I'm not sure why this has gotten under my skin but it has .

My friend's son (9) has been suffering from headaches for a month now.  She just got him into see a pediatric neurologist today.  He was Dxed with migraines and given a script for Maxalt.

In our conversation, she brought up that she mentioned that she had a friend who suffered from CH.  She then told me that the doctor told her that it is "very odd that a woman would have CH," and  that "it is more likely that she (me) suffers from clusters of migraines."

This just irritates me to NO END!  I could hear in my friends voice that she now doubts my diagnosis.  ( My friend is a person who says she never gives into pain)

It makes me sick to think how many doctors there are that have no clue what they are talking about!

Jeannie

Edited cause I can't angry type.

Quote:


Well,  I had Clusters before it was cool to have Clusters!   

Jeannie

1.  My headache specialist told me it was rare for me to have clusters and not be a smoker.  The interesting thing was that he confirmed my diagnosis after that and he was very CH savvy otherwise.

2.  I don't care at all who thinks what about my diagnosis except my doctors.  As long as they get me the right meds, even they can think it's a hangnail for all I care.

3.  Doctors are forced to do medical education every year, they just don't all decide to specialize in cluster headaches.  Except for headache specialists, I don't expect any of them to really know much about CH.

As for you being mad, I understand that ignorance can be infuriating.  Just remind your friend that you (and the docs you have gone to) are sure of your diagnosis.  If that aint enough for her to put it to rest, maybe you should stay away form this topic with her.

Jennie wrote on Nov 18^th, 2009 at 5:10pm:



What Are the other 2%???  Inquiring minds want to know!

Jerry

Callico wrote on Nov 18^th, 2009 at 5:37pm:




good question LOL

I guess the other 2% either chose not to answer or ewww are both or maybe sexually confused ;

Jennie wrote on Nov 18^th, 2009 at 5:10pm:



I would be willing to bet that the number would come in higher if a new survey were to be done.

Marc

Now THAT would be a rarity...... A Clusterhead Hermaphrodite!

I would be a little concerned.
Being a pediatric neurologist does not make him a pediatric headache specialist and the script for a triptan may point to him being less than an expert on the subject, as Helen has stated.
So...if he's NOT an expert, a 9 year old probably shouldnt be seeing him for headaches.
He's wrong about clusters....maybe he's less than an expert on migraines. If the kid has BAM, the triptan could be very dangerous for him to take.
Some kids are very easily treated for migraines with much less dangerous drugs than triptans and much less of a chance that they could be creating a rebound problem.

Maybe the diagnosis is correct and the script WILL end but being correct....who am I to say.but....

If it were my friend, I'd be telling her to not be so.....uppity...and maybe she should take her son to a headache expert. One that regularly treats migraines in kids.
But then, thats me....

Bob
people think that neurologists are the ones to best treat headaches and sometimes, they are as far from it as a plumber...(sorry to any plumbers out there)

The survey one this site, which is still ongoing, is a database that should get a lot more attention.  Over 12,000 people have participated in the survey.  It shows that clusterheads are smokers at a rate higher than the national average.  Clusterheads also have blue or hazel eyes at a rate higher than the national average.  Lots of interesting info there.

I believe that the 2% that you're asking about have other headache types, such as SUNCT, etc.

As I was reading and scrolling down the page I kept saying to myself..."please don't let BobP read this thread"   Then I saw you had,  Bob and I must say, I respect you for your constraint.   

I have to admit that makes me pretty upset what that doctor said.
Here's the deal, what the doc said was just plain ignorant.
It is pretty unusual to get cluster headaches period.  I really don't think it is that unusual for women to get them, and, when they do, they often get them at a younger age than men.
I started getting them at age 14, I am female had never touched a cig, alcohol or even coffee.  So every time I hear about any of the "sterotypes" about cluster headaches, honestly I inwardly cringe a little.  Took me a LONG time to get the right diagnosis nevermind the right treatment b/c of doctors, the ones who are supposed to help.  The problem is when a doc does not know something, many times they are too arrogant to admit it and look it up in a book.  That and the fact that women oftentimes receive below par medical care. 
So anyway, as far as your friend goes, why is she telling her son's doctor about your cluster headaches?
Because that seems to be the root of the problem.  Maybe it is just me but I have never gone to a doctor and told them about a friend's medical problem.

I agree with Starlight.  I too started at 14, didn't smoke, nor live in a home with smokers, didn't drink alcohol or coffee either.  I was on my fathers commercial fishing boat in the middle of SE Alaska waters with a crew of 5 when the first CH hit me.  I wasn't at all in a typical situation (who really is).  Then it was 13 years of no help from docs, MRI. I had no idea what was wrong, and no direction from anyone to come to treating CH's.  After I moved back to Alaska (of all places), I started a cycle in 04. The first doctor I went to diagnosed me with a Sinus infection with a migraine and put me on antibiotics...I just about flipped out! I walked out of the appt and made a new one with another doc immediately.  The new Doc mater-of-factly said it was CH's, like "duh". I went home and found this site (5 years ago), and cried my eye's out!  Finally! An answer!!

That wonderful doctor has moved, and I had to go back to the other one.  This time around, I made no joke how serious I was about treating CH's was effective for me.  She was indulgent.

I have had understanding from my friends and family, luckily.  But, the common, "I have Migraines too", makes me cringe... 
Just today, I was corresponding with a older friend, and mentioned I get Cluster Headaches and my cycle just began.  Her response was "I know all about the headache that come with your period-I had them for 30+ years until my hysterectomy, mine were from "estrogen overload" according to my doctor. Anyway, hope you are feeling better."
I guess I see the confusion... made me giggle 

and how do you suppose I KNEW you'd be the next one Marc?