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New here....hi everyone


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Another newbie.....same story I guess,

Episodic for the past 15-20 years (at first I believed I had serious sinus problems), I truly found about cluster headaches on clusterheadaches.com in 2000 or 2001 if I remember correctly....

I have a neurologist specialized in cluster headaches since about 2007, and was episodic till February when I finished a cycle.......but the beast came back March 22nd, and has not left my head since.....getting worst....and worst :(

Normally, I would go through a cycle pain free (every 15 months) being on medication (Verapamil and Depakote and a few Zomig sprays sometime at night)

Now, I'm on Verpa, Depakote, Topamax, take up to 4 Zomig a day....and sometime an Imitrex shot.....and take oxygen to get faster relief from everything (the oxygen alone just gives me very little time in between attacks)

I have tried the vitamin D regimen 3 times to no results....maybe the vitamin D I am using is not the right one....

How can someone find something to bust when is 46 and not into drugs  :D

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Welcome, Yan!  Sorry for what you are going through, and hoping we can help you.  That's a very tough thing, going from episodic to what seems more like chronic.

I can assure you that most people here are not "into drugs," and most are able to arrange their busting strategies so there is little or no psychedelic effect--only a cessation of cluster attacks.  And many are much older than you: "Hipshot" (Dan), for example, is about

97. ;)  I think it's safe to say that seeds, such as rivea corymbosa seeds (RC), can almost always be used with virtually no psychedelic effects.  You can learn more about how to use seeds here http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

and also in other files by TommyD in the "Clusterbuster files" section of this board.  Ask questions -- plenty of very kind and knowledgeable folks here will help answer them.

I suppose your biggest challenge will be "detoxing" from your meds, some of which interfere with the effectiveness of "busting" with psychedelics.  So let's be sure you're giving the vitamin D3 regimen it's best shot.  You say "maybe the vitamin D I'm using is not the right one."  Is it D3 -- that's what the regimen calls for.  You can find it almost anyplace, but here's a list provided by "Batch" over at ch.com:

>>>>>>>>>>>>I buy these items at Costco.  Sam's Club has some of these vitamins and minerals under Member's Mark label.  You can buy the Kirkland brand over the Internet from Amazon or go to Puritan's Pride web site. They carry the same items.

Costco has the best deal on the 5,000 IU vitamin D3 softgels: $6.99 after $2 OFF Trunature® Vitamin D3 5000 IU Extra-strength 500 Softgels  < 3 cents/day 20 cents/week

Sam's Club: Member's Mark® Vitamin D-3 5000 IU - 400 softgels  $10.68  < 6 cents/day, <38 cents/week

Puritan's Pride SUNVITE™ MAXIMUM STRENGTH VITAMIN D (D-3) 5000 IU: 500 softgels for $14 <6 cents/day,  <40 cents/week<<<<<

And of course the D3 protocol also calls for calcium citrate, Omega-3 fish oil, and maybe a couple of glasses of lemonade or limeade each day.  I trust you've also done that.

Also, in terms of being able to detox, there are some oxygen strategies, sometimes referred to as "power using," that seem to work quicker and more lastingly than the 15lpm flow rate and the standard non-rebreather mask.  If you're interested, ask about these and someone will advise you.  Even at 15, many people say that the O2ptimask is more effective: http://www.clusterheadaches.com/khxc/index.php?app=ccp0&ns=catshow&ref=LifeGas

As I say -- ask questions.  In one way or another, we're all in this together, we all learn from each other, and we all care about each other.

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Thanks CHfather,

I meant "not into drugs", meaning I was not seeing myself trying to find LSD at the corner of the street....like there's still people taking LSD and listening to Jimmy Hendrix still.....lol ;)

As for the D3, I tried the Jamieson Vitamin D3 1,000 IU Chocolate Chewable type I bought at Costco. (I'm in Canada, and they do not carry the ones Batch is getting...... will try to find something similar and try again)

I was taking the Omega fish oil, the calcium citrate and the magnesium.....but not the lemonade.....

I read some of the seed threads, and saw that most places in Canada for seeds are not in business anymore (?)....at least, the sites are down.....

Thanks again :)

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One other thing would be detoxing from the meds....... I cannot be without meds........I would just lose my job without meds.....right now, I'm worried as it is that I would get a full 10 attack at work and not be able to abort it :(

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Yan, according to Batch's specifications, you want to be taking roughly 10,000 IU of D3 each day (with food), and I'd say the chocolate version is not a great idea, especially since chocolate is a CH trigger for a lot of folks.  Here in the US, one can get D3 almost anywhere -- grocery stores, pharmacies, etc.--and I'm sure you can also find it on the internet.  He suggests a glass of lemonade twice a day with meals.  This thread is hard to wade through, but it might at least be worth it to you to skim it for any important information: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0

Here's a site that I'm pretty sure is in Canada: http://www.tranceplants.net/

(One person here has said she did not think their seeds were very effective for her.)  The cost is low enough that if they'll ship before 8/5 (which is the way it sounds) you might just order 100 or 200 now -- but you do still have the detoxing to go through, so maybe you can wait.  Couldn't you order from a US-based supplier, such as iamshaman.com (I'm just asking -- don't know the technicalities)?

I hope some of this is helpful--I'm sorry your situation is so tough.  I take it there's some reason you can't have oxygen at work.

Jerry

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"Hipshot" (Dan), for example, is about 97.  

;D That oughta flush him out. ;D Looking forward to any responses.  ;D

Thank God for CHfather, that's all I have I have to say.

OK that's not ALL I have to say, :D but I sure am glad to see CHfather giving you such good, targeted advice, Yan.

Besides the critical info about the increased effectiveness of high flow 100% O2, it's also good to know that many find that the taurine/caffeine combo of an energy drink chugged at onset of attack will help the abort from O2 last much longer for some reason.

Sounds like you have a good job Yan, so assuming you can afford one, a demand valve system for your O2 might improve your results even that much more. This is anecdotal, but I know one guy who can routinely abort impending high Kip hits within 5 minutes with the E tank/demand valve he carries in the car.

And most importantly, it's paramount to know that many people do still listen to 'Jimmy' Hendrix, and it's actually spelled 'Jimi'.  :D ;D

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Thanks Jerry, I will try another kind of vitamin D and will also try it with food and take lemonade during the day also...... I was taking everything straight on an empty stomach in the morning....

As for the thread at clusterheadaches.com, I followed it and even participated while I had my last episode in January (before my world collapsed in March)

And one last thing.....I have a job that I cannot just stop for 15 minutes for oxygen without being unnoticed, and I do not believe they would keep me knowing I would not be "fit" for that type of work.... I got myself a small cylinder of O2 yesterday and will bring it with me in a gym bag, but if I get caught......I can see myself being fired....while taking an Imitrex shot in the washroom is much easier to do....and again, sometime, I cannot get to a washroom :(

Being a clusterhead is a real nightmare! (but, I really enjoy all the pain free time I get)  ;)

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CH Father,

you are so right about that site being hard to wade through.

Do you know why calcium citrate is recommended? And why not calcium carbonate? Is it related to stomach issues?

Yan,

Your employer doesn't allow sick days? You do have a serious condition, and I would think with proper letter from your Dr., the company would be understanding. If they fired you because of your medications, I'd think you'd have a law suit. But then I am a dreamer and expect common decency. I'm not able to function taking Topamax. I'd be a better employee using o2 vs. Topamax. Perhaps you could take a few days off to adjust to a change in treatment. I know easier said than done, but in the end it could help you so much. Best wishes     Leslie

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CH Father,

you are so right about that site being hard to wade through.  Do you know why calcium citrate is recommended? And why not calcium carbonate? Is it related to stomach issues?

   leslie, i did a small amount of research on the citrate/carbonate issue a while back.  in general, i think "batch" is saying (over at ch.com), "this is what worked for me, so why not do it this way?"  and that's pretty much the way i've approached it, too.   from my research, there doesn't seem to be a major difference in absorption of calcium whether it's in citrate form or carbonate form, but -- as you suggest -- it seems that the citrate is easier on the tummy and can be taken without accompanying food.  it could be, also, that the citrate is more often blended with magnesium and zinc (and often a small amount of d3), and someone (batch, i guess) thinks those ingredients are also important -- but i don't know that for sure.
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I've read that the older a person is, the less likely they are to be able to absorb crude'n cheap calcium carbonate, because oldsters tend to have less of the required stomach acids for breaking it down than a young'n has.

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