Hello,
I wanted to share a way to deal with clusters that is rather new.  My man had the clusters almost every night for 4 years. As you already know, nothing really helps(he wouldn't try oxygen)
I am a Chiropractor, I dragged him around to all kinds of body workers, nothing nothing.
Last resort (which should have been first but the place wasn't built yet)
Carrick Brain Institute. A Chiropractic Functional Neurology Center. There is one here in Marietta, GA, and one in Dallas, TX.
The docs tested his brain function with balance tests, and all sorts of eye tracking tests. They showed us a graph of the results, how the two sides of his brain were not even integrated in function together. Because the wiring is off, the headaches were actually the brain interpreting normal signals incorrectly as pain. I know that sounds odd....
Treatment was 4x/day for a week with reexams every other day.
Eye movement exercises....accommodation, looking at dots while walking back and forth, spinning him to the left in a 360 motion machine, and giving light shocks to the Trigeminal nerve to "remind the brain what pain signals should be"
I videotaped him during the week when he had a headache, videotaped him doing the eye movements during the headache.
Doc's watched his eyes in the video and changed their treatment slightly.
First reexam the graph showed the brain was starting to work together! Even better on the last exam.
That day, he had Three clusters.
Nevertheless he went home with his beads on a string and a paper with dots to continue his home eye exercises. I wasn't allowed to adjust him or massage him awhile so as not to disturb the brain rewiring.
About 5 weeks went by with no headache, only some almost ones. Then he got sick... I adjusted him cause I thought it had been a long enough time. Headaches came back hard!!!
But..... He also had not been doing his eye exercises enough since the headaches were gone.
Back to the eye exercises! 3x a day.
Headaches reduced to once a week or so greatly diminished in intensity, especially when he did his exercises enough.
I then learned about the Anti Inflammatory Protocol on this site from one of my patients.
It's been another 5 weeks without a real headache, just taking the vitamin D along with eye exercises!
I can adjust and massge him with no headache happening after.
We did the Functional Neurology in January, it didn't show miracles immediately, but worked without drugs.
The eyes can rehab the brain because they are brain tissue. I encourage anyone who suffers frrom these headaches to find a Chiropractic Neurologist, Functional Neurologist, or even a good Vision Therapist will be able to test eye movement and tracking abnormalities.  Not everyone has the same kind of tracking problems, so it's important to get checked by a pro for your personal homework.
I wanted to share this in hopes that it may help.

Hi Laureyln. Welcome to the board. Thank you for the information.
You say nothing really helps. Can you tell us what he has tried? And you say he won't try oxygen...Why not? Oxygen is a very popular treatment to abort a cluster headache attack. It's cheap, easy to use, safe and can kill an attack quickly.

Laurelyn DC wrote on Jun 6^th, 2015 at 11:43am:

Hello, I wanted to share a way to deal with clusters that is rather new.  My man had the clusters almost every night for 4 years. As you already know, nothing really helps(he wouldn't try oxygen) I am a Chiropractor, I dragged him around to all kinds of body workers, nothing nothing. Last resort (which should have been first but the place wasn't built yet) Carrick Brain Institute. A Chiropractic Functional Neurology Center. There is one here in Marietta, GA, and one in Dallas, TX. The docs tested his brain function with balance tests, and all sorts of eye tracking tests. They showed us a graph of the results, how the two sides of his brain were not even integrated in function together. Because the wiring is off, the headaches were actually the brain interpreting normal signals incorrectly as pain. I know that sounds odd.... Treatment was 4x/day for a week with reexams every other day. Eye movement exercises....accommodation, looking at dots while walking back and forth, spinning him to the left in a 360 motion machine, and giving light shocks to the Trigeminal nerve to "remind the brain what pain signals should be" I videotaped him during the week when he had a headache, videotaped him doing the eye movements during the headache. Doc's watched his eyes in the video and changed their treatment slightly. First reexam the graph showed the brain was starting to work together! Even better on the last exam. That day, he had Three clusters. Nevertheless he went home with his beads on a string and a paper with dots to continue his home eye exercises. I wasn't allowed to adjust him or massage him awhile so as not to disturb the brain rewiring. About 5 weeks went by with no headache, only some almost ones. Then he got sick... I adjusted him cause I thought it had been a long enough time. Headaches came back hard!!! But..... He also had not been doing his eye exercises enough since the headaches were gone. Back to the eye exercises! 3x a day. Headaches reduced to once a week or so greatly diminished in intensity, especially when he did his exercises enough. I then learned about the Anti Inflammatory Protocol on this site from one of my patients. It's been another 5 weeks without a real headache, just taking the vitamin D along with eye exercises! I can adjust and massge him with no headache happening after. We did the Functional Neurology in January, it didn't show miracles immediately, but worked without drugs. The eyes can rehab the brain because they are brain tissue. I encourage anyone who suffers frrom these headaches to find a Chiropractic Neurologist, Functional Neurologist, or even a good Vision Therapist will be able to test eye movement and tracking abnormalities.  Not everyone has the same kind of tracking problems, so it's important to get checked by a pro for your personal homework. I wanted to share this in hopes that it may help.

Bullshit.

      Potter

G'day Laurelyn, welcome, and we always reckon it's beaut when someone is ready to support one of our fellow headache-sufferers.

Importantly, has your mate been genuinely diagnosed as suffering cluster headaches? If so, we can offer heaps in the way of advice and suggestions.

If not we truly recommend he see a headache specialist to ensure it's really clusters and not something else which might be serious and is going untreated. As a chiropractor yourself, a health professional, you surely understand the need for a proper diagnosis from the start.

We'll help you every inch of the way because we care,

Brian down under.

Quote:

Bullshit.

Geez, I love this guy!

i have one eye and cluster headaches

how will the doctors study my eye exercises and adjust them.

Bob P wrote on Jun 7^th, 2015 at 7:34am:

Quote: Bullshit. Geez, I love this guy!

LOL   ;D

wrote on Jun 10^th, 2015 at 4:28am:

Bob P wrote on Jun 7th, 2015 at 7:34am: Quote: Bullshit. Geez, I love this guy! LOL   ;D

That was her first post. A supporter in obvious need of advice and knowledge to properly help a fellow ClusterHead.

It was her only post.

Well said Brian.

Not what this site is about at all.

Peter.

You say nothing helps and he won't try oxygen. If it is CH and not one of it's mimics then there is plenty that will help and oxygen is one of the best abortives there is. It is also the absolute safest. Why won't he try it?

So he finds it preferable to suffer CH every night for 4 years rather than try the purest form of the air we breathe. He really doesn't need all the tests and stuff you've been doing - just breathe.

I'm glad what you are doing seems to be helping but it seems like an awful lot of fuss, and time consuming. While all these tests and therapy and exercises are taking place he continues to suffer when he need not.

I know personally that in the throes of a really bad CH most of us would try anything. I'm not suggesting that he is not in pain, but I do wonder if it really is CH because I don't imagine any CHer refusing oxygen. Have you had a proper diagnosis from a neurologist/headache specialist.

Whatever the diagnosis, treatment etc, your support in any form is important to him, so keep it up. He needs to know he's not alone.

AussieBrian wrote on Jun 10^th, 2015 at 5:04am:

wrote on Jun 10th, 2015 at 4:28am: Bob P wrote on Jun 7th, 2015 at 7:34am: Quote: Bullshit. Geez, I love this guy! LOL   ;D That was her first post. A supporter in obvious need of advice and knowledge to properly help a fellow ClusterHead. It was her only post.

  First and only post and never came back.  It's a spammy ad for chiropractics for crissakes.  You keep on huggin em Brian.

           Potter

Chiropractors! Cost me an arm and a leg, doesn't work
when it comes to treating CH's.

Hoppy

wrote on Jun 10^th, 2015 at 3:22pm:

You keep on huggin em Brian.            Potter

Certainly I'll keep on huggin em, Potter, because when I get it wrong no-one gets hurt.

But when you get it wrong a ClusterHead and first-time poster is abused, accused and sent away without the knowledge and support that ch.com is here to provide.

     Can I play the devils advocate here? On the assumption she was only being honest? Once upon a  time I thought I ended an episode by taking feverfew and had I spouted the miraculous healing powers of the stuff I would have been wrong..... but honest, for I truly believed in it at the time.

                    Sean

AussieBrian wrote on Jun 10^th, 2015 at 11:55pm:

wrote on Jun 10th, 2015 at 3:22pm:   You keep on huggin em Brian.            Potter Certainly I'll keep on huggin em, Potter, because when I get it wrong no-one gets hurt. But when you get it wrong a ClusterHead and first-time poster is abused, accused and sent away without the knowledge and support that ch.com is here to provide.

I totally agree with you Brian.

I saw someone post about what they believe is working for their partner and trying to help others. I saw not advert, no website links to adverts or anything similar.

We all know what the impact of headache pain can be and how vital support and a welcome are.

I hope the person who posted is still reading the site and getting useful information.

AussieBrian wrote on Jun 10^th, 2015 at 11:55pm:

wrote on Jun 10th, 2015 at 3:22pm:   You keep on huggin em Brian.            Potter Certainly I'll keep on huggin em, Potter, because when I get it wrong no-one gets hurt. But when you get it wrong a ClusterHead and first-time poster is abused, accused and sent away without the knowledge and support that ch.com is here to provide.

Brian did you even read the Advertisement or do you just have a pat answer for all of the spammers sellin quack cures?

                Potter

                    Potter

wrote on Jun 10^th, 2015 at 4:28am:

Bob P wrote on Jun 7th, 2015 at 7:34am: Quote: Bullshit. Geez, I love this guy! LOL   ;D

I actually hope the first time poster comes back and posts some more info, I shouldn't have put the smiley post up, it was in response to what was said, not on the content of laureyln's post.
my apologies for doing so if it in anyway stopped someone from repeat posting !
I shall be more care full in future.

Most of my friends are straight shooters.  That's why I luv Potter!

Bob P wrote on Jun 15^th, 2015 at 8:40am:

Most of my friends are straight shooters.  That's why I luv Potter!

yep, I probably shoot from the hip too Bob,
maybe sometimes a bit to much  LOL
It was your comment that cracked me up !!

But I do see Brian's and others point. It could very well have been an add as potter said, but then again, it could have been someone relaying an experience and being perfectly honest in their post about hubbies experience.
I have an opinion on it
but, Brian is right, in never wanting to dismiss a potential honest first time poster......
Hey, I recon after 3 or 4 posts, it would be pretty obvious of any posters intensions, whether legitimate or touting for business, then I guess, a bit of  " potter" would be suitably appropriate  LOL
I guess its just a case of being 100% in case we do turn someone with honest intent away.......... just saying

cheers
colin

Bob P wrote on Jun 15^th, 2015 at 8:40am:

Most of my friends are straight shooters.  That's why I luv Potter!

HI Bob...hope you dont mind me saying so...i WUV him too and perhaps a bit more than you  ;D ;D :D :D :o :o

Hi Lenny.  Long time.  Hope you're doing OK.

wrote on Jun 6^th, 2015 at 11:07pm:

Bullshit.       Potter

That would be a great example of just how bad we can all get.  Potter does no one any favors by acting arrogant enough to think that someone else might have new information that could help.  All too often he seems determined to convince everyone that he knows the situation and other people don't, but I can tell you for sure it does Clusterheadaches.com no good at all.  He attempted to chase me off the site at one point too, trying to tell me that the ideas I was throwing out there were bullshit and convinced other people to attack me as well.  Then he sent me a message with a flashing graphic that said "your post was so stupid you deserve a seizure" because I had mentioned that I was suffering from grand mal seizures.  Anyone that jumps on his band wagon of stupidity, ignorance and egotistical arrogance is, in my opinion helping our cause in no way at all.

Potter can keep acting like he knows all the answers and chasing any new ideas away, meanwhile the rest of us will figure out the intricacies of what is going on with cluster headache.

-Ricardo

Ricardo wrote on Jun 22^nd, 2015 at 11:16am:

wrote on Jun 6th, 2015 at 11:07pm: Bullshit.       Potter That would be a great example of just how bad we can all get.  Potter does no one any favors by acting arrogant enough to think that someone else might have new information that could help.  All too often he seems determined to convince everyone that he knows the situation and other people don't, but I can tell you for sure it does Clusterheadaches.com no good at all.  He attempted to chase me off the site at one point too, trying to tell me that the ideas I was throwing out there were bullshit and convinced other people to attack me as well.  Then he sent me a message with a flashing graphic that said "your post was so stupid you deserve a seizure" because I had mentioned that I was suffering from grand mal seizures.  Anyone that jumps on his band wagon of stupidity, ignorance and egotistical arrogance is, in my opinion helping our cause in no way at all. Potter can keep acting like he knows all the answers and chasing any new ideas away, meanwhile the rest of us will figure out the intricacies of what is going on with cluster headache. -Ricardo

And she never came back.

       Potter

Potter,

" and she never came back"........Does that mean you were right, or wrong?

Peter.

Peter510 wrote on Jun 23^rd, 2015 at 3:06pm:

Potter, " and she never came back"........Does that mean you were right, or wrong? Peter.

Neither just an observation on the OP.  She made blatant bullshit claims about chiropractics that were nothing more than an advertisement for her own practice.

         Potter

Actually, the definition for "blatantly" would be "done openly and unashamedly."  If she said "this is my business" than it would be blatantly.  What she said was that she was a chiropractor and then went on to say she went to a certain place. 
She also said
Laurelyn DC wrote on Jun 6^th, 2015 at 11:43am:

I encourage anyone who suffers frrom these headaches to find a Chiropractic Neurologist, Functional Neurologist, or even a good Vision Therapist

is she all of these things too?  She's got 3 jobs and needs customers so bad she is putting up slick "fooled you" ads on a cluster headache site?  How likely does that really seem? Or was that just a curve ball because she knows we must already be on to her?   

No one should be surprised that she did not come back.  If you come on to a board thinking you can help people, attempt to help people and are just met with suspicion, rude responses and attempts to discredit you based on someone's paranoid conspiracy theories that are not based on 1 fact whatsoever, you leave. I would too.  In fact, I did leave for a couple years after Potter said pretty much the same thing when I recommended that peppermint essential oil can be helpful for some of the lighter clusters you get.  I was not selling anything but damn was he convinced that he knew the story and that I needed to be chased off the board.  Almost 10 years later and I really couldn't tell you how many people have thanked me for the peppermint trick.  I still use it because it works quite effectively.  The people that found it helpful did have to wait 3 or 4 years before I would come back on the board though because I really didn't feel like dealing with people like Potter.  I can only guess as to the number of well meaning people out there that have been chased off the board by him.

That's the gist of it.  You get a post like this and you can attack the person and their ideas until they go away and you will never really know if their idea held any water.  If you entertain the idea that MAYBE you are not an all knowing being that knows the reasons behind the things people post and know everyone's hidden agenda, and have a tiny bit of patience to ask some questions before tearing someone apart, we might get more answers. 

Worst thing that happens if the person has some sort of nefarious agenda and you ask questions instead of jumping the gun is that you waste a little time before you call them out.

Worst thing that happens if you immediately call somebody out that was just trying to help--you miss out on potential helpful remedies for cluster headache.

No one anywhere has the ability to accurately determine peoples motives based on one post like this.  To say otherwise is extreme arrogance and does not help us get to the truths that we so desperately need.

-Ricardo

Ricardo wrote on Jun 29^th, 2015 at 11:17am:

Actually, the definition for "blatantly" would be "done openly and unashamedly."  If she said "this is my business" than it would be blatantly.  What she said was that she was a chiropractor and then went on to say she went to a certain place.  She also said Laurelyn DC wrote on Jun 6th, 2015 at 11:43am: I encourage anyone who suffers frrom these headaches to find a Chiropractic Neurologist, Functional Neurologist, or even a good Vision Therapist is she all of these things too?  She's got 3 jobs and needs customers so bad she is putting up slick "fooled you" ads on a cluster headache site?  How likely does that really seem? Or was that just a curve ball because she knows we must already be on to her?    No one should be surprised that she did not come back.  If you come on to a board thinking you can help people, attempt to help people and are just met with suspicion, rude responses and attempts to discredit you based on someone's paranoid conspiracy theories that are not based on 1 fact whatsoever, you leave. I would too.  In fact, I did leave for a couple years after Potter said pretty much the same thing when I recommended that peppermint essential oil can be helpful for some of the lighter clusters you get.  I was not selling anything but damn was he convinced that he knew the story and that I needed to be chased off the board.  Almost 10 years later and I really couldn't tell you how many people have thanked me for the peppermint trick.  I still use it because it works quite effectively.  The people that found it helpful did have to wait 3 or 4 years before I would come back on the board though because I really didn't feel like dealing with people like Potter.  I can only guess as to the number of well meaning people out there that have been chased off the board by him. That's the gist of it.  You get a post like this and you can attack the person and their ideas until they go away and you will never really know if their idea held any water.  If you entertain the idea that MAYBE you are not an all knowing being that knows the reasons behind the things people post and know everyone's hidden agenda, and have a tiny bit of patience to ask some questions before tearing someone apart, we might get more answers.  Worst thing that happens if the person has some sort of nefarious agenda and you ask questions instead of jumping the gun is that you waste a little time before you call them out. Worst thing that happens if you immediately call somebody out that was just trying to help--you miss out on potential helpful remedies for cluster headache. No one anywhere has the ability to accurately determine peoples motives based on one post like this.  To say otherwise is extreme arrogance and does not help us get to the truths that we so desperately need. -Ricardo

[smiley=applause.gif]

          Potter

Thanks for the applause Potter.  The person who sent me a PM  yesterday thanking me for the info on using peppermint oil (saying "I don't remember if I thanked you or not, but it works 60-70% of the time for me.") seems to agree. 

The real thing that seems to be apparent is that Potter has run out of things to say because there is no good excuse for running people off the board and harassing people because they came up with an idea that he couldn't come up with.  If Cluster Headache only responded to things that Potter agreed with, we'd be in serious trouble. 

-Ricardo

Ricardo wrote on Jun 30^th, 2015 at 8:50am:

Thanks for the applause Potter.  The person who sent me a PM  yesterday thanking me for the info on using peppermint oil (saying "I don't remember if I thanked you or not, but it works 60-70% of the time for me.") seems to agree.  The real thing that seems to be apparent is that Potter has run out of things to say because there is no good excuse for running people off the board and harassing people because they came up with an idea that he couldn't come up with.  If Cluster Headache only responded to things that Potter agreed with, we'd be in serious trouble.  -Ricardo

It's called succinctness.  I have better things to do than to troll yer posts like you do mine.

            Potter

wrote on Jun 30^th, 2015 at 9:28am:

Ricardo wrote on Jun 30th, 2015 at 8:50am: It's called succinctness.  I have better things to do than to troll yer posts like you do mine.             Potter

I seriously wish that were the case.  Unfortunately it seems like no one needs to troll your posts to find cases of you being unhelpful to our cause.  I doubt much of this conversation has helped anyone (unless it has given people a clue the next time Potter attacks them or their ideas that it really has nothing to do with them or their ideas at all...)  so I will leave the rest of the commenting up to Potter. 

-Ricardo

I just push Oxygen and Hallucinogens, not some sketchy chiropractics nor mumbo jumbo. "Eye movement exercises....accommodation, looking at dots while walking back and forth, spinning him to the left in a 360 motion machine, and giving light shocks to the Trigeminal nerve to "remind the brain what pain signals should be" "Nevertheless he went home with his beads on a string and a paper with dots to continue his home eye exercises. I wasn't allowed to adjust him or massage him awhile so as not to disturb the brain rewiring."

          Potter



                  

Ho Hum.....   [smiley=deadhorse1.gif]

I must say, I was shocked when i saw potter's "bullshit" comment.
How could anyone talk to one of us -CH sufferer or sufferer's helper- in such a way.
That lady -Laurelyn- has been trying to help her man and like many of us, would try anything to achieve any kind of relief. Maybe after some time she would find that what she was doing for her man was not working but she was trying and she's got to be praised for that.
I, for one, would like to thank Laurelyn for trying to help her CH suffering man.
Lucky for some of us to have found a solution that works at keeping the beast at bay. Had she been given a chance she too might have found the D3 regimen and her man would then also find relief -I wish it to all and any CH sufferer-.

Potter, i will certainly not include you in my buddy list and, whatever you might reply to this post, I will not entertain you with a reply.

Ricardo, before i found this site, i was using peppermint oil, applied locally, and found that it sometimes helped relieving shadows that might otherwise have turned into full blown attacks.

I do wonder if a moderator on this site would not find potter's behaviour out of order and give him a warning or do whatever might be appropriate. Why would he have more of a right to be here than Laurelyn who is trying to help her man who is suffering from the beast we all know too well?!

Laurelyn, I do hope we'll see you around this neck of the woods again.

Thierry,
Well said. Nowhere in this thread has Potter's "suspicion" been substantiated, but he just doesn't seem to have the manners or maturity to let it go.
Pity, but that's just the way some people are.
Actually I cannot recall a single useful or positive post that he has ever made. I could be wrong, but I really don't care to read back through all his posts. Life is too short.

Peter.