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Topic: Clusters different for Women? (Read 1961 times) |
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Susan7105
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I was chided a while ago, when I first posted, that I should seek medical advice, since my cluster headaches didn't fit the 'normal' profile, the implication being they weren't real cluster headaches. I've since had my type of clusters confirmed twice, so no more of that, please! But that got me wondering if more women sufferers have a different profile, given this is historically a 'male' migraine. What I've observed personally is that I have two types of cluster headaches - those triggered by hormones and related to the repro cycle, and those triggered by environmental influences like paint fumes, alcohol, heat, which fit the 'male' cluster profile. The difference is that the hormonally triggered headaches occur regularly on the same days of my cycle, and have a noticeable build up to extreme pain, of about 4 hours, from 4 am to 8 am. The 'male' type, have sudden onset, etc., just as described on this site.
I'm wondering if any other women can categorize their headaches into two (or more) types, like I can. If so, then researchers will need to adjust studies to accomodate our differing profiles.
Thanks,
Susan
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BobG
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Re: Clusters different for Women?
« Reply #1 on: Mar 1st, 2005, 9:49am » |
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Quote:| this is historically a 'male' migraine |
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Nope. It is historically misdiagnosed in women.
Quote:| hormonally triggered headaches occur regularly on the same days of my cycle, and have a noticeable build up to extreme pain, of about 4 hours, from 4 am to 8 am. |
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IMHO, that does not sound like a cluster headache. I do not know what it is named but I bet someone here does.
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vig
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Re: Clusters different for Women?
« Reply #2 on: Mar 1st, 2005, 9:49am » |
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well, I don't have the repro cycle headaches, but I've noticed, in general, that the CH pattern is pretty standard and similar in males in females. Several people here have a combination of headache types, but the cluster portions still remain somewhat the same.
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| « Last Edit: Mar 1st, 2005, 9:52am by vig » |
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Roxy
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Re: Clusters different for Women?
« Reply #3 on: Mar 1st, 2005, 9:50am » |
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on Mar 1st, 2005, 9:40am, Susan7105 wrote:| given this is historically a 'male' migraine |
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Wow, I knew these guys were all having migraines.....  .
Mine sure fit the male profile. Of course, we know that only men get clusters anyway.....  .
As far as I know, clusters are not hormonally triggered....seeing as I have no hormones.....and I'm chronic.
Don't think the researchers need to worry about this.
T
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thomas
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Re: Clusters different for Women?
« Reply #4 on: Mar 1st, 2005, 9:56am » |
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on Mar 1st, 2005, 9:40am, Susan7105 wrote:| given this is historically a 'male' migraine. |
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Well I guess I am chiding, sorry. But, this is not a migraine board, so please don't ever use that word to describe my condition ever again. I wish I had migraines instead. 
on Mar 1st, 2005, 9:40am, Susan7105 wrote:
What I've observed personally is that I have two types of cluster headaches - those triggered by hormones and related to the repro cycle, and those triggered by environmental influences like paint fumes, alcohol, heat, which fit the 'male' cluster profile. The difference is that the hormonally triggered headaches occur regularly on the same days of my cycle, and have a noticeable build up to extreme pain, of about 4 hours, from 4 am to 8 am. The 'male' type, have sudden onset, etc., just as described on this site.
I'm wondering if any other women can categorize their headaches into two (or more) types, like I can. If so, then researchers will need to adjust studies to accomodate our differing profiles.
Thanks,
Susan |
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Don't have a clue about hormone or menstral cycle HA's, but I will tell you that my Ha's happen on a regular schedule during my cycle, but I can be triggered by certain things, but mostly they stick to the schedule.
And I am not a woman, perhaps you could describe your pain, lenght of episodes and attacks, number of attacks per day etc.
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| « Last Edit: Mar 1st, 2005, 9:57am by thomas » |
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Bob P
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Re: Clusters different for Women?
« Reply #5 on: Mar 1st, 2005, 10:12am » |
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Since Roxy covered it, I'll refrain.
Guys get episodic clusters in ther late teens/earlly twenties. (too much testosterone?)
Women get chronic clusters in thier late forties/early fiftys. (too much testosterone?)
Women who get clusters in thier teens/twenties have meegriaines. Hub and Paco have meegraines.
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Susan7105
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Re: Clusters different for Women?
« Reply #6 on: Mar 1st, 2005, 10:15am » |
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LOL, this group seems determined to own the definition of cluster headaches, and to control the membership of the group by saying who has a cluster and who doesn't. Well, I'm glad that scientists are more open to researching the many patterns of clusters than you folks seem to be. Of course the nay-sayers are usually the first to pipe up, and I'm sure there are many more members who don't subscribe to the views of the few.
If you say that there is a well-defined classic profile to a cluster, then how you can also say that women are mis-diagnosed, if that profile is so clear that you can tell me I don't have a cluster from my post? The stats are that men get clusters 2/3 times more than women. Why is that a wrong stat? Can't there be any sex differences in this headache?
Not sure how anyone is hormone-free, but perhaps a trigger is just that, a trigger, and once a cycle is started, the trigger need not be present for the headaches to continue, OR you don't suffer from hormone-triggered cluster headaches.
And I want to make sure that you're all CERTAIN there are no differences between male and female cluster headache sufferers? You're positive about that?
I've posted this before, from info on this site, but there is a cluster with a preponderance of female sufferers, which is different than the more common cluster:
3.2 Chronic paroxysmal hemicrainia
Previously used terms: Sjaastad’s syndrome
Description: Attacks with largely the same characteristics of pain and associated symptoms and signs as cluster headache, but the are shorter lasting, more frequent, occur mostly in females, and there is absolute effectiveness of indomethacin.
Diagnostic criteria: A. At least 50 attacks fulfilling B-E. B. Attacks of severe unilateral orbital, supraorbital and/or temporal pain always on the same side lasting 2 to 45 minutes. C. Attack frequency above 5 a day for more than half of the time (periods with lower frequency may occur). D. Pain is associated with at least one of the following signs/symptoms on the pain side: 1. Conjunctival injection 2. Lacrimination 3. Nasal congestion
4. Rhinorrhea 5. Ptosis 6. Eyelid edema E. Absolute effectiveness of indomethacin (150 mg/day or less). Comment: Most attacks last 5-20 minutes and frequency may be as high as 30 per 24 hours. Although longer lasting remissions are not seen in chronic paroxysmal hemicrainia, frequency, duration and severity of the attacks may vary. Nausea and vomiting rarely accompany the attacks. There is great female predominance. Onset is usually in adulthood. The chronic stage may probably be preceded by an episodic stage similar to the pattern seen in cluster headache, but this has not yet been sufficiently validated.
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BobG
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Re: Clusters different for Women?
« Reply #7 on: Mar 1st, 2005, 10:36am » |
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Cluster headaches are cluster headaches.
Chronic paroxysmal hemicrainia.
Two different headaches that have some similar symptoms.
Quote:| if that profile is so clear that you can tell me I don't have a cluster from my post? |
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Nobody said you didn't have cluster headaches.
Quote:| LOL, this group seems determined to own the definition of cluster headaches, and to control the membership of the group by saying who has a cluster and who doesn't. |
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Wrong.
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vig
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Re: Clusters different for Women?
« Reply #8 on: Mar 1st, 2005, 10:40am » |
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on Mar 1st, 2005, 9:40am, Susan7105 wrote:What I've observed personally is that I have two types of cluster headaches - those triggered by hormones and related to the repro cycle, and those triggered by environmental influences like paint fumes, alcohol, heat, which fit the 'male' cluster profile. Thanks,
Susan |
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Many of the headaches in a cluster episode are not triggered by anything. They reoccur at the same time of day regardless of environmental influences.
in both Male and Female.
Oh, and CPH is not a type of cluster... they are both types of TACs, though. Trigeminal Autonomic Cephalgias...
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| « Last Edit: Mar 1st, 2005, 11:15am by vig » |
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BarbaraD
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Re: Clusters different for Women?
« Reply #9 on: Mar 1st, 2005, 10:49am » |
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You know how I hate to disagree with any of you , but Susan may have something here. When I first started getting hit, the doc gave me some harmone patches and almost immediately the headaches stopped. Had a two year repreive, then they hit back with a vengence.
Bob may have something with the harmones after the change (in women - men are on their own). I went chronic after the change (premature I might add since I"m only 29).
I can remember back in my youth (before the hysterectomy) having blinding headaches (sometime to the black out point), but these were treated with percodan and called a chemical imbalance. They quit after the hysterectomy.
And why do women sometime quit having CH during pregnancy.
Like I said, there may be something to what Susan is saying.
Hugs BD
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Bob P
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Re: Clusters different for Women?
« Reply #10 on: Mar 1st, 2005, 11:13am » |
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3.1 Cluster Headache
Previously used terms: Erythroprosopalgia of Bing, ciliary or migrainous neuralgia (Harris), erythromelalgia of the head, Horton’s headache, histaminic cephalalgia, petrosal neuralgia (Gardner), sphenopalatine, Vidian and Sluder’s neuralgia, hemicrainia periodica neuralgiformis.
Description: Attacks of severe strictly unilateral pain orbitally, supraorbitally and/or temporally, lasting 15-180 minutes and occurring from once every other day to 8 times a day. Are associated with one or more of the following: conjunctival injection, lacrimination, nasal congestion, rhinorrhea, forehead and facial sweating, miosis, ptosis, eyelid edema. Attacks occur in series lasting for weeks or months (so-called cluster periods) separated by remission periods usually lasting months or years. About 10 per cent of the patients have chronic symptoms.
Diagnostic criteria:
A. At least 5 attacks fulfilling B-D.
B. Severe unilateral orbital, supraorbital and/or temporal pain lasting 15 to 180 minutes untreated.
C. Headache is associated with at least one of the following signs which have to be present on the pain-side:
1. Conjunctival injection
2. Lacrimination
3. Nasal congestion
4. Rhinorrhea
5. Forehead and facial sweating
6. Miosis
7. Ptosis
8. Eyelid edema
D. Frequency of attacks: from 1 every other day to 8 per day.
E. At least one of the following:
1. History, physical and neurological examinations do not suggest one of the disorders listed in groups 5-11
2. History and/or physical and/or neurological examinations do suggest such disorder, but it is ruled out by appropriate investigations
3. Such disorder is present, but cluster headache does not occur for the first time in close temporal relation to the disorder
3.1 Cluster headache periodicity undetermined
A. Criteria for 3.1 fulfilled
B. Too early to classify as 3.1.2 or 3.1.3
3.1.1 Episodic cluster headache
Description: Occurs in periods lasting 7 days to one year separated by pain free periods lasting 14 days or more
Diagnostic criteria:
A. All the letter headings of 3.1
B. At least 2 periods of headaches (cluster periods) lasting (untreated patients) from 7 days to one year, separated by remissions of at least 14 days.
Comment: Cluster periods usually last 2 weeks to 3 months.
3.1.2 Chronic cluster headache
Description: Attacks occur for more than one year without remission or with remissions lasting less that 14 days.
Diagnostic criteria:
A. All letter headings of 3.1.
B. Absence of remission phases for one year or more or with remissions lasting less than 14 days.
3.1.3.1 Chronic cluster headache unremitting from onset
Previously used term: Primary chronic
Diagnostic criteria:
A. All letter headings of 3.1.3.
B. Absence of remission periods lasting 14 days or more from onset.
3.1.3.2 Chronic cluster headache evolved from episodic
Previously used term: Secondary chronic
Diagnostic criteria:
A. All letter headings of 3.1.3
B. At least one interim remission period lasting 14 days or more within one year after onset followed by unremitting course far at least one year.
Comment: During a cluster period and in patients with the chronic form attacks occur regularly and may be provoked by alcohol, histamine or nitroglycerine. Pain is maximal orbitally, supraorbitally and/or temporally, but may spread to other regions. Pain usually recurs on the same side of the head during an individual cluster period. During the worst attacks, the intensity of pain is excruciating. Patients are unable to lie down and typically pace the floor. Age at onset is typically 20-40 years. For unknown reasons men are afflicted 5-6 times more often than women. The mechanisms of the pain are incompletely known despite abnormalities demonstrated by studies of corneal indentation pulse, corneal temperature, forehead sweating, lacrimination and nasal secretion or by pupillometry, thermovision, extracranial and transcranial Doppler.
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Jeepgun
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Re: Clusters different for Women?
« Reply #11 on: Mar 1st, 2005, 11:23am » |
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on Mar 1st, 2005, 10:15am, Susan7105 wrote:| LOL, this group seems determined to own the definition of cluster headaches, and to control the membership of the group by saying who has a cluster and who doesn't. |
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Not true. Please take some time and do some reading of the board, take the questionnaires, and look at the medical studies that have already been done.
Also, for your own benefit, maybe remove the chip from your shoulder so it doesn't interfere with clear, objective vision.
My best to you,
-Frank
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E-Double
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Re: Clusters different for Women?
« Reply #12 on: Mar 1st, 2005, 12:04pm » |
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Clusters are it's own monster.....
paroxysmal hemicrainia (whether chronic or episodic) are different....
SUNCT syndrome is different........
Idiopathic Stabbing Headache (ice pick HA) is different.....
All are defined by specific criteria designated by the IHS..Yes there are variants but not to the point where it makes PH = CH = ISH = SUNCT etc...All are different!
No body is really trying to convince you of anything other then possibly researching more so that relief comes your way.....
Some of us have Primary HA as Cluster Headache then some other parties in the noggin.....(I have some other shit too).....The point is that the other HA is responsive to certain meds that do not touch a CH attack nor prevent them....
If it is CH then that sucks..if it is not well that sucks too for it's own reasons yet proper treatment can be around the corner......
It is not about joining a club or keeping people out of an exclusive club...IT IS ABOUT SPARING SOME PEOPLE FROM NASTY MEDS AND GUIDING THEM TOWARDS THEIR OWN RELIEF!!!!
Either way hang in there please!!!!
It's not a debate...
Best,
Eric
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| « Last Edit: Mar 1st, 2005, 12:06pm by E-Double » |
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Bob P
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Re: Clusters different for Women?
« Reply #13 on: Mar 1st, 2005, 12:44pm » |
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Quote:| If you say that there is a well-defined classic profile to a cluster, then how you can also say that women are mis-diagnosed, if that profile is so clear that you can tell me I don't have a cluster from my post? |
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We say that because many doctors are not educated in that well defined profile. They assume that if a person is having frequent headaches, they must be clusters. It just ain't that easy. Maybe you're having a cluster of migraines?
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Karla
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Re: Clusters different for Women?
« Reply #14 on: Mar 1st, 2005, 12:48pm » |
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My hormones effected my migraines NOT ch. I have never had a food trigger ch for me. Only thing that aggrivates my ch is heat.
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Roxy
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Re: Clusters different for Women?
« Reply #15 on: Mar 1st, 2005, 12:52pm » |
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I met a woman last week in New Orleans, her doctor had diagnosed clusterheadaches. She was so surprised when I said, yes, I have those too. After listening to her for a few minutes, I knew she did not have clusters.
No, I am not a doctor, but I do know what does and doesn't constitute a clusterheadache.
I wish more doctors would become aware of the information.
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Re: Clusters different for Women?
« Reply #16 on: Mar 1st, 2005, 1:09pm » |
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on Mar 1st, 2005, 12:52pm, Roxy wrote:I met a woman last week in New Orleans, her doctor had diagnosed clusterheadaches. She was so surprised when I said, yes, I have those too. After listening to her for a few minutes, I knew she did not have clusters.
No, I am not a doctor, but I do know what does and doesn't constitute a clusterheadache.
I wish more doctors would become aware of the information. |
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Right on, Roxy. That's why I keep on beating the drum for physician education. This goes for neurologists who bill themselves as headache specialists, ENT specialists, and general practitioners. Hell, even dentists!
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thomas
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Re: Clusters different for Women?
« Reply #17 on: Mar 1st, 2005, 1:12pm » |
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Yes if this is a club I would gladly give my membership to any one that wants it.
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sandie99
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Re: Clusters different for Women?
« Reply #18 on: Mar 1st, 2005, 1:36pm » |
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on Mar 1st, 2005, 10:12am, Bob P wrote:
Women who get clusters in thier teens/twenties have meegriaines. |
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Hmmmm.... I'm 24 and what I have IS clusterheadache.  Sorry, BobP.
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pattik
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Re: Clusters different for Women?
« Reply #19 on: Mar 1st, 2005, 2:48pm » |
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Okay, I will give you my opinion from all too long years of experience. First I suffered from classic migraine for 17 years. After three years of a no headache remission, I began cycles of clusters. I knew they were quite different, but it took a few years to get them diagnosed. I have had episodic clusters now for over 23 years, and they have never been connected with hormonal cycles. Oh, they're cyclical alright. I could set my watch by the onset each night while they are going on, but there is no gender influence going on here. If you have them, male or female, and you educate yourself regarding the known facts, you will know what you have and be able to begin dealing with them effectively.
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thomas
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Re: Clusters different for Women?
« Reply #20 on: Mar 1st, 2005, 2:58pm » |
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on Mar 1st, 2005, 2:48pm, pattik wrote:| there is no gender influence going on here. If you have them, male or female, and you educate yourself regarding the known facts, you will know what you have and be able to begin dealing with them effectively. |
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Bravo! Pattik, well said!
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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pattik
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Re: Clusters different for Women?
« Reply #21 on: Mar 1st, 2005, 3:07pm » |
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on Mar 1st, 2005, 1:12pm, guesst wrote:| Yes if this is a club I would gladly give my membership to any one that wants it. |
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I would love to resign this club someday and start a club for ex-clusterheads. But the membership would be so happy and relieved, that they wouldn't have much motivation to attend.
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| « Last Edit: Mar 1st, 2005, 3:12pm by pattik » |
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Ueli
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Re: Clusters different for Women?
« Reply #22 on: Mar 1st, 2005, 3:56pm » |
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on Mar 1st, 2005, 10:15am, Susan7105 wrote:| LOL, this group seems determined to own the definition of cluster headaches, and to control the membership of the group by saying who has a cluster and who doesn't. |
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Nope, we stick to the definition of the IHS (International Headache Society). By their definition, and the mechanism of the build up, a cluster attack ramps up to full blast in a matter of minutes, not hours.
I wish I was only a cluster-wannabe, and not a true clusterhead.
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Re: Clusters different for Women?
« Reply #23 on: Mar 1st, 2005, 4:01pm » |
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on Mar 1st, 2005, 3:56pm, Ueli wrote:| I wish I was only a cluster-wannabe, and not a true clusterhead. |
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Ditto. 
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pubgirl
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Re: Clusters different for Women?
« Reply #24 on: Mar 1st, 2005, 5:52pm » |
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My take on this for what it's worth:
(and albeit anecdotally I think it's worth quite a lot as some of you know I talk to one helluva lot of CH'ers AND migrainers and am both myself)
I bang the drum as loudly as the rest of you do about not confusing the CH and migraine symptoms BUT
I personally think and have experience of more women than men having severe migraine, then developing clusters in addition. What then seems to happen is that the migraines can increase in intensity when they do happen, as if somehow the Ch has sensitised the pain area somehow
ALSO
CH is not known to be triggered by hormones, but many female episodic CH sufferers, when ovulating or premenstrual, not only get more migraines, but report that their CH is worse too if they are in cycle.
I therefore DO think that there is more "blurring" of symptoms for women who get both types of headache, are in their CH cycle AND additionally react badly to hormone fluctuations in their menstrual cycle/life. In essence, the migraines can become more "clusterlike" in intensity, and the clusters can be more migrainelike in symptoms.
Hope I made sense
Wendy
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| « Last Edit: Mar 1st, 2005, 5:54pm by pubgirl » |
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