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.

problem with some doctor's is they stopped learning after med school.

clusters are the trendy headache, and more MDs need to hop on the bandwagon and learn something about them.

But on the plus side, you've now had a doctor reverse ur Dx! Congrats, you no longer CHs. don't you feel better?

Quote:

clusters are the trendy headache

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

Jeannie

It's really interesting to watch how that road runs both directions over time.

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.

this sites survey says 30% of the members of this forum who suffer from CH's are Female!!!!!!!!

Sufferer's gender
Male              8270      68%      
Female      3670      30%

I know how you feel, when I first started going through this I was told the same thing by many people. and yes it makes me very angry as well. It's almost like they are trying to say your a liar.

95% of the world population has not idea what we go through, and 95% of the worlds Doctors have no clue what CH even is.

I say leave her in her ignorance, or if you must talk to her about it, educate her on the facts.

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

this sites survey says 30% of the members of this forum who suffer from CH's are Female!!!!!!!! Sufferer's gender Male              8270      68%       Female      3670      30% I know how you feel, when I first started going through this I was told the same thing by many people. and yes it makes me very angry as well. It's almost like they are trying to say your a liar. 95% of the world population has not idea what we go through, and 95% of the worlds Doctors have no clue what CH even is. I say leave her in her ignorance, or if you must talk to her about it, educate her on the facts.

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

Jerry

You know what concerns me most about his ignorance? Not so much saying women don't get CH.. that's bad enough but giving triptans to a nine year old who's had ha's for a month without trying other options first?
Uh.. excuse me?! As a last resort if nothing else worked.. maybe but at 9 yrs old? All I know is I would want to investigate EVERYTHING else first.

From the aafp website "none of the "triptan" agents are currently approved for use in children"

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


Some "headache specialist"..

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

Jennie wrote on Nov 18th, 2009 at 5:10pm: this sites survey says 30% of the members of this forum who suffer from CH's are Female!!!!!!!! Sufferer's gender Male              8270      68%       Female      3670      30% I know how you feel, when I first started going through this I was told the same thing by many people. and yes it makes me very angry as well. It's almost like they are trying to say your a liar. 95% of the world population has not idea what we go through, and 95% of the worlds Doctors have no clue what CH even is. I say leave her in her ignorance, or if you must talk to her about it, educate her on the facts. What Are the other 2%???  Inquiring minds want to know! Jerry

good question LOL

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

wrote on Nov 18^th, 2009 at 6:09pm:

You know what concerns me most about his ignorance? Not so much saying women don't get CH.. that's bad enough but giving triptans to a nine year old who's had ha's for a month without trying other options first? Uh.. excuse me?! As a last resort if nothing else worked.. maybe but at 9 yrs old? All I know is I would want to investigate EVERYTHING else first. From the aafp website "none of the "triptan" agents are currently approved for use in children" START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Some "headache specialist"..

I agree 100%

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

this sites survey says 30% of the members of this forum who suffer from CH's are Female!!!!!!!! ............................................

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

Marc

The other 2% are hermaphrodites.

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

wow this topic took a quick detour.  Clusterhead Hermaphrodite. LMAO ;D

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)

Jeanie-
I understand your frustration completely!  Because the consequences of people being unacknowledged or not believing you is that they will probably come to the conclusion that you are either a baby, a complainer, lazy, weak, depressed, lying, trying to get attention, crazy, a hypochondriac, or that they have the same thing and you just can't take it as well as they can.  After all, it's just a headache. 

I don't explain much anymore.  I might say, "Google it sometime."  I just don't want to see their faces of disbelief.  Anyone that knows me well, knows it is true, so I stick with that.  They have seen me during a cycle and know how different I look and how I have to miss things I love sometimes.  Of course, since I turned 50, I decided that I don't have to prove much anymore.  I've spent 50 years doing that and now I'm going to coast all I can and enjoy life, learning, and love.  A lot of things are just easier now.  Hindsight is 20/20.  Being 50+ is priceless!

Joni

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 agree with what Joni said...all the way.

50+ is great!

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.   ;D

Believe me, it took all the self control I could muster.

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.

Hey Starlight!! Long time no see, how are you doing?! It's lovely to see you pop in!

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  ::)

Bob P wrote on Nov 19^th, 2009 at 12:01pm:

Believe me, it took all the self control I could muster.

Need some help? _ _ _ _ H ;D  :)

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

You must have a really good imagination because I didn't say anything beyond offering to help a friend  ;)

Hi Helen :)

I am doing really well, longest headache free period ever (since age 14) so definitely something I feel good about.  Been taking magnesium, Vitamin D, C, E and melatonin (6 mg)--so don't know if that is what is doing it or if I am just aging out of them lol!  Anyway, knock on wood they will stay away.  Hope you are doing well!

Layla328 wrote on Nov 19^th, 2009 at 9:20pm:

I am doing really well, longest headache free period ever ...

Good to hear, Star.    :)   And with less melatonin.

Quote:

Need some help? _ _ _ _ H

Actually, I've changed my stance on this.  If they're older, have a mustache and/or beard and a slight balding spot, they may get them.  It's that testosterone thing.

Thanks Kevin!  That is funny that you remember that--yep I have cut down on melatonin quite a bit lol.  Hope you're doing well!

Read this post and had to respond! I am a female who is having some big problems getting a diagnosis of CH just because I'm female. I can't tell you how many times I've heard, "You don't have cluster headaches because you aren't the typical CH sufferer." And I have also been told that I'm having clusters of migraines and not CH's!!! It is extremely frustrating because I fit the cluster quiz PERFECTLY! Even the neurologist told me he "doesn't want to jump to the diagnosis of CH when what I’m suffering from is probably just a different type of migraines then what I've had in the past." What's up with Doctors refusing to label something as a cluster headache? Regardless if ALL symptoms point that way? It's not that I'm hell bent on being diagnosed a clusterhead but I feel like I won't ever get the proper treatment without the correct diagnosis! I agree it’s very aggravating.  >:(

My 9 year old daughter started bad headaches about two years ago.  Ended up at Paed Neuro and because I an CCH he decided it was a family thing and so put her straight on to Sumitriptan.  I used to be a practicing medic and it horrified me, it's not generally licenced for kids under 18. I refused to fill the script and went back.  Seen by another Paed Neuro who was aghast at the Sumitriptan script and said NO.  He's trying her on Pizotifen syrup and it seems to generally make her headache free.  Just because one of us is CCH it seems a label can be stuck on other family members.  Watch out for that, in our case it seems our daughter (hopefully!!) is not CH but childhood Migraine - a whole different ball game.
Best of luck

Joni wrote on Nov 19^th, 2009 at 2:34am:

... the consequences of people being unacknowledged or not believing you ... I don't explain much anymore.

Beyond this scope, had read of a survivor of Auschwitz, a death march to Dachau, then five months hospitalization.  He visits an aunt after the war who went on about wartime, "My dear Charles, if you only knew how hungry we were here!"  Hearing that, his efforts to talk about it ended.  Some met disbelief.

We're not the first, worst off, or last with transmitting endured.  Others struggle, seems sometimes if you want to hear a mind's grasp of comparable or outstepped, maybe disregard, just bring up yours.


Thanks, Deej.