Hello cyber cluster world!
      Pleased to make your acquaintances! I'm writing just days from the onset of my annual 3 to 6 week cycle, nervous as hell, especially since my O2 preparations have been laxadaisacal this go around, meaning lots of last minute scrambling, trying to get everything in line for that first, wrenching, 1am wake-up call. Yip-de-doo! Anyway, I'm looking foward to meeting and speaking with you, especially the seasoned and tested among you, whose words of wisdom I could sure use right now.
     A thought occured to me the other day: My headahces began about a year after I moved from Philly to Portland, Oregon. And I know it's probably a hopeless shot in the dark, but I've been wondering (and hoping) if my recent return to the Philly area might get me off the hook. Any thoughts?
      Thanks in advance, all you rare gems of human suffering! Oward with the battle, onward with life!

Welcome to the board jtuck, you have found the best cluster resource site and support group out there.
My experience is that no location, altitude, pollen, humidity, etc... has any affect on my clusters. Stuffy hot rooms and alcohol are my triggers. However, many here do talk of location/weather affecting them.

Edit: Please tell more on your treatment plan... and how well it works? We all learn from each other here.

Welcome to the board Tuck. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 35 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. You only mention oxygen....which is great....... I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link to make sure you're getting the maximum benefit from your 02:

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post " Anti-Inflammatory Regimen and Survey” It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Hey jtuck, good advice above. As for geography, sure there's a chance you might feel better in Philly. Why not? Then again, you might not. There's very little consensus about the effect of geography on CHs except they manage to be contrary no matter what we hope or think. Here's hopin' it is better for you this time around, but as you say, get prepared just in case. blessings. lance

Hey jtuck, I dont know about geo, but i did read that there has been findings in episodics that the spring and fall equinox(sp) appears to coinside with thier starts. Leading at least one doctor to study the effects of sunlight on the brain. Of course it has not been true for all, and as CHers know, thats the biggest mystery. Jury's still out for me but im gonna follow the data when I can. Good luck this yr I hope your pf.

Thank you one and all for your words of wisdom! I had a feeling I was being overly optimistic about the relationship between geography and the beast. That said, I am now one full-week past the typical start of my cycle, and I'm still pain-free. (Knock on wood, or a wood-like substance.)
     Guiseppi: Thanks for the very thorough enumerations of treatments. I'll get some Rockstar tomorrow! I have, in fact, seen a neurologist, and he did diagnose me with cyclical CH. My own treatment plan--and this is in response to Ttnolan's question--is merely two-pronged, but thus far it has been fairly effective. At the first sign of pain and/or tearing, I ingest a small amount of psilocybin. This is followed by oxygen at the rate of 2 to 10 lpm. The O2 I will suck on until the psilocybin kicks in, usually about 15 to 20 minutes later, at which point the pain recedes to a dull, manageable throb. Higher doses provide much greater pain relief, but with the unfortunate side-effects of mania and vertigo, and, well, the uncontrolable urge to dance naked in my living room. Without the psilocybin, the attacks usually last around 45 minutes, and are much, much more painful.
      This approach, I should say, is the only one I can afford, being as I am without health insurance. I'd love to try sumitriptan, or the others Guiseppi mentioned, but I'm afraid that's a little ways off.
       Thanks again, my fellow sufferers! I look foward to learning more from you in the coming weeks!

Hey J,
You need to check out clusterbusters.com
There you will find more information on your current treatment. It will help you fine tune your treatment. When following their protocol, many are getting complete, long lasting relief.

Edit: If you post over there I will welcome you to the board and have some immediate tips to make your treatment more effective.

What TTnolan said

Clusterbusters.com

Same method you're using but a much more organized, science based approach that'll buy you some pretty significant remissions.

Joe

Hey J,

It's likely not the location but rather the amount of quality sun exposure and diet. 

If you're getting an hour or more direct sunlight a week between 10 am and 2 pm, clad in a bathing suit and without any sun block your skin will build vitamin D3 reserves in the form of 25(OH)D.

See your doctor about getting the lab test for 25(OH)D.   If you're having cluster headaches... you're likely vitamin D3 deficient... and your lab results for 25(OH)D will come back less than 30 ng/mL.

CH'ers who have gone pain free on the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and then gone in for the 25(OH)D lab test have all come back with serum concentrations of 25(OH)D in a range of 60 to 110 ng/mL.

In as much as your CH cycle hasn't started yet, starting the anti-inflammatory regimen now might just help you avoid having any CH this fall.

You can find the complete list of anti-inflammatory regimen supplements, dosing instructions, dosing strategy, interactions and contraindications at the following link:

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Take care and please keep us posted,

V/R, Batch

Batch,
     You, my good sir, are a bearer of much-needed information! The more time I spend on this board, the more I realize how much I have to learn. That Vitamin D deficiency is an underlying--if not THE underlying--factor of my clusters seems to make sense: My first cycle began the autumn after my first full summer in the interminably-cloudy Pacific Northwest. I purchased some D3 today, and will read up on the strategies/regiments you have so generously recommended. Last night at 12:30PM saw the first shadow in what could be the beginning of this year's cycle. I'm still optimistic I'll be spared, of course, but suffice it to say my 02 tank is freshly waxed and raring to go. This news of D3 and sunlight is VERY heartening!