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ClusterHeadacheSurvivor

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Cluster Headache Videos of me on youtube
Apr 8^th, 2011 at 11:43pm

Dont know if I am doing this correct or if i have the correct forum....but I mad eboth these videos in hopes of helping someone who suffers or knows of someone suffering. Please forgive me and put in proper forum if I did wrong. Iam chronic. Over 5.5 year without 1 day releif. Some of you may have watched this video already.

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Batch

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Re: Cluster Headache Videos of me on youtube
Reply #1 - Apr 9^th, 2011 at 1:34pm

Hey CHS,

You've posted two very powerful videos on YouTube. Good on you for taking the initiative to get your story out about cluster headaches.

Now I'm going to talk turkey with you. There is no need to continue down your present path or to continue suffering like your videos illustrate.

I've been in your shoes as both an episodic and chronic CH'er for 16 years and suffered for nearly 5 years before these terrible headaches were correctly diagnosed, so I know how helpless you're feeling at times.

From what I've seen so far, the beast has you by the tender vittles and is jerking you around by the eyeball. It's in complete control of your life and you have none. You are the only person who can take control of the situation… You just need to know what to do.

Let me start with the disclaimer that I'm not a doctor and that you need to discuss the rest of this post with your physician.

Having said that, I've worked with hundreds of CH'ers like you over the last 6 years and have a better than average success rate in helping them gain control over the beast and in the process, regain a quality of life they didn't think possible. No one can stop cluster headaches from occurring, but learning how to manage them will put a new light in your life.

I don’t know your CH history, but if your videos and your explanations are any indication, it appears you've never been prescribed an effective means of intervention.

If that's the case, take a look at the following link as a starting point. It's the National Guideline Clearinghouse site that lists the standards of care in treating most disorders. This particular link presents the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias. Print the pages of this link and take them with you for your next appointment. The operable part of this link is illustrated in the table below:

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If you've not tried the acute and preventative treatments in the cluster headache column marked with an "(A)" you've got a starting point. These recommendations were developed by a European Federation of Neurological Societies task force of neurologists who number among the brightest minds in the field of neurology specializing in treatment of patients suffering from the cluster headache disorder. They see more cluster headache sufferers in a week than most neurologists see in an entire career.

If on the other hand you've already been prescribed and tried a prednisone taper and titrated up on verapamil while on that taper or had oxygen therapy prescribed as an abortive at a minimum flow rate of 15 liters/ minute with a non-rebreathing oxygen mask along with sumatriptan succinate nasal spray or injections as an escape abortive and you still have no control over the beast, there are a couple more things to try.

The first is oxygen therapy at flow rates that support hyperventilation. The minimum flow rate for this method of oxygen therapy is 25 liters/minute and most of us who use this method of oxygen therapy use much higher flow rates or an oxygen demand valve. We've found this method of oxygen therapy far more effective than the typical prescription at flow rates of 12 to 15 liters/minute. Shoot me a PM an email, or give me a call on Skype and I'll send you some material on this method of oxygen therapy.

Finally, we've recently found that a regimen of 3000mg Omega 3 Fish Oil, 10,000I.U. vitamin D3, and two of the calcium citrate tablets formulated with vitamin D3, magnesium and zinc is showing great promise in reducing both the frequency and severity of CH. To date, better than 90% of the CH'ers who are using this regimen have experienced a marked reduction in both the frequency and severity of their CH or… they've gone into a PF remission.

If you compare the CH response to this regimen with verapamil that’s typically 50% effective, you might be tempted to ask… Why take a more invasive medication with more potentially harmful side effects when an over the counter regimen of vitamins and minerals does a better job with no side effects?

Take a look at the following link titled "123 Days PF and I Think I know Why" and be sure to read all seven pages... In particular, read posts from CH'ers who are experiencing a marked reduction in the frequency and severity of their CH.

Again, please discuss the contents of this post with your physician… The ball is in your court.

Take care,

V/R, Batch

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« Last Edit: Apr 9^th, 2011 at 1:38pm by Batch »

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ClusterHeadacheSurvivor

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Re: Cluster Headache Videos of me on youtube
Reply #2 - Apr 9^th, 2011 at 3:25pm

thanks Batch! I been a guinea pig for all theat stuff. Nothing worked...you name it. I tried it.
What my video doesnt mention is that I manage on my own day to day with support of my fiance and son.
I dont take preventatives or abortives because they dont work for me. What worked for some doesnt work for others.
I use Aleve for very minor attacks and Imitrex injections for severe. I suck it up and live with these day in day out. I have never been eposodic. I am 110% chronic. 5.5 years and not ONE DAY off. EVER. I been to neurologist like most have been to coffee shops. I deal with it best I can. The one video of me having the attack is like a Kip 6/7. Not even close to a Kip 10. I have often though of doing a Kip 10 video BUT i dont ask for pitty from no one. Just understanding. Iam last guy to ever want pitty or to feel sorry for. I made the videos to explain to people what it is, how it is and so forth. I am not depressed. Not even sad. I get sad when I have an attack but hey thats par for course. I am a fairly adjusted man. yeah I have my bad days but who doesnt on here. I refuse to be pumped full of drugs to try to help me when 3 solid years of crap pumped into my body did absolutely NOTHING. Except bad side effects. The straw that broke the camels back was impotence. Once that happened I poured every pill down the toilet. And within a week I was back to normal. Not once ever did my attacks subside or get 1 percent relief from all those drugs. Not once. All that money spent got my no where. So for me...its mind over matter. I have what I have and move forward. I came close to death2x 3 years ago. My son helped me. The reason i chose to live. My fiance thinks I am extremly strong guy. I beg to differ. I just came to acceptance. I appreciate all the drug advice people have given me. but i tried it all and nothign works. My nuerologist said its less than 4 percent for chronic sufferers to find any releif or abortive yada yada. So i wake up each day, trying to smile. I get knocked down. I stand back up.
I recently broken my right hand and still have a severe sprained ankle after 5 months of physio. Nothing is as bad as a CH but i have has so many i am used to it...kinda. You never get used to it. I just know what to expect.
Know what I mean? I average 5 attacks a day. Some days over 10. 3 if I am very lucky. and definately 2 Kip 10s a day minimum. I have thick skin.
The only thing that bothers me mentally is having my son and fiance watch me suffer day in day out. They have no idea what i go through yet I have no idea how sad it must be to watch me suffer helplessly.
with that being said thanks for the support from CH.com and my family and friends.
last thing I will mention as I posted it many times on youtube. i will never ever in my life try any illegal narcotic for my Chs. EVER. I respect others opinions and views. Just respect mine. It will never happen.
Thanks all and have a super day !

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Cluster Headache Videos of me on youtube Reply #3 - Apr 9^th, 2011 at 4:03pm You never mentioned oxygen. Tried it? Potter
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ClusterHeadacheSurvivor CH.com Junior Offline I love YaBB 1G - SP1! Posts: 29 x0\|London\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: Cluster Headache Videos of me on youtube Reply #4 - Apr 9^th, 2011 at 4:39pm yes, and all he above...like i said....I was a guniea pig for try this try that....what works for some, dont work for me. O2 does not work for me.
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Batch

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Re: Cluster Headache Videos of me on youtube
Reply #5 - Apr 9^th, 2011 at 4:53pm

Hey CHS,

Sounds like you've adjusted to letting the beast have its way with you...

Regarding Potter's question on oxygen therapy... Have you tried oxygen therapy at flow rates ≥25 liters/minute? If not... you've missing out on a very effective abortive that should stop the pain in an average of 7 minutes... much less if you catch a CH early. If used properly, this method of oxygen therapy is just as fast as imitrex injections and there are no side effects.

Also, take a look at the following link:

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This is another no-brainer... It's better than 90% effective, all the ingredients are good for you, and there are no side effects save for an increase in energy and some possible weight loss if you increase your level of physical activity. It might even help get your endocrine system back in balance.

Again, shoot me an email so I can send you more information.

Take care,

V/R, Batch

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ClusterHeadacheSurvivor

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Re: Cluster Headache Videos of me on youtube
Reply #6 - Apr 9^th, 2011 at 5:14pm

I have really bad irritable Bowel syndrome. I will have to lok further into this as my stomach is beyond sensitive. I tried fish oil before and I got really sick. Perhaps to much iron? not sure. I have to be really carefull. Iam lastose intolerant aswell. Common with IBS. Anything high in acid and I am on toilet ALL DAY. its just under control now somewhat and I dont want to mess with it. Ill do some research and look into it. I only recently because intrested in naturual remedies and homipath as I take COLD F/X daily and have NOT had the flu, cold or anything in 2 yrs 4 months. Its a cold immune system booster sold here in Canada. It works.
Anytime I have started satking supliments/vitamins and so forth my IBS goes like wildfire. Seems I cant win. LOL
Had IBS as far as I can remember so nothing new. I just deal with it. I also have exzema to top off my monthly doctors appointments! LOL Grin

Medically I am a doctors dream. Also have arthritis in lower back, rosascia and still my asprianed anlkle of 5 months and broken 5th metacarpil. LOL....and you think you had a bad day.....try wiping after a #2 on one foot with your oppostie hand while having an attack! Now thats a sight to see. LOL
I have to laugh about it, because if I didnt....id be something messed up! Cry

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ClusterHeadacheSurvivor CH.com Junior Offline I love YaBB 1G - SP1! Posts: 29 x0\|London\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: Cluster Headache Videos of me on youtube Reply #7 - Apr 9^th, 2011 at 7:59pm does anyone know how to post the videos on here without cut and pasting the link like I did...meaning to show the video in a box?
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Brew

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Re: Cluster Headache Videos of me on youtube
Reply #8 - Apr 9^th, 2011 at 8:10pm

When you're ready, go here and read:

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After over 10 years of being episodic, then more than 5 years of being chronic, I have now been pain free for over a year. Minor K1 shadows from time to time. That's it. All from about 3 months' worth of dosing once a week, to a maintenance dose once every six months.

I have my life back. I hope you can get yours back, too.

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Skyhawk5

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Re: Cluster Headache Videos of me on youtube
Reply #9 - Apr 10^th, 2011 at 1:24am

I watched your videos, good work. I'm curious, when you tried O2 what type of mask did you use? If it was a nasal canula or mask without a bag, these do not work to abort CH hits.

What flow or LPM did you use? Did you get on the O2 at the first sign of pain?? There are many on this Board that said, "O2 doesn't work for me" only to find that it can with correct equipment and technique.

I've used O2 for CH almost 23 yrs, and it's one thing I can't live without.

Best of Luck, Don (across the bridge)

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Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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E-Double

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Re: Cluster Headache Videos of me on youtube
Reply #10 - Apr 10^th, 2011 at 1:41pm

Very powerful!
It's like looking in the mirror.

I understand being fed up with meds.
I gave up on meds and completed detox in 06 and have been in a chronic state since 04. I'm med free since 06 with exception of O2 and the once in a blue moon use of imitrex and or zyprexa.

For me I encountered every side effect and that was worse than the pain as it shut me down from being functional. I need my wits for my job.

I can deal with the pain. I'll abort. I couldnt deal with being slow

Hang in there!!!!

Eric

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I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.

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ClusterHeadacheSurvivor CH.com Junior Offline I love YaBB 1G - SP1! Posts: 29 x0\|London\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: Cluster Headache Videos of me on youtube Reply #11 - Apr 10^th, 2011 at 5:21pm Eric, yo hit the nail on the head. I have no intrest in trying any more drugs. Finally someone who understands !
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Batch

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Re: Cluster Headache Videos of me on youtube
Reply #12 - Apr 11^th, 2011 at 3:28pm

CHS,

It appears you missed the operable part of E-Double's post... "with exception of O2" he uses it successfully. That helps him avoid mirroring your video when the beast attacks him.

For a second time... What oxygen flow rate were you using and did the non-rebreathing mask have a 3-liter reservoir bag?

From my experience and that of several other CH'ers, too low an oxygen flow rate and a 1-liter reservoir bag is almost a sure recipe for long or no aborts with oxygen therapy at the higher pain levels.

Take care,

V/R, Batch

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« Last Edit: Apr 11^th, 2011 at 3:28pm by Batch »

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Re: Cluster Headache Videos of me on youtube
Reply #13 - Apr 12^th, 2011 at 3:36pm

I can't pretend to know how you feel, I've never suffered through these types of headaches, but the man I love does. Everyday he suffers with the pain and like you he does not let it get him down, he goes to work everyday, never calls off. It is hard on him but he never asks for pity or whines about any of it. And like you he has tried different meds and none of them have worked he has yet to try O2 because he has no insurance but I don't think he wants to go down that road. I don't even know that he could have it at the place where he is staying. Any way I commend you for being so strong and dealing with it and not letting it get you down.

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ClusterHeadacheSurvivor CH.com Junior Offline I love YaBB 1G - SP1! Posts: 29 x0\|London\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: Cluster Headache Videos of me on youtube Reply #14 - Apr 12^th, 2011 at 8:22pm thanks for the kind words. I went to Police College and they say it takes a certain kinda person to be a cop. No iam not a cop(CH) and it also takes a certain kinda person to live with ch. Hope your guy stays strong! for the record. yes I tried 02.DOES NOT WORK FOR ME!
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Cluster Headache Videos of me on youtube Reply #15 - Apr 12^th, 2011 at 9:00pm Specifically, how did you use O2? Flow rate? Type of mask? Breathing method?
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ClusterHeadacheSurvivor CH.com Junior Offline I love YaBB 1G - SP1! Posts: 29 x0\|London\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: Cluster Headache Videos of me on youtube Reply #16 - Apr 12^th, 2011 at 11:35pm i dont need to answer that. I said i tried it, it dont work, leave it at that please and thank you
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E-Double

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Re: Cluster Headache Videos of me on youtube
Reply #17 - Apr 13^th, 2011 at 1:35am

ClusterHeadacheSurvivor wrote on Apr 12^th, 2011 at 11:35pm:

i dont need to answer that. I said i tried it, it dont work, leave it at that please and thank you

What's up brother!?! I will support your quest fir knowledge and survival and of course support; however, your last statement came off not only as abrubt or curt but as very defensive.
Whatever you think you may have tried there are Those who have tried more and have learned and are now teaching the rest of us how to make certain tools work better.
I've told you that I only use oxygen bEcause I don't want to deal with meds. That doesn't make me extra tough or stubborn it makes me a man who learned to deal with CH a certain way through experience and education. With all due respect you're coming off as I'd you are trying to be a martyr

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I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Cluster Headache Videos of me on youtube Reply #18 - Apr 13^th, 2011 at 7:08am Put down the gun, bro. There are literally hundreds of different ways to use oxygen, and only one or two of them will abort a cluster headache. That's why I asked.
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Re: Cluster Headache Videos of me on youtube
Reply #19 - Apr 13^th, 2011 at 12:28pm

Quote:

i dont need to answer that. I said i tried it, it dont work, leave it at that please and thank you

WoW! Earlier you were thanking everyone for all the support you've recieved here and now this statement. Oxygen is one of the major abortives that works so well for so many if it is delivered properly that you won't find many folks here who WON'T try to promote it's use. We do that as part of our support for one another in an effort to ease unnecessary pain.

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Hurt people.....hurt people. Think about it.

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flipperlips CH.com Alumnus Offline Live, Laugh, Love Posts: 935 Mcallen, TX Gender:	Re: Cluster Headache Videos of me on youtube Reply #20 - Apr 13^th, 2011 at 12:51pm CHS O2 didn't work for my husband at first either, but we found out with the help of the people here that he wasn't using it properly. He wasn't using the right mask, LPM or hyperventilating. That's why everyone is asking how you were using it...they're just trying to help.
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Re: Cluster Headache Videos of me on youtube
Reply #21 - Apr 13^th, 2011 at 12:51pm

Hi CHS,

I've been a sufferer for 30 years. I had my first CH when I was ten and was misdiagnosed till I was 28.

I found this place three years ago. I have learned more in those three years here than in all the years before, combined. I'm still asking questions and learning. I'm suffering a lot less because of it. It took me a while to listen; I was sure that what worked for them wouldn't work for me. Boy, am I glad I wised up and tried some of the suggestions I got. I hope you do too.

PF wishes,

Jeannie

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ClusterHeadacheSurvivor

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Re: Cluster Headache Videos of me on youtube
Reply #22 - Apr 13^th, 2011 at 6:35pm

yes I thank you for your support and ultimately its my decision to try or not to try. I came back here to share and talk. To each their own! Whatever works for you and helps you great, I take eveyones comments with a grain of salt. I hae thick skin, I am the least bit offended nor did I mean to offend anyone either. Right now I just choose not to try anymore.I am content where I am at, thanks

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E-Double CH.com Alumnus Offline Are we ourselves? Posts: 6948 Commack,New_York Gender:	Re: Cluster Headache Videos of me on youtube Reply #23 - Apr 13^th, 2011 at 6:58pm As long as you are at peace my brother! That's the bottom line. I don't care what you or anyone does as long as you don't suffer needlessly. That's it my friend. Pain free peaceful times to you Eric
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Cluster Headache Videos of me on youtube Reply #24 - Apr 13^th, 2011 at 7:39pm For whatever reason, it seems important to you that you not share the details of your trials with O2. I can live with that. I wish you peace and pain-free times.
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