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A quick search here shows welding oxygen appeared in the existing forum 8 years prior to @DragonKiller's post under the previous user name in the post referenced with then user name @GoggleEye which @DragonKiller shared. Note in that post (November 2018) was using oxygen. Contrary to being pain free for over a year as stated in the 1st post of this thread.

Could not blow the parasite out. Blew the parasite out (see status update for reference).

Imaging would have indeed shown a foreign body whether it was located in the nostril, brain, liver or lungs (also in the status update).

 

Edited by Brain on fire
research brain

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Personally I never want to discourage the free exchange of information and ideas because you never know when the next "Flash moment" will appear.  We are all aware that when folks get desperate they are vulnerable to any idea or snake oil salesperson.  Evidence of this includes offering unsubstantiated surgical procedures at great cost and risk which people consider and actually agree to.  In this particular situation I suspicion there may be a mental health issue in play.  Whether the initial poster is attention seeking, manipulative or well intentioned their verbose   nonsensical communication style speaks to a lost soul.  Now that the story is out each person can judge it for themselves, take pity and move on.

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DK,

I've been keeping up with the thread, wondering if it was going anywhere.  As others have pointed out.  Someone comes to the board every few weeks announcing a cure.  There is no cure.  Only remission.  I myself have gone 2 years without an attack, then back to episodic then to chronic.  Others 10 years or more and it comes back.  I manage my beast with the natural medicines primarily discussed on this board. 

That said.  I like to follow Bob's lead and let people speak freely without fear of repercussions.  MM was once thought of as being a quack management technique.  It is now, thanks to Bob and others like him, in my opinion one of the best treatments out there along with Oxygen.  

If you feel cured, then I'm happy for you.  I'd recommend not claiming a cure though.  Those of us that have been around are sorta tired of people claiming a cure, yet they're clearly simply in remission.  I thought verapamil was a cure many years ago.  The first time my doctor prescribed it for me, my CH disappeared a few weeks later.  I was over the top happy that I finally found something that worked.  The next year my CH came back and I went to the doc for another script of verapamil.  It didn't do anything.  Absolutely nothing accept give me tachycardia.  (A dangerously slow heart beat).  I realized thinking back.  The first year was about 2 months into my cycle.  At the time my cycles ran 2 to 3 months.  I realized then, that my cycle had simply stopped on it's on, and had absolutely nothing to do with the verapamil other than coincidence.  I've read about others having similar experiences with Kudsu, chriopractic care, hot baths, hotsauce up the nose, having the facial nerves cut, Adkins diet, vegetarian diet, etc etc. and the list goes on.  They were not cures, just chance coincidence, or at best something that provided a small bit of help (which we all need at one point or another).  What works for one person, may or may not provide help for another.  

It's great you're in remission, but people will not take you seriously by claiming a cure.  You're in remission, that's great and happy for you.

Cheers,

J

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I tend to think there is a cure. It's not going to be discovered soon, or easily. But one day someone will figure it out. Just not some random dude who blew his nose though.

The fact that finding something in his nose cured him (assuming he is cured) makes me suspect he didn't have clusters to begin with, because I'm pretty sure there isn't a parasite in my nose.

What frustrated me about this post, and the others claiming cures, is the bating and dancing around the subject. Either it works, or it doesn't. And if it does, just say and let people try it. 

Mox

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.....dunno if I'd call it a "lie" spiny...suspect it's more "anecdotal" from the medical profession who think they've noticed fewer 'old" clusterheads (or indeed WERE lying to us to shut us up cuz they couldn't help!). ...

....just theorizing, IF true, it could be for a number of reasons.....it has always been a fervent hope of mine...kinda a "bonus" of aging to look forward to...and I've wondered if it would be related to "hardening of the arteries" or other infirmities/changes of aging that alter the hypothalamus ....and/or the ways our bodies react  to potentiators....

....only a study that no one is going to do (batch's survey may be the closest, but I've never seen him discuss age distribution results) would answer this...in my case, went from crushing episodic for decades to chronic that was much lesser in intensity and easier to manage that was possibly due to aging or, my opinion, verapamil related (another anecdotal based thot ( episodic>chronic) that we've discussed frequently on another forum)....to an even lesser chronic that I attribute to chemo (or, again, maybe aging)....

..I do agree with Moxie...and I think it will be related to D3 and busting in some way(s)......

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Oh, I get that Jon. I just find it funny/annoying that that is the answer I get. Of course, being female, I can't even have 'CH' according to some Neuros. 

Slowly we are dragging them into the 21st century and eyes are opening. It is all good. 

I went from an easy Chronic to a hard Episodic! Yes, there is a reason, yes there is a cause, yes there is an answer. I just wonder who long it will take for the doctors to get the 'new' news. They seem to lag pretty far behind for the most part. 

New Neural Pathways are our biggest help currently in my opinion. Mind you, my opinion. And most are thankful for those new connections as they age! We need them! :D 

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I’ve had two CT scans in my life due to my clusters and a bunch of X-rays because of dental work and no one has told me that there is a parasite up my nose. I’m not saying OP didn’t have a parasite but maybe that parasite could give him headaches and other symptoms. And from what I’ve read EVERYWHERE they never mentioned a parasite could be the cause. Maybe time proves him right maybe not.
 

I would like to believe that there is a parasite in my nose and taking it out will be the cure for this monster that has put me through so much pain since I was a kid, but the chances of everybody here having parasites in their nose are, well, non-existent. 

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Every time I read the word 'parasite' in this thread, I think of the 1994 film The Puppet Masters. Awesome film, well worth the watch if you can find it. Here's the tag line from IMDB:

The Earth is invaded by stingray-shaped alien "slugs" that ride on people's backs and control their minds.

Ok, the parasites were larger and attached themselves to people's backs with a probe that stuck into their neck, so not quite the same. ;)

Mox

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Ooo I can't recall the title but there was an awesome B-movie (hilarious) where alien slugs controlled peoples minds through their noses! I had a slug invasion here (eeeww). Even during the hottest, dryest part of the year as soon as the Sun stopped hitting the back of the house, they'd be all over the windows, siding, storm door & patio. I tracked in a live one once, it died a horrible salty death. Someone suggested beer in a pan to save my plants. I tried it and ended up with a tangled wad of 1,000's of LIVE slugs. Epsom salt, horse hair (mane & tail) around the plants, coffee grounds (neuro toxin for slugs), crushed glass, crushed stone, crushed pottery, borax, didn't put a dent in the slug population. I don't give up easily, but after 2 years I sealed around my window screens, never went barefoot while they were active, kept a salt shaker by the back door, checked before tracking any in & let them have my plants.

Edited by Brain on fire

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DUCKS!  BoF...best/funnest pets I ever had...they'd follow me around and I'd point out slugs (like they really needed the help...not!)...line 'em up with their beaks and slurp 'em down like spaghetti.... after a while I'd have to bring water to wash off the slime so they could open their mouths...the whole enterprise was hilarious....

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@jon019  most of my life was on a farm. Ducks are funny, their eggs are yummy & (we only ate wild ones) ducks are delicious. I'd secretly pick a basket of grapes just for the ducks. I spent some hilarious time tossing & rolling grapes for my duck pals (RIP Melvin Duck).

Edited by Brain on fire

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I think dragon is right about a parasitical cause. I will post the results when the lab tests come back. I just pray that is not an unknown virus.

Just remember the first airplane flew in 1903. Penicillin did not come about until 1929.

Disclaimer: I maybe wrong about the hypothetical causative agent. I am not a doctor of medicine.

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Perhaps GoggleEye forgot the info so nicely handed to us re identity with the newer username/account Dragonkiller for this thread. The only other post by GoggleEye was the oxygen brought right to our attention in this thread.

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to BOF -

no, I didn't forget that I gave you my original ID.  I just terminated the DK account temporarily and had not re-activated it when I came on as "GE" to see if anything realistic had been posted. I didn't want to get any more notifications of posts to my original post, and I didn't want to be tempted to come back here and post again, because it seemed that all I got was negative replies and insults so I gave up on this board. I have been busy doing further research, and actually helping people who have posted about their CH on many other sites and you tube channels where people are begging for help, instead of wasting my time here.  But please note that the first thing I do when people respond to my posts on you tube channels is to direct them here to “clusterbusters.com”.  Do you actually believe I am mentally disturbed, or trying to scam anybody?  I spend at least 4 to 6 hours a day looking for people who need help, and trying to help them.  By the way, I have actually found 2 other people who had their CH diagnosed as "parasites, and who were treated for same and who were apparently cured.  Oh, sorry,  not "cured", they just went into temporary remission as you would say .

 

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To 81007

Thank you so much for your post. You are apparently the only person here to believe what I posted, and you are almost the only responding post that did not intentionally insult or belittle me. Your post indicates that you may have tried it, and you mentioned lab tests. Doxycycline will not kill viruses – only bacterial infections and SOME parasites. Would you please let me know whether you have actually tried it, and what kind of lab tests results you are waiting for? And about your “Disclaimer”, I never meant to infer in my post that what “has put me in remission for almost 2 years” was a “cure”for all CH. I realize from all my research over the years that there are at least several possible “causitive agents”, and that there are people out there who THINK they have CH, when they don't. They may have one of the 2 or 3 “similar types” of headaches, which all have different symptoms and usually respond to treatments that CH doesn't. But if just 1 in 50 people who were to try what helped me were to have the same results, then it would be worth every hour that I have put into this effort. As I tried to explain in my first post, the problem is that to get that result would require that 50 people would have to try it and then report their results back to some central point, as in a clinical triat, but there are far too many scoffers out there to ever get a clinical trial done on this, or any other treatment that someone may have posted here on this site as “having cured them of CH”. As soon as you use the word “cure” here, you get ridiculed and insulted, and you either give up or get “banned”.

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To THMH   (ADMINISTRATOR)

Thank you for your reply.  You are one of the few people here that did not insult me or belittle me over my posts.  You were very kind and helpful.  I have gone to your site here, if that's what you call it when I click on your ID.  You are one of the few really "wise ones" here.  I get your message about the use of the word "cure" here, as you can see from my other posts today.  But I personally will never blow off anybody who suggests ANYTHING here that helped them.  I have been accessing this board since way before I created the GoggleEye login.  I just never "joined" until I saw something that I just had to respond to, regarding questions that were posted about being unable to get oxygen.  I first found out about oxygen here, but I had to figure out how to use it effectively on my own.  When I first got it from a doctor prescription, it was useless with the regulator and the size of the tank.  I realized I had lots of oxygen here, and a good regulator, because I do some welding.  So I asked a guy at the place where I got my oxygen if they also supply it to hospitals and he said yes.  I then replied that I don't see any of "medical" type tanks with the white top on the lot out there.  He said, "oh no, those are mostly only used for the small tanks that require a doctors prescription. For hospitals we often use the same tanks that are used for any other industrial" purpose, just like the ones you get".  I then went and hooked up an "air compressor" blow gun to my welding tank with a food grade plastic hose and set the welding regulator to supply as much O2 as I could take in with a normal breath, and soon realized what I had not seen here, which is that you have to take in just 100% pure oxygen and only oxygen for it to be effective.  So I had to open an account and reply to the people who were posting that they couldn't get oxygen or that it wasn't working for them.  I never had a reason to post again until I "accidentally" went into "remission" almost instantaneously, and then realized just what had happened that night.  But I realized that I could not post my story until my period of "remission" went at least twice as long as any previous remission I had experienced.  By that time, I felt that it would be almost criminal NOT to post it here.  But I didn't realize that the word "cure" was just not accepted on this site, and that using it would get me belittled and insulted to the point of just giving up and going elsewhere to try to help people who  really WANT help, and who have FAITH, and actually believe that their CH could possibly "turned off".  OK, my CH may come back some day, but I personally doubt it, because of the physical change I felt in my left nostril after I blew that “thing” out of it. Since that night I have never had a “shadow” headache, as I did have in my other “remissions”, and my nostril has never again gotten that “stuffed up and completely closed off” condition that always accompanied the headaches, and that also caused the “shadows” that I did experience in my other periods of remission.  Also, since temporarily terminating the DK login, I have actually found 2 other people, on you tube channels who had their CH diagnosed as "parasites, and who were treated for same and who were apparently “cured”, and had not come back. So much for saying that ANYTHING is possible, if only you believe, and give it a try.

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5 hours ago, DragonKiller said:

So I had to open an account and reply to the people who were posting that they couldn't get oxygen or that it wasn't working for them.

 

On 12/12/2019 at 5:03 AM, Brain on fire said:

A quick search here shows welding oxygen appeared in the existing forum 8 years prior to @DragonKiller's post under the previous user name in the post referenced with then user name @GoggleEye which @DragonKiller shared

 

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