CH.com is a worldwide Cluster Headaches SUPPORT group. According to DJs design.

It is a community of individuals with individual opinions and ideas.

It is not intended to be a medical group offering diagnosis and medical prescriptions as I understand it. Some forget that.

Those not afflicted with CH will be quickly found out by the experiences here and nudged along. Time and again we have the new poster relay their symptoms. We dont and cant diagnose but there are enough of us with variable experiences that we can quickly make an educated personal quess if they should seek immediate medical help or pursue another direction. None seem shy about that. I have seen it time and again. Kudos to all.

We or most of us are simply suffering the same malfunctions and wish to be helped and help others in the same boat as there is no other place as good as this and very few others that understand.
If one of us found something to make the day a little brighter, be it a medication or an action, I dont think any of us should hold back no matter how ridiculous some might think it to be. At the same time if one found something to cause greater suffering say it out loud.

The reoccurring theme is we are all different and what helps one may or may not help another.

The fact of the internet is that many will find their own diagnosis today, some will misdiagnose just as a doctor can and often with better information.

With a massive percent of the population without insurance in the USA you cant blame them when it costs a few hundred bucks just to see a doc one time and then several hundreds more to see a neurologist who may again be misguided.

I personally havent been to a doc in over 15 years now for CH. Why would I ? As I never found a prescribed med to help.
Though if something were mentioned here and I researched further about it and thought maybe it would help I might go a doctoring for it.

More often than not it is like minded support commiseration that we all want. Just to know we are not alone in this world, that is the absolute greatest med of all. To this day certain stories bring tears to my eyes the same as when I first came here.
It is also a great place to compare meds, how they affect one or another, did they help or not, who got constipation or the runs (yuk). Things to ask the docs.

We cant and dont prescribe meds. We do often suggest alternates; abortives, energy products, welders oxygen, melatonin, excercise, kudzu, magnesium, etc... that is readily available to all the population. Its up to the people to know how these affect them. True some of these etceteras could be dangerous as well but all are warned.

There is no firm diagnosis of CH just experience and symptoms. With dilligence and thought we all can provide input  but never could we prescribe a med.

As allways though as Bob says its best to err on the side of caution if one must err.

my 2cents. Reread the other posts and its a large repeat ramble I wrote but I'm just here for the cookies anyways.

Callico wrote on Oct 9^th, 2010 at 12:18pm:


I stand by my original post.  I believe Bob has provoked a lot of thought.  I know I have thought long and hard about this since I first responded.  Last night I tried to put a few ideas down on paper just to keep my thoughts organized.  (It didn't work)

Bob, while I agree with much of what you say, and I do believe we need to point newbies to have an MRI and an MRA to check for other issues I think we also need to (after hearing their symptoms and description of attacks) direct them toward some form of HA abortion.  We do need to direct them to an headache specialist who is versed in CH, but for much of this country they are not accessible.  Our GP's know squat all about CH.  My Chiropractor knows more about CH than does my GP.  He spent two weeks studying headache as opposed to 5 hours for my GP.

How many of us went through years of misdiagnosis or lack of diagnosis, or prescription of useless medications that have very negative consequences such as addiction or dependence. (My hand is raised)  How many of us have had teeth pulled, sinuses operated on, etc. etc. etc.

I realize we cannot diagnose, nor would I even attempt to, but when presented with often clear cut presentations of classic CH symptoms I feel we have a duty to direct the sufferer to a proper diagnosis and during the three to six months he will probably have to wait to see a Neuro, and then it is a crap shoot whether said Neuro knows a head from a hole in the . . .

Perhaps I'm a bit more sensitive to it tonight after having gone eight or nine weeks ( lost track and am to tired to figure it out) without having to use O2 I've been nailed 6 times today.  I had forgotten how badly they hurt.  I can't bear to let a newbie who doesn't have over 30yrs experience deal with these without some help.

JMHO

Jerry

This time last year when I first started suffering from CH , I was one of the lucky ones getting diagnosed within two weeks, finding this site was a game changer for me .

Some where to ask questions about what I was suffering from (no info what so ever from my GP). Some where to ask about the meds he'd put me on etc. Some where to ask how long this would take to clear up (didn't like that answer).

and some where to come to terms with what I'm suffering from.

With out the advise given freely on this board I would have no idea that I could go down to my local shop and get a energy drink out the fridge that could actually reduce the pain when OTC pain killers wouldn't touch it. I would have no idea that O2 could be so effective in aborting attacks or even sticking your head in front of the air con vent could help.

and that is just the start of the help that has been so freely given to me from this board.

It was from advise given to me on this board that I had an MRI scan done and saw a neurologist (wan**r) ... sorry that wasn't nice after the poor man made me wait 6 months for an appointment and then made me wait an hour and a half in the waiting room and then kicked me out 5 minutes later after not listening to a word I said 

Any way all this stuff is essential and ALL of it is SUPPORT.


I just hope that I can return the favor and help some one else.

God bless

Nigel