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.

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.

Have you ever explored your headches with this perspective?

Link to: cluster-LIKE headache:

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

Quote:

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.

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

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.

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.

Quote:


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

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

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


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

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")

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! 

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

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

Joe