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   >:( >:(

Click on this:

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

Print many copies. Carry one with you at all times and give it to the next person who thinks they have it figured out.

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 ;D   

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

Joe

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

Click on this: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Print many copies. Carry one with you at all times and give it to the next person who thinks they have it figured out.

WoW. Thats brilliant. I'm honestly thinking of spamming this to every doctor I can. lol

davidj35;
        Remember that people talk out their a$$ all the time, yet its usually with good intentions. We can all give bad advice, or think we know something about something, yet really know nothing. lol. Just human nature to believe we can solve someone's problems.

Try to let other peoples errors bother you less, is the moral of the story I suppose. Although its one I struggle with too.

I think a large part of the problem is the term "Cluster headache" is a very poor descriptive name. I usually don't even bother explaining what a CH is, I just say I have a "Monster Migraine" and most people understand a little better the agony and complexity involved.

If you really want to shut them up, tell them you have a Cranial Nerve Disorder, that sounds 'technically painful'. lol

Quote:

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

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?:D

Very cool, Brew. Can't imagine why I've never run into it. Made copies for myself and emailed to friends and family. Thanks. Ron

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 :)

Ah, if we all had a nickle for every stupid 'cure, or response' to CH we've heard... We'd all be rich and heck with all those nickles maybe we would have found a cure by now!    :D

David, how about: "hypothalamic enervation dysfunction"

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

Love it Bob!!!

;D ;D ;D

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

I know they mostly mean well but DAMN >:( don't you just wanna pop em in the nose sometime???? ;D Joe

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

Only if we do it for 20 to 60 minutes straight 4 to 8 times a day LOL

LOL now there's a thought!  8-)

Yeah, lots of well meaning people don't understand, and some may never understand. If you can get your family to understand and your boss to at least accommodate you, that is doing well. I don't worry about the others. 


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

I had NOT heard the alkalai water yet ;D

Some alkaline water might actually be good, as (depending on the formula) it may contain lots of magnesium. Clusterheads tend to be quite deficient in magnesium, and some research supports the idea that correcting the deficiency can reduce symptoms. I wouldn't trust any MLM product - I make my own for cheap by combining carbonated water and milk of magnesia to make magnesium bicarbonate concentrate, and then put 1 part concentrate with 10 parts water to get magnesium rich mineral water.  Got the formula from an atrial fibrillation group - magnesium is good for lots of stuff.

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

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

I get the "Its sinus trouble" from alot of people. I'm not saying that pollen doesn't have anything to do w/ ch. But I'm not saying it is either.  Do alot of us sufferers have sinus issues? I think we do if I'm not mistaken. ALL I do know is that b-4 I started getting my ch, I never was affected py pollen.  Anyway........thats for what its worth.   

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.

Today I was told, I shit you not, that I should consult a shaman.  The only spirits I want to consult right now come from the sacred agave plant.

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

Today I was told, I shit you not, that I should consult a shaman.  The only spirits I want to consult right now come from the sacred agave plant.

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

Thingfishp,

You are actually almost on the mark with the agave plant (actually have been wondering about Peyote and if is an alt therapy possibility). A lot of people use a shaman when trying to bust so that actually is one of the better suggestions you could get believe it or not.

David ;D

     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

I'm referring to a local woman who holds little bon fires in her back yard and charges people to "read their auras."  I don't think she's going to do much for me (but according to her daughter, a student of mine, she makes a pretty good buck "burning stuff and giving people beads").  I am investigating other avenues, though.  I don't dispell more spiritual avenues and their natural "prescriptions."  Maybe time to go back and read some Castaneda.

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.

Skull Buster wrote on Jun 12^th, 2010 at 8:36pm:

I get the "Its sinus trouble" from alot of people. I'm not saying that pollen doesn't have anything to do w/ ch. But I'm not saying it is either.  Do alot of us sufferers have sinus issues? I think we do if I'm not mistaken. ALL I do know is that b-4 I started getting my ch, I never was affected py pollen.  Anyway........thats for what its worth.

To add on this subject.
My nose and ears are often stuck. Just driving on the road makes me very aware of subtle differences in pressure due to landscape heighth. When flying I need earplugs to regulate pressure or my ears will hurt VERY mych. My nose is often very dry, my ears pump wax like rabbits bread but other than that I don't have a real issue. My ears also can't stand water, just a bit of water is enough to infect my ears.
I know that in spring time, there are pollen from a specific tree that I can't stand. If I've been near trees like that, the day after my nose is stuck completely and that might cause tensions and pressure. Nothing too bad really.

That being said, about 5-6 years ago I had to take pollen medication because for some reason I reacted pretty heavilly to something in the air, about 3/4th of the year.
I had to take the meds for 2 years, after that my nose has been a nuissance, nothing too bad really.

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

Click on this: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Print many copies. Carry one with you at all times and give it to the next person who thinks they have it figured out.

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.) 

Probably because people are ignorant and place everythig unbelievable in their ignorance.

If something wasnt shown on tv or in their tv serial then it is magic for them.

...a LONG time ago, I had a near desperate need for others to understand my predicament with ch. Not sure why...maybe sympathy or pity (nah)..or just to know why jon acts so strangely sometimes.

But, with the exception of ONE colleague who had a friend with ch, ONE physician with experience, AND you folks here.....no one has ever UNDERSTOOD. How could they? They have no point of reference. And I stopped creating more angst for myself because they couldn't. This can be a soul searing, lonely, desperate battle...one fight at a time for me.

Not to say I have been shunned, derided, or even doubted. My friends, family, and colleagues know that jon has "awful" headaches...that's enough for me. I believe that their "acceptance" derives from my also desperate need to display I am just a regular guy in between hits...pull my weight, upbeat attitude, let's get on with life!

Simon's letter is an amazing description of what ch is and means to a person. I cried the first time I read it...just wow! That said, I rarely pass it out....the few times I have the reaction was........nothing. Unless you've experienced ch in one form or another (like a supporter)...a letter just doesn't get through. YMMV.

oh, and also...I've gotten all or most of the "suggestions" that are legend. Too much "stresh" (from a drunken colleague)....you smoke too much...you don't smoke enough(pot)...you drink too much...you don't drink enough....you sleep too much...you don't sleep enough (oh please!)....just relax...don't think about it...meditate...chiropractic....accupuncture....quit your job...work harder....and on and on and on....

They all mean well...I hold no grudge...I take it all in with a sense of humor that without which, a clusterhead is bereft.

Best,

Jon

Emma,

I hear you, my biggest issue is I have given the document to quite a few people and when I ask them what they thought I get "oh I didn't read the whole thing it is too long etc". What a crock but then I think about it and I realize I don't really research my colleagues issues either. While it is a great document and I carry 10 of them with me at all times we all know the saying "you can lead a horse to water but you can't make him drink".

David

Quote:

oh I didn't read the whole thing it is too long etc

Maybe it's because they're Mets fans?

Oh, snap!

Just kiddin' ya, brother.

Maybe it's because they're Mets fans?

Oh, snap!

Just kiddin' ya, brother.[/quote]

LMAO
David

1) I can't stand it when other people tell me, "Oh I know what you feel. I have migraines too." AS IF!

2) Doctors blow me off and I am SICK OF IT! Went to ER a week or so and the NP diagnosed me with pink eye and prescribed eye drops and antibiotics---even after I told her I'd had a diagnosis of clusters. Then she ordered a "cocktail" which drugged me up, put me to sleep, then sent me home. I was NOT safe to drive. This is the second time this has happened to me (diff hospital).