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Neetsx
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The contaceptive pill
« on: Nov 19th, 2003, 6:20am »
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Hi , My 17yr daughter has just been diagnosed with ch and has been on the pill for only 2 months so it would seem that this could have triggered them . She will now stop using the pill , will this mean she may not have another ch attack ? Any experience or advise please . Cheers !
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Paigelle
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Re: The contaceptive pill
« Reply #1 on: Nov 19th, 2003, 9:02am »
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The pill!!!!  I hate the pill!  When I was pregnant I never even had the slightest HA.  After having my son, the OB put me on the dreaded pill.  Within 3 days I started a cluster cycle.  I had to go off it immediately.  Even if she stops taking it, she might continue to have them.  The pill itself might have just started them.  I can't take any contraceptive with the hormones in them.  Almost makes me thing the hormones could have something to do with CH, but at the same time I have been having them since I was young.  I think it just triggers something in your body that will set them off, as does alcohol.
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pubgirl
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Re: The contaceptive pill
« Reply #2 on: Nov 19th, 2003, 9:43am »
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Neetsx
 
Are you certain the diagnosis is correct? From what I understand, and my own personal experience, hormones can play a huge part in headache syndromes in women, but not that commonly with CH.
 
Has your daughter been given the correct treatments if the diagnosis is certain?
 
Also, have you registered with/joined OUCH UK. It is a fantastic site, with some very knowledgeable people with detailed and specific insights into dealing with CH and the NHS!
  www.clusterheadaches.org.uk
 
 
Wendy
« Last Edit: Nov 19th, 2003, 9:44am by pubgirl » IP Logged
Neetsx
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:)Hi Wendy Re: The contaceptive pill
« Reply #3 on: Nov 19th, 2003, 9:54am »
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Hi Wendy , Thanks for the Uk website , I'll look into it further .... Neetsx
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Giovanni
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Re: The contaceptive pill
« Reply #4 on: Nov 19th, 2003, 10:15am »
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If the diagnosis is correct for cluster headaches, there is no stopping or curing this disease once it has started.  Some people go for month in remission (pain free times), years, weeks, or practically never.  
 
I am sure that my clusterbuddies here will correct me if I am mistaken (I hope that I am).  Sorry to tell you this.
 
 Sad
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floridian
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Re: The contaceptive pill
« Reply #5 on: Nov 19th, 2003, 10:45am »
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Giovanni,
 
you are right in saying there is no cure.  We don't even understand the causes of the disease entirely.  But there are treatments, and the idea of better treatements and maybe someday a cure is realistic.  Also, if someone has clusters and goes into remission for 10 years, is that a cure?  For cancer, 5 years of remission is often considered a 'cure'.  
 
On the question of clusters and hormones -  a few years ago, I foolishly tried andro (androstenedione, a precursor of testosterone and other sex steroids including estrogen).  The next day and out of the blue,  I had my first cluster headache of the summer. Maybe a coincidence, or maybe the subliminal symptoms of the approaching beast led me to do stupid things (I usually feel amazingly good in the last few weeks before a cycle starts - need less sleep, have more energy).  But maybe the andro and changes in hormones acted a trigger.
« Last Edit: Nov 19th, 2003, 10:48am by floridian » IP Logged
Paigelle
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Re: The contaceptive pill
« Reply #6 on: Nov 19th, 2003, 11:01am »
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But contraceptives can trigger the cycle of CH, even if a person has never had one.  The pill, like many other things, changes everything going on in your body.  Due to the hormones in it, it will screw up the thyroid, circadian rhythms and everything.  It is quite a bit more potent than a Dr. will lead you to believe.  I had been CH free for quite awhile, took 3 pills and my body went into a downward spiral.  Even my GP stated due to my CH, I should have never, ever been given the pill.
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Prense
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Re: The contaceptive pill
« Reply #7 on: Nov 19th, 2003, 7:58pm »
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on Nov 19th, 2003, 11:01am, Paigelle wrote:
But contraceptives can trigger the cycle of CH, even if a person has never had one.  The pill, like many other things, changes everything going on in your body.  Due to the hormones in it, it will screw up the thyroid, circadian rhythms and everything.  It is quite a bit more potent than a Dr. will lead you to believe.  I had been CH free for quite awhile, took 3 pills and my body went into a downward spiral.  Even my GP stated due to my CH, I should have never, ever been given the pill.

 
 
It seems to me that if this were true, more women would be diagnosed with CH...
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Re: The contaceptive pill
« Reply #8 on: Nov 20th, 2003, 7:41am »
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No, the person has to pretty much be a cluster head anyway. But maybe they haven't had their 1st CH, God knows we all remember having our first one.   Like I said, the pill started a cycle for me.  A glass of wine has started a cycle and so have a couple of other things.
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Tiannia
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Re: The contaceptive pill
« Reply #9 on: Nov 20th, 2003, 1:46pm »
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on Nov 19th, 2003, 7:58pm, Prense wrote:

 
 
It seems to me that if this were true, more women would be diagnosed with CH...

 
I have to agree.  My Migraines started about the time that I started my cylce at the age of 13, but I did not starte the pill until I was 25.  I went off while I was 26 and preg with my daughter. Stayed on teh pill until Dec 2001 when I got preg with my son and got back on then Sept 2002. My CH'es did not start until July 2003. For me there is little consistancy with this theory of the pill triggering the HA at all.  Granted certian types of pills miss up my body in other ways, but not HA realated.  
 
Tia
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Re: The contaceptive pill
« Reply #10 on: Nov 20th, 2003, 2:49pm »
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Mine CH can be set off by many things, one happened to be the pill.  I can't have the pill, patch, shots or anything because I know it will set off my CH cycle.   You know how many different things can set of a cycle.
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Re: The contaceptive pill
« Reply #11 on: Nov 20th, 2003, 6:27pm »
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PAIGELLE, triggers for clusters differ widely for different people.  
 
Maybe for you it is indeed the pill, though it seems rather  a rare ocurrence. For many migraineurs, yes.  But for a great many female clusterheads the pill has nothing nada niente to do with getting attacks.
 
Some reported here being painfree while pregnant. Other repoerted getting attacks right through pregnancy.  And pregnancy is a time when the mich maligned oestrogen levels in your body are at an all time high - what the pill does to you is absolutely nothing to it!
 
Or take my case. In all my fertile life I only ever had migraines. Wen I was on the pill and when I was off the pill. No difference in migraines. And I never had a cluster atack.
Till after menopause. Go figure.
 
As Prense says, a great many more woman should have clusters if you were to be right.
So it might be wiser not to state so inequivocally that "it is the pill".  
 
and just a thought -  by giving this sort of mis-information you may delay the correct diagnosis/treatment of somebody siffering terrible pains.
 
 
 
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Paigelle
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Re: The contaceptive pill
« Reply #12 on: Nov 20th, 2003, 6:56pm »
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I never said it was for everybody!  I was cluster and migraine free throughout my whole pregnancy.  I can't touch anything contraceptive wise.  For me, I know I will usually get my cycles every November, close to the holidays, if not it happens right afterwards.  I know the pill set off my cycle.  But no it is not the same with everyone.  It is not misinformation if it is true for one person, we are here to give our "opinion" not because we are MDs.  We all have different experiences with differents meds, different times of year if you are episodic, and different triggers.  
 
I have had CH for almost 25 years.  Yes and I am only 35 yrs old.  I know @ 10 that the pill didn't set it off.  It was just my time to have them.  It is also stated that CH don't appear to run in families.  Well, my grandmother and my mother had them.  My mother's disappeared after a hysterectomy.  But who knows if that had anything to do with.  No one knows, that is just it.  No one knows!
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pubgirl
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Re: The contaceptive pill
« Reply #13 on: Nov 20th, 2003, 9:15pm »
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Sorry Paigelle
 
It is not "stated that clusters does not run in families". It is looking pretty likely that the converse is true and that it DOES! It's just that it doesn't always manifest in every generation. This has been debated quite extensively recently on the General Board.
In fact the researchers would love to study your family genes I'm sure!
 
Wendy
« Last Edit: Nov 21st, 2003, 4:48am by pubgirl » IP Logged
Neetsx
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Re: The contaceptive pill
« Reply #14 on: Nov 21st, 2003, 5:07am »
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Hi , I don't think anyone is giving ' mis - information ' here just personnal experiences which are good to share .......  
In my message I said it would ' seem ' that this ' could ' have triggered an attack which is mentioned in the medical information section on this website under clinical features ' may be initiated by the use of oral contraception ' which would seem very coincidental for my daughter who was only on it 2 month's and  had her first attack . Maybe she would have had that attack anyway but I wanted to look into the association of that and any other ' trigger's ' .  Neetsx
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