Sometimes I feel like, nobody understands what I go through. (Except others suffering with CH) I mean, my fiance, whom I live with, is somewhat compassionate, but he acts like it's just another bad headache...and virtually everyone gets headaches, right? I don't know. I feel like he thinks I exaggerate the pain, or maybe just can't handle it. Hell, I had three kids naturally, and grew up w/ four brothers who did a lot more than rough house me. I can take pain...just not this. I'm glad I have people like you guys who understand, but I wish he could or would TRY to understand that the hell I go through is NOT made up, or exaggerated in the least( I wish it was) It's a complete nightmare that robs me of sleep and peace of mind. All I ask for is understanding, and a blow to the head to knock me out during an attack (ok, I made that last part up) I mean, I've even had friends say, "She's faking another headache again so she doesn't have to hang out. I mean, who gets a headache within 5 min.", or" Hey, I get migraines. You haven't had a headache until you've had a migraine If I can deal with them, you can deal w/your headache." You know, sometimes I wish that they would all have just ONE CH. I'd never wish anyone to have them plague them over and over. Just one real good one so they know what it's like. That would shut them up.

I have been proactive. I've tried numerous preventives and abortives, but still no remedy. I also have been diagnosed

Potter wrote on Dec 5^th, 2009 at 11:41am:

What is with this trolling on the board, having bad day today?

I found myself smiling while reading your post - relating to it I mean.

Before I was diagnosed I used to say things to my friends like I've got to get x done by ten as I'll have my headache at 11 and won't be able to do anything then until after one.
I used to get hit every day between 11 and 1 and then between 5 and 7 in the evening. Regular as clockwork and I was out of my head with pain and fear. I wouldn't let anyone near me.

When I got my diagnosis I'd actually been hospitalised. My ex had called the doc who had called an ambulance. He thought I was having a stroke or an aneurism. Scared the living daylights out of the poor man.
I was taken in and had an MRI and a cat scan and a neuro came to tell me I didn't have anything "scary"
Based on my autonomic symptoms  and what he had observed himself I had CH.

I remember to this day being utterly mortified. I can't tell you how embarrased I was. Making all this fuss over a "headache". I remember thinking "Bloody hell, couldn't I at least have had migraines?"

Half the problem is that word "headache" It sounds so dismissive.
Sadly the other half is intolerance, misunderstanding, selfishness or ignorance or a combination of all of them.

Try explaining the mechanism of CH to people. Tell them it's a vascular neurological condition in which the blood vessels on the affected side of your brain swell dramatically crushing the nerves around them. Tell them neurologists consider the pain to be worse than amputation without anaesthesia.

Tell them ordinary pain killers will not work. Even morphine isn't the right type of pain relief. The ONLY thing that will kill the pain is vaso constriction, bringing the blood vessels back down to "normal" size.

You are not a wimp. You are coping with a horrific pain and continuing to live your life.

Your friends and family are welcome to come here, we'll help them understand (one way or another  )

More importantly though, we'll help you understand all you need to about this condition and how to cope with others too.

Hang in there! It's a big learning curve when you first find us, you'll get told a lot that just won't sink in but it will in time!

Helen

Loved your dog story, Bob!!!

It's really quite simple: You learn how to manage this thing or it will manage you.

Only when I foolishly try to make people understand a pain they can't begin to comprehend. It's like my wife trying to explain hot flashes to me!!!........as Bob put it, stop stressing over making people understand your pain, and put your efforts into learning to live with it...and as Brew said...manage it instead of letting it manage you.

Joe

A couple of weeks ago Helen described CH as a neurological condition in which the blood vessels swell on the affected side of the face, crushing the nerves and causing excruciating pain.  I’ve found describing it as that makes my university a little more sympathetic.  :p

As for friends, I suppose it’s when bad things happen that you really find out who are the proper ones.   It sucks though!  I think most people, including non-CH here, have a set of people who are fair-weather friends.  It's just working out what different friends are capable and willing of coping with in your friendship with them.    You could try to work out periods that your likely to remain headache-free and go for a half hour coffee or something - so they don't feel neglected.  Also it'll give you a window into the pain-free outside!

Thanks for that viual, Mac.

Mac_Muz wrote on Dec 7^th, 2009 at 5:17pm:

    Other than wit I avoid sharp objects.

              Potter

[/quote]
    Other than wit I avoid sharp objects.

  Potter [/quote]


A witty comment on wit....Potter...you crack me up

My favorite is everyones face at work when I come walkng in with an E tank.  You will learn to manage. Enjoy your PFDAN when ever you can. This site will hp you learn to manage.

Jrcox

    "Other than wit I avoid sharp objects."

Today I spent all day wandering around looking for myself..

Neva' had no wit, but I got Humor..