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Discouraged at the sister site CH.com

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perhaps some of you ran into my posts about my experiences and wishes to warn other on the drugs they are taking for preventing and aborting their headaches

i know what i know from my experiences and if i could do it all again i wouldnt have takin anything for them script wise

sure they got me through the moment or the day or the month but where has it left me? out of options and in more pain than i started with, the AVN and chronic clusters hospital visits, thousands spent, and i am worse than i was when it all started

unfortunately i feel as if i have nothing left to contribute to those on that forum, and on scripted meds and i do know that some are on both forums

i was simply sharing my experiences and with the hopes of informing someone about what can happen, and alls i get is wheres your proof and blah blah blah. i have been down that road and there is no pretty view. yes everyone reacts differently and maybe there is someone similar to me with a bogus doctor scribbling on a pad and sending that poor soul to a hell greater than which one is experiencing now

these drugs are not designed for CH nor will they cure CH either are the ones we discuss here, but as far as i am concerned the food man makes is bad for you what comes from the earth is not, the meds man makes are bad, and it seems the drugs on this earth inj the forest or whrerever they may be have greater potential in helping aid ones battle agaisnt

CH and other ailments

god damn it alls i wanted to do is enlighten of the possibilities

would it have been better if i stated yes verapamil is great it will fix all your problems, lithium is the best, imitrex is a life saver, steroids stay on them you will never have a headache again. to me both sides of the story are risky, and because doctors have a schedule to keep with the will write you off and see the next prson, they are tight with the drug companies and why not, everyones pockets are laced but yours

maybe im ignorant maybe they ones over there are maybe we all are but damn i wish i would have read my post before taking those meds, so pop your seizure pills and your antidepressants and your blood pressure meds and use that imitrex 6-8 times a day, split those syringes and stick it back in your arm, ever see what happens to the end of a needle after it is used once? twice? three times?

damn it im pissed and sorry for the rant on here but i need to let off some steem

honestly i dont know what is best and neither do these other people questioning my experiences so if it leaves me as a loner so be it, let everyone find out the hard way

the only one that truly matters in your life is yourself

AO

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I feel you dude. There is light at the end though. You need to stay here with us and let us help you through it. It was over a year ago now but, I've felt the same as you. I personally would tell every doctor out there to ride the high hard one if I thought it would do any good. You need to understand that you can't save everyone. Some people are to closed minded to try any different. The best treatment you find is right here.

Mad6string

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thanks mad6string, glad to read your post,

i wasnt pushing shrooms or rc seeds, what people do is their business  and like i said i wish i would have read that post i made when i was 14

you have eased my emotions my friend i thank you yet again

AO

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Hey AO,

Ditto what Donnie said here!!  I'm also a member of both sites but spend much more time here cause it's where my heart is but I read your post on CH and have no doubt that you had good  intentions with your post regardless of how some might have taken it!!  I 100% concurr with your opionions of "the prescribed regimen of pharma's used to treat CH"!!!  I have been med free for several years other than the use of 7 Trex injections for hits that I couldn't abort with O2 during my last cycle this past year.  So post away here about the perils of prescription meds, however I have a feeling that for the most part you'll be "preachin to the choir" so to speak...lol!!

DD

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I too am a member there but rarely post.  We went down prescription road for 7 years and the road was treacherous and led to nowhere. Nothing has worked as well as busting.  I certainly understand that it's not for everyone for obvious reasons.  Stay here, this is where your family is. :)

Lee Ann

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thanks DD, appreciate the support as always, just got off the fone wit donnie, theres some great people on this forum, glad i found you guys, you know whats goin on and thankful i found you, or you found me. makes things that much easier

i will be properly medicated, just gonna take some time

id be lost with out this place and the people that create it

AO

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LeeAnn as well, its comforting to have contact with all of you, and thank you for accepting and supporting me it means the world thank you

AO

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Howdy agent.  Didn't read your post but all you can do is give others your thoughts and let them decide for themselves.  Then th ey can choose what is right for them.   Some people need a doctor to tell them what to do.  When they have had enough side effects they may come here and check out the natural meds.

Hang in there daddy-o. :)

--Shaggy

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I didnt see your post on the other board but I can say I see better options on this site. You shouldnt feel like crap by offering "options." I think some of those rx drugs make things worse, hell, i'm thankful I didnt go that route for too long, some people think they became chronic with some of that man made crap.  Too bad people are so closed minded I think this site could really help alot of people like it helped me just a month ago.

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It's not always easy being the messenger. Especially when the message can be bad news.

When people say (and mean for the most part) that they'll do anything to get rid of the pain, side effects don't always matter.

People don't like to hear that 9 people died from Imitrex the first year it was on the market.

There is now plenty of evidence about the adverse side effects of the meds we use to treat clusters. Even Goadsby has admitted that all the prescription meds can make things worse in the long run. This includes Verapamil.

The truth is not guaranteed to elicit positive responses and a thank you.

It's a complicated issue and all you can do is offer your honest thoughts, do your best to differentiate between facts and opinions, and understand that people will react based upon their history, not yours.

Bob

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What you are going through is as old as mankind. Talk to any Christian who has tried to evangelize.

People have a certain investment in their beliefs. Admitting you were wrong is hard enough to do with your loved ones over trivial things. As you yourself said, there have been "thousands spent". Also, a great many years in pain. To have to admit that that was all a waste, that you were a patsy for Big Pharma, that kindly Dr. Funklestein might as well have been writing you placebo, is, to many people, like saying "I'm a big gullible idiot." Of course, it's absolutely worth it, because the reward on the other side is the potential for a regular life.

Like the devout Christian who knocks on 100 doors and gets rejected 100 times, take a deep breath, remember what makes you do it in the first place, and knock on that 101st door, or, in this case, make that next post. It's a great humanitarian work.

I'd put on a daisy duke, grab pom-poms and do a little rah-rah motivational dance, but that would probably blind you, or at least make you throw up. So i'll just say gooooooo agentorange!

lucidity-

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AO,

Sorry to hear that you are upset with the sister station. I haven't read your posts over there but I will. Without reading, I can still understand your anger.

It is very hard to understand the point of view of some of those members.

However, if it wasn't for that board and a guy that posted about the success he had with alternative medicine, a guy named Flash, I would not be here today.

So, keep on spreading the word. Someone is always listening.

Five years ago the biggest problem was, "it's illegal."

Hard to understand how anyone can endure the pain, just to avoid breaking "man's" law.

I think I've broken some laws along the way, but I try to use common sense and common decency.

I gave up over there because of one insult, but you can still try to help.    Leslie

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The truth is not guaranteed to elicit positive responses and a thank you.

It's a complicated issue and all you can do is offer your honest thoughts, do your best to differentiate between facts and opinions, and understand that people will react based upon their history, not yours.

I agree completely Bob.  It's just that some of us have thicker skins than others. 

When I first had success with the alternates, I went back and tried to "enlighten" the masses on ch.com, only to be flamed from several directions.  For a while I enjoyed the 'argy-bargy', but it got old fast and I realized that it was messing up people's threads.  I simply chose to quit posting there and didn't for a few years.

After a while though, I started going back... mostly lurking ...but posting every now and then, especially on the "Medications, Treatments, Therapies" board when I felt I could answer someone's question.  When the flaming started, I would simply PM whoever I was trying to help and stay behind the scenes rather than get into a war of words with people and mess up someone's thread.

I think that a lot of the old troublemakers are gone from that board now, although as Bob says, "The truth is not guaranteed to elicit positive responses and a thank you."

bobb

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The truth is not guaranteed to elicit positive responses and a thank you.

It's a complicated issue and all you can do is offer your honest thoughts, do your best to differentiate between facts and opinions, and understand that people will react based upon their history, not yours.

I agree completely Bob.  It's just that some of us have thicker skins than others. 

When I first had success with the alternates, I went back and tried to "enlighten" the masses on ch.com, only to be flamed from several directions.  For a while I enjoyed the 'argy-bargy', but it got old fast and I realized that it was messing up people's threads.  I simply chose to quit posting there and didn't for a few years.

After a while though, I started going back... mostly lurking ...but posting every now and then, especially on the "Medications, Treatments, Therapies" board when I felt I could answer someone's question.  When the flaming started, I would simply PM whoever I was trying to help and stay behind the scenes rather than get into a war of words with people and mess up someone's thread.

I think that a lot of the old troublemakers are gone from that board now, although as Bob says, "The truth is not guaranteed to elicit positive responses and a thank you."

bobb

Very well stated Bob and bobb....

DD

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but you can still try to help.Leslie 

i would truly like to try and help some over there but its seems to me that i aggravate myself more than i seem to help. as i wish not not take part in the scripted meds anymore thats what the discussion is over there, i feel i belong here and will stay here as long as i am allowed to

i have met (what seems to me) more successful and "real" people here then i have over there, it kinda makes me laugh when someone says the meds have stopped 70% of their attacks, and consider them selves champion of the CH, but they still get hit and still suffer and reach for the imitrex or zomig, i know alot of people have o2 now adays but even myself a while back o2 would be used if the v-mil didnt stop it and the trex didnt kill it, now its the first line of defense along with the rc seeds and nrg drinks

yes at the moment i am experienceing more headaches daily, but they are easier to rid of and i am not worrying about how many shots i got left or what time it is to take some pill and of cause the great side effects i have experienced

People don't like to hear that 9 people died from Imitrex the first year it was on the market.

There is now plenty of evidence about the adverse side effects of the meds we use to treat clusters. Even Goadsby has admitted that all the prescription meds can make things worse in the long run. This includes Verapamil.

thank you for this info Bob, it made me realize im not as crazy as i think i am

When people say (and mean for the most part) that they'll do anything to get rid of the pain, side effects don't always matter.

very true i felt this way at the start, and being ignorant to what may happen i found my self almost unable to walk and realized the hard way , perhaps some people need to learn that way, too bad some of these effects are gonna hang with ya just like the CH

its a terrible road to travel with many potholes and ruts, but if some of those ruts are marked and a few holes are filled, it creates a much smoother ride

AO

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Hey AO,

I read your post over there and I hear where you are coming from, it is hard to get people to change their mind set. I am not going to repeat what everyone else said here as we know what we are doing is the right thing. However I will say that I have my thread going on both sites simultaneously of my experiment and quite honestly though it has been read 2500 times over there the lack of responses to it is incredible. Lately the only positive feedback I have gotten (or any feedback at all) has been from the moderators. The fact the that the moderators have been supportive gives me hope that our message is getting out. Also I still go onto that site everyday and when I hear of people suffering or newbies who are running out of options I post "our" web address and tell them there are options and not to despair. Keep fighting the good fight, all you can do is relate your experiences with the "accepted" medication offered and pray it helps even one person. The goal is for all of us to become pain free without ruining our bodies and minds in the process.

David

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Hey AO,

Go back to our sister site and reread your thread. 

I broke my own rule and posted there becuase I believe in what you are trying to say.  Don't ever let others make you feel that you are wrong when you know in your heart that you are right!

Great post!

bobb

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Hi AO,

CH.com does a lot of good. Many who luck onto it for the first time have never even heard of using oxygen! I'm on the alt bandwagon though and have tired from having to apologize every time I post and from spending a lot of time writing what I think to be a thoughtful post and having no one respond to it. So most of my energy is now devoted to this site too.

Prejudice against street drugs runs pretty deep. The folks at CH.com seem to generally be of a conservative bent regarding them and most aren't going to be too open to the idea of using them even if they knew that they were the only things that would get rid of their headaches. I've had people tell me that straight out!

The best you can do is to be open and loving. Folks will come around when they're ready.

Ron

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i know CH.com is a great place, for many, and was for me

just because we see a doctor with education and "skill" or experience doesnt mean he or she will hold u under there arm and protect you. you have to protect yourself, you have to be your own advocator i believe is the word for it correct me if i am wrong according to spell check it isnt a word but you all understand

the thing that gets me the most is i inform my neuro of the side effects i was experiencing and he continued to give me the drug at that time i had lost all respect for him and stopped the drug that day ( talking about the steroid) i took his script and said thanks. another thing that totally blew my mind was that in his records he knew what my dose of v-mil was and basically cut it in half even after i told him how i was taking it and what dose (720 mg a day, yea outrageous)

thanks again for those that understand support and agree with me, this is truly my new home and family

alleyoop i did read your post on the other site and thank you for sticking up for me, im going for surgery for my hip on the 21st hopefully i got called today and said they can move it up a month, cant wait for the bottle of pain pills to rid the pain in my hip and put it in my head, yea that's sarcasm, i thought i was in hell but im still on the bus about to get the grand tour and hopefully returning with only scars and no more bleeding wounds

my hips arent being replaced yet but what the plan to do is bore a hole up into the femoral head and plug it with a pores piece of metal wich will make things bleed and hopefully get a blood flow back to my hip joint, im young and heal quite well so we shall see how this goes. its called trebecular metal implant intervention system, its somewhat new and should prolong the need for replacement or resurfacing

again i wasnt trying to send people here, nor tell them there meds were the wrong way to go, but to watch out, and look for the signs that could potentially lead to worse problems, i know im not the best with words but to be interrogated and asked wheres my proof, i am my own proof and now i know what can happen and wont take that road again

i been fighting for 10 years good times bad times and all of the above and below at this point the only prescription i see worth getting and using is 02

AO

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Dan had AVN too because of steroids.  He had neck surgery and steroids were given after surgery.  A year later, he had to have hip replacement.

Good luck with your surgery.

Lee Ann

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The folks at CH.com seem to generally be of a conservative bent regarding them and most aren't going to be too open to the idea of using them even if they knew that they were the only things that would get rid of their headaches. I've had people tell me that straight out!

I don't know who told you that nor do I care, but the vast majority of people I know "over there" are more than open to the "alternates" and a fair amount use or have used them. I think the problem is that most people these days come off like they have a monopoly on the truth and argue as such. That applies to both sides of any issue.

I've taken my lumps "over there" but nothing has compared to being disparaged as a group on the other sites that have sprung up.

Don't wonder why some don't cross the bridges like I do. Some don't like what's said when people think they aren't looking....and many because of their station in society CAN'T announce publicly what works for them. I for one won't jepordize everything my life holds just to make others feel good about what they do in theirs, but rest assured I've sent more people to look at this treatment than many of you that post daily.

Go ahead......make the divide greater. That will help us all. Just remember....nothing works for everyone....even what works for you.

B

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I am a member at both sites, but clusterbusters is where it is at. I always got really discouraged at the other site when people would get all pissy at me for taking pain meds. Different things work for different people, and for me, pain meds help. There really needs to be a little more acceptance by folks over there. Luckily, I do not have to take pain meds anymore since I started reading this site and dosing with LSA

Long live clusterbusters!

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I just want to chime in: I absolutely agree with the consensus that is emerging here: different strokes for different folks. Just in the last 5 days, I've seen verapamil is the savior, no, verapamil is the devil. Ditto pain killers. Ditto steroids. Ad nauseam. Ad infinitum.

Respect differences. It is always best to say "this is what works for me" as opposed to "this will not work for you."

"Letting a hundred flowers blossom and a hundred schools of thought contend..."

lucidity-

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