Potter wrote on Dec 3^rd, 2008 at 1:54pm:


Potter, do you understand how much comments like this can hurt some people?

Potter wrote on Dec 3^rd, 2008 at 1:54pm:


WTF?????

You doth protest too much methinks.

            Potter

Potter wrote on Dec 4^th, 2008 at 9:39am:


Bestest news I've had in years, Potter.  Because O2 doesn't work for me, I don't have CH at all.  

I have "just a headache"!

Oh, life is roses, strawberries and cream once again and I just hope your medical qualifications are better than your lousy attempt at Shakespeare.

Potter wrote on Dec 3^rd, 2008 at 1:54pm:



Maybe the seventy percent that oxygen does work for never had ch. Maybe they just had a headache?  

Did you ever think about this Potter?

crazyness!

Paul

MITYRARE wrote on Dec 4^th, 2008 at 11:43am:

    Heck no.  But it's very profound.

                Potter

Profound, perhaps, but kindly answer one question or the other.

In all seriousness, I think with these headaches, as with any ailment, most people respond with a treatment protocol, and there are always a certain percentage that do not. Those that do not, may have some physiologicol or biochemical differences from the majority that neccesitate a different course of treatment action, and in the case of CH the trigeminal nerve and all its associated and interconnected neurological systems can be wired differently and act differently in different people.

In my own case, as i have mentioned too many times already, I have Cluster Tic Syndrome (Google for additional info), which is an additional neurologically puzzling phenomenon that goes along with my CH. Patients with this disorder are typically unresponsive to both preventer and abortive medications, and this has been my experience ( i have not use abortives for over 6 years now).

So, in some ways Potter is kinda correct....probably 100% of classic CH with classic traits and physiology and biochemistry and correct neurology react to O2 treatment. That 100% would make up 70% of the total CH population (in my theory here....stick with me folks), and the other 30% of Ch patients would be Potters other people with "just a headache"...however they are really Ch sufferers, but with non typical physiology, biochemistry, and or neurology which makes them more resistant to mainstream therapy protocols, and requiring different medicine "cocktails' to control frequency and level of pain during cluster periods. Pushing O2 does not directly benefit these patients.

Probably not as profound as some would like!
Paul

Kinder my ass Potter

Inferring that a substantial number of people on here don't have CH hurts almost more than the pain.

You should bloody well know Potter, we have trouble enough explaining/excusing/coping with a pain no-one sees and many non-sufferers don't believe without a fellow sufferer on here, who we hope will sympathise, behaving in exactly the same way.

I have been given a bloody rough ride on here on occasions, am fine with it mainly and deserved a proportion, but being accused of NOT having CH and faking is worse than being called a troll and I personally will not tolerate it.

Absolutely sick of you stating it here that 02 failures means someone doesn't have CH and inferring it as well by your "quotations" of "protesting too much" Damn right WE are objecting to your comments.

For me, and it seems for others, you can abuse all you like, but to accuse a sufferer who knows what the pain is like of NOT having CH is the ultimate and unbearable insult.
And yes, by God I DO PROTEST, but no protest is too much where this is concerned.

Cannot for the life of me see why you do it. I am as big an advocate of 02 usage as you are, but you are painting it as a cure-all for all Ch'ers, and those it doesn't work for as wannabees.

Crap!

W the B

   I have never not one time belittled your pain.  I am devastated that oxygen doesn't work for everyone a hundred percent of the time.  My wife gets a headache once in a while that we call "just a headache".  O2 don't touch it so it's off to the E.R. and a blast of drugs that knock her completely out for a couple of days.  I would never ever underestimate the pain in your head.

                          Potter

Potter wrote on Dec 5^th, 2008 at 6:46pm:


Thank you for clarifying that.  It's just that saying something like "it's just a headache" sounds waaaaay too much like the uneducated responses we used to hear too often of "oh, you have a headache, do you need some aspirin?" or "you've got a headache - would you like to go lie down for a few?" etc. etc. etc.  The association of that wording is one that by its very nature appears to belittle the pain.

Laurie

Well, I don't know how Gary feels about this, but I sure wish he had "just headaches" and not cluster headaches BECAUSE of the pain level I associate with "just" a headache.  I can take aspirin and they go away.  But not even 02 make his go away.  And he's still diagnosed with "cluster" headaches. Atypical, med-resistant, chronic cluster headaches, in fact.

Laurie

Potter wrote on Dec 5^th, 2008 at 4:44pm:


Barbara, the point is that saying "it's just a headache" is not really sharing information or doesn't work towards people trying oxygen, but instead has only negative consequences, at least for me, because of the reasons that follow.

Potter, it makes me feel like the only people who I think understand me after all don't. It makes me feel like I'm accused of lying, of vastly exaggerating a medical problem that has changed my life. It's the same feeling that I get when I go to the doctors and they tell me that my whining is ridiculous, they have seen a similar patient a million times, I should be quiet and take an aspirin.

I don't find it supporting, instead it makes me feel abandoned, belittled and patronized. It makes me feel like I should not spend my time here, because I get hurt here and the CH-attacks hurt me enough as it is.

I'm glad if explaining this will lead to something better.

- Best regards and PFDAN,
Rosa