I am forty-two years old and have had episodic clusters for twenty-eight years.  I am in the middle of my worst cycle yet and nothing that we are trying is working, and I am beginning to despair like I have never done before.  We keep switching medications and they keep breaking though.  Nothing is working to knock out the cycle.  I just started a new prednisone burst (the second one in the same cycle) to try to get some temporary relief while I am switching my other medications, but just had a cluster punch through the prednisone anyway, and that just about made a grown man cry.

I have had to stop exercising since that is triggering headaches, so all the triptans that I take are probably going to kill me anyway.  I have pumped as many drugs into my system in the past month as I can remember and it is not getting me anywhere.  Unfortunately, the lack of exercise is weakening me physically and mentally, and combined with the medications and the drain from clusters I am falling apart worse than I ever have before.

I do have a loving wife and family, but as I am sure that you all know there is nothing that they can really do to help.  They are suffering in their own way and I make them feel any better either.  My wife runs marathons and she had one out of town over Mother's Day weekend that I actually begged her to go to without me.  I wanted her to be able to do something for herself without seeing me suffer all weekend.  (As it turned out, I had one of my worst weekends ever, with eight headaches in a sixteen hour period the one night, and then I ended up driving myself to the emergency room on Mother's Day.)

I am not asking for advice or suggestions for treatments.  In twenty-eight years, I have taken just about every possible combination of medications that have been prescribed for clusters.  (That is one of the problems -- my body has built up a resistance to just about everything.)  And I know that there are plenty of others who are worse off than me.  At least I am not chronic.   But I am as low as I have been and I am getting lower by the minute.  I hate myself for all the self-pity I just typed into this message (not to mention blatant solipsism.)

So I am not sure why I am posting this, other than to vent.  I am very, very tired right now.  I combine all this with a very demanding job that can involve up to 12 hour days (as it did today and yesterday.)  One of the medications that I switched to yesterday was one that I have not taken in about ten years, and it worked back then, but with the clusters breaking through the predisone burst I am afraid to even go to bed tonight -- so I will probably be even more tired tomorrow . . .

Have you tried oxygen?

     Potter

Iago wrote on May 18^th, 2010 at 9:52pm:

I am not asking for advice or suggestions for treatments.

Dang that's too bad because it sounds like you could sure use some. Heck I'm going to offer some anyway.  :)

It kinda sounds like you're just doing what the doc tells you.....ouch ow McOuchity ouch ouch. Now there's a prescription for a whole lotta pain.

Have you checked out the newer, much more effective method for administering O2? This can be found at the oxygen info link on the left of this web page.

All the triptans that you take are going to kill you huh? Are you aware of the "imitrex tip" that can help prevent that from happening? Here's the link if you haven't seen it yet:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Have you seen this article in Newsweek that covers some members of this forum and the forum at clusterbusters.com, and their powerful approach to CH prevention?

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

And that's just for starters - man yer getting advice whether you want it or not - hope you read it.

All of us truly understand the tiredness and feelings of desperation at times.   THAT is why we are here.  To help you in any way we can.  Togehter, we probably have 10000000's of years of exp[erience in dealing with this condition.

Potter said try 02....This is our number one abortive and has been a life-saver.  Over on the left is a yellow link about oxygen..Please read it and if you have any questions there is always someone here to answer them.

You are no longer alone.

We feel for you.

Now, see, that is precisely why I said that I have had clusters for twenty-eight years and do not need suggestions for treatments as I have tried all of them.  Of course I have tried oxygen -- more than once.  It does not work for me.  The first time that I tried was two decades ago when I still got only one or two headaches a day.  Now I get a headache every two hours, so not only is oxygen ineffective, but it is impractical as well.

Th frequency of my headaches causes my problems with Imitrex as well.  I am quite aware of what you call the "Imitrex tip" and have probably been doing it for much longer than most of you.  Not only have I used Imitrex since it was first available, but I have never used an auto-injector.  My old neurologist at the Headache Institute in Minneapolis was part of the clinical trials for the drug and was very familiar with the effective doses during the trials, and he suggested drawing a half dose to stretch it out -- this was long before that information had spread out to the cluster "community" (or indeed before there was one to speak of.)  In other words, I have been giving myself half doses since the day the drug was available.  But even with that, eight or more headaches a day still puts me well over a safe amount of the drug, and way, way over what any insurance company will cover.

Amerge has proven something of a stopgap in the last few years, in that while it is useless in aborting headaches, it does have a sustained effect that prevents the next few headaches.  So if I time when I take one carefully, it can get me through the night without a headache, and then I can use imitrex to abort any that I get during the day.  But let us face it, triptans in general are not healthy taken for extended periods of time, especially when combined with a lack of exercise.

The fact is abortives are still only temporary solutions, and that we need to find a combination of medications that will knock out the whole cycle.  And we are trying.  I do not appreciate the condescension from the poster who said that it sounded like I was just "doing what the doctor said" despite the fact that I very carefully kept using the plural pronoun "we" when referring to treatment.  I know what works for me and what does not, what has worked and what has not, and would not be alive today if I was not a very strong-willed and stubborn person.  But as I am sure you know, these things change, and what works the one time may not work again.  They also get stonger over time.  I cannot write prescriptions myself, so I have to work with my neurologist to find solutions.  And, by the way, in twenty-eight years it is not unusual for the first one not to work.  This cycle has been tough in that we are on the third try, and may have to go to the fourth.  (My neurologist, by the way, recognizes that and says that he always listens to his cluster patients because they know more about what works for themselves than he does.  So we sat down, went through what we had tried in the past, weighed the pros and cons, and came up with plans.)

I know that you are trying to be helpful and I am trying to appreciate that, but I would think that when someone tells you that they have had clusters for twenty-eight years and that they are in a state of despair, and they specifically tell you that they have run the gamut of treatments, it would raise warning flags not to offer such basic advice (especially after they said that they were not looking for advice.)  And I would really think that people on a cluster headache site would think twice before insulting someone who has had headaches for twenty-eight years and is posting for their first time, but I guess not.

Outside of my immediate family and some close friends, I struggle with getting people to understand what I go through.  I struggle with hearing useless advice.  (Yes, I have been to a chiropracter.  And, by the way, I have tried other alternative treatments such as the "water" treatment, which also did not work.  The bottom line is that all that has EVER worked to knock out a cycle for me is combination of two different classes of medictions, such as a calcium channel blocker with an antidepressant, antisiezure, MOA inhibitor or the like.)

I am still not sure why I posted here for the first time after all these years.  Maybe I was hoping to get some simple understanding.  Thank you Katherinecm for giving it.

I don't know why you posted either. Several very knowledgeable people explained they understand your pain, and suggested alternatives to try. Your attitude of "I already know everything, I've been doing this longer then anybody, stop trying to help me" is certainly not a recipe for relief.

We remain dedicated to helping you in any way we can. It's why most of us are here. Might help to decompress a little bit, and give us a better idea of what it is you want/need from us.

Hoping you get a break soon. Headaches suck.

Joe

Iago,
I am sorry that you are having a horrible time, but no need to bite the hand that is offered for support..  Everyone here is sympathetic with you, BUT, people have found out over time that when someone says, "I have tried everything", that statement is not always accurate.  As to trying O2, again, eople will say they have tried it and it didn't work.  Then, when questions are asked, *we* find out that the flow was not high enough, using the wrong mask, etc.

As to someone being condescending, you're reading far too much into what Bejeeber said (problem with the internet, you can't hear tones and inflections). Again, there are people who have had ch for a lifetime and are doing what their doctors recommended, they come on here, and find a whole new world of things to try.

Iago wrote on May 19^th, 2010 at 6:25am:

Now, see, that is precisely why I said that I have had clusters for twenty-eight years and do not need suggestions for treatments as I have tried all of them.  Of course I have tried oxygen -- more than once.  It does not work for me.  The first time that I tried was two decades ago when I still got only one or two headaches a day.  Now I get a headache every two hours, so not only is oxygen ineffective, but it is impractical as well. Th frequency of my headaches causes my problems with Imitrex as well.  I am quite aware of what you call the "Imitrex tip" and have probably been doing it for much longer than most of you.  Not only have I used Imitrex since it was first available, but I have never used an auto-injector.  My old neurologist at the Headache Institute in Minneapolis was part of the clinical trials for the drug and was very familiar with the effective doses during the trials, and he suggested drawing a half dose to stretch it out -- this was long before that information had spread out to the cluster "community" (or indeed before there was one to speak of.)  In other words, I have been giving myself half doses since the day the drug was available.  But even with that, eight or more headaches a day still puts me well over a safe amount of the drug, and way, way over what any insurance company will cover. Amerge has proven something of a stopgap in the last few years, in that while it is useless in aborting headaches, it does have a sustained effect that prevents the next few headaches.  So if I time when I take one carefully, it can get me through the night without a headache, and then I can use imitrex to abort any that I get during the day.  But let us face it, triptans in general are not healthy taken for extended periods of time, especially when combined with a lack of exercise. The fact is abortives are still only temporary solutions, and that we need to find a combination of medications that will knock out the whole cycle.  And we are trying.  I do not appreciate the condescension from the poster who said that it sounded like I was just "doing what the doctor said" despite the fact that I very carefully kept using the plural pronoun "we" when referring to treatment.  I know what works for me and what does not, what has worked and what has not, and would not be alive today if I was not a very strong-willed and stubborn person.  But as I am sure you know, these things change, and what works the one time may not work again.  They also get stonger over time.  I cannot write prescriptions myself, so I have to work with my neurologist to find solutions.  And, by the way, in twenty-eight years it is not unusual for the first one not to work.  This cycle has been tough in that we are on the third try, and may have to go to the fourth.  (My neurologist, by the way, recognizes that and says that he always listens to his cluster patients because they know more about what works for themselves than he does.  So we sat down, went through what we had tried in the past, weighed the pros and cons, and came up with plans.) I know that you are trying to be helpful and I am trying to appreciate that, but I would think that when someone tells you that they have had clusters for twenty-eight years and that they are in a state of despair, and they specifically tell you that they have run the gamut of treatments, it would raise warning flags not to offer such basic advice (especially after they said that they were not looking for advice.)  And I would really think that people on a cluster headache site would think twice before insulting someone who has had headaches for twenty-eight years and is posting for their first time, but I guess not. Outside of my immediate family and some close friends, I struggle with getting people to understand what I go through.  I struggle with hearing useless advice.  (Yes, I have been to a chiropracter.  And, by the way, I have tried other alternative treatments such as the "water" treatment, which also did not work.  The bottom line is that all that has EVER worked to knock out a cycle for me is combination of two different classes of medictions, such as a calcium channel blocker with an antidepressant, antisiezure, MOA inhibitor or the like.) I am still not sure why I posted here for the first time after all these years.  Maybe I was hoping to get some simple understanding.  Thank you Katherinecm for giving it.

  So basically you came here looking for an ass kissin.

               Potter

Iago,

We have all been to the edge of the precipice that is desperation during cycles so we DO know how you feel - lashing out at the good folks on here won't make the headaches go away.  The key, as you well know, is to not let this disorder win.  Stay strong, stay stubborn and best of luck.

Iago,
Sorry your having such a tough time! I and ALL of these fine peep's are here for support in any way someone allow's! Like it was said before! This is a support group with AMAZING people that I just met back in December and it saved my life! All our stories may be different, but we all have the common denomitor "CLUSTER HEADACHES" ! :-/ About people not understanding what you "want from this site" just (in my opinion0 be open to whatever these fine people have to give my friend! Your story may be more intense than some , but the devastation of the disease we ALL know :(! Again I wish you some peace and hope you stick around! WHO know's this palce might open some possibilties to opening some new door's! All the best my friend!
Anthony

Iago wrote on May 19^th, 2010 at 6:25am:

Of course I have tried oxygen -- more than once.  It does not work for me.  The first time that I tried was two decades ago when I still got only one or two headaches a day.

See, the problem people are having with your "know it all" attitude Iago is that two decades ago people weren't using oxygen at 15-30 lpm with fancy new masks, which means you haven't tried everything.

Recent studies referenced here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE prove that high-flow oxygen with a proper delivery system is VERY effective aborting CH's within 15 minutes (effective as in 78% of patients).

If you're willing to put together a preventative plan revisiting preventative treatments (as you so proudly suggest), might it behoove you to try a new version of oxygen abortive therapy?

DJ

I too have had CH for many years.  29 to be exact.  I went it alone for 27 of them.  I have learned more than I could have ever dreamed in the two years since my husband found this place for me.   Please don't be so quick to dismiss advice or ideas from the wonderful, understanding people here.  We DO understand and are all here to listen if that's all you need from us.  My guess is that you need more though, since you are in such a dark place.  Somewhere, somehow there IS a method to treating your condition.  It's just different for all of us.

There are alternative ways of treating CH that might be worth checking out.

Jeannie

I think we all understand what you are going though BUT you are incredibly foolish if you aren't willing to read the suggestions here.  You may have tried MANY things, but I guarantee you haven't tried ALL of them:

Oxygen therapy has changed a bunch.  When I upped the flow with a quality mask, it made a big difference. 

While imitrex wasn't working well, Maxalt MLT worked decently for me.

I had not tried energy drinks (with taurine) until recently.

Zyprexa (my last line of defense) is batting 1.000 in knocking out HAs.

The common thread between all these were that I read about them here and only started on them because of people's advice from THIS SITE.  My doctors, including a headache specialist, were trying everything they could but these were found here!

You want sympathy..... fine.... I feel bad for you.

Now, don't give up and keep trying!!!!!!!

iago, judging from what you've posted i'd say your tired, frustrated, and probably scared. you probably haven't slept in a week or so, you work your ass off and get attacked all day long, theres a huge pile of shit piling up on your back and due to the lack of sleep your at wits end and extremely irritable.  i've been there.

i'm wondering if in desperation you are over doing your meds cuz your pissed off and not getting any kind of relief and your sanity is dwindling. everything you've tried has failed and you still get stabbed in the face every couple of hours. maybe you come down from a screamer, regain composure just to escalate 
back to another screamer in 15 or 20 minutes. if that doesn't drive you bat shit crazy i don't know what will. the worst thing about being episodic is your never prepared.  things that worked in previous cycles don't work now and for the most part you try to pretend that what ever kind of hell you just went through  is behind you and you'll never have to go through it again. after 20 some odd years you've excepted the fact that this will happen again. it took me a while to come to terms with that. i know how you feel and i know it fuckin sucks

check your PMs iago

Hi Iago,

Glad to have you here and sorry that you're in such distress. I hope you're comfortable using this site as a place to vent if you've found that to be a way for you to relieve that distress. If you consider your plan of attack to be the most effective available to you and the doctor(s) treating you to be both knowledgeable and supportive, well then, more power to you.

You're clearly very knowledgeable about your disease and treatment options. Most of us here knew far less when we found this site, and, like recent converts of any sort, are anxious to share the good news. If for nothing else than as a diversion for you, if you'd be willing to share some of that knowledge with others here, you'd be much appreciated.

A lot of us were disparate to the point of suicide before finding this site. The support and the depth of information we found here has been a godsend. Most just want to help.

No one appreciates "magic cures" thrown in their faces, especially when suffering something like CH. The same goes with any sort of "joking around" while we're in pain. This is a terrible affliction. Everyone here is intimately aware of that.

My son Michael's case was very much like yours; nothing worked, and we also tried everything offered, many things over and over, in combination after combination. He ended up with an addiction to narcotics; the only thing other than an induced coma and a week in the ICU that provided any relief at all.

Then, a little over a year ago, I read an article in the journal "Neurology" about some promising work being done at Harvard using sub-hallucinogenic doses of psychedelics in the treatment of CH. Being desperate, we tried it and Michael had 5 full days of complete relief after a single dose. The first break in his pain (other than the induced coma) in almost 4 years. We have since become amateur mycologists and are now able to keep him completely free of pain with small, weekly doses of psilocybe mushrooms.

I get the legal problems associated with going this route. I also get that any medical problems associated with doses this small are myths; the last I heard, it would take eating your body weight in mushrooms to do any substantial harm. I also know that the percentage of CH sufferers benefitting from their use is somewhere around 80%. It works for my son - and thousands like him! It is most certainly worth looking into.

Please, please read the Newsweek article bejeeber mentions in his post and spend a few minutes on the sister site to this one, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, which is devoted to alternative CH treatments. The only possible loss would be the time you spend reading and the time I spent writing.

Thank you for reading,

Ron

Quote:

the last I heard, it would take eating your body weight in mushrooms to do any substantial harm

The last I heard, eating your body weight of ANYTHING would pretty much do you in before you could finish. ;)

Brew wrote on May 19^th, 2010 at 5:36pm:

Quote: the last I heard, it would take eating your body weight in mushrooms to do any substantial harm The last I heard, eating your body weight of ANYTHING would pretty much do you in before you could finish. ;)

Except chocolate... ;)

im a newbie to this site and in the 5 hours iv spend on it the advice aloan has helped me
before i came on this fab site i found out that stress could "awake the beast" within me
so i try to stay calm at all times (really hard with 3 kids) and if i was working 12 hour shifts at work it would be an impossible task to stay calm
the 1st thing i would do if i was in your boots is to stop working such long hours, go on holiday (vacation) for a year, your health is more important than anything

all the best m8 an keep ya chin up

Iago. I forgot to mention a topic on this forum, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, which has been read and responded to more than any other. Please read what you will of it. Thanks. Ron

Hey Iago,

Would you consider advice from someone who...

• Has had CH for more years than you?
  

• Used to flail around with very hit or miss treatments, strictly "working with a doctor", as you are now?
  

• Found much more consistent relief after considering the sort of advice and ideas from CH vets here that you won't get from a doctor?
  

I believe I have described not just myself, but a few of the other responders here who you are telling not to offer any advice. I don't know about them, but for me your 28 years doesn't exactly inspire the shock and awe that you might think it does. 28 years - Join the frikkin club, we see it all the time here.

Sorry Iago. I keep thinking of (what I consider to be) important stuff I neglected to mention. I can't imagine that you wouldn't find value in the video included in the following post from the ClusterBuster website:


Suicide or Psychedelics
Apr 29th, 2010 at 12:37am     Bob Wold
Horizons 2009

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


Synopsis

Cluster Headache is not what you usually think of when someone says they have a headache: the pain will wake you up out of your sleep and is so searing painful that people are known to pull out their hair or bang their head against the wall to distract themselves from this pain. Indeed, cluster has been nicknamed “suicide headaches.” You will leave this talk knowing a lot more about cluster headache and the story of how patients just like me came to find in psilocybin and LSD a profound medication that helps more than the medicines we currently can get from our physicians. Clusterbusters is doing something about that: we work closely with Dr. John Halpern of McLean Hospital/Harvard Medical School and are, in fact, sponsoring Dr. Halpern’s clinical project to evaluate psilocybin for people with episodic cluster headache. To bring research with psilocybin to Harvard has been a long and complicated road, but you will learn why it is the most important one to take: many lives depend on it and we want to count on your support. Over the past year, our work has expanded to include the addition of a new and very exciting direct offshoot of our psilocybin work. This successful study featuring breakthough treatment results will be announced at this conference

Biography

Bob Wold is founder and President of Clusterbusters, Inc., a 501c3 non-profit charitable organization dedicated to the research of cluster headache and to support people with cluster headache and their families. Based in greater Chicago with his wife and 4 children, Mr. Wold has talked to 1000s of cluster sufferers. In fact, over 25 years of his adult life was burdened with severe cluster headache that was resistant to all standard treatments. That all changed after he tried psilocybin, which has helped regain control over this illness for him… and now hundreds to perhaps thousands of other cluster headache patients all over the world. He and Clusterbusters are currently involved in persuing the approvals for the clinical research required to allow these much needed treatments to become available to everyone. Treatments that far exceed anything currently available through conventional medicine. Treatments that can eliminate the suicide option that far too many people still choose.


shocked

i've had pretty good luck with clusterbusting.

I am going to suggest that all of you take something that you appear to be only able to give: advice.  And I am going to try to do so in as constructive a fashion as possible.

This is supposed to be as forum to support cluster headache suffers.  Support is a multifaceted term which may include giving advice, but it is NOT synonymous with the word advice.  Support includes propping people up.  Support includes providing comfort.  Support includes giving a kind word.  Support includes giving sympathy.  Most importantly, support includes LISTENING to determine what a person really needs.  In print, of course, listening is somewhat metaphorical, but by reading attentively and putting some thought into what a person has typed you have to make your best determination what they are asking for.  Sometimes, of course you do need to read "between the lines," but even so you must exercise caution.  You may be reading your own experiences into something that are quite different than what the poster intended.

The biggest problem with asking for support is that the most basic human desire is to give advice.  We would rather let people starve sometimes as long as we can offer our opinion to them on why they are starving.  I found it ironic that one of the moderators actually quoted my comment that I was not looking for advice and then told me "then why are you here?"  Think about that for a minute.  People actually have the gall to claim that I am a know-it-all, which I am not.  (I am just having to defend myself, which I never wanted to have to do, and I apologize for that. )  However, I am being told that unless I am coming here for advice, I should never have come at all.  If this is not really a support forum, but rather only a forum where you give advice, then that would make YOU the know-it-alls!  But while a person may have never visited the forums before, that does not mean that they have no experience to contribute.

I know that part of the reason why the incessant advice-giving bothers me is that of course I have been guilty of doing the same thing in the past, but I have tried to improve that personal fault.  It is true that we are always bothered by things of which we are personally guilty.  But being in the middle of a cluster cycle also means two things: one, that people are giving me incessant advice right now; and two, that I am extraordinarily irritable right now (something that a cluster headache site of all places should understand!)

Of course, an apt word of advice given at the right time can be a life-saver; I know that you all do have a wealth of experience, and I am not belittling that.  When I do want some specific suggestions and advice I will ask for it, because I am sure that you can offer some great ideas.  But I will not do so without posting a very detailed medical history, because you all keep making assumptions that are not helpful.  (For  example, I have tried oxygen more recently, and no it still does not work, and no, given a choice between having to abort eight headaches a day for four or more months or simply finding the right combo of prophylactics that will stop ALL of the headaches within a week or two, I will pick the latter!)  So again, yes I do understand that you all have a great deal of experience, and I do appreciate that.  But you need to know someone's history to offer constructive help.

However, that raises one other major piece of advice that I have to offer that I am going to try to put as gently as possible.  I am not belittling your experience despite the fact that you keep belittling mine, sometimes quite rudely. That is the single most common problem with all internet "communities," and while I had hoped yours would be different, clearly it is not.  So here is something that I hope that you take to heart, because your mission is too important: never, NEVER assume that just because someone has not previously posted in your forums that they are so-called "newbies."

I hate that term and all internet jargon in general, and that is the ONLY damned reason why I made the point that I have had the headaches for twenty-eight years: not because I am a know-it-all, or more experienced than anyone else, but because I wanted you to know that I am not a first-time sufferer (without using the stupid word "newbie.")  You do not have clusters for three decades without having been through a thing or two.  But it is an unwritten rule that if you are posting for the first time to any internet community, everyone there will treat you like you have no idea what you are talking about.  (If someone posted to a diabetes support site for the first time and said that they had diabetes for thirty years, they would probably get a hundred replies asking if they had tried insulin yet.)

You will probably not see it this way, but I am offering you an outsider's perspective, and you can take it or reject it as you will.  I have reread all of the replies on this thread, and while of course there are many kind words and sympathy, if you look at the attempts to offer advice there is an occasional tone of superiority and condescension -- some of it really insulting.   It is really no different than how an outsider would be treated on any other forums such as the  AVS forums (which despite being an ardent audiophile I hate with a passion.)  I do not think it is intentional snubbing; it is just the nature of the internet.  But it is unfortunate in this case, given your mission.



To sum up, I posted here last night because I was hitting a twenty-eight year low.  I had never posted on this forums before, but I made it clear in my post that I was a veteran sufferer, not looking for advice or suggestions, not even sure why I was posting, maybe just to vent.

Clearly, given that limited information, the best thing to do would have been to offered some words of support.  (Thanks to those who did!)  The statement about not wanting advice should have raised warning flags.  All that you needed to do was tell me that you were there if I needed you.  Tell me that you understood.  Tell me that I could vent here anytime if it helps.  Ask me what I needed.  (Whoa -- there is a concept -- asking questions!)  For those who clearly, clearly cannot take two breaths without offering advice, here is a suggestion for how to do it with someone who has specifically asked you not to give it: "We are here to help you any way that we can.  If you need anything, let us know.  It sounds like you've been around the block, but if you want to talk brainstorm treatments with any of us just let us know.  We've been around the block too!"

How has my experience been so far?  Not like that.  While there have been many kind words, it only takes the handful of unkind ones to wipe them out.  The sum total is that I feel worse for having posted here, and I hate feeling like I have to defend myself to a support site.  (Now there is the definition of irony!)

So while I thank those who have offered support and respected my wishes, I will have to leave here for now due to those who may have good intentions, but continue to treat me with a complete lack of respect.  I feel bad enough as it is.  I would trade all of the good intentions in the world for someone who will actually listen and pay attention.  Intentions do not make people feel better -- actions do.

I genuinely hope that you give consideration to my suggestions and that you improve your forums for the sake of all who visit, and I hope that all of you who are currently suffering get relief as soon as possible, and may they never come back for the rest of you!  I wish you all the best and will keep all of you in my prayers.

Thanks for the advice, even though I didn't ask for it.

Sorry we tried to help. You clearly stated you wanted no suggestions. So be it. Stay or leave. It doesn't matter to me.

Well, you're not the first newbie (oops, sorry) we've had who wants to move the furniture around and change the wallpaper, first thing.

Most of the people here are a lot more interested in trying to help than they are in offering sympathy.  I've been over this thread several times, and that's all I can see here.  People trying to help--after you expressed your frustration and despair.  Pity you don't see it that way.

I wish you good luck, and best wishes,

George    

My understanding is that this is a forum for the sharing of information about cluster headaches; how and why we get them and what the current science is as to their resolution. Our new Shakespearean friend apparently knows all that and is instead looking for a shoulder to cry on; someone who understands his plight and the depth of his suffering. Well, I've got news for him. This isn't a tea party where everyone sits around with rheumy eyes, patting each others shoulders and saying how sorry we are for each others sad states of affairs. Most people here are in the same f*cking boat and some of their boats are sinking a lot faster than his.

Like most any human being who isn't totally self-obsessed, if I see someone drowning, I reach in and pull him out of the water. I don't ask why he's drowning or if he'd like someone else to save him; how much he knows about others who have drowned or even if he knows how to swim. I don't even offer him sympathy. I just pull him out of the water. His history and the specifics of his particular circumstance don't really matter until the immediate problem of his life or death has been resolved. Iago wasn't clear why he came here - even to himself. He came off like he had reached the end of his rope; that he was drowning and asking for help. I read all the posts. No one asked anything of him. No one forced anything on him. Everyone was just trying to pull him out of the water, offering suggestions about things that he didn't mention having tried, that had worked for them. Having cluster headaches isn't the worst of his problems.

Iago, if you happen to come back and read this, please know that I sincerely hope that you find your way out of this Hell, and soon. There are many of us there with you, also looking for a way out. We only differ from you in feeling that by sharing what we've learned with each other we can find our way out faster. If you ever decide to return, you'll be welcomed and you'll find us eager to share what we've learned with you.

I think I'm gonna cry.

Offers brew a kleenex.

[Sniff...sniff] Thanks, sister.

AMEN! Brew i hate it when u have sniffles ;D :D

Iago:  Bottom line is that you don't know what you want (you said that).  Chances are no matter what people posted, you were going to bite back.  That is what happens to a lot of CHers when the pain gets us to a certain point.

You can take advice 1 of 2 way from this point forward:

1.  You can look at it all, see if there are news things that can help you with your suffering, whether medicine or other things.  Take the information and maybe get some relief.  Take the rest of the support that comes with it.  Life for you gets no worse and possibly much better.  In this scenario, you post more and read more andbecome part of this crazy family and maybe find some real people to give you want you  NEED.

2.  You keep fighting and arguing and get nothing from your posting (or you storm away).  A "whoa is me" thread of pure support aint gonna help you in any way.  Leaving will give you the same NOTHING.

Your call.  Grab an oar and join the crew, fight everyone, or walk.  Good luck any way you choose.

What Jimi said.  I wish I had CH for 28 years and was episodic!  That would give me bout 6 years of my life back, and I'm grateful for all the advice I can get here.  If Iago doesn't want it he doesn't have to take it.  The same door he came in will get him back out.  I hope he will stay, but if he does he will need a serious attitude adjustment.

Jerry

Damnit Bonkers.......I have never heard it said that perfectly clear. Well done sir.

Joe

I guess its time for me to throw out a long overdue thanks to all the people who have offered advice on their experiences and what has worked for them...

!!!!!!!!!!!!!!!!!! THANK YOU ALL !!!!!!!!!!!!

Thanks to you people, I have been treating my CH's for 5+ years now with absolutely ZERO prescriptions, I only use O2 for abortive and mushrooms for prophylaxis! I discovered that I can abort 95% of my HA's with 6-10LPM O2 putting the end of the hose in my mouth (I have a thick beard and non-rebreather doesnt work for me) and letting the tank inflate my lungs. The most important tip I got was from a nice lady named Roxy who informed me that it is most important to force all air out of the lungs and breathe in until completely full and repeating. I use the lower flow rate because I find it forces me to relax (is that irony or oxymoron? hehehe) and concentrate on my breathing and not the pain. And of course Jhonny mule(not here anymore?) suggesting the shrooms for a preventative.

I live on Vancouver Island, so shrooms are not hard to find...I guess I'm lucky that way.

Iago, I realize this group can seem adversarial on certain subjects, but generally are just as miserable with the CH beastly condition as you are, we all go there...but we dont all make it through...I hope you can make it through this very difficult time, I know what you are going through...I am episodic and in week 13, I am near the end and can barely wait for my remission - CH'ing out for 18 years and deperately seeking resolve to this condition that we suffer from. This is the only place I can go where people understand...I have no one near me that has this that I can talk to about it...and none of these not a very nice person doctors take my pain seriously...makes me wanna choke their dumb asses sometimes.
There is good information, good people and good intentions galore on this site...even if you only lurk and read without posting...you will NEVER find a better place with as much information dedicated to our condition.

Good luck and I hope you find resolve wherever you may find it...and if you do find something good, please come back and let us know too...we will ALL appreciate it!

Once again, thanks to ALL of your for you ideas and your support...you have saved my life!!

Best regards,
Mikey-de

mikey-de wrote on May 20^th, 2010 at 8:22pm:

Thanks to you people, I have been treating my CH's for 5+ years now with absolutely ZERO prescriptions, I only use O2 for abortive and mushrooms for prophylaxis! I discovered that I can abort 95% of my HA's with 6-10LPM O2 putting the end of the hose in my mouth (I have a thick beard and non-rebreather doesnt work for me) and letting the tank inflate my lungs.

thats what i do. i don't have a big grizzly beard, i just stand to have anything touch my face. one option you can use if you have a beard or a sensitive face is this START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
this mouth piece allows you to use a reclaimer bag.

the mushrooms seem to have less side effects and they don't tear up your insides. like mikey-de said.  if it weren't for this site would have never connected with mr. Wold nor would i have a place to discuss ideas. i believe mushrooms and o2 work the best for treating this ailment and i would have never learned about this from a doctor. + i'm not dependent on a bunch of expensive drugs that may or may not work.

thanks for the post mikey-de [smiley=wave.gif]

Johnny said:

Quote:

the mushrooms seem to have less side effects and they don't tear up your insides.

I much prefer the side-effects of the shrooms...matter of fact...I quite enjoy the side-effects...heh heh [smiley=slowlaugh.gif] as well as enjoying the pf time during and after dosing! ;D

Sooooo...frigging woohoo!! I just got my new M tank!!! yeeeehawww!!! no more trips to the hospital so no more of the same crap with different damned fools. [smiley=deadhorse1.gif] [smiley=deadhorse1.gif] [smiley=deadhorse2.gif] [smiley=deadhorse3.gif] [smiley=deadhorse3.gif] [smiley=deadhorse2.gif] [smiley=deadhorse4.gif] [smiley=deadhorse1.gif] [smiley=deadhorse2.gif] [smiley=deadhorse3.gif]

I'm stoked AND stocked...figgers, almost done this cycle...lol

PF wishes to you all!

mikey-de

hell yeah.

mikey-de - could you do us a favor and go in and update your "User CP" to reduce or eliminate the line that shows where you're from? it crosses over into the body of each of your posts and obliterates the first few words of one of the lines. look above if you don't see what i'm talking about. thanks.