I have been getting CH's since I was teenager every year between Sept and Feb give or take/and have always and continuously been made fun of by family members/friends etc for not attending some events, holiday parties etc due to my headache condition.  My headaches can come on quickly and very strongly, and usually after something I've eaten, like onions, garlic, chocolate, coffee, and others, and if I am in public when this happens, it is a disaster because when the pain hits i usually can't do anything but sit there and close my eyes, try to get meds and an icepack for the left side of my head.  Now, if this happened at a holiday party, forget about it, i would be in intense pain, and would have to literally try to explain this condition to everyone I see or come into contact with.  Therefore, around the holidays i lay low, and purposely avoid certain events due to my headache condition.

Now, lets fast forward to 2016, modern time, my wife gets an invite to the Christmas Holiday Party and they need to know exactly how many RSVPs will be going, and she asks me, even when she already knows what my answer will be.  I answer her, there is now way i will be attending due to my headache condition, and the 14 year old daughter hears my response and says, "Nice Excuse!!"  Now at this point, i look and the child and contemplate even beginning to try to explain to her, as she has about a 2 sec attention span as it is, so i explain it to her generally without going into detail.

My wife asks me will I be attending the other daughters Birthday party at BeniHanas Japanese Restaurant, and I have the same response, and the same response from the younger daughter, "You don't go to anything, WOW!!"

People in general don't understand the pain that we have to go through, nor are they sympathetic to the situation, and believe me Im not one looking for the sympathy anyways believe me, but people do not understand this disease like we do, they have no idea, none, the type of pain we have to endure.  A good day for me, is being able to control this pain to a manageable level.

But society doesn't understand, and we who suffer the daily pain from these headaches continue to be ridiculed publicly and looked down upon.

I had a request for a Jury Duty spot, same thing, won't be able to attend due to my headache condition.  People just don't understand!!!!!!!! :) :) :)   

No, people don't understand. Family can't understand, society doesn't begin to understand and the entire medical community doesn't really have a clue.

Even those of us who must live with this dread disease can't agree to being agreeable!

If you really must expose others to the dreadful reality of our dread disease then simply suggest they look it up on YouTube.  There's many videos of people getting belted badly but I'll be honest, I've never been able to watch them.

It's just too close to home.

On a happier note you may like to go our main board to find 'Cluster Headache Specific' then scroll down just a little way to find a thread called "Dopiest Responses to CH".

Nine pages of reading, get comfortable and put your smile in place, because it might quickly show you're not the only one to have noticed this little problem.

In the meantime I welcome you aboard. Full steam ahead and damn the torpedoes!

Welcome home,

Brian down under.

Hi and welcome to the place where people really do understand not just the pain of a CH but the impacts it can have on life.

Have you got an effective preventive, something like verapamil, lithium or topamax, to cut down how many CHs you get? Have you read about how lots of us use vitamin D3 as a very effective preventive?

Have you anything to kill off CHs you do get, especially oxygen and sumatriptan (imitrex / imigran) injections or nasal spray?

Keep reading here as you'll learn a lot and ask any questions that you come up with.

You'll be ridiculed a lot less by strangers if you give it it's proper name.

Tell them you have Trigeminal autonomic cephalgia - sounds far more grand than a headache.  When the say "whats that", tell them it's a neurological condition which effects the nerves that they're getting on.  ;D

Yes, thats true.   Neurological condition that effects the nerves sounds more professional.

Thanks,

Go to the Meds/Treatments section and read the "123 Days Pain Free and I Think I Know Why" thread. Actually, just the first ten pages or so. That gives you the background on the Vit D3 regimen that has been effective for a lot of us. (Especially episodics) You may well find yourself wishing you had an excuse to get out of parties.  :D

Jerry

PS. Welcome aboard. Wish you weren't here.

Capt Jack,

Welcome aboard.

Read the following, then come back with questions.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Peter.

I must admit, my CH has twice saved me from having to spend a week with relatives I don't like.   ;)

Every cloud has a silver lining.

Yo Captain Jack,

Welcome to a place where we all sincerely understand your physical pain and most of us can relate to the associated problems such as family outings, job responsibilities, etc. Plenty of reading here to do.

Congrats on finding this place, known to be the best resource in the entire world; more credible info than any place else.

If you need anything, holler, 24/7, somebody will empathize, sympathize, and reply with easy for you to understand knowledge.

Wishing you and your family will this holiday season. ;)

-Gregg in Las Vegas