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Title: Clusters different for Women? Post by Susan7105 on Mar 1st, 2005, 9:40am 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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Title: Re: Clusters different for Women? Post by BobG on Mar 1st, 2005, 9:49am Quote:
Nope. It is historically misdiagnosed in women. Quote:
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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Title: Re: Clusters different for Women? Post by vig on Mar 1st, 2005, 9:49am 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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Title: Re: Clusters different for Women? Post by Roxy on Mar 1st, 2005, 9:50am on 03/01/05 at 09:40:15, Susan7105 wrote:
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..... ;;D. 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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Title: Re: Clusters different for Women? Post by guesst on Mar 1st, 2005, 9:56am on 03/01/05 at 09:40:15, Susan7105 wrote:
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 03/01/05 at 09:40:15, Susan7105 wrote:
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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Title: Re: Clusters different for Women? Post by Bob P on Mar 1st, 2005, 10:12am 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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Title: Re: Clusters different for Women? Post by Susan7105 on Mar 1st, 2005, 10:15am 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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Title: Re: Clusters different for Women? Post by BobG on Mar 1st, 2005, 10:36am Cluster headaches are cluster headaches. Chronic paroxysmal hemicrainia. Two different headaches that have some similar symptoms. Quote:
Nobody said you didn't have cluster headaches. Quote:
Wrong. |
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Title: Re: Clusters different for Women? Post by vig on Mar 1st, 2005, 10:40am on 03/01/05 at 09:40:15, Susan7105 wrote:
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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Title: Re: Clusters different for Women? Post by BarbaraD on Mar 1st, 2005, 10:49am You know how I hate to disagree with any of you ;;D, 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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Title: Re: Clusters different for Women? Post by Bob P on Mar 1st, 2005, 11:13am 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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Title: Re: Clusters different for Women? Post by Frank_W on Mar 1st, 2005, 11:23am on 03/01/05 at 10:15:00, Susan7105 wrote:
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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Title: Re: Clusters different for Women? Post by E-Double on Mar 1st, 2005, 12:04pm 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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Title: Re: Clusters different for Women? Post by Bob P on Mar 1st, 2005, 12:44pm Quote:
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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Title: Re: Clusters different for Women? Post by Karla on Mar 1st, 2005, 12:48pm 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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Title: Re: Clusters different for Women? Post by Roxy on Mar 1st, 2005, 12:52pm 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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Title: Re: Clusters different for Women? Post by Frank_W on Mar 1st, 2005, 1:09pm on 03/01/05 at 12:52:07, Roxy wrote:
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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Title: Re: Clusters different for Women? Post by guesst on Mar 1st, 2005, 1:12pm Yes if this is a club I would gladly give my membership to any one that wants it. |
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Title: Re: Clusters different for Women? Post by sandie99 on Mar 1st, 2005, 1:36pm on 03/01/05 at 10:12:29, Bob P wrote:
Hmmmm.... I'm 24 and what I have IS clusterheadache. ::) Sorry, BobP. |
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Title: Re: Clusters different for Women? Post by pattik on Mar 1st, 2005, 2:48pm 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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Title: Re: Clusters different for Women? Post by guesst on Mar 1st, 2005, 2:58pm on 03/01/05 at 14:48:21, pattik wrote:
Bravo! Pattik, well said! |
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Title: Re: Clusters different for Women? Post by pattik on Mar 1st, 2005, 3:07pm on 03/01/05 at 13:12:35, guesst wrote:
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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Title: Re: Clusters different for Women? Post by Ueli on Mar 1st, 2005, 3:56pm on 03/01/05 at 10:15:00, Susan7105 wrote:
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. [smiley=smokin.gif] |
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Title: Re: Clusters different for Women? Post by Frank_W on Mar 1st, 2005, 4:01pm on 03/01/05 at 15:56:26, Ueli wrote:
Ditto. :'( |
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Title: Re: Clusters different for Women? Post by pubgirl on Mar 1st, 2005, 5:52pm 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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Title: Re: Clusters different for Women? Post by Margi on Mar 1st, 2005, 6:00pm on 03/01/05 at 17:52:25, pubgirl wrote:
Not to take your quote out of context Wendy, but I tend to question that part of what you said. So many sufferers (male and female) report that the first cluster comes at the end of puberty and a lot of folks report that they dwindle as they get older. Both of these times are hormonal flux times for both sexes. I don't doubt that cluster is partly hormonal. The hippothalmajiggy contributes to hormone production, doesn't it? Nice to see you posting, Pubgirl. :-* |
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Title: Re: Clusters different for Women? Post by don on Mar 1st, 2005, 6:08pm Its a moot point because woman dont get clusters. |
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Title: Re: Clusters different for Women? Post by pubgirl on Mar 1st, 2005, 6:13pm Hi Margi :-* I'll modify that, if Ch in women was hormone triggered in the same way migraine is, we wouldn't have female seasonal epsiodics...... but that rather clouds what I am saying. What I AM saying does in some ways support what has been said and argued with, that my experience is that the experience of having CH and migraine for women very often IS different to men. Wendy |
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Title: Re: Clusters different for Women? Post by Jonny on Mar 1st, 2005, 6:13pm on 03/01/05 at 18:08:22, don wrote:
Yeah but.....Who's Highpitch? |
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Title: Re: Clusters different for Women? Post by don on Mar 1st, 2005, 6:24pm Quote:
The one with the sinus infection. |
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Title: Re: Clusters different for Women? Post by Kris_in_SJ on Mar 1st, 2005, 7:58pm Hi Susan, When I was in my 20's and 30's I had fairly severe "migraine-type" headaches right before every period. They were nothing like ... repeat, nothing like ... clusters. When I turned 42, I experienced my first cluster cycle. Until I received treatment, suicide wasn't far from my mind. I'm lucky that my cycles are pretty far apart (3-5 years). Between the cycles, I never experience a headache of any kind. There has often been discussion about hormones and their relation to cluster headache syndrome. After all - the hypothalamus is involved with both things. But, clusters are clusters - and migraines (whether caused by hormones or heredity) are migraines. They are not the same at all! Sounds like you might have 2 different syndromes going on - it's common here. But, I beg you ... please don't ever refer to clusters as a "man's migraine." Keep researching. PF Wishes, Kris |
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Title: Re: Clusters different for Women? Post by TonyG1 on Mar 1st, 2005, 9:39pm on 03/01/05 at 15:56:26, Ueli wrote:
Yep, give me 5 minutes and I can go from PF to doing the dance of the damned ... [smiley=sgrin.gif] |
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Title: Re: Clusters different for Women? Post by AussieBrian on Mar 1st, 2005, 9:42pm Yes, I know I'm a bloke, but I pass this on in good faith in case of some little help to our ladies. A number of women I know have received substantial relief from their menstrual headaches by switching from tampons to panty-liners. And that's really I know about it. Brian. |
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Title: Re: Clusters different for Women? Post by crazy_mj on Mar 1st, 2005, 9:44pm HERE IS MY STORY: I was diagnosed with migraines at the age of seven, and had learned to deal quite well with them. At 22 I found myself pregnant, and migraine free for the first time in my life. My daughter was born in October 02 by January the attack began with an all new type of pain plus the migraines. It only lasted for a few months, so before I had talked myself into getting help, they were gone and the migraines stayed behind. Then a year later the attack began again, and I have been going strong ever since. Last July I finally went to get help, and that is when I was diagnosed with migraines again and a new friend, clusters. Just this last month I noticed that the migraines are completely gone, but the clusters were left behind. AND....this is where I found myself today. Wondering if this will ever end............... |
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Title: Re: Clusters different for Women? Post by Purple_2005 on Mar 2nd, 2005, 8:56pm on 03/01/05 at 21:42:58, AussieBrian wrote:
Do you mean switching from tampons to pads.....I doubt panty liners would serve the same purpose as tampons. |
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Title: Re: Clusters different for Women? Post by AussieBrian on Mar 2nd, 2005, 9:18pm Yes, I meant tampons to pads, and please accept that I have just expounded my entire knowlege on the subject and mean it in the nicest way. Brian. |
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Title: Re: Clusters different for Women? Post by Tiannia on Mar 3rd, 2005, 12:29pm Sweetie - I wish my CH was connected to my hormones. But no such luck. I have been hit for the past 20 months without end. There is a cycle within my unrentless pain but they dont actually stop nor do they get worse during my tiem of the month. So that theory is blown out the wondow for me. Guess maybe I have too much male testoserone. :-/ Anyway. There are lots of different types of Clusters and each persons cycle is different. but dont confuse other types of HA with CH. Trust me you know when it is a CH. There is no question. No food has never triggered a CH for me. Although my last neuro felt that I had Occipital Neuralgia that was causeing me to hve more CH. That the ON was triggering some of my CLusters, but not all. There is no club, and we are not docs. But maybe there are other types of HA you are having along with the clusters and you are not sure where one ends and one begins -Tia |
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Title: Re: Clusters different for Women? Post by Susan7105 on Mar 3rd, 2005, 1:39pm Thank you pubgirl Wendy! You said exactly what I've been experiencing - "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. " This insight deserves more research obviously. I also think that if you have migraines that are triggered by substances or food or whatever, that your migraine-like clusters can then be triggered in the same way. I also had migraines for 15 years (16-31) and now I have what I and my two neurologists are calling clusters, from 39-present. And they were straightforward clusters back when they started. But they've morphed since then. And yes, I can tell the difference. I also don't think it's bad to say that more men than women get clusters, statistically, it's true, even accounting for misdiagnosis in women, esp. if the group won't accept migraine-like clusters reported by at least two of us (can't have it both ways, not right). So if you all are going by the IHS (International Headache Society) definition of clusters, then no, I don't belong here. Anybody want to start the Really Bad Headache forum, for anyone with really bad headaches no matter what scientific definition they eventually get assigned? :D |
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Title: Re: Clusters different for Women? Post by floridian on Mar 3rd, 2005, 1:45pm Quote:
There is one out there - Ree and some others on this board got it started, it just needs people to start posting and hanging out there more often. Anybody got the link? |
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Title: Re: Clusters different for Women? Post by Frank_W on Mar 3rd, 2005, 1:49pm Howdy, Susan. There IS a board like that, but I don't remember the URL for it... Here's one I found on Google: http://www.healthboards.com/boards/forumdisplay.php?f=62 |
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Title: Re: Clusters different for Women? Post by guesst on Mar 3rd, 2005, 1:55pm http://hsgfamily.proboards18.com/index.cgi |
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Title: Re: Clusters different for Women? Post by Susan7105 on Mar 3rd, 2005, 4:28pm Thanks, guesst. I registered and am taking my discussion of Clusters different for women? over there. I understand from experience how painful vascular headaches are, and I believe I know how frustrating clusters are, but I'm not happy or comfortable posting knowing that I'm going to be told (so far, with each post) that I do not have clusters, or that there are no sex differences in clusters, or that my perception of the group defining my experience of clusters is wrong. You may not be experiencing what I'm experiencing from this group, but what I'm experiencing is not 'wrong'. I also don't see any benefit in playing the 'my pain is worser than yours' game. Something for you all to think about. |
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Title: Re: Clusters different for Women? Post by Frank_W on Mar 3rd, 2005, 4:38pm :-X ::) |
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Title: Re: Clusters different for Women? Post by Tiannia on Mar 3rd, 2005, 5:29pm Susan - Welcome to Clustervville. Everyone deals with the Trail by fire adn gets their ideas taken the wrong way or people getting pissy. It is life here. We are all very strong personalities (most likely due to the pain that we deal with, no matter what type of HA or combinations of HA you have). If you decide to take it personal then you will only get more and more upset each time you come to the board. If you can say ok that is going no where and look at it from a different angle then you are much better off. People here are great, sometimes we are not a very nice persons and cynical and sarcastic and everything else between. But when it comes down to it there is a support here that you can not find elsewhere easily (sometimes even in your own home.) So dont run off cause people did not agree with you. But sit back and read a little and dont take offince to what was said. Take it with a grain of salt and move on. PF wishes to you Susan, -Tia |
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Title: Re: Clusters different for Women? Post by thudpucker on Mar 3rd, 2005, 7:38pm on 03/01/05 at 10:12:29, Bob P wrote:
This guy started getting episodic clusters just before his 60th birthday. An excess of testosterone is not the problem. |
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Title: Re: Clusters different for Women? Post by Kris_in_SJ on Mar 3rd, 2005, 8:30pm Excuse me, Susan ... But I believe that I said in my post above that you might have more than one kind of syndrome happening to you. I also haven't really seen any negative comments being made to you - just honest observations from veterans. I hope you find happiness and support on the board that's been suggested to you. Perhaps at that place, all will be "good and positive light." But, I can assure you, you won't find the knowledge and support you need that's specific to cluster headaches. Many who come here (unless they are classic episodics from the start) has to run a bit of a gauntlet, but the payoff is worth it. Wishing you many PFDAN! Kris |
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Title: Re: Clusters different for Women? Post by don on Mar 3rd, 2005, 9:39pm Quote:
If you dont have CH, and I dont believe you do, then my pain is worse than yours |
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Title: Re: Clusters different for Women? Post by Paula on Mar 4th, 2005, 1:06am I started having clusters at 16 years old. Had no problem getting them diagnost but not a whole lot of luck with preventatives. Anyway, I had my son at age 27 and my girl at age 35. Both times I had to stop breast feeding because I started getting the clusters around two week into being a new mother. Breast feeding made them extreemly bad. I have to think somehow atleast for me it had alot to do with hormon change at that time. but my monthly doesn't effect it one way or another. My story! Paula |
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Title: Re: Clusters different for Women? Post by Frank_W on Mar 4th, 2005, 10:00am on 03/03/05 at 21:39:52, don wrote:
BINGO. |
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Title: Re: Clusters different for Women? Post by Susan7105 on Mar 7th, 2005, 1:01pm http://www.painstudy.ru/pe3/women.htm FYI, one of several studies out there that confirm that women have a lower threshold of pain than men, meaning that women are more pain sensitive than men. I take this to mean it hurts worse for us, but you can read the studies and decide for yourself. Another gender difference that relates to female cluster headache sufferers not just about the sensation of pain, but also in the area of pain medication. Scientists are now looking at what levels of pain relief women need, as different from men. So far the differences experienced or noted (on this thread) - clusterlike migraines, and migrainelike clusters, lower threshold of pain. Tiannia, heard what you were saying, thanks. Susan |
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Title: Re: Clusters different for Women? Post by Alien Space Babe on Mar 7th, 2005, 5:25pm on 03/07/05 at 13:01:17, Susan7105 wrote:
This study does not confirm that women have a lower threshold of pain. It merely suggest that there is a possiblity that this occurs, using fibromyalgia patients (who are 80% women) to study. Quote:
#1 - this article is about fibromyalgia - its conclusions should not be generalized Quote:
This is not a fully conclusive statement regarding all women. It suggests that when comparing male and female fibromyalgia patients, the women tend to respond to one type of painful stimulus more than males. Quote:
As a human being, whether male or female, I find it highly offensive for anyone to conclude that one sex has a higher or lower tolerance for all types of pain. jmho |
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Title: Re: Clusters different for Women? Post by Frank_W on Mar 7th, 2005, 5:34pm Susan, if you have some kind of axe to grind about social gender issues, can you please find some other forum more appropriate, (and receptive) please? This board and forum is for CLUSTER HEADACHES Thank you kindly. |
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Title: Re: Clusters different for Women? Post by Ueli on Mar 7th, 2005, 8:17pm Riley who found a gender difference for pain from a bit of heat or a slight electric shock. Somebody who construes from this a gender difference for CH has never experienced the pain of clusters. For a clusterhead Riley's stimuli would be a mere annoyance, like a fly trying to land on the nose. :-X |
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Title: Re: Clusters different for Women? Post by Kris_in_SJ on Mar 7th, 2005, 8:41pm Ditto to both Frank and Ueli, I consider myself to be a pretty outspoken "feminist", but cluster headache syndrome is NOT an issue related to gender and social psychology. It is a physical disease that affects both men and women. The symptoms are classic and have absolutely nothing to do with the pain threshold of either gender. I've made 2 previous posts stating that you most likely have more than one syndrome going on. Since you've chosen to ignore them, I can only conclude that you have some other agenda going on. You are not needed here! Kris |
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Title: Re: Clusters different for Women? Post by Redd715 on Mar 7th, 2005, 9:07pm Agree with you there Kris. I don't give a rats ass what Susan cares to spew forth I will refuse to read a thing she writes from here on out. Lower pain threshold? She's obviously never watched any man for any period of time in pain. Gawd I've watched this 7 foot 250 lb hulk of a co worker leave the office for a day because of *gas pressure*. Poor thing... [smiley=hurl.gif] |
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Title: Re: Clusters different for Women? Post by Frank_W on Mar 8th, 2005, 10:11am As far as pain thresholds go, according to gender: I have a very high pain tolerance. I've walked miles on horrific sprains, and done other things in the face of excrutiating pain. "The mission comes first." Then again, I've never given birth, and I'm very glad of that. |
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Title: Re: Clusters different for Women? Post by vig on Mar 8th, 2005, 10:39am looks like the originator of the thread has cut and run |
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Title: Re: Clusters different for Women? Post by pattik on Mar 8th, 2005, 11:01am Where the gender/pain issue is concerned, if women do indeed have a higher pain tolerance, then you CH guys deserve all the sympathy you can get, cause if you feel it worse than I do, you're in deep doo-doo. |
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Title: Re: Clusters different for Women? Post by Frank_W on Mar 8th, 2005, 11:44am Well... You know... Cluster headaches are not a matter of what one's pain threshold is. I think the unspeakable pain of CH really transcends that... No matter who you are, whichever gender you happen to be, or whatever you have endured in the past, it just doesn't matter: When it feels like someone is jamming the Eiffel Tower into your eye, it fucking HURTS. Period. |
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Title: Re: Clusters different for Women? Post by floridian on Mar 8th, 2005, 12:01pm on 03/07/05 at 17:25:52, Alien Space Babe wrote:
Men are taller than women. Men are physically stronger than women. Men have darker, coarser skin. These statments are not true for all comparisons (my sister in law is taller and more athletic, she could probably kick my butt). But they are generally true when comparing all men as a group to all women, and they reflect differences between the genders. Ultimately, having a Kip 10 cluster headache is debilitating and excruciating, regardless of gender. But I think people are getting too upset about this discussion. The fibromyalgia research may or may not apply to us (probably not, but I'm not sure). But I don't see susan as a trotskyite of radical feminism, trying to subvert us with dangerous political theories. For years, women were not diagnosed as having clusters (because it was a man thing). Now we know that women can get clusters (but as a group are at lower risk than men). Maybe there are other differences. Off to lunch, discuss among yourselves :) |
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Title: Re: Clusters different for Women? Post by Gator on Mar 8th, 2005, 3:06pm After I read the inital few posts I've avoided reading this, but when I checked in today I knew this statement would get a rise of of the ladies: Quote:
First off, as long as I can remember, women have always said "men don't know what pain is" referring to them suffering through childbirth. Now this person is saying women can't hack it as well as men. I knew you wimmins were full of shit. ;;D [ducking and running for cover] |
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Title: Re: Clusters different for Women? Post by Redd715 on Mar 8th, 2005, 3:17pm Quote:
I always knew you were a smart man my friend. ;) |
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Title: Re: Clusters different for Women? Post by Lizzie2 on Mar 9th, 2005, 2:19pm Holy mess of a thread! I have chronic daily migraine and chronic cluster headaches. Neither one is influenced in the slightest by my menstrual cycle/hormones/what have you. They are distinctly different in my mind. Each has its own unique symptoms. Every once in awhile, they may share one similar symptom...such as, I'm sensitive to light no matter which type of attack I'm experiencing. However, IMHO, clusters and migraines are very different beasts inside my head! That being said...Thomas dear...don't say you'd rather have migraines. No you wouldn't. They suck too. Over 4 years without a minute pain free and I can't even begin to state the number of times I've considered taking my life. Yes, the clusters are a much more intense pain for me, but the migraine does not ever leave. I wouldn't want to have either if I had the choice. :( Pain is pain. When pain is properly assessed (via JCAHO standards) a 0-10 scale is unique to the individual. When a nurse (doctor, whatever) asks you what your pain is on a scale of 0-10, they say (or they SHOULD say), "A 10 being the worst pain you've ever experienced." Not something like, "A 10 being the worst pain imaginable." Because that's not measureable. The doctor who said that to me said that a 10 would be if I got my legs run over by a train. My roommate (who is an EMT) and I thought that was funny. If, in fact, we were run over by trains, then it might slice through all the nerve endings and we might not feel any pain at all! That throws out the "worst pain imagineable theory" as far as the pain scale is concerned by those who set the policies. I love the policies because it shows that each person is a unique individual and we all experience pain differently. I also love the Kip scale because instead of all of us clusterheads having to tell our docs that each cluster attack is comparable to a level 1000 on the 0-10 "scale"...the Kip scale gives us the chance to rate our clusters on the 0-10 scale in a way that I would imagine almost all of us who suffer from clusters can relate to. I've had to set straight people over this issue before (on the site where I'm a host) because one person's 10 is not another person's 10. The worst pain known to a 14 year old who comes into the ER with strep throat...may be her 10! The worst pain to those of us who suffer from clusters is by far our "10" on the normal ole scale we use in the hospitals. Whenever I'm admitted for clusters, I have to say my pain is a 10 because they don't know about the Kip scale. Any less than a 10 and they'd tell me I have migraines. [smiley=laugh.gif] So yeah...this probably did not make sense. I'm on pain meds currently for post-op pain. Yesterday I had the worst headache I've ever experienced in my lifetime. It was all along the trigeminal nerve area, and in some ways it did resemble the clusters I get...except the bastard wasn't leaving, and I wasn't rocking or pacing...since I had just had surgery...it wasn't really an option. It literally felt like parts of my brain were exploding right there on the spot. What does that mean? That I never suffered clusters because the headache I had yesterday was out of this world, yet probably not a cluster attack? I dunno... Some would probably say that it's not possible to have a pain worse than clusters. Maybe not. But the point is that clusters are unique. They have specific symptoms. Doctors misdiagnose both ways all over the place. People are given diagnoses of clusters who don't have them and people are told they just have migraines when they've been suffering clusters for a long long time. In my case, my world reknowned neurologist first told me that, "there is no point in treating or aborting those headaches." He passed it off as I had Idiopathic Stabbing (Ice Pick) Headache. It wasn't for some time after that where he realized that I was experiencing clusters. However his preconceived notions about me and the fact that I'd been seeing them in the office for a long time for chronic daily migraine made him think it was impossible for me to suffer clusters. But the clusters are entirely different from the chronic daily migraine. I can separate the two like night and day in my mind. If given the choice, I'd definitely rather not have either...cuz pain just sucks...any way you slice it! L2 |
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Title: Re: Clusters different for Women? Post by maria9 on Mar 13th, 2005, 7:11pm As a well seasoned veteran of this condition (32 years) and being a female I am in the privileged condition of making the following conclusions: 1. Hormones do have some sort of influence on cluster headaches at least in the females. I used to be able to count on a yearly spring cycle of cluster headaches in my younger years but not when pregnant, kindly the beast would wait until the baby was 4 months old. Instead I would have a fall cycle, that year, and then the beast would go back to the regularly scheduled program in the Spring. 2. During menstruation, there is a decline in estrogen, serotonin, and endorphins, along with fluid retention, all of which can lead to an increase in pain amongst females with CH. Note to men: stay away from females with CH when on the rag! 3. Big surprise to me here and I can't find the studies to quote, but men do have a higher tolerance for pain than women. This was from a conference I went to recently on pain given by a Neurologist. Most studies have shown that men do have a higher tolerance for pain and this becomes an important issue, when dealing with post-surgical care or cancer patients to make sure that the women are recieving high enough doses to allieviate the pain. 4. Not related to this topic, but with aging the time between cycles increases, at least according to this aging CH female. I used to be able to count on the beast visiting every spring for 6-8 weeks now he has chosen to limit his visitations to every 4-5 years. Happy trails all, Marsha |
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Title: Re: Clusters different for Women? Post by kimmeesue on Mar 17th, 2005, 6:13pm My first experience with clusters was at age 25 when I was three months pregnant with my third child. From that day for the next three months I had constant clusters, two and three a day, every single day, while trying to parent an 18month old and 3 1/2 year old. I prayed to die. And of course could take nothing even if there had been anything to take (this was 22 years ago almost to the day). One day they stopped. Just stopped. About 6 years ago I had another and knew instantly what it was...I had my share of sinus and tension headaches and a migraine once as a kid...you KNOW the difference.They began with a cycle of sorts but not attributable to anything, and have escalated to the chronic level. I thought perhaps hormones were involved until I had a hyst. So much for that. I have finally decided it's useless looking for something or someone to blame...it's not food, it's not seasonal (unless it's all 4 seasons in which case I'm SOL), it could be my husband but I have him too well trained to give him up, and my kids are all raised and take good care of me so I don't think it's them. I figure, in the greater scheme of things it could be worse, it's not disfiguring, it's not fatal, and there are those who have it so, so, so much worse. As to whether women have it different...of course they do!!! :P |
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Title: Re: Clusters different for Women? Post by jokrs2 on Mar 17th, 2005, 7:59pm Hey where's Susan with the last word over here ::) I think when I was just a little fertilized ovum I was a bit of both sexes. ;;D Come back Susan, I was enjoying the string, please :P I also like chides on my potato. ;;D |
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Title: Re: Clusters different for Women? Post by pubgirl on Mar 17th, 2005, 8:23pm Hey Marsha Couldn't be rude and ask when the diminishing with age started could I? I'm 43 and mine are getting worse! W the B |
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Title: Re: Clusters different for Women? Post by maria9 on Mar 17th, 2005, 9:34pm Hey Wendy, from the other side of the pond I was 38 when the cycles started to get farther apart. What I attributed that to at the time was taking up golf in a voracious way and also seeing a doc who told me that I needed to go on Prozac about the time the cycle would start. So add extra hours of sunlight and being out there with a dose of anti-depressants, I thought I was cured of this awful disorder. But the last two cycles have come on in a weakened state the first after a major surgery and the last after a very nasty cold that turned into a sinus infection and ear infection that mutated into a cluster cycle. My advice for you try the shrooms, the last cycle this seemed to help. Good luck and best wishes, Marsha |
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Title: Re: Clusters different for Women? Post by pubgirl on Mar 17th, 2005, 9:39pm Marsha That's interesting! I am in the middle of the worst cycle I have ever had, and it was preceded by a really nasty sinus infection too. I have heard this before from other people. It seems as if somehow things have gone in reverse, rather than the trigeminal nerve being affected by the headache, the trigeminal nerve seems to have triggered the headaches somehow????????????? Just thinking aloud really as usual Wendy |
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Title: Re: Clusters different for Women? Post by Lizzie2 on Mar 17th, 2005, 10:03pm on 03/17/05 at 21:39:41, pubgirl wrote:
I know this is often looked down upon, but that's actually part of the reason why I recently had the sinus surgery (last week). Given, my circumstance is a bit different there because I had a tumor 8 years ago which left a lot of scarred tissue and also I had a deviated septum as a result of them removing the tumor. So I really had a ton of blockage in my nose/sinuses, and that was leading to more frequent sinus infections and congestion. I felt that there were times that the congestion was a symptom of the headaches and there were times that congestion may have worked the reverse and actually triggered attacks. I'm still in the really-painful-but-recovering stage from that surgery, but I'll let ya know if repairing the sinus damage helps have less attacks that could possibly seem to be triggered by the sinus blockages! OH and the other thing I noticed was this past Monday I went back to the ENT because I was having lots of bleeding, and he moved my post-op appointment up a few days. They spray this stuff (which I do remember from 8 years ago the first time around) in your nose to shrink the membranes and basically "open up" your nose and sinuses so they can see better. That stuff triggered one hell of a very bad headache for me. I didn't get a chance to ask what it was they sprayed in my nose, but I wonder if it was some sort of vasodilator...or somehow the chemical used that opens up the nasal passages affected the blood vessels in my brain to cause this killer headache. If they used that in my surgery, it could explain why I woke up with the worst headache I'd ever experienced once I got out of the anesthesia. Just random musings....as usual :) |
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Title: Re: Clusters different for Women? Post by nani on Mar 18th, 2005, 12:25am on 03/17/05 at 20:23:46, pubgirl wrote:
Ditto...I became chronic at 42. Prior to that I could go up to 5 years without an episode. Hormonally influenced? Maybe. First episode at age 16, 2 weeks after giving birth. Regular episodes until about age 24. Sporadic until age 42...when menopause reared it's ugly head. |
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Title: Re: Clusters different for Women? Post by maria9 on Mar 19th, 2005, 9:37pm Wendy, I have heard of this numerous times on this board, where a sinus infection triggers a nasty cluster cycle. Could it be that the trigeminal nerve is inflamed or extra sensitive from the sinus infection thus leading to the inevitable cluster cycle which is worse than normal? Or is there some sort of established neural pathway where the trigeminal nerve somehow signals to the hypothalamus, I recognize these symptoms, so almighty hypothalamus bring on the cluster headaches. I wish I had the answers and I wish you well. Marsha |
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Title: Re: Clusters different for Women? Post by pubgirl on Mar 19th, 2005, 10:47pm Thanks Marsha It is looking like this cycle, having come in like a lion and slaughtered me with multiple attacks for two weeks may be losing it's power quicker than other cycles. I had hoped this was the case when it hit hard without any slow build up. I am already getting some bigger gaps between attacks so have fingers crossed it might burn itself out quickly. I don't have the answers about the sinus thing either, but it is too commonly reported by sufferers to be a coincidence. Perhaps I might start a thread on it and see what people think as I am curious. Wendy |
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