Lately, I have been saying that I have a neurological disorder that may be affecting my hypothalamus, and causes excruciating pain.  Shuts them up!

"Maybe you wear your caps too tight".  From a doctor when I first started getting clusters.

do these comments stop over the years.

a friend told me when i got miss diagnosed with MS "a friend of mine is a midwife and one of her pregnant women had MS but after the baby was born she was cured"
im a man so even if that was true how in hells name can that help me???????

only last week a woman in a bar who is a friend of a friend tried to convince me she had healing powers and just by holding my head i would be cured but i had to believe in what she was doing. I asked her if she new what CH is to wich she replied its like migraine. No she didn´t heal me, touch or anything else LOL

Mark (the faithless)

5. And the top most annoying one is Stop screaming and banging your head. No wonder you have a headache.

I LIKED that one!

Joe

Sophia wrote on May 29^th, 2009 at 2:17am:


You want to know how I can tell if someone actually has this disease?

If they hear you have it, the reaction is not of dismissal like that. It's that they hate that you have this, too.

I grew up with a kid who has it, and when my Mom told him I had clusters, he was completely devastated to hear I had them. THAT tells me that you know what the fuck I'm suffering with.

In some cases a person needs it explained, because they think cluster headaches just means you have a lot. That I can get the misunderstanding with.... but if you hear it's fucking suicide headaches why in the name of god would you want to claim you have it too?

People hurt my brain...

Newbie on this board. Have been in cycle since two weeks ago today. And this after a remission of over 11 years.. But even that long ago I still remember some doozies when it came to "educated" members of the medical community, namely the head of Neurology for our local Large Hospital:

1) Oh you can't possible have "clusters" you are a woman and they don't have them. Yes you are presenting with a partial Horner's, I will grant you that, but you describe an "aura of flashing lights" never heard of that with clusters, so you must be having migraines or a sinus infection, after all you are a woman!

2) Shortly after that convo in his office, I called to let him know that I was having a Kip 8 equivalent attack and he asked me to come to emergency to confirm that I was having a "cluster"!! I went in, in full bore Kip 9 at this point, and he met me there.. The look on his face when he saw me was priceless to say the least.. "My God, you are having a cluster!! Hey, Nurses come here.. all of you, I want you to look at this patient, this is what a cluster headache looks like!!" All this while I was at a Kip 9 full bore attack! Needless to say, he finally agreed to the O2 and verapamil/sansert (it was a while ago, have had clusters from 1985 (barely no research) to 1998.. then remission until two weeks ago... ARGHHHH

Just quickly another one: more current: from my GP: well I am not prescribing you oxygen.. at the conference I was at last week, they did not even mentioned O2 as a course of treatment so I dont' think that they are doing this anymore.. you know alot has changed since 11 years ago!! (turns out it was a conference on migraine headaches, which is something she still thinks I have) She did however call the head of Neurology  at Trillium, the next day, explained my case and did endup getting an ear full from him regarding O2 being the absolute first line of defense (abortive wise) for clusters.. Thank God.. Got a nice HUGE K tank to keep me company all night..... I give him a hug every time he helps me abort an attack (I love my K  )He is so tall he stands even with my shoulders!! Better company at this point than my husband.. God bless him, but at least K understands and helps me with his silent sentinel duty against those attacks. ( I Do Not call them headaches, they are "attacks" as I describe them to people. It helps with their more comprehensive understanding.. yes it is a neurological disorder NOT a headache syndrome..

"you worry about work too much"

That's pretty much what I get from my family, it's all the stress...

gees you guys crack me up this thread is hilerous...



  thank you      

A lot of people have found a degree of relief with acupuncture, primarily with the secondary issues surrounding CH, the damage we do to our shoulder, back and neck fighting an attack. Haven't seen anyone break a cycle or prevent one using just accupuncture yet but seems to help with that secondary stuff. Any degree of relief is certainly worth exploring!

Joe

2. "An oxygen tank in your home? Dont be silly, I wouldn't even know how to get you one"

Do read Batch's post on how to get 02 prescribed! Will answer ALL your doc's questions!

Joe

"You just need to learn to control it."

um...Ya I'll get right on that....   

New to the boards.
I've been getting clusters for 25yrs, I started shooting NRA High Power Rifles Matches last year. This from my dad
Him "Maybe if you stop shooting that rifle those headaches would go away."
Me "What about the 24yrs of not shooting every weekend but still getting the headaches?"
Him "Give it a try."
ME "Come here. I'll kick you in the shin"
Him "Why"
Me "Just bringing the conversation down to your level"
That shut him up.

TB