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Hey Moxie! The 'cure' has been often stated as 'aging out' of CH. Guess I will see how big a lie that is when I hit 80! :D

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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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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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So does one need a duck to suck the parasite slug out of there nose? Or can I substitute a guinea fowl? Do I need to wait 5 days in between? So many questions. I hope this cure works.

 

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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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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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Lmao!  I caught that as well @Brain on fire......let's see now....I learned about welding oxygen from Marc from down in Bastrop Texas in 2007 on DJ's site.....this site went live in Oct of 2009.....this guy came along in his previous incarnation in 2015.....AND I can assure you we was spreading the message far and wide and loud and proud when he got here so I'm really not sure what he thinks he's taking credit for.......BUT THAT AIN'T IT.....and in the eternal words of Potter,  I call BULLSHIT!!!

DD

 

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To BOF – and everybody else,
I want to let you all know that when I made that post as GoggleEye regarding oxygen in Nov. 2018, I had only been in remission since March 23 of that year, and I made that post with the attitude that I WAS only in remission.  At that time I didn't even consider that I might never need the oxygen again, and I wrote that post with exactly that attitude.  However, I have not used oxygen for anything except Oxy-Acetylene welding since 3/23/18, because I have not needed to.  Since I had not saved the "object" that came out of my nostril, and therefor could not verify what it was, I was considering it to be just a remission at that time,  I did not make any post regarding my experience with Doxycycline and parasites, or suggesting that I was free of CH because at that time I did consider it to just be a temporary remission, and I always had my oxygen bottle hooked up and ready to go on a moments notice.  I also still carried my ¼ tablets of Rizatriptan everywhere I went.  It wasn't until my remission had gone twice as long as my  longest prior remission in all of my 16 years of CH  (9 months, with Verapamil) that I began to consider it to be more than a remission.   My last bottle of Verapamil was filled on 2/27/18 and I had not taken any Verapamil for over 6 months prior to that.  I still have the bottle and it still has 234 out of 270 tablets.  At 3 per day that is 12 days worth gone.  My Doxycyline prescription was filled on 3/16/18.  It was a 10 day (20 tablet) prescription.  On my 5th day of that bottle I had my last CH.  On the 7th day, at about 2 or 3 am I blew a black object out of my left nostril.  That was the very early morning of March 23. That is the day that I count from as the beginning of my current "remission".  Not having explained that, I can understand your doubting my story.  I apologize  to the less than a dozen people who have viewed and commented on my post claiming a possible "cure".  But is there anybody here who wouldn't be really happy with a 21 month "remission" (and still going) after having chronic CH for more than a decade?  I know my story was not well received here.  I guess I went about it all wrong for people who are convinced there is no known cause and therefor there can be no "cure".  At this point I don't care any more what anybody here thinks, except maybe 81007.   But I guess that if even one person who has seen my posts tries the Doxycline, and their CH stops abruptly and completely, then it was worth it.

I hope that all of you who have viewed and commented on this thread may some day be free of the “Beast”.  But unless people at least TRY anything that comes along that seems to have ANY possibility of working, that will never happen.   Au revoir for now.

 

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to Dallass Denny,   LMAO - IF,  as you said "we was spreading the message far and wide and loud and proud when he got here...", then why were people still posting on that thread that they needed help with getting oxygen, and nobody ELSE had posted any offer of help or info there "when I got here" and posted about welding oxygen?  And no Denny, I am not taking credit for anything, except putting up with YOUR B...S...., with "and in the eternal words of Potter,  I call BULLSHIT!!!"  Grow up Denny!

You are the one taking credit for EVERYTHING by screaming "loud and proud" about how great you are, not me.  I never posted again after that until now, and the only reason I brought up my post on oxygen her was because a bunch of "people" here were saying stuff like "what the hell could a "newbe" possibly have to offer to all of us "experts?"

So go ahead and ban me for copying the BS quote right out of your message text.   Au revoir.

 

 

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On 12/8/2019 at 7:55 AM, DragonKiller said:

OK John019.  I guess I will just shut up.  I have absolutely NOTHING to gain here, but I am putting myself at risk even suggesting that there could be a cure.  I guess that you few people here who have seen this thread are probably the only ones who will ever see it.  Apparently none of you currently on this thread are willing to believe anything that you don't have to pay for or that you can't personally gain from.  So I guess I will go ahead and try to find a doctor or clinic that is willing to do a "clinical trial" with what I can provide to them.  The other possibility is I may write a short book and put it on Amazon for $5 or so and then watch Amazon "pull it out of circulation" when they realize what it is.   

Thanks for all the help and encouragement you have all shown me (not).  I will be gone for now but will watch what happens for a while.  

Hello, you've either never had CH or are not being honest. It's impossible that you have a cure and would not help others who are suffering this miserable condition. 

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