I just need to vent for a moment. In the past few days I have had one family member and two "friends" tell me they had the cure for my "headaches". The first thing I do is say thanks and then explain there is no cure but lay it on me can't wait to hear this one. First one suggested after I told him I could not go to a concert with him (was starting my alt therapy and the hits were coming fast and furious) that Tai Chi was all I needed, I asked him to check out this our cluster headaches message board before he started telling me how to cure something that I have been dealing with for over 12 years and that I had tried, acupuncture acupressure, bio feedback, massage, chiropractic, lithium, prednisone, verapamil  and on and on. He hung up on me LOL. The next person told me all I needed was alkaline water, I checked it out on the Internet and of course it is basically a pyramid scheme and a hoax. He now is mad at me because I wouldn't by his f&*ing water. Next my sister in law said she had a friend who could hook me up to a computer and tell me what was causing all of these "headaches". I was like wow why haven't the Doctors thought of that LOL. Anyway I am just getting this off my chest I am sure there are many of us out there who have had well intentioned friends and family, but when you tell them to check out our cluster boards they never do. Peace out

David   

There have been numerous threads started on what is the wildest cure a well menaing friend or relative suggested to you! There have been some doozies...I had NOT heard the alkalai water yet    

I know they mostly mean well but DAMN don't you just wanna pop em in the nose sometime????

Joe

Quote:


what i dont get is why they are saying these things instead of a
-sorry my friend,see you some time else while you ll be better.Meanwhile Pf wishes. 

or something like that.
Much better and more honest.Gee ain't that hard!
Whats with the bullshit all the time?
Sorry David i dont mean bad for your friends but its like a damn virus these sayings.
And we all have and gonna hear them again.

we have to find a moto about this
something like
shitsayings prevail over Emotional Intelligence 
any ideas?

I know they mean well I just had enough of it this week. I guess what gets to me most is how many times I have tried to explain it and my own family (not including my wondeful wife in that) can't be bothered to read up on it. So thanks for the link, that will be printed and handed out and yes I am going to call it a cranial nerve disorder from now on LOL.

PFDs to all

David

David, how about: "hypothalamic enervation dysfunction"

Delivered with a slight, "knowing" smile, as you turn your head away...

Guiseppi wrote on May 29^th, 2010 at 5:11pm:


That'll at least give them some 'insight' haha 

LOL now there's a thought! 

Thanks for the Magnesium tip, i will follow up on it as I try pretty much anything at least once.

No allergies, no sinus issues unless I am in the middle of an attack. Rest of the time me and my nose are good to go.

thingfishp wrote on Jun 13^th, 2010 at 2:13am:

You know, shamans also "prescribe." Where do you think one of the most effective treatments of this god-forsaken malady has its roots?

     I saw my PC doc last thursday for a BP check and let me tell you he is very much aware I have CH. I'm still in this nasty cycle I can't break, my symptoms have ramped up over the last 2 weeks, I'm sitting there suffering with head pain, my left eye swollen half shut, irritated, bloodshot, tearing down my face and he says to me. "I think you have allergies. Try taking Claritan and Visine A".  Talk about wanting to pop someone!!!!!!!!!! UGH!!!
I REALLY JUST WANTED TO SCREAM! I DON'T HAVE ALLERGIES!!!!!! I HAVE CH !


UNBELIEVABLE!


DONNA MAE

Off topic note on the sinus trouble thing--

When I was first being evaluated by a neurologist for CH I told her I'd never had any headaches before except for seasonal sinus headaches.

She told me that sinus headaches are a myth made up by marketing executives of pharmaceutical companies.  She said that if you have a sinus infection there is pressure, and your ears might hurt from the pressure, but when there is actual pain involved you don't have a sinus headache you have a migraine.  She also said that you can test this by taking excedrin instead of sudafed when you have a "sinus headache."  If it goes away you have your answer.

So it turns out I had migraines for years before CH & I was never diagnosed.

Brew wrote on May 29^th, 2010 at 3:47pm:


I also have a few copies printed in my personnel file at work so I can give one to anyone when required (I work in a small office so it is easy for me to ask someone to get a copy for me). It really makes people stop and think.

However, some people just don't understand if they haven't had *that* pain or they haven't been supporters of people going through periods of cycles of CH and whitnessed someone going through it. People think I am being over the top about the pain sometimes and assume clusters are just normal migraines (why do people think cluster headaches are migraine headaches, they are different words! Unless I have missed the point.)