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Friends and Family just don't get it!


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I just need to vent for a moment. In the past few days I have had one family member and two "friends" tell me they had the cure for my "headaches". The first thing I do is say thanks and then explain there is no cure but lay it on me can't wait to hear this one. First one suggested after I told him I could not go to a concert with him (was starting my alt therapy and the hits were coming fast and furious) that Tai Chi was all I needed, I asked him to check out this our cluster headaches message board before he started telling me how to cure something that I have been dealing with for over 12 years and that I had tried, acupuncture acupressure, bio feedback, massage, chiropractic, lithium, prednisone, verapamil  and on and on. He hung up on me LOL. The next person told me all I needed was alkaline water, I checked it out on the Internet and of course it is basically a pyramid scheme and a hoax. He now is mad at me because I wouldn't by his f&*ing water. Next my sister in law said she had a friend who could hook me up to a computer and tell me what was causing all of these "headaches". I was like wow why haven't the Doctors thought of that LOL. Anyway I am just getting this off my chest I am sure there are many of us out there who have had well intentioned friends and family, but when you tell them to check out our cluster boards they never do. Peace out

David   >:( >:(

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I had a friend tell me that a food supplement (sold by the  pyramid scheme his wife was involved in) would cure my headaches and there were even testimonials on their website! (Of course there were... curing everything from vaginitis to clusterheadaches... similar diseases, aren't they?)

Same testimonials for Nikken Water Filters, which a friend sent to me (also a pyramid scheme thing) that allegedly cures everything under the sun. This may come as a shock to you, but the filters did nothing for my headaches or anything else.

While these people may think they are well intentioned, there is a certain meanness associated with such gullibility as to cause them to offer false-hope to a suffering friend.

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when people give me suggestions i'll say "thanks I'll give that a try" it would be impossible for someone else to really understand that hasn't studied it. i guess thats OK. the ones that have been in a vehicle with me on a road trip during an attack really don't have too much to say other than i need to get my ass to a doctor.

my mom and my wife have been very helpful over the years. 20 some years ago mom would go to the library, buy books, and save news clippings. she did her damnedest to wrap her mind around what i was going through and she came up with several things that i still use. water treatment, frozen peas, ect.

my wife more less steered me to the internet several years ago to get answers.

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when I get the: "I understand, or it cant be that bad"

I reply with: "If you could just wake-up to one you would understand what a lifemare really is"  (nightmare)

when I was episodic, I really didn't seek much help and no one understood me or CH's except close family members.

now chronic and out of the loop of friends people seem to listen more, and wish me the best but I still run into allot of ignorance and do my best to shut them out.

Thanks for that link Brew, I cant even tell you how many I sent it to already and a surprisingly a different attitude in some.

    Darrin

Texas Cluster

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  • 4 weeks later...

;D

I love when people say: " But my headache is baaad, i mean BAD.And it comes often, at least once every second month. I have to lay down in a cold, dark room and just relax. Maybe drink some water. Have you tried that? ;D ;D ;D ;D

In the beginning, i stared at them and was thinking are you f...... kidding with me?! Do you think i`m stupid!

Now i just don`t tell or just tell them it is easier to look it up on internet. Most likely, they don`t, but that doesn`t inflect on my life. That`s why i don`t use time excplaining. You can tell when someone really want to know....

But last week, i was asked if i was ok. A lady, wich i dont know, asked what it was. Head ache someone else answered. And this lady, she actually said: "If you have a headache often, you havent done enough for it. Have you done anything at all?"

I would like to say Oh, you know, i started taking LSD.

I find it funny now, it may be interesting once in awhile to stretch it, just see how far some people take it.

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;D

But last week, i was asked if i was ok. A lady, wich i dont know, asked what it was. Head ache someone else answered. And this lady, she actually said: "If you have a headache often, you havent done enough for it. Have you done anything at all?"

I would like to say Oh, you know, i started taking LSD.

I find it funny now, it may be interesting once in awhile to stretch it, just see how far some people take it.

LMAO

David

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But last week, i was asked if i was ok. A lady, wich i dont know, asked what it was. Head ache someone else answered. And this lady, she actually said: "If you have a headache often, you havent done enough for it. Have you done anything at all?"

I'll ditto David's response.  This is F-in hysterical!!!

When i'm in remission and somebody (a friend or family) brings up that I have bad headaches, others ask what I do.  I just tell them I take hallucinogens and they're like "what"....

Then I go to the closest computer, bring up clusterbusters.com and say if you wish to read, have at it otherwise, it's a long story, LOL!

You can get them to lose interest real fast when you start talking about the hypothalamus or the 5HT receptors in our brain.  Then it's a simple, "next topic please".  ;D ;D ;D

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You can get them to lose interest real fast when you start talking about the hypothalamus or the 5HT receptors in our brain.Then it's a simple, "next topic please".

Hahahahahaha...... ;D Yeah, i know, you see like "oh, what did i start now" kind a look in the eyes ;D

If i was in the mood for it before, i could look at people and say, "no i havent tried anything. Nothing." Then just stood right up front looking at them. Smiling ;D ;D 

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Most of my friends have seem me in the worst of cycles. They say " damn dude, that's intense." Then they ask what I've done to stop them for so long. When I tell them I started eating acid and shrooms they're like " no seriously, what did you do? I don't try to elaborate anymore. I simply tell them I stared a new medicine that works super good. I had a friend tell me that he thought he had one of "my headaches" once...I just wanted to hit him. I was like, man, you really have no f-ing clue. 

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If i was in the mood for it before, i could look at people and say, "no i havent tried anything. Nothing." Then just stood right up front looking at them. Smiling ;D ;D  

Brilliant! Mind if I borrow you the idea?  ;D

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Somehow missed this thread. Been laughing for 20 minutes.

Birdman, my kid's a big guy. He's lost friends that didn't duck. I was with him once when one of them told him that "It can't be THAT bad." Mike's face got all red and that big vein in the middle of his forehead popped out. I just stepped between them and changed the conversation.

Recently, since the shrooms have been so effective, I tell people I'm growing magic mushrooms in every available container all over the house; to please come up and have some with us - we both take them all the time, they're REALLY FUN!! Folks just walk away.

Next time it'll be tingeling's way: "No, he's never tried anything for them, why do you ask?"

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lmao!  i needed a good laugh.  they absolutely dont get it. I tell them to google it, they never do, not even my own mom!  my friends and family think I am rude cuz I cant go to any social functions right now.  like I wud be the life of the party right now anyway!  i try to go 'underground' cuz i am tired of hearing all that crap you've mentioned above, plus, i dont want to have a full blown ch in front of them cuz they will commit me to a looney bin.  my kid is the only one who has witnessed, besides my ex and he used to just get pissed off cuz it interuppted his sleep.  my kid is my angel.  helps her mommy and it sux cause she probably freaks out since i am the only parent she really has.  sorry to get so serious. so, I am gonna borrow the line, "No, I havent tried anything." (as i am thinking: only 100 diff pills, weed, seeds, ice, heat, humidifier, magnesium, red bull, melatonin, feverfew, oxygen, ginger, avoiding alcohol,  my head in the freezer, snorting habanero pepper juice...)   ;D

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As the one who started this thread I find it ironic I got it again yesterday from my Brother (he lives in CA) when I tried to tell him I couldn't smoke a joint with him at our other brothers birthday party next month because it is a known trigger. He said just smoke the thing and then I could take some aspirin later if it caused one of "my headaches". Oh well, just the cross we bear in addition to our pain LOL ;D

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