Have you tried oxygen?

     Potter

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.

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.

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,

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

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: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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 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!!!!!!!

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, Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or , 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

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

Except chocolate...

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

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or


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 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.