Hello all. I have not been here for quite some time, but today I felt obligated to return to make this post. Some of you might recognize chunks of it from a couple of the Facebook groups. If so, I'm sorry you had to read it twice. It's not quite the same, though, because I have a few other things to say about it here.

I have been chronic since day one, going on three and a half years. While the beast took his sweet time to really gear up, within about 3 months of the first attack I had one of the worst cases of clusters my home-base headache specialist has ever seen. Of course, no case of clusters is good; I am merely remarking on how quickly things got out of hand and stayed that way. As a result of this, I have been all over the country searching for solutions. To New York City (Lawrence Newman), to the Michigan Head Pain Institute (Joel Saper), to Jefferson (Silberstein), and to the Cleveland Clinic (S. Tepper). I am within a couple of hours drive away from Todd Rozen, who I intend to see shortly.

These are only the headache guys, not to mention all of the other doctors I've had to see to rule out other possible causes of the pain, at least in the beginning. I think based on that list, many of you would agree that I have had access to some of the best possible professional care that is available at this time.

And yet, three and a half years later, as so often happens with the beast… nothing has changed. I have been through the gauntlet: almost thirty different preventatives and (literally) all of the triptans available in the US at some point or another plus various other non-triptan abortives. I have had two rounds of DHE-- DONE CORRECTLY-- supervised by headache specialists. I have had occiptal and supraorbital blocks and have had procedural nerve blocks (sphenopalatine ganglion). I have done the D3 regimen twice and I have home O2. Energy drinks make me feel like death, as does excessive caffeine. I cannot bust for reasons I am not comfortable disclosing, but as of right now it is plainly not an option. I don't like to toot my own horn, but I have no problem saying that I have done as much in 3 years as some people (some-- not all) have in three decades. That comment has nothing to do with anyone else's choice of action or treatment and of course 30 years ago we did not have so many options. The sole reason I point that out is simply to say it runs me fucking ragged, especially with so few results.

And now I will backtrack to get to my point. One night, years ago now, I was in the ER with an attack. They started me with toradol/compazine/benadryl and O2, the usual migraine cocktail plus the O2 since I told them it was a cluster attack. Not only did that do nothing, but it turns out I have a compazine intolerance and I nearly tore the IV out during the extreme anxiety that followed. I was in agony and the walls were closing in as a result of the meds. After a reassessment, the doctor wrote for IV dilaudid. Within about 10 minutes of receiving the dose, a true kip 10 was reduced to about a 3. I went home and I slept.

To make a long story short, today I am on daily prescription opioids (as well as verapamil, zonegran, and zomig NS) and my pain has never been so under control. And yet, the majority of you do not know this. This is the problem, this is the point of my post. For whatever reason that I will never understand, many clusterheads are somehow the least compassionate people on the planet with regards to this class of medication.

And please, don't embarrass yourself by trying to give me any reason for why this is other than personal bias and prejudice. This is not about efficacy, rebounds, tolerance, or dependency-- NOT when you are discussing the choice ANOTHER PERSON has made for their own treatment. I recognize that opioids are 100% ineffective for the vast majority of sufferers, and even for those they help I recognize that the above concerns are completely valid reasons not to pursue such a treatment plan.

However, I do not buy for one second that it is anyone's concern for my getting rebounds that has led to some of the most foul comments I have received on the matter from other clusterheads over the years. I had to stop posting on the clusterheadaches.com because of it. I NEVER suggest such a treatment option for others and I am just as well-versed on the typical CH treatments as the best of us. Verapamil (etc.), trex injections, O2, caffeine/taurine, ice packs, busting, etc. is the advice I give to others, not "go pop a bunch of prescription heroin."

It is for this reason I find it amazing, absolutely amazing, that I can be spoken to or treated the way I have been in the past. I have been patronized, mocked, and called a drug addict. I have been told I am too young to know better, which is the biggest bullshit on the face of the earth. I have known addicts, I have loved addicts, and I do work with and for addicts. Anyone who assumes that I don't know the potential havoc such drugs can cause lives in a world where 22-year-olds are still children; I can assure you that I am not.

As this post has gone on long enough, I am going to wrap this up. But for those of you who hold the philosophical views that are exactly what I am complaining about, feel free to do some reflecting. This is the one place where I and others-- pursuing any treatment they find best-- should be able to speak freely about my suffering and about MY DECISION of how to handle it. And yet, I have barely mentioned it once because of this. I am a smart person. I am an educated person. I am a compassionate person and I try to give good advice, and yet my choice of treatment not only has the ability to make me a leper here, but can wipe out any good I try to do. Fortunately, I don't need anyone's approval to do what works best for me, but I find the whole thing incredibly disturbing.

I am old enough to decide when the benefits outweigh the risks for myself. I am old enough to understand the impact these medications may have on my head. I am old enough to decide what it is I am comfortable doing.

I must point out specifically what a problem Potter was when I was on this site regularly. He almost single-handedly drove me away from this site, and on a number of occasions his comments made me feel even more suicidal when combined with the CH. Almost every time I posted about this topic, he called me an addict. Or an idiot. Or told me I didn't know what I was talking about. Normally I don't name names, but as a result this was one of the worst experiences of my life. So, you know, fuck you very much and I'm sorry you couldn't control your drug intake. I can.

We of all people should be the most understanding of the desperation caused by this condition. We are the only ones who truly get it. I will never understand how some of us can be the least understanding of all.

So, I just needed to get that out for myself. The point of this is to make people think a little differently, but I don't expect to change anyone's mind. This is selfishly cathartic and at this point, I don't give a shit. I want the certain people here who are completely unsupportive, judgmental, and presumptuous when someone does something they don't like to at least be held accountable for their disgusting and deplorable behavior. Believe me, I am well aware that not everyone here is like that and for those who aren't, I appreciate and salute you. However, as a result of my choice of treatment over an early grave, more than one person turned me into an outcast to the point that I decided to just leave.

But I came back because I refuse to be silenced, and it took me this long to stop giving a shit what others say. So now you know. Considering we live with the most painful condition known to medical science and should all be willing to support one another through our personal choices, clearly there are lots of us who can't. I am happier having left, and even happier having made this post.

G'day Zacsz,
That was some story,hoping your feeling better after getting
that all off your chest. With CHs we are all different, what
works for one does'nt necessarily work for another so what
you feel comfortable with thats fine, we all make our own
destiny. You mentioned the D3 Regime did'nt work for you,
did you get your 25(OH)D level checked, you need a serum
concentration of around 80ng/ml for it to be effective.
I'm not telling you how to suck eggs, but it would be wise
to get a blood test and see where you stand

Hoppy.

Thanks hoppy. Yes, I had the D3 tested. I can't remember the exact number as it was a while ago now, but I'm quite certain it was well within range of 80ng/ml because I remember having that figure in my head as what to aim for. I also had quite a bit of issue with the D3... it made me feel pretty strange. I can't really put it into words, "out of it" (slightly) would be the best way but not really accurate. I'm almost sure it was the D3, though, because the second I stopped taking it, that part of things felt better.

And yes. I do feel better having gotten that off my chest.

Glad to hear your feeling better now having got that off
your chest.I hav'nt read here any one getting side affects
with taking vitamin D3, were you taking it with the other
co-factors and with your main meal of the day.?

Hoppy.   

Have you ever explored your headches with this perspective?

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Yup. I brought in that article for my PCP and he sent me for tests based on everything he thought remotely possible within it. Nothing.

And yes, Hoppy. You don't have to run through all the questions-- I spoke to Batch himself a ways back so I'm quite certain that I did EVERYTHING I was supposed to do to make the D3 effective. It just didn't work.

Quote:

You don't have to run through all the questions

I can only take this to mean you really aren't here seeking help at all. To you this is just a forum for self-aggrandizing bullshit - both your own brand and that of others.

Or so it would seem.

You misunderstood what I said and as a result made an ass of yourself. I meant that he didn't have to go through all of the different ways I could have messed up the D3, because I went through them with Batch himself and am sure I did it right both times. I meant nothing more than that, so I'll thank you very much to keep your incorrect analysis of my words to yourself.

As a matter of fact, though, it is exactly that kind of reply which well exemplifies my issues with this forum. It doesn't matter whether the topic is narcotics or D3 or psychedelics or O2: your post was presumptuous, patronizing, and not even right.

Even though I suffer just the same as you, you think it's some fucking joke.

.... or so it would seem.

I felt your very lengthy post was worth reading with an open mind until you pointed your middle fingers at one individual who I value, from that point you lost all potential hope of respect resulting in you banned from this site. 

"Some things are better left unsaid."

-Gregg in Las Vegas

Nope, yet another incorrect and presumptuous post from the world's worst forum.

I deleted my account voluntarily, as I will do with this one, after clarifying your misinformation.

I was not banned. I left before the chance could be taken.

I couldn't care less how you feel about my singling out of Potter, who singled me out for months to the point he drove me out of hear.

Some things are better left unsaid for OTHERS. I feel better having said what I did, and for all the support I've gotten on here (next to zero), that's all I care about.

Fortunately, I am not fragile. Someone on this website is going to lead someone to their grave someday.

Please, do you think I would give anyone the satisfaction of banning me?

If so-- wrong. Just like so much else that goes on here.

Oh well; I've lost no resource here. And boy oh boy do I feel better holding you guys responsible for your judgments and constant presumptions.

Bitter? Yes, but you can bet it's not on my own accord.

Goodbye and good luck.

G'day Zaczsoke, and as a fair dinkum CHead I know how tough it can be. I'm always amused that the Gods of medical science are happy to describe our dread disease as the most painful condition known to mankind,  whilst doing absolutely nothing about it.

There are many ways of taming this beast but the overwhelming opinion here is that the use of opioids is a lousy way to go about it. Seems they may actually make the attacks worse, while leaving you less able to handle them.

A double whammy!

You've received some harsh treatment here, which is unfortunate, but I urge you to seek all the knowlege available so you can make an informed decision.

I sincerely wish you well,

Brian down under.

yep,
            couldn't have worded a post better aussie brian.


...zaczsoke,  didn't know you, im pretty new here,  but good luck with being pain free, however you achieve that....

colin

I used to live in western North Carolina in a very rural area full of forests and farm fields. Wonderful country for my dog and me to take long walks where could sent out the deer and birds as I enjoyed the view of the distant mountains.

But we learned quickly to keep an eye open for "cow pies", especially the fresh ones!

A second lesson about them: I didn't have to put my boot in them to prove my superior standing over them.

For anyone new who reads this post - please note the following:  This forum saved me a lot of pain.  It showed me what to ask my doc and how to deal with some of the issues CH brings.  The poster who started this thread has a different opinion, and one I believe would be in the minority of people who find this forum.  I have found everyone here willing to help and very caring.  I guess you can't please 100% of people 100% of the time.

wrote on Jul 27^th, 2013 at 4:35pm:

Hello all. I have not been here for quite some time, but today I felt obligated to return to make this post. Some of you might recognize chunks of it from a couple of the Facebook groups. If so, I'm sorry you had to read it twice. It's not quite the same, though, because I have a few other things to say about it here. I have been chronic since day one, going on three and a half years. While the beast took his sweet time to really gear up, within about 3 months of the first attack I had one of the worst cases of clusters my home-base headache specialist has ever seen. Of course, no case of clusters is good; I am merely remarking on how quickly things got out of hand and stayed that way. As a result of this, I have been all over the country searching for solutions. To New York City (Lawrence Newman), to the Michigan Head Pain Institute (Joel Saper), to Jefferson (Silberstein), and to the Cleveland Clinic (S. Tepper). I am within a couple of hours drive away from Todd Rozen, who I intend to see shortly. These are only the headache guys, not to mention all of the other doctors I've had to see to rule out other possible causes of the pain, at least in the beginning. I think based on that list, many of you would agree that I have had access to some of the best possible professional care that is available at this time. And yet, three and a half years later, as so often happens with the beast… nothing has changed. I have been through the gauntlet: almost thirty different preventatives and (literally) all of the triptans available in the US at some point or another plus various other non-triptan abortives. I have had two rounds of DHE-- DONE CORRECTLY-- supervised by headache specialists. I have had occiptal and supraorbital blocks and have had procedural nerve blocks (sphenopalatine ganglion). I have done the D3 regimen twice and I have home O2. Energy drinks make me feel like death, as does excessive caffeine. I cannot bust for reasons I am not comfortable disclosing, but as of right now it is plainly not an option. I don't like to toot my own horn, but I have no problem saying that I have done as much in 3 years as some people (some-- not all) have in three decades. That comment has nothing to do with anyone else's choice of action or treatment and of course 30 years ago we did not have so many options. The sole reason I point that out is simply to say it runs me fucking ragged, especially with so few results. And now I will backtrack to get to my point. One night, years ago now, I was in the ER with an attack. They started me with toradol/compazine/benadryl and O2, the usual migraine cocktail plus the O2 since I told them it was a cluster attack. Not only did that do nothing, but it turns out I have a compazine intolerance and I nearly tore the IV out during the extreme anxiety that followed. I was in agony and the walls were closing in as a result of the meds. After a reassessment, the doctor wrote for IV dilaudid. Within about 10 minutes of receiving the dose, a true kip 10 was reduced to about a 3. I went home and I slept. To make a long story short, today I am on daily prescription opioids (as well as verapamil, zonegran, and zomig NS) and my pain has never been so under control. And yet, the majority of you do not know this. This is the problem, this is the point of my post. For whatever reason that I will never understand, many clusterheads are somehow the least compassionate people on the planet with regards to this class of medication. And please, don't embarrass yourself by trying to give me any reason for why this is other than personal bias and prejudice. This is not about efficacy, rebounds, tolerance, or dependency-- NOT when you are discussing the choice ANOTHER PERSON has made for their own treatment. I recognize that opioids are 100% ineffective for the vast majority of sufferers, and even for those they help I recognize that the above concerns are completely valid reasons not to pursue such a treatment plan. However, I do not buy for one second that it is anyone's concern for my getting rebounds that has led to some of the most foul comments I have received on the matter from other clusterheads over the years. I had to stop posting on the clusterheadaches.com because of it. I NEVER suggest such a treatment option for others and I am just as well-versed on the typical CH treatments as the best of us. Verapamil (etc.), trex injections, O2, caffeine/taurine, ice packs, busting, etc. is the advice I give to others, not "go pop a bunch of prescription heroin." It is for this reason I find it amazing, absolutely amazing, that I can be spoken to or treated the way I have been in the past. I have been patronized, mocked, and called a drug addict. I have been told I am too young to know better, which is the biggest bullshit on the face of the earth. I have known addicts, I have loved addicts, and I do work with and for addicts. Anyone who assumes that I don't know the potential havoc such drugs can cause lives in a world where 22-year-olds are still children; I can assure you that I am not. As this post has gone on long enough, I am going to wrap this up. But for those of you who hold the philosophical views that are exactly what I am complaining about, feel free to do some reflecting. This is the one place where I and others-- pursuing any treatment they find best-- should be able to speak freely about my suffering and about MY DECISION of how to handle it. And yet, I have barely mentioned it once because of this. I am a smart person. I am an educated person. I am a compassionate person and I try to give good advice, and yet my choice of treatment not only has the ability to make me a leper here, but can wipe out any good I try to do. Fortunately, I don't need anyone's approval to do what works best for me, but I find the whole thing incredibly disturbing. I am old enough to decide when the benefits outweigh the risks for myself. I am old enough to understand the impact these medications may have on my head. I am old enough to decide what it is I am comfortable doing. I must point out specifically what a problem Potter was when I was on this site regularly. He almost single-handedly drove me away from this site, and on a number of occasions his comments made me feel even more suicidal when combined with the CH. Almost every time I posted about this topic, he called me an addict. Or an idiot. Or told me I didn't know what I was talking about. Normally I don't name names, but as a result this was one of the worst experiences of my life. So, you know, fuck you very much and I'm sorry you couldn't control your drug intake. I can. We of all people should be the most understanding of the desperation caused by this condition. We are the only ones who truly get it. I will never understand how some of us can be the least understanding of all. So, I just needed to get that out for myself. The point of this is to make people think a little differently, but I don't expect to change anyone's mind. This is selfishly cathartic and at this point, I don't give a shit. I want the certain people here who are completely unsupportive, judgmental, and presumptuous when someone does something they don't like to at least be held accountable for their disgusting and deplorable behavior. Believe me, I am well aware that not everyone here is like that and for those who aren't, I appreciate and salute you. However, as a result of my choice of treatment over an early grave, more than one person turned me into an outcast to the point that I decided to just leave. But I came back because I refuse to be silenced, and it took me this long to stop giving a shit what others say. So now you know. Considering we live with the most painful condition known to medical science and should all be willing to support one another through our personal choices, clearly there are lots of us who can't. I am happier having left, and even happier having made this post.

After reading this post thrice in its entirety, I sincerely hope that you are getting some professional help on multiple fronts. Seriously, take a deep breath, put your anger aside and re-read your post. Think about why you came back here in a dual defense/attack mode.

I'm not known for blowing smoke out my butt and I'll put my 14 years of absolute CH horror stories right out on the table if you feel the need to compare. You wanna go "one on one" about how horrid it's been? Bring it on, we can impress each other, while everyone else here with the same experience yawns.

Read what TeeJ2379 already posted.

This place has done more good than you perceive. Telling us not to "embarrass ourselves" by defending against your personal attacks speaks volumes about your agenda. People on this site care more than you can ever comprehend, because SO MUCH good is done privately behind the scenes.

Maybe you live in a fairytale land, but I don't - and sometimes the truth hurts. This is real life, pick yourself up and decide how to spend what time and energy that you have left after rolling around in the agony of back-to-back  K10’s – then knowing that they will be back soon – again and again and again and….. there is no end……

I'll not apologize for how you were treated because I wasn't party to it and I wasn't there to witness it. BUT, I will say that the choice is yours.......

Marc

Forgot to say:

Yes, I know that you deleted yourself (I did too once because of hurt feelings) but I believe that you are reading this because of your previous posts.

Good people here.

What an interesting read ! It reminds me a lot of another member here (although I have not seen his name since my return). This 'other member' gave me hell and many other member 'friends' of his joined the bandwagon until I had finally had enough and I left on my own.

I think we can all agree that what works for some will not work for everyone. I don't think that there is 1 single thing that every clusterhead will benefit from. With that being said, I believe that while the majority does not benefit from narcotic therapy, there also has to be a few that does benefit from narcotics for some reason. So my take on this particular person's story is ... "You gotta do what you gotta do" when fighting against such a beast that we fight. If narcotics helped me, then that's EXACTLY what I'd be doing. No need to think about it or debate it with myself or anyone else. If it worked for me, I'd do it PERIOD !

I also want to say that it is a shame that some people have come here with good intentions and then get attacked for their participation on this board. Spamming snake oil salesman are another story (People trying to make a $$ for themselves at the expense of clusterheads). The person that started this thread doesn't appear interested in making any $$ from anyone here. The sharing of his story alone (weather anyone likes it or not) should not be any reason for anyone here to personally attack what may work for him, regardless of what it is.

This thread brings up a lot of old memories about when and why I left before too. The heckling I had to hear just because my belief on a certain subject did not match his beliefs at the time was just ridiculous to say the least.

It is too bad that this board is aligned in a way that others must conform or be castrated by some of the members. The msgboard rules states that a person cannot be singled out for personal attacks, but I have seen it from 'regular attending members' without consequences against newbies. Further evidence that this board is definitely not a democracy and more like a dictatorship, which is so unfortunate.

I came here (in the 1st place) to learn more and to share my experiences. I've also tried all sorts of meds, treatments, and procedures. I also know all of the doctors that were mentioned in this thread topic. I've travelled the US to headache centers/clinics and seen most of the top specialists in the headache field. I think my experiences are no more, but no less important than those of other members' here.

My point: I think there are still a couple of members here that need to be reminded of the 'Rules' written out for participation on this board. No one should be above these rules. When that happens, it makes some of us want to pack up and leave. I know that's not going to make or break this board, but it's not going to help it any by losing someone with a lot of personal experience in dealing with and treating cluster headaches.

Maybe there should be some guidelines drawn out before some are classified as trolls or snake oil salesman and ran off this site. Some of the members should be a little more respectful in their responses to avoid running off someone who may have made a big difference at some point in some way.

That's all. Just a few things I wanted to say that hopefully will make some think before they pop off and type some insensitive BS in the spur of the moment.

Goodluck to everyone fighting the beast ... no matter how you do it. Beating the beast is ALL THAT MATTERS (to me) and it's all that should matter around here.

lI4B

by Peter J. Goadsby and Lars Edvinsson

Summary

"Cluster headache is a rare very severe disorder that is clinically well characterized with a relatively poorly understood pathophysiology. In this study patients with episodic cluster headache fulfilling the criteria of the International Headache Society were examined during an acute spontaneous attack of headache to determine the local cranial release of neuropeptides. Blood was sampled from the external jugular vein ipsilateral to the pain before and after treatment of the attack. Samples were assayed for calcitonin gene-related peptide (CGRP), vasoactive intestinal polypeptide (VIP), substance P and neuropeptide Y. Attacks were treated with either oxygen inhalation, sumatriptan or an opiate. Thirteen patients were studied of whom 10 were male and three female. All had well-established typical attacks of cluster headache when blood was sampled. During the attacks external jugular vein blood levels of CGRP and VIP were raised while there was no change in neuropeptide Y or substance P. Calcitonin gene-related peptide levels rose to 110± 7 pmol/l.

Treatment with both oyxgen and subcutaneous sumatriptan reduced the CGRP level to normal, while opiate administration did not alter the peptide levels. These data demonstrate for the first time in vivo human evidence for activation of the trigeminovascular system and the cranial parasympathetic nervous system in an acute attack of cluster headache. Furthermore, it is shown that both oxygen and sumatriptan abort the attacks and terminate activity in the trigeminovascular system."

Source: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Imitrex4Breakfast wrote on Jul 28^th, 2013 at 11:39pm:

"Further evidence that this board is definitely not a democracy and more like a dictatorship, which is so unfortunate." lI4B

I am a little curious where you got the idea that this privately owned board is supposed to be a democracy.

A democracy is where three wolves and a lamb decide what's for dinner. I'd rather live with DJ's rules......

Marc

I hope you recall Chris that I was one of hour biggest supporters early on. The issue I quickly realized was not that people attacked YOU.....but how furious you become towards anyone who dared disagree with you. Opiates work for you....as I told you years ago.....that's great I wish you all the luck and pain free time you can get. Its what we all work towards.

Understand this....and i know you're reading this as your still obsessed with getting all of us to agree with you....this board will never ill never advocate opiates as a first line treatment for ch. Hoping someday you'll find peace and pain free time in your life.

Joe

Marc, You can follow DJ anywhere you like, that's fine by me. My main point was supposed to be that I thought this board was to HELP sufferers and their supporters. I do see a lot of that going on. But throughout the years (I've been around since 2000), I've also seen MANY people get personally attacked by certain individuals because their beliefs or understandings were different than others. (And I'm not talking about the 'snake oil salesman' neither.)
Marc, don't be fooled by my number of posts, I bet I've been here longer than you have and I've seen, read, and posted more than you. Follow who you want. I'm not a follower. But I didn't break any rules neither (by personally attacking members or guests)

Imitrex4Breakfast (formerly "Unsolved")

Marc did this as a service to ch.com.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Since this seems to have turned into a I been here longer than you
dick measurin contest I ask what have you done?

            Potter

I4B, I recall the era on this board that you speak of, it's why DJ appointed moderators, and established rules of conduct. I'm one of those who works very hard to read every post on this board, to delete snake oil salesman, lock down people who get out of line, and make sure no one is chased off. Rest assured I read more posts then you do! It's my job.

Unlike you and many others, I never left the board. When things went sideways, I worked hard to help right the ship. Always following the philosophy, "Take the good the board has to offer, and ignore the rest." This board is far too valuable to stomp away in a huff because of some real or imagined slight.

The individual who started this thread is insanely obsessive about the world agreeing with him. I answered his original posts, commenting that his pain free time was awesome, it's what we all hope for, and repeating my belief that while an incredibly small percentage of people do get help from opiates, for the vast majority the risks FAR outweigh the benefits. That was enough to set him off! Now he's over on the facebook CH pages whining that no one likes him, everyone hates him. And I know he'll read this because his compulsive behavior is absolutely comical!  ;D

If you are attacked, or you see any post which appears to violate the code of conduct, shoot me a PM. I'll lock and hide a violating post so fast it'll make your head spin! ;) I think of the thousands of lives recovered by this website, literally lives saved, and it makes the occasional pain in the ass more then tolerable. So yeah.....you can label me as a "DJ FOLLOWER" too.

Joe

Circle the wagons boys, ready-aim-fire!  wtf?  I'm in shock that so many of you that I respect are being so hypocritical.  All of you are intelligent, caring individuals.  I don't quite get why these threads occur.  This isn't the first one. I know it won't be the last.  It takes all kinds to make the world go 'round.  Sad that people feel like they have to leave.  Stop with the bullying tactics, how ever warranted you may feel about them.  It's unpleasant and unneeded.  This is just really sad...the whole damn thing.  I'm not taking sides here, just some level of decency would be nice.  I've watched enough threads to know better than to post much.  All of you all...really!  Come on now.  Deej...much love and respect for you and this board. 

Hey Vickle....tell Zac I said hi! ;D ;D

Joe

Guiseppi wrote on Jul 31^st, 2013 at 11:03pm:

Hey Vickle....tell Zac I said hi! ;D ;D Joe

You truly don't have to be a former cop to figure that one out.  8-)

-Gregg in Las Vegas

Maybe I was misunderstood because I am in no way anti-DJ. I thank DJ very much for creating this board. I remember the 2 boards before this one!  I just think that (at that time) the rules applied to newbies and the like, but not to some of the others. I won't name names, so lets call this guy "Jonny the jackbutt" the pirate flag waver. He did nothing but be-little me over and over and over and say BS that was not true. I was forced to quit working back then because of relentless chronic clusters and with a family to support, I had no choice but to apply for disability (GSK required me to at least apply for disability). It was the only way I would be able to get the Imitrex I was requiring at the time. Well, this Jonny the Jackbutt did not like that at all and he went off over it! I think it's great if he was able to continue to work, drink beer everyday, all while having clusters. ?./././ ok?! He sure was nice to me face-to-face at NASHCON 04' though. (He didn't become an arse until after NASHCON) Probably because I towered over him. He's a lot bigger & much tougher behind a keyboard. He coerced his 'friends' into joining his anti-UNsolved terror campaign to rid the board of me, despite the knowledge I have about clusters, doctors, clinics, medications, and treatments. Nothing else mattered to them then because I was on disability. I guess that made me seem to weak to be a member of the board or maybe too weak to have clusters at all, IDK.Apparently disability was a BIG NO-NO back then. I'm not sure how the board collectively stands on the disability issue now. There's still at least 1 member here that I've only seen chime in on a few posts and it has been nothing but negativity out him so far too (but not towards me), but I haven't said anything to him. If the moderators on this board do not see him do it, or choose to turn a blind eye, there's nothing I can do. Personally I think he's going to chase away some people that really do need help and possibly would've found that help right here ... if they had a chance to stay.
And yes, I was there when "Chuck's Attack" was filmed in Vanderbuilt-Tennessee by Justin D. Ott. I'm also in that "Clusterheads" documentary Justin did. I was interviewed across from the hotel in that park. It was about a 10 minute interview all together. (Not sure what he edited). That was the first time I had ever met another clusterhead and I believe there were approximately 80 clusterheads there. It was an experience to actually KNOW for the first time that I'm NOT suffering alone and that there really were others with this horrific beast that did understand for a change ! People I believed really knew how I felt at times ! It was an eye-opening experience to say the least.

I4B

Lol Joe.  If I talk to him I will.  Why can't you? 
I sincerely appreciate all of you.  But it was getting tiring reading all that stuff...don't you agree?
It has not really anything to do with Zac.  Seemed like a big old pissing contest. 
No offense intended.
Cheers Joe.  Pfw's to you.
p.s.  I thought by reading it, that he was banned or quit.  I just looked and can't find him on here.  So now I'm confused.

I4B,
Many people shared your views about him, but I liked Jonny. 

-Gregg in Las Vegas

You know, I can't speak for the "bad ol' days," I've only been here since 2010. I can speak for my own experience and the reason I've given so many volunteer hours to this site: I believe it literally saved my life. I am, and was, a chronic with intractable CHs for over 30 years. Here I found advice on how to manage abortives and preventatives. I have a life in between pain, something I did not have before.

Yes, I've seen some who come and go. Even those who feel they've been mistreated. But Joe is right. Those who complain the loudest are often the ones who have offended the most. Take Zac. There was no reason for the vitriolic post except to emotionally vomit all over every one. Sure it made him feel somewhat better, vomiting usually does. But it invites all sorts of interesting responses which was really his intent.

I4B, I'm not sure why you want to bring up a sordid past with the site. You came back and in doing so, you indicate a measure of satisfaction with the board. I have enjoyed your posts, until this round. Let it go. Continue with the support and viewpoints I have come to know from you.

I would give much for those here. I have said in the past I feel closer to most of you than I feel to those who wonder if I have finally gotten over those headache things. So that's my input. God bless all of you. lance

I appreciate and support Vickie for her comments in posts 23 & 27.

It doesn't foster the purposes of this site to walk around in the "cow pies".

Bob Johnson wrote on Aug 1^st, 2013 at 9:00am:

I appreciate and support Vickie for her comments in posts 23 & 27. It doesn't foster the purposes of this site to walk around in the "cow pies".

The shits been stepped in.  This is the gettin it off yer boots without gettin it onya stage.

              Potter

"Take your life in our own hands, and what happens?
A terrible thing: no one to blame."

                             -Erica Jong

Bob Johnson wrote on Aug 1^st, 2013 at 9:00am:

I appreciate and support Vickie for her comments in posts 23 & 27. It doesn't foster the purposes of this site to walk around in the "cow pies".

I know Bob...I apologize for my part, I do know better...this lad just got my goat! I'll go back to doing what this board was meant for and ignore those that doth annoy me.  I promise I'm done. ;)

Joe

Joe

I think its great to know what works for you when nothing else did. Someone is giong to need that information, your probably not the only person that has or will go that route to get the relief they need. Its a valid medication for a horriffic condition ! and I thank you for the information.

It would seem to me Zac achieved what he came here for.
"Not help" but to open up old wounds. [smiley=troll.gif].

Hoppy.

I'm surprised this thread was not closed, a lot of the responses after the OP's really don't want me to stick around as someone new... I've always appreciated the privacy I had with my medical history, never thought I'd share some of it on the internet and I'm sure I'll never share all of it. I don't know what this young man has been through... I don't see why people have to attack him but for there own enjoyment. Its disgusting on a website that suppose to help. I'm not sure the dark days are behind here, you're just convinced your in the light. I don't see many people taking the high road... everybody here has been shit on in life in some way with CH, why shit on each other.

All CHers have bad days, but when you have a good day, it might be best to make amends.

HeadVise,

I would respectfully suggest that you spend some time reading some of the thousands of posts on this site, before insulting a lot of people. Once you have a better feel for this place, you just may see the massive benefit that it has provided since before I became a member in the late 90's. You have idea of how much goes on behind the scenes.

The people who have chosen to stick around have been the recipients of the vast and leading edge knowledge that has been spawned here.

It's a bit like life. Some good, some not so good. If a person demands glossy, unrealistic, pats on the head, they will feel insulted now and then - but then they will miss the benefits. 

If you feel highly insulted by my comments, and want to run away screaming - I can't help it. I am simply being honest, like most people here. 

Respectfully,
Marc Kurth
Bastrop, TX

My mother would, too often, make some snotty, cutting, our just plain stupid comment to someone. If she was called on the crack, the stock replly was, "I was just being honest!"

The response was her "perfect" protection against  being aware of the quality, appropriateness, or harm of her comment.

She could never grasp that her self-deception was a greater sin than the other person's "bad" behavior.

Quote:

I must point out specifically what a problem Potter was when I was on this site regularly. He almost single-handedly drove me away from this site

Now that's funny!!!!

The OP is pretty much dead dick right on.  Remain in denial, but people don't participate, and don't revisit because of the 6th grade "click" mentality that the board often portrays.   Now watch.......10 of you will Cut in Paste me n tell me how silly I am .....



come on.....   you know you want to ....

Quote:

Now watch.......10 of you will Cut in Paste me n tell me how silly I am ....

You are so silly.

That's 1.

Now watch.......10 of you will Cut in Paste me n tell me how silly I am .....

Me no comprendy. [smiley=me&mb.gif]

JHK07,

If I read you right, you were commenting about negativity, attacks and argumentative posts. Then you slapped people and challenged them to call you silly. 

Please help me understand how you see your post as helpful, above the fray and constructive. Sure, improvements can always be made, but I am left wondering about your motives.

Marc

This is so sad that after visiting this site for over 7 years and suffering CH since 03 I will not be returning. You all blow me away. This guy Zacsz is in as much pain as the rest of us, says he has tried everything and you condemn him for using opiates/narcotics!  Big damn deal! If it works for him that is his business and his road to hoe. Plenty of people have heart attacks and strokes from overusing triptans and give me a freaking break regarding the damn mushrooms, that just isn't for everyone. No wonder he feels angry, withdrawn and hurt.  This is in no way a support site!  :-/

ma56 wrote on Sep 15^th, 2013 at 4:15pm:

This is so sad that after visiting this site for over 7 years and suffering CH since 03 I will not be returning. You all blow me away. This guy Zacsz is in as much pain as the rest of us, says he has tried everything and you condemn him for using opiates/narcotics!  Big damn deal! If it works for him that is his business and his road to hoe. Plenty of people have heart attacks and strokes from overusing triptans and give me a freaking break regarding the damn mushrooms, that just isn't for everyone. No wonder he feels angry, withdrawn and hurt.  This is in no way a support site!  :-/

[smiley=wave.gif]

Hi All,
I thought this thread was dead and buried.

Hoppy.

From the OP's post, I can imagine the back and forth that went on, putting him down for his and his doc's choice of treatment. And this thread seems to be more of a list of excuses to keep doing that; to him and others.

I4B - Hey UnSolved. So glad to see you! I missed you after you left (was driven off) the board. I've thought of you a lot, and hoped you were doing well. I hoped you would come back. I've been gone for awhile myself. Unfortunately, the person who drove you off continued to constantly harass and bully others until DJ finally banned him for life. Funny how the board changed for the better when that happened.

Joe:
Quote:

Unlike you and many others, I never left the board. When things went sideways, I worked hard to help right the ship. Always following the philosophy, "Take the good the board has to offer, and ignore the rest." This board is far too valuable to stomp away in a huff because of some real or imagined slight.

As you said Joe, you were here when DJ changed the board, appointed you a mod, and created actual rules. However, when I4B was driven off the board, I'm not sure if you saw what led up to the final straw. Jonny was forced by DJ to apologize to UnSolved, after several incredibly cruel posts to him, which Jonny did, then Jonny started up again immediately. I4B didn't leave in a huff, he left because he couldn't get the support he needed here, without being cruelly harassed and bullied. There's a difference. And he desperately needed the support.

I don't know zac, but it appears a few people have allowed their buttons to be pushed by him, and they have reacted. And Joe's quote: "Take the good the board has to offer, and ignore the rest." seems like good advice.

It's your choice to react or not. Quoting Goadsby is for what purpose? Newbies posting their worried thoughts about being able to get support from this site.  No one is better than anyone else here. Just different.

I keep hoping this thread will die. I've thought about hiding it and may yet. This board accomplishes so much good every day. So many hundreds of people are given a second chance at life because of this board. But, like the media, we tend to obsess on the occasional problem, and ignore the hundreds of successes.

My suggestion:

Do NOT respond to this post for any reason.

If you are tempted to respond to this post, instead, find another post where someone needs help...and help them.

That's the true purpose of this board.

Joe