I support my boyfriend who's had CH for almost 20 years.  Second to himself, his lovely, gentle-souled mother must be the person who mosts wants to see him "cured." (I'll happily take 3rd place.)

The problem is that she refuses to believe that there is no known cure, and she hates doctors and drugs and medical science (and she's a nurse?) to the point where she won't even go with him to hear what the doctor says, or read any information about cluster headaches.  She truly believes in the theory that all physical symptoms stem from feelings and memories within our subconscious mind that we haven't processed, dealt with, or lived up to yet.  Therefore, if we pray to our own spirit/self/soul to make us conscious of whatever is causing the symptom, and then deal with the matter, the body will remove the symptom itself.  :-? (Everyone still with me? She explains it so sweetly that you just want it to be true.)  Basically she believes that if he meditates and prays to himself he will be cured, and there's just no telling her otherwise.

We've tried to tell her that any sufferer would do ANYTHING to be cured, and that if that actually worked, everyone would already be doing it.  She said (this is going to sound offensive but she didn't mean it to...English isn't her first language) "Everyone just wants to run to a doctor and say give me pills, give me drugs.  They are too lazy to just educate themselves and learn to fix it."

Anyway, I'm not posting this to be hard on her.  And I don't want any disrespectful responses.  I'm hoping that maybe someone out there, in all their desperation, has heard of this or tried it, and will post their experience/results.  Maybe she's really on to something and all you C-Heads can try it!  Wouldn't that be awesome! Cheaper than meds and easier than dancing all night?  And permanent results?!  Who wouldn't do that if it worked? (Honestly I'm trying not to sound sarcastic.)  Maybe it wouldn't hurt if he tried it himself just to put her mind at ease, but he's in the middle of a wicked cycle now and as much as he knows she's trying to help, it's also stressful that she doesn't (and seemingly doesn't want to) understand.

So again, if you know anything about this stuff; if you've tried it or anything like it; if you think you have anything to say that might help a wonderful, frightened, heart-aching mother learn to truly support her son; or if you have the words for a son to share with his mother then please, PLEASE tell us your story.

We all know a positive attitude, one built not upon wishful thinking but upon personal and research based knowledge, is critical when dealing with CHs. We choose not to give in to the pain but to combat it. We also come to this with our own measures of faith...faith in ourselves, our doctors, our God. Having said that, it's also important for your boyfriend to know CHs are physiological in origin, not psychosomatic. Yes, we are driven to distraction when in pain, but effective abortives and preventatives go a long way to ease our suffering. Please do not mistake the interplay between mind and body to mean there is no such thing as harmful bacteria, or viruses, or physical injury. A cut finger is real; a broken bone is real; and neither the cut nor the break will heal get better because we think it so. Nor will a CH. By all means, bring your faith to the arena. I for one think that is a neccessary component to long term health. But please convince your boyfriend he ought to explore and implement good advice from here and from his doctor. Hope this helps. God bless. lance

Don't engage her! Debate/discussion/etc. only stimulates her response. If you rolled over and said "YES, you are right!", the next step would be, the clusters would not stop and you would get her "corrections" because you didn't follow her treatment plan correctly.

About all you can do is, "Thanks, mom, for your thoughtfulness and concern." Then you stop! No argument, justification, etc. It will be hard for her to argue with silence....

Yeah...what Bob said. Not a "winable" argument. She means well as only a mother can. ::)

Joe

While it is possible to reduce one's reaction to an attack (and lessen the perception of pain), it is not possible to eliminate CH, end a cycle, or even halt a single attack by thinking about it.  Do something long enough, and often enough, and you get better at it.

That's about it.

CH has physical causes, not metaphysical ones.  Like anything else with a physical cause--malaria, heart disease, broken bones, what have you--if the cause is understood and eliminated or if the symptoms are treated, it gets better.  Otherwise, it does not. 

From time to time, we hear from folks who believe, strenuously, that CH can be controlled by thinking positive thoughts, or eliminating negative ones. 

It doesn't work.  I don't know how to say it more plainly than that.

Wishing you all the best,

George

         

Yes...Bob's suggestion 
Quote:

Thanks, mom, for your thoughtfulness and concern." Then you stop! No argument, justification,

   Is the very best way to handle this.

Our "Significant others "  HATE to see us in pain of course, but MOTHERS are a whole different ball-game when it comes to seeing their child in pain and waqnting to do something to help.  In this case she is doing him no service and probably making him feel worse.  Like George said, it is not possible to eliminate CH just by thinking about it and praying. 

I mean no dis-respect at all here but it is very ironic to me that his mom is a nurse with these mis-conceptions about medical science.   

Keep supporting your boyfriend and keep reading around here.  Send HIM  here also so he can catch up on anything new that he might not have heard about.  Kudzu, RC seeds, energy drinks and so forth.  You're doing a great job in your concern for him.  He's a lucky man. 

Linda

When I first got diagnosed I had a boyfriend who had the same opinion.  All of the explanations of a physical problem in the hypothalamus, a serotonin-histamine "storm" similar to epilepsy, he'd hear NONE of it.

Luckily, his favorite food was curry, which had been known to wreak havoc on his digestive system from time to time.  I told him if he was so certain his mind had complete control over his body he should use his mind to stop having diarrhea.

He never lectured me about pain and the mind again.

In SOME aspect of your MIL's life she's being hypocritical about the mind-body connection or she wouldn't be so judgmental about it.  Find it, exploit it, she'll shut up.   ;D

One more vote here for Bob's approach.

OK I like Katherinecm's too  ;), and it would certainly be more fun  ;D, but in this case I guess the less feather ruffling the better.

Glad to see how much we have used restraint in our responses so far, with nobody being referred to as an a-hole or full of bulls***.  :D

Ah I know the type Jewels, all to well! 


Quote:

Yes...Bob's suggestion  Quote: Thanks, mom, for your thoughtfulness and concern." Then you stop! No argument, justification.

This the best way to handle it, I agree completely.

However the never ending sarcastic side of me want's to ask 'mom' if meditation and prayer could have stopped her from giving birth once labor had started???

Shame on me I know...just couldn't help myself.  ;D

Keep your sense of humor and silence sometime is truly golden!  ;)

Thanks guys. She's still insisting that he go with her to see someone who will speak to his subconscious and get to the root of the problem.  He's a good guy so he's gonna let her take him.  He asked me what I thought about that and I said, "Well look, we know it won't help but it's not gonna hurt either. It's not like trying some experimental drug with dangerous side effects."  Maybe she can help him with other things like being more positive or having more energy.  And if it turns out to be a miracle cure, I'll give you all her address.  ;)  I just hope that mom starts to understand better after this.

Jewelz wrote on Aug 24^th, 2010 at 1:54am:

Thanks guys. She's still insisting that he go with her to see someone who will speak to his subconscious and get to the root of the problem.  He's a good guy so he's gonna let her take him.

And there ya go. The process of ignoring an unwanted stimulus, also called extinction, doesn't work. It doesn't work when a three year old is screaming, or when a mom is pushing her own opinions. This isn't a two sided debate, it is a three sided dilemma. The one who needs convincing isn't the mom, it's the one who is suffering. I wouldn't refuse to engage a helpful mom who was insisting someone's chest pains weren't problematic. Even if, and maybe especially if, her convictions were based in religion. I'd do my best to bring my convictions (physical and metaphysical) to the table. All this has bought your boyfriend, I'm afraid, is an unnecessarily longer period of suffering without exploring viable preventatives and abortives. Keep reading, and when he is ready, bring your boyfriend here so he can arm himself against the beast. Blessings. lance

I would say that her suggestions are not going to cure CH or stop his pain. However, it may help give him some coping mechanisms. Hopefully though he's on his way to a treatment regimen that includes both preventatives and abortives (oxygen being the top, non-drug choice around here).

Best,

Christy

When I was a kid I was diagnosed with a stomach ulcer - anyway my mother sent me off to see some of her hippy friends who told my that I had to love my ulcer, accept my ulcer - if I did this it would stop causing me pain  ::) So, yeah I can kind of understand what you are going through.... urghhh  >:(

That said, good on you for being such a wonderful supporter and for being so patient with the mother!!!

I hope your boyfriend gets some relief soon!

Kate

Jewelz wrote on Aug 23^rd, 2010 at 3:45am:

...She truly believes in the theory that all physical symptoms stem from feelings and memories within our subconscious mind that we haven't processed, dealt with, or lived up to yet...

Sounds suspiciously like "Emotional Freedom Techniques" (EFT).

EFT is a pseudoscientific scam where for a not-so-modest fee, a practitioner will tap on "Energy Meridians" on your body, releasing "blockages of negative emotional energy" and thereby curing all your ills!  It works, to some degree, with psychosomatic ills via the placebo effect.  If it doesn't work, you're advised that you just need to pay more and have more "therapy".

Google "EFT" for more info, and see if perhaps that's what she has fallen for.  Good luck!

Regards,
Jim

just tell him to get here on this site.Himself.
and i am really trying to be polite as possible.


Quote:

Maybe she's really on to something and all you C-Heads can try it!  Wouldn't that be awesome!

seriously tell him to get here.fast.

No reason to alienate Mom, Jewelz. If a single trip to see her shaman doesn't cost much, it might be all it takes to convince her that prayer/meditation and witch doctors won't fix her son's HAs. That is, of course, unless it does.

bonkers wrote on Aug 25^th, 2010 at 9:05pm:

No reason to alienate Mom, Jewelz. If a single trip to see her shaman doesn't cost much, it might be all it takes to convince her that prayer/meditation and witch doctors won't fix her son's HAs. That is, of course, unless it does.

Problem with MIL's kind of mentality is if it the son does do the prayers/meditation and isn't cured, it's obviously (to her) because he didn't try hard enough or have enough faith or whatever...

Lettucehead wrote on Aug 25^th, 2010 at 9:13pm:

Problem with MIL's kind of mentality is if it the son does do the prayers/meditation and isn't cured, it's obviously (to her) because he didn't try hard enough or have enough faith or whatever...

... or pay enough, yet...!  :o

Yeah I'm kinda afraid that it will backfire too.  And no, I don't really think that it'll work but I guess it doesn't hurt to say "What if...?"  After all, getting up close and personal with a freezer works for some, right? LOL  We all hope for a miracle and know there ain't one coming.  I think he's hoping that if he goes to see her guy, then maybe she'll agree to go see the neurologist with him.  Up to this point, she's flat-out refused to hear what the doc has to say.  Somehow I don't think hearing him will change her mind anyway...just an unfortunate situation.

He just got the internet, he checked out the site briefly.  I'm going to show him everything when I see him this weekend.  Thanks for all the cyber-hugs!

Jewelz wrote on Aug 26^th, 2010 at 1:11am:

We all hope for a miracle and know there ain't one coming.

Miracles come in all shapes and sizes. To me, this site was a miracle. So is the effectiveness of O2, and the interventions that allowed me to go back to episodic after being chronic for the past 3 years. Miracles aren't limited to instantaneous and supernatural causation only...sometimes the effect we have been hoping for comes miraculously after we have applied the best interventions we know. Don't give up here...it will be a miracle for your boyfriend's mother to decide to put her son's well being first, and for him to seek his own path in this. He is lucky to have you...but keep on believing yourself for his sake. Blessings! lance

Kilowatt3 wrote on Aug 25^th, 2010 at 7:39pm:

Jewelz wrote on Aug 23rd, 2010 at 3:45am: ...She truly believes in the theory that all physical symptoms stem from feelings and memories within our subconscious mind that we haven't processed, dealt with, or lived up to yet... Sounds suspiciously like "Emotional Freedom Techniques" (EFT). EFT is a pseudoscientific scam where for a not-so-modest fee, a practitioner will tap on "Energy Meridians" on your body, releasing "blockages of negative emotional energy" and thereby curing all your ills!  It works, to some degree, with psychosomatic ills via the placebo effect.  If it doesn't work, you're advised that you just need to pay more and have more "therapy". Google "EFT" for more info, and see if perhaps that's what she has fallen for.  Good luck! Regards, Jim

EFT is not something you have to pay to do.  Whether it "works" or not is something you have to decide yourself. 

If you want to read up more on something that basically agrees with her theory, but provides a better explanation for it and an actual process, EFT is certainly one such method.

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(Someone pushed this on me because it "cured" her boyfriend's arthritis).

Hmm, I wonder if EFT will cure this other problem I've got. I can't seem to win the lottery. Surely this would be a great way for an EFT practitioner to show how advanced their skills are?

Well, as the people using/practicing EFT say, "try it on everything!"   ;D  You never know...

I was merely pointing out that many people are quick to dismiss alternatives because they are based in a different belief system.  EFT certainly runs against conventional western thinking, but because Jim encountered someone he considers to be a "quack" doesn't mean it should be dismissed out of hand, IMO.  His post is certainly incorrect in that to practice EFT you do not need to pay anyone, and that was additional information I thought ought to be out there.

I have successfully used acupuncture for various things.  A friend believes acupuncture "cured" the clusters she began experiencing after falling off a horse and hitting her head.

As we all know, correlation does not mean causation.  Given that many people have tried acupuncture for their clusters and it hasn't work would lead us to the conclusion that acupuncture does not cure clusters.  The cessation of her clusters happened to coincide with four months of acupuncture treatment.

My only point in my original post in this thread was to provide the OP with further information on the idea that her MIL is pushing, albeit presented differently. In EFT the basis of the idea is the same:  negative emotions cause disruptions in the flow of our energy, and this manifests itself as illness/pain.  It is not a new idea; it is as old as Chinese medicine, just expressed very differently.  I'm not sure, but I believe Louise Hay was the first to turn it into a kind of cult.

EFT is a different theory or "tool" than prayer or just "positive thinking" on how to address the issue if someone believes that idea to begin with, but my only point was to provide further information if someone chooses to pursue that path.  I'm not going to make fun of it.

When you get as desperate as Gary and I do, you'll try just about anything, and this method is certainly safer than the narcotics route.

ALL of that said - I no longer experience the symptoms of asthma.  But Gary's pain hasn't changed one iota.

Garys_Girl wrote on Aug 29^th, 2010 at 12:13pm:

The cessation of her clusters happened to coincide with four months of acupuncture treatment. In EFT the basis of the idea is the same:  negative emotions cause disruptions in the flow of our energy, and this manifests itself as illness/pain.  It is not a new idea; When you get as desperate as Gary and I do, you'll try just about anything, and this method is certainly safer than the narcotics route.

That 4 month period sounds suspiciously similar to the end of an episodic cycle. Having said that, however, I believe no one here will argue that stress (perhaps brought on by negative emotions) is itself a reliable trigger. Avoiding stress through a variety of means is just a good idea for general health. And I do understand the level of desperation that would lead us all to find new and better routes of prevention and more effective abortives. I just want to make sure I'm not so locked into a single (or even an eclectic) belief system that might prevent me from saying...OK, this didn't work; let's try something else. I think being open to what does and doesn't work is really key in battling the beast. As is a willingness to try new things. AFter all, who would have thought energy drinks would be so important to us? Blessings. lance