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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Laurelyn and Potter Reply #25 - Jul 6^th, 2015 at 8:33pm Please don't tell my chiropractor that.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Laurelyn and Potter Reply #26 - Jul 6^th, 2015 at 9:21pm The only thing I got from seeing a chiropractor was a torn muscle in my shoulder, which needed physiotherapy. From a physiotherapist.
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AussieBrian

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Re: Laurelyn and Potter
Reply #27 - Jul 7^th, 2015 at 1:27am

I'm sorry your chiropractic experience wasn't a happy one, Hoppy, but that doesn't mean all chiropractors are bad and have no place within the CH community.

To be abused, accused and sworn at over a first post, but let's be honest.

This isn't just about Lauralyn.

This is about everyone's right to come here as a CHead, or a Supporter, and not be driven away because of a word or opinion that our old-timers say is forbidden.

Let's presume for a moment that Lauralyn's first post really is true, then the CHead she's supporting is in desperate need of serious help and that's the sort of help we are here to offer - if only to protect a fellow sufferer from 'cures' such as hers.

I'll keep hugging the newbies. The bad ones quickly show themselves up and are easily dealt with by Admin, but I believe everyone who comes here is either seeking help or needs it.

We have so much to offer. So many ways to help others who must endure this nightmare.

My name is Brian. I'm a ClusterHead. I'm here to help.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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Hoppy

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Re: Laurelyn and Potter
Reply #28 - Jul 7^th, 2015 at 2:30am

Brian, I fully understand where your coming from, and
agree totally, but I still feel it wasn't the case here.
"Seeking help for her partner", but more about advertising the business where according to her, "helped him find some
relief with his CH's".

Laurelyn wrote, 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.

Hoppy

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« Last Edit: Jul 7^th, 2015 at 6:49am by Hoppy »

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maz

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Re: Laurelyn and Potter
Reply #29 - Jul 7^th, 2015 at 5:10am

Chiropractics have their place. My husband sees a brilliant one who has kept him on his feet for years. However............

nothing really helps (he wouldn't try oxygen) That's the bit that gets me !! We all know there is plenty that helps and for most of us 02 is our number one "go to". If you are just plain unwilling to use the most tried and trusted methods of relief then the only answer is to carry on living with the pain - your choice.

I think that anyone who refuses to even try 02, doesn't have clusters at all. No one with a kip 10 would refuse ANYTHING. Especially something which has been proven by medical science,100% natural and recommended by so many others.

While I don't think it right that new posters (or any poster for that matter) should be sworn at and chased from the boards, I feel this couple were not trying very hard to find a solution. If the man prefers to be "dragged round" all over the place whilst in severe pain instead of breathing a few puffs of 02 then let him get on with it.

I think Potter was rude......but he has a valid point.

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lancashire Lad

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Re: Laurelyn and Potter
Reply #30 - Jul 7^th, 2015 at 5:40am

I am indebted to this forum and a couple of posters who helped me when I needed help most. Thank you.

I came here knowing nothing of my problem (multiple HA syndrome) and after much research now know a little. What I know compares as an ant hill to the mountain that I do not know and indeed no one will have the answers in my life time, the brain, cns and body mechanics, biology, chemistry and electronics and their interactions are far too complex for us earthlings to comprehend.

But I did learn a thing or two;

The neck is involved in every single CH attack there has ever been. Via the brain stem. The brain stem either in a primary role as pain processor or in a secondary role as processing loop filter is involved in all pain processing. If the brain stem in impacted in some way it can play up.

And there are the primary / secondary words that are so un-useful in CH understanding. Primary in this case means the experts don’t know what the cause is and secondary means they think they MIGHT know. The fact is the experts don't know.

That doesn't mean there isn't a cause or probably more correctly multiple causes, that is self evident but it also means that to say there isn't a cure is equally wrong. And before we get into semantics "no known cure" in this case, I take as meaning "no cure"

So when a CH head gets a high velocity manipulation from a chiro and never has a CH again, that's a cure.

Because there are so many CH pain relief techniques / therapies / medications that work for some people and not others I think it likely that the common result of a the experience of CH may not have common roots, that is to say CH most likely can be manifested by various and differing (in different people) factors, that is also to say there is no single or single set of contributors.

My last point may get me some boos but hey! CH can and does send you nuts. Sufferers get precious / protective over the very term, somehow resentful of "outsiders".

Its understandable. You find a mix of personalities in any work place, bar, club any social / formal gathering. Internet forums attract a more introspective type and introspective CHers are always going to be challenging.

If you can't say what's causing a problem you can't say what wont cure it.

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« Last Edit: Jul 7^th, 2015 at 6:03am by lancashire Lad »

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Bob P

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Re: Laurelyn and Potter
Reply #31 - Jul 7^th, 2015 at 7:27am

Quote:

The way to scientifically debunk fraudulent claims is by asking questions and posting info on the proof that these are fraudulent claims. NOT by talking trash to people with absolutely no proof or explanation of what you are talking about. This is how the scientific method works and simple minded people are hardly ever the people that go with that, quite the opposite

If you knew Ueli you'ld see the humor in this. I can't believe the old fart is still around! Hi Ueli.

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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron. "SHUT UP HUB!"

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Ricardo

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Re: Laurelyn and Potter
Reply #32 - Jul 7^th, 2015 at 7:36am

Hoppy wrote on Jul 6^th, 2015 at 6:50pm:

From what I've read over the years! The only headache
types that can be helped by a chiropractor are those caused by a neck problem, or a neck injury, I'm yet to read of one where it helped in CH's. It may help in some
of the headache types that mimic CH's. But, it will not, I
say again, will not fix a CH in a million years.

Until you show a study that has been done showing that chiropractic work does not do anything good for cluster, all you have is an opinion, not a fact. I am extremely doubtful that cluster is going to respond in a positive way to chiropractic care, but again--I am not arrogant enough to think that my OPINION is automatically correct. I have no idea why this idea is so hard for people to grasp. You can look up opinion and you can look up fact in a dictionary and see where what you are saying fits.

Quote:

Did "poo-pooing" on posts about using shrooms , 02 , and D3 run batch and pinksharkmark off of this forum? NO!

Yee friggin haw. We talked trash to people and at least 3 or 4 of them did not leave. How many did? We will never know. BECAUSE THEY ARE GONE.

-Ricardo

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Ricardo

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Re: Laurelyn and Potter
Reply #33 - Jul 7^th, 2015 at 8:28am

AussieBrian wrote on Jul 7^th, 2015 at 1:27am:

This isn't just about Lauralyn.

This is about everyone's right to come here as a CHead, or a Supporter, and not be driven away because of a word or opinion that our old-timers say is forbidden.

This is about as true as it gets. On our opening page it says

"Our site can be a tumultuous, fast-moving, contentious world at times, but first and foremost, it is the most caring, compassionate, supportive family of cluster headache sufferers (and their supporters) in the world."

Ask yourself--does the way Potter act around here fit into this? If someone can explain to me how telling someone after their first post that they are bullshit goes along with compassion or being supportive please do.

AussieBrian wrote on Jul 7^th, 2015 at 1:27am:

Let's presume for a moment that Lauralyn's first post really is true, then the CHead she's supporting is in desperate need of serious help and that's the sort of help we are here to offer - if only to protect a fellow sufferer from 'cures' such as hers.

Here's another scenario--what if she just doesn't know what the hell is going on. What if her husband has clusters and he went to a chiropractor. We have seen numerous times where someone says "holy crap my clusters got cure by this" and then they (and we) find out that, no they didn't. Clusters can come and go, and it can be tempting to say "this is why" but it can often be a coincindence. If this happens is it OK to tell them they are bullshit and act like an arrogant, dismisive jerk? I don't think so.

Bob P wrote on Jul 7^th, 2015 at 7:27am:

Quote:

If you knew Ueli you'ld see the humor in this.

I highly doubt it. He called a number of people on our forum simple minded because they don't want people to be jerks and actually want to give someone the benefit of the doubt before telling them they are bullshit. I don't care who you are, if you are going to behave like that I will not find your behavior humorous.

I've had chronic daily cluster headaches for close to 20 years now. I have no patience for people that are going to decide for the group that they have the answers and that it is completely ok to talk trash and chase people off the board because they know better than anyone else.

If the arrogant people claiming to know all this info started being a little nicer and stopped trying to save all us simple minded people , it sure would be appreciated.

-Ricardo

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blacklab

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Re: Laurelyn and Potter
Reply #34 - Jul 7^th, 2015 at 9:12am

Here's my play on all this
I keep hearing about how good a person so in so is and the good work so an so has done, or we don't understand So in So's humour !!
Well, Bollocks to that !
If Me as a member here for a couple of years doesn't know, then how in the Hell is a first time poster expected to know !! its that simple !
I pretty well agree with all of what Lancashire had to put forward, there is sometimes some preciousness about us sometimes, like any workplace.
Also, I firmly believe as he stated, that perhaps there are a multitude of triggers which set off a cluster attack, for some it may be as simple as alcohol, inflammation of the area seems to come hand in hand, so therefore some may indeed have a cluster attack from a neck complaint, Its not the cause, but maybe purely a trigger of sorts. I think what I've learnt since being on here, is everyone has a completely different story to go with their cluster disease. What works for some, doesn't for others. I mean why have 60 plus percent of sufferers gone completely pain free on the vit D regime, and another 25% with reduced symptoms ( sorry Lancashire Grin

) and some that have no response, why do little idiosyncrasies work for some and not others ? Its quite ironic when you think about it ! I think until a definitive diagnosis, of the true cause comes to light, we must accept that some remedies or treatments may indeed work for some people ! Nothing should be totally discredited, if even a small percentage of sufferers get relief.
I think this is where some of the " arrogance" and intolerance come in to play, Not accepting that EVERYONE is different, what works for me, doesn't necessarily work for someone else. Because we have no factual scientific or definitive evidence of cause or cure ! That sure does open the door for the more forcefull personalities to take it upon themselves to be the judge jury and executioner !!!!
I liked how Brian signed off
" my name is Brian, I'm a Clusterhead, I'm here to help !
we should all aspire to that
Failing all this, Grated ginger, 1/2 a lemon and a spoon full of honey in hot water ! is Dr Hoppy's sure bet remedy to ward off shadows ! it worked for me !
This forum has been a godsend for me, I've learnt so much, Its helped me to firstly accept this horrible disease, and know that I'm not alone. And on top off this, I've met some great people............
My name is colin I'm a clusterhead and I need all the help I can get !! Grin

cheers
colin

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Potter

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Re: Laurelyn and Potter
Reply #35 - Jul 7^th, 2015 at 9:49am

Laurelyn DC
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0.03 Posts per day Date Registered: 06. Jun 2015 at 07:08
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Personal Message: Click to send a Personal Message to Laurelyn DC
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Last Online: 06. Jun 2015 at 09:43Last Post:06. Jun 2015 at 09:43
View › Help for Clusters Using Functional Neurology.Last PM: N/A
_________________________________________________

She's been here for a month now and hasn't come back Which means all of the responses to her original bullshit post are immaterial. Kinda like if a tree falls in the woods thing.

Potter

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blacklab Ex Member	Re: Laurelyn and Potter Reply #36 - Jul 7^th, 2015 at 10:19am You are probably right on that score Potter ! However, " all of the responses to her original post are immaterial" " Kinda like if a tree falls in the woods thing" Well, another immaterial post suggest that you simply don't get it Potter ! The tree never fell, maybe an axe was used, who truly knows ? all the best colin
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Potter

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Re: Laurelyn and Potter
Reply #37 - Jul 7^th, 2015 at 11:05am

Quote:

You are probably right on that score Potter !
However,

" all of the responses to her original post are immaterial"
" Kinda like if a tree falls in the woods thing"

Well, another immaterial post suggest that you simply don't get it Potter !
The tree never fell, maybe an axe was used, who truly knows ?
all the best
colin

I do believe It's "If a tree falls in the woods and there's no one around to hear it does it make a sound?" Much ado about nothing.

Potter

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JHK07 CH.com Junior Offline I Love CH.com! Posts: 98 Gender:	Re: Laurelyn and Potter Reply #38 - Jul 7^th, 2015 at 1:41pm Bottom line, This forum can be a great place to READ and pick up some useful information. Unfortunately it will never be a place to socially gather/ debate talk about stuff/ topics like other forums as long as the succinct self righteous _______s continue (and they will) to run NOOBS away.
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maz CH.com Hall of Famer Offline I Love CH.com! Posts: 1071 Hampshire, England Gender:	Re: Laurelyn and Potter Reply #39 - Jul 7^th, 2015 at 1:41pm If a man goes out into the desert where no woman can possibly hear him, and speaks, Is he still wrong ? lol
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KayleyKat CH.com Junior Offline On my way to a diagnosis....I hope! Posts: 26 Jackson, MS Gender:	Re: Laurelyn and Potter Reply #40 - Jul 7^th, 2015 at 1:55pm maz wrote on Jul 7^th, 2015 at 1:41pm: If a man goes out into the desert where no woman can possibly hear him, and speaks, Is he still wrong ? lol But of course! Cause women are from Venus and Men are from Mars...
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Laurelyn and Potter Reply #41 - Jul 7^th, 2015 at 6:00pm "It's not sorted until it's sorted" Kipling. Hoppy
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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: Laurelyn and Potter Reply #42 - Jul 7^th, 2015 at 6:35pm Quote: I highly doubt it. I just mean the irony of teaching scientific method to a nuclear physicist.
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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Laurelyn and Potter Reply #43 - Jul 8^th, 2015 at 4:05am Quote: She's been here for a month now and hasn't come back Which means all of the responses to her original bullshit post are immaterial. Kinda like if a tree falls in the woods thing. Potter That's not true. Brian.
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tangerinearmy CH.com Junior Offline I Love CH.com! Posts: 58	Re: Laurelyn and Potter Reply #44 - Jul 10^th, 2015 at 5:06am wish she had come back as id of liked an answer to my query,which is i have a false eye on my ch side so what eye exercises do you think they wud recommend
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E-Double CH.com Alumnus Offline Are we ourselves? Posts: 6948 Commack,New_York Gender:	Re: Laurelyn and Potter Reply #45 - Jul 10^th, 2015 at 11:21am Well said Jerry!!!
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E-Double

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Re: Laurelyn and Potter
Reply #46 - Jul 10^th, 2015 at 11:39am

Bob P wrote on Jul 7^th, 2015 at 6:35pm:

Quote:

I highly doubt it.

I just mean the irony of teaching scientific method to a nuclear physicist.

Brilliant!!!
Hi Bob!
Hi Ueli!!

Seeking empirical data on a pseudoscience is quite amusing!!
Just saying!!
Do people feel better after going to them? Sure they do BUT they have to keep on going. Unethical!!
Same goes for psychoanalysis with regards to therapy. People spend fortunes for decades only to learn not one thing but they want mommy' teet! CBT on the other hand is empirically validated and will teach how to cope and what to do instead.
Sorry stroke brain rambling.

Bottom line is still quackery is quackery.
And as far as use of tryptamines, there is tons of research.

Good on ya Brian for always being so kind.
I'll have to make a presence more often. Been too long!!

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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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Callico

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Re: Laurelyn and Potter
Reply #47 - Jul 11^th, 2015 at 2:06am

One final comment and I'm done:

Lancashire Lad, a few years ago, after going chronic due to medical treatments that complicated matters rather than giving me help, I rehabilitated a house for a chiropractor and lead professor at the National College of Chiropractic in Lombard IL, (now the National University of Health Sciences). One day I got hit hard while he was there. He took one look at me and asked if I have Cluster Headaches. When I affirmed it he left me alone until I was done with the hit. This was before we knew energy drinks worked, and O2 had not yet been prescribed to me.

Once the attack was over he came back in and we discussed CH for some time. He knew more about CH than did my Neuro, and he is the one who told me to get O2. We discussed chiropractic, and he told me every student at National studied CH, Migraine, and other primary headache disorders, even though they knew they couldn't help them, except to refer them to a medical doctor. They had an entire chapter on CH alone!

He told me that day that if any chiropractor tried to tell me he could do anything for CH to run, not walk, out of his office, because he was a scam artist and a sham. Chiropractic can be helpful for the attendant pains and problems caused by fighting the pain, but not the CH itself.

We spent over two hours that day discussing CH and other headache disorders (some of which chiro can help) and I learned more than I ever did chasing MD's around the block. Because he was a Doctor of Osteopathy as well as chiro headaches were a secondary specialty to him, and were the subject of one of his PhD dissertations. (He has two) I'll take his word about whether CH is treatable by chiro.

The next time I saw my Neuro I asked how much time he had actually studied CH, and he told me in med school he had a total of THIRTY minutes of education on ALL forms of HA, and he didn't even hear of CH. In his neurology training he had a total of ONE forty-five minute lecture on HA's in general, and a passing reference to CH was made at that time. I wrote about all of this at the time. If you wish to go back into the archives you can probably find it. I'm sorry I can't tell you for sure when it was.

Perhaps Potter's succinct response was blunt and impolite. I will soften mine. It is the night squeezings of a large male ox.

Had Laurelyn asked for help it would have gladly been offered, but when a shill pops on and blatantly pushes chiropractic the BS meter goes into full mode. Can the neurological retraining she mentioned have any value? I doubt it, but would be willing to look into it some more. (I tried to, but all I could get from them was a sales pitch.)

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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Mike NZ

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Oxygen rocks! D3 too!

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Re: Laurelyn and Potter
Reply #48 - Jul 11^th, 2015 at 6:39pm

I've an open mind on the effectiveness of what was described.

I have pretty bad tinnitus which started after the severe concussion I had that also kick started my CHs and migraines. It is pretty loud and it was having a pretty severe impact on my life. After an assessment at the local university I took part in a research project which involved playing a game which included sounds very close in pitch to the tone from my tinnitus daily over a few weeks. This effectively reprogrammed how my brain processes the tinnitus noise to the extent that most of the time I'm not even aware of having tinnitus. It only seems to be obvious at times (like writing this post) that tinnitus is mentioned. The research gained the person involved their PhD and further work is being done on it.

So I have first hand experience of how the brain can be reprogrammed by doing something very simple to change how it processes data. If anything it is scary how simple it was done.

So the possibility of doing something to change how the brain responds to headache pain to me is not something I'd regard as impossible.

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Marc

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Re: Laurelyn and Potter
Reply #49 - Jul 11^th, 2015 at 8:45pm

I have to chuckle at some members here who whine about manners and conduct on this board. I find their whining to be highly offensive. If your name is DJ, you have the right to tell folks how to act in his house.

So, I send a big "howdy" to people that I have learned to both like and respect over the last 16 years here - including Bob, Ueli and Potter!

Marc

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