogether 2 years ago. On the other hand, most of the year I'm not hardly as sensitive as I am during my 4-6 week cycles. If I drink a beer now I believe I'd probably get a KIP4-7. A month ago, the smell of alcohol was enough for KIP7+.

have a good chance

wimsey1 - save my business I guess.

lydia nichole - certain types of marijuana are actually considered very powerful abortives. I realize many people here know it to be a trigger, but it really depends on the variety used. True, marijuana is a vasodilator, BUT THC is known to be effective for Epilepsy due of it's ability to shut down excess brain activity. The hypothesis is that it also shuts down excess hypothalamic activity during a CH attack. For some lucky people this mean complete relief in seconds.