G'day Constantine, and you're so very welcome here. I can't answer your question myself but on the top left side of your screen is a button marked "Oxygen Info" and perhaps this might help a little.

Either way just stay with us because many people here are only too happy to help.

Welcome aboard,

Brian.

No need for apologies, Constantine, because everyone of us here is a ClusterHead or supports someone else who must live with this dread disease.

We have much knowledge we're so very happy to share to allow you to claw your life back.

You're amongst friends now, people who truly understand because we know this nightmare from the inside.

Welcome home.

Here's a quick rundown on some of the threads you'll be reading -

First and foremost we always ask if your Headache diagnosis came from someone qualified to do it. That's to ensure you haven't got something else with similar symptoms that might actually be much worse than our joyful little condition.

Then you'll be learning about oxygen as the Number One weapon in our arsenal. There's lots of info here on how to use it to great effect and it may not be the sort of thing you'd learn elsewhere.

After that there's some medications you can use to help with individual hits, and others that will help you get belted less often.

There's even a lovely concoction of vitamins that was introduced here some years ago, and since improved beyond compare by the selfless dedication of one of our members, which has made life-changing improvements to some 80% of sufferers who  take part.

Then there's little tricks like Red Bull energy drinks, of all things, chug-a-lugged at the first hint of a hit and it can make a major difference to what was going to happen.

Importantly, please understand that you are not alone, which can truly be the worst part of dealing with this monster.

Full steam ahead and damn the torpedoes!

Brian down under.

Hello Constantine,

As the guys said, you're among friends and expert patients here.

To read up on the Vitamin D treatment the guys referred to, look at the following link.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Read part 2 first, as it deals with doses and the mechanics of the treatment. It is currently helping over 80% of those of us using it, so it's worth a try.

Read and come back with questions galore, if you wish.

Peter

You're using O2 to abort an attack but you don't mention whether you are using a med to PREVENT attacks. Both are necessary. The duration of your cycles are affected by the preventive.

Print the article, below, and use it to talk your options with your doc.

AussieBrian wrote on Nov 19^th, 2016 at 11:53pm:


Lots of incredible info here, thank you. The vitamin regimen kind of blows my mind if that's actually going to work. On a random side note, I'm rehabbing an elbow injury where we need to kick up some inflammation to help it heal (tendinosis is a chronic injury marked by a lack of inflammation in the tissue), so I may have to just ride this cycle out as to not mess with that, but if these headaches don't end soon, I'm just going to bite the bullet and do it and hope the vitamins don't mess with my rehab.

Really appreciate you taking the time. That goes for all you guys here. This is a club no one wants to be a member of, but it's cool that there are cool people in it. I guess all of us understand what pain is. I think that type of person is an understanding, empathetic one, generally speaking.

Mike NZ wrote on Nov 20^th, 2016 at 12:17am:


First off, thanks for the PM, Mike. I just replied to you. Really appreciate the PDF files with medical research explaining WTF this stupid disease is. Yes, I'm definitely more informed than my GP at least at this point. I may have to fire her soon.

Re: Oxygen. On some days it's a godsend. It kills off the headache in like 10 minutes on 10 l/s, then from the advice of that poster named "Batch," i added an extra 5-10 minutes of O2 at 6 l/s. Some days it's great, but some days it doesn't work.

Yesterday for example, I got four headache attacks, and oxygen's affect was minimal. It killed the headache for about 10-30 minutes, then it would come back, stronger each time. Eventually, by the third headache, the O2 didn't work at all, and I was forced to ride out a 90 minute hell ride all alone.

I keep notes on my headaches, and I usually have a couple days of relief after a multi-headache day. I got four yesterday, and today I've had none so far. I may still get one (my notes say that does happen sometimes after a bad day), but usually, I get an off day after a bad day. Fingers crossed. It's Day 45.

Re: Celebrities. I did find out about Daniel Radcliffe. We all seriously need to contact that dude and convince him to be our Michael J. Fox. Dead serious.

Just read about the NFL guy, Terrence Knighton. Hope he follows through on his pledge to raise awareness for this now that his playing days appear to be over. I wish him the best.

So far, the only two things I've tried are oxygen and prednisone. I had a cycle back in July, got on predinose and it totally stopped the cycle. I gained 20 pounds (which sucked), but it stopped the cycle. Unfortunately, the cycle came back on October 7th according to my records. I know prednisone is just a temporary stop-gap for Verapmil, but I've gone my entire life without treating a single headache. Shocking I went 20 damn years before I finally got diagnosed.

As of right now, I'm taking all this information you guys have helped me gather, and I'm going to do my best to make an informed decision on my treatment. I'll certainly follow up and ask questions though along the way, to anyone in the mood to answer them. I guess my big fear is reading about all these terrible side effects, and that's holding me back. I'm weighing the decision between riding out a cycle vs. ending the cycle early but dealing with whatever side effect crap is thrown at me.

Peter510 wrote on Nov 20^th, 2016 at 5:48am:


It's totally nuts just some random guy figured out this crazy vitamin concoction. God bless that dude. Yes, I'm definitely going to try this first I think. Not sure when I'll try it, but I know I will have to at some point.

And thank you for the kind welcome, Peter. I seriously have never met another clusterhead in my life, and it's cool I've met a few of them here on this thread. Crazy situation we're all in.

BTW, on a side note, I'm loving all this clusterheadache lingo I'm having to learn. Pretty funny.

Peter510 wrote on Nov 20^th, 2016 at 5:55am:


Yea, I agree. It was so hurtful when she laughed at me like these headaches were no big deal. Of course, she wasn't even the one who diagnosed them. The neurologist did. I went back to her for a simple follow up, and that's when she goes "oh headaches, that's not bad, come on." She was laughing as she said it.

I told her off in the nicest way possible. I told her google it, watch Youtube videos of people going through it, and then come back and laugh again. I haven't seen her since. I think she could see the hurt in my face that she said something stupid.

I live in West Palm Beach, Florida. Originally from New Jersey. Been getting these headaches since I was 13 years old. I've been episodic my whole life, usually one 28-42 day cycle per year. Sometimes I get two cycles a year, sometimes it skips a year. This is my second cycle of 2016.

I always thought caffeine was causing these. I haven't had caffeine since I was 24 years old, but whenever a cycle would hit, I would think I accidentally got some in my system somehow, maybe through a bite of chocolate, or in a smoothie from a healthfood store, or a soft drink. Now, at least I know that I'm not causing these things anymore. Hey, maybe this means I can have my first cup of coffee in nearly a decade? Gotta appreciate the little things in this hard life of ours, am I right? 

Bob Johnson wrote on Nov 20^th, 2016 at 11:22am:


Hey, Bob! Thanks for the reply. So many cool people here.

Yea, I'm rolling with just the oxygen, and yes, I agree it isn't enough. For me, oxygen is like having a small 8-man squad of Navy Seals helping you against an army of one million zombies. Certainly, I'll take the help, but I'm still a major underdog. At least I'm not going through this with nothing anymore.

My hesitance to try real medication right now is a) the fear of the side effects, but more importantly b) which is to see if my cycle will end on its own soon. Usually my cycles are 28-42 days, and it's Day 45 now. Also, I have this weird suspicion that prednisone just made my cycle rebound. I took prednisone in July, which stopped the cycle, but it came back just 7 weeks later (on October 7th). Admittedly, I have ZERO scientific evidence that that's what happened, but it's my stupid gut feeling. Again, I admit, I have no logical basis for that opinion, so feel free to correct me if you disagree.

When you say "the duration is affected by the preventative," do you mean that it only shortens the cycle? Because I'm all in if that's the case. Have you ever had the cycle rebound because of the medication? Have you ever had your cycle lengthen as a result of the medications? Sorry if these are dumb questions.

Thanks, Bob. Appreciate the reply.

jon019 wrote on Nov 20^th, 2016 at 6:01pm:


Hey, Jon. Nice to meet you, thanks for the reply. Yea, none of us want to be members of this club haha. 0.2% of people get these and we had to win one crappy-ass lottery. Oh well, I guess.

So you're saying that over time, the O2 will work better for me? I will have fewer "rebound days" where I get 3-4 attacks? I don't think "rebound" is the right word, but hopefully you get what I'm saying. On a bad day, I get the headache, use 20 mins O2, then it comes back 45 minutes later, more O2, then it comes back 30 minutes later, more O2, and it doesn't work at all, and then I have to ride out a 2 hour headache... Brutal day right there. I did reach a Batch post explaining how to best administer O2, but even his advice doesn't work sometimes.

Yea, my sanity is in shambles at this point, not gonna lie. The O2 is certainly helping, but it's not nearly enough. I'm going to keep using it, but damn. Some days it just doesn't work.


Appreciate all the help so far, guys. Really really thankful. Wishing you guys well right now. I'd say cheers, but alcohol is the last thing I need right now haha. Be well, everyone. 

Peter510 wrote on Nov 21^st, 2016 at 6:18am:


Thanks, Peter. I replied to them. Hopefully I don't get murdered if I meet up with them haha.

jon019 wrote on Nov 21^st, 2016 at 2:20pm:


Hey, Jon. Nice to meet you, thanks for the reply. Yea, none of us want to be members of this club haha. 0.2% of people get these and we had to win one crappy-ass lottery. Oh well, I guess.

So you're saying that over time, the O2 will work better for me? I will have fewer "rebound days" where I get 3-4 attacks? I don't think "rebound" is the right word, but hopefully you get what I'm saying. On a bad day, I get the headache, use 20 mins O2, then it comes back 45 minutes later, more O2, then it comes back 30 minutes later, more O2, and it doesn't work at all, and then I have to ride out a 2 hour headache... Brutal day right there. I did reach a Batch post explaining how to best administer O2, but even his advice doesn't work sometimes. [/quote]


Yup....more than likely. And be prepared for some inconsistency...which will drive ya nuts too
Along the way (34 yrs) I've had several different experiences. 5 lpm worked well at one time....then at other times  25 lpm didn't. Years ago if I didn't hit the O2 immediately upon recognizing a hit...it was pointless to use.....and then for several yrs I had to wait until the hit reached a Kip 2 to start O2 or it would just come back. I cannot fathom an explanation....tho beyond the "toning" discussed by Batch, I believe if your hit is destined to last a certain amount of time....if you abort within that timeframe...the underlying cause is still present (O2 is treating the symptom...not the cause) and the hit MAY return.     (note on that last part...all pure speculation...to paraphrase Crash Davis..."I'm as full of doo-doo as the next guy")

....now my cycles are very low "volume" and my M tank gets dusty....but any hits are quite amenable to O2....be sure to get the mask from the ch.com store....mine is a prized possession....

Best

Jon


[/quote]

Constantine...a coupla other comments:

Re caffeine and avoidance. My thoughts are that consumption should be limited so that
the body does not become "used to"....THEN...when hit...a whopping big dose of caffeine plus
taurine (any number of energy drinks with at least 100 mg caffeine and 1000mg taurine)) fast
and COLD provides an immediate "jolt"...or more aptly...blood vessel constriction. I'm sorry that you are missing caffeine for so long and I completely understand....there were times I "almost" hoped
for  cycle just so I could have a damn cuppa joe again. But only as required. And note...in between cycles...caffeine as well as alcohol were NOT a problem. Try between cycles....I doubt either could
start a cycle. Heard of the "beer test" yet?....that's when ya think your cycle is over...so ya try
a beer to see....then HOPEFULLY a few more if you  are indeed.....

Re a celebrity clusterhead....similar to MJ FOX. I always thought the same...and if could be someone like Oprah we'd have a cure TOMORROW (NOT that I wish it on her or anyone!)....
However, while doing Senior drives to med appts I once took a fellow to his weekly Parkinson's group. Rather sheepishly I asked if it would be ok to sit in figuring I might be be an "intruder". Just the opposite...it reminded me of clusterheads...they wanted "civilians " to KNOW!

Price of inclusion was I had to describe what I knew about Parkinsons...they were gonna have some fun with me. Truth be told...I read a number of Neurology journals (for ch and other issues) so I knew some pretty good stuff...they were delighted. It was a very enjoyable meeting...and I learned a lot...BUT...when the subject of MJ FOX came up I was shocked. There was universal disgust...
NOT at Michael...they recognized his struggle and efforts...but they noted that to the world at large all Parkinsons meant was MJ FOX...PERIOD. Everything else was drowned out (even my description
included Michael..... so I kinda got it).

Would it be the same for CH....dunno...but it makes me think

Sorry for the ramble...I do so tend to...

Best

Jon

Buy the mask on sale here at CH.com Store (yellow tab above left of this page).

It's designed specifically for CH and is more effective than any other I've ever tried.

Best regards,

Peter.

This makes message #20 in this chain--but I don't see any sign that you are looking for a skilled headache doc to get a solid diagnois and some effective treatment.

Hint.....

Consant
I am one that has had enough bad luck with treatments that I don't do them anymore.
I've had these headaches for 27 years and have learned that my cycles extend when I 'treat them".
I use vigorous exercise, fasting, and ketoginic diet and have solid control over them using these methods.
I still get cycles, but the frequency continues to diminish as well as the duration.
Also I function well with these methods during a cycle, so I am not inclied to avoid tasks anymore.

I can't help you on the subjects of O2 as that was a total fail that I don't want to concern myself with anymore.
Good luck