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Topic: Re: nauseous clusterheads unite! (Read 3287 times) |
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IndianaJohn
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Re: nauseous clusterheads unite!
« on: Aug 8th, 2004, 6:38pm » |
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Hi there
Glad you're here. Sorry that you have to be.
Not to be short , but I'm having a tough day. My kip 10's will 90% of the time have nausea with them.
Best Wishes
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Did my brains fall out or is this headache over?
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pubgirl
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Re: nauseous clusterheads unite!
« Reply #1 on: Aug 8th, 2004, 7:35pm » |
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The trouble with making more play of the "atypical symptoms" is that people with very treatable headache conditions may then diagnose themselves with CH.
The simple fact is that the vast majority of CH sufferers are not photophobic, do not suffer nausea beyond that brought on by extreme pain or get relief from vomiting, and do not lie down during any attacks. They also do not go years between attacks by avoiding MSG, though some individuals find MSG may trigger an attack when in cycle.
To put these symptoms in any differential diagnosis list for CH would cause an avalanche of migraine sufferers to say they have CH
Wendy
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| « Last Edit: Aug 8th, 2004, 7:36pm by pubgirl » |
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ex_pat_asia
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Re: nauseous clusterheads unite!
« Reply #2 on: Aug 8th, 2004, 11:08pm » |
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gr8fulnauseousgrl,
Don't let pubgirl's dismissive remarks put you off. (Reminds me of some of the doctors I have encountered).
Factually, it almost doesn't matter whether you have migraine or cluster in terms of your participation on this board. You are welcome here in either case. (Tiresome..this "clubby" attitude you will see occasionally reflected in the posts here, as if clusterheads wanted to guard the gate.) Most of the posters here are people of extremely good will and will welcome your comments and engage you in exchanging info.
I just wanted to tell you that many years ago a neuerologist told me that he suspected I might be experiencing migraine overlay on a cluster cycle. In hindsight I suspect he was reacting to my report of strong shadow headaches between major bouts during that particular episode. At the time he mentioned a study that supported the idea that both maladies could exist in a single patient. This particular Dr. is not one easily dismissed. It was Lee Kudrow, a lecturer at UCLA - Med and founder of the California Headache Clinic in Encino, California. His son, David Kudrow, continues to practice and operate the clinic. I suspect Lee has retired.
I have been curious about his remarks and occasionally will attempt to search the literature. So far I have found nothing and it is entirely possible that the theory has proven to lead nowhere. Still, whether you suffer cluster attacks or migraine attacks, the two are very kindred phenomena and we proably have much to learn together.
Hope you have all PFDAN
"Prejudices are most difficult to eradicate from the heart whose soil has never been loosened or fertilized by education; they grow firm there, firm as weeds among stones." -Charlotte Bronte
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| « Last Edit: Aug 8th, 2004, 11:19pm by ex_pat_asia » |
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ex_pat_asia
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pubgirl
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Re: nauseous clusterheads unite!
« Reply #3 on: Aug 9th, 2004, 5:10am » |
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You are reading and attacking me on stuff I didn't write again ex-pat asia (halo and horns effect)
I am not dismissing gr8fulnauseous girl, I sympathise with her as I have symptoms very like hers as I am a migraine and CH sufferer and they often overlap in a person with both conditions.
If you read again, you will see that I am explaining why making the atypical symptoms as high profile as the 'classic' ones would be likely to result in an avalanche of migraine sufferers misdiagnosing themselves. CH is a chronically misdiagnosed condition, and the downside of the work that is being done by the various OUCH organisations to make the medical profession more aware of it is that they are now frequently diagnosing any one-sided headache as CH, when it could be something more easily treated.
I talk to very large numbers of migraine sufferers who have been told that they have CH and vice versa. Even more worrying , there are many who have the short-lived headache types, most of which are very treatable who are also being told they have CH. This is borderline criminal when one drug could end their pain. The lines can be blurred, so it is better to start with the International Headache Society criteria for new visitors here, or huge confusion can result.
The initial entry to the site gives good and clear indicators of what these criteria are, the atypical symptoms can be discussed here as gr8fulnauseous girl did.
I am not clubby, nor am I a 'gatekeeper' (I let Jonny and Ueli et al do that!) nor do I dismiss migraine sufferers, in fact I have often defended them on here being one myself if you had been around long enough to see all my posts rather than just picking on me for two you don't agree with. I also try when I am on here to pick up the people with symptoms of the other TACs who are being told they have CH. So please do not accuse me of being dismissive when you don't know the whole story. Just look at the medications board threads if you want to see how 'dismissive' I am of other sufferers here.
Try attacking the people who don't help rather than those who try to contribute.
Wendy
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| « Last Edit: Aug 9th, 2004, 6:00am by pubgirl » |
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ex_pat_asia
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Re: nauseous clusterheads unite!
« Reply #4 on: Aug 9th, 2004, 6:22am » |
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on Aug 9th, 2004, 5:10am, pubgirl wrote:You are reading and attacking me on stuff I didn't write again ex-pat asia (halo and horns effect)
I am not dismissing gr8fulnauseous girl, I sympathise with her as I have symptoms very like hers as I am a migraine and CH sufferer and they often overlap in a person with both conditions.
If you read again, you will see that I am explaining why making the atypical symptoms as high profile as the 'classic' ones would be likely to result in an avalanche of migraine sufferers misdiagnosing themselves. |
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Ok.. I did re-read what you wrote. I'll give you this one in the sense that my interpretation of the remarks you made may have been overboard. But the implication through ommission of what you didn't say has the same result.
You could have added that migraine and cluster are often co-mingled, and that you wanted the writer to appreciate the importance of proper diagnosis. Instead, through that ommission your remarks tended to rebuke what the poster had written. I may have been hasty due to my bristling at what you wrote on the other thread. I think that your statement about diagnosis is a valid point and worth much discussion. Still, I can read and I am not directing my remarks to anything other than what you wrote (and didn't write) and the general timbre of what comes through. So maybe you're just insensitive. For all of your protests about how helpful you are to people you certainly didn't come across that way to me in the thread regarding carotid pressure. You need to review your stuff more objectively. You are probably a good person...who the hell knows...I can't tell from what you write.
on Aug 9th, 2004, 5:10am, pubgirl wrote: Try attacking the people who don't help rather than those who try to contribute.
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Wendy, I am really not intending to attack...but I admit that you made me feel defensive. I am not a stupid person, far from it...and I am not a kook. Thats the way you made me feel. Apologies for carrying this over here. The end as far as I am concerned.
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| « Last Edit: Aug 9th, 2004, 7:04am by ex_pat_asia » |
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Mark C
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Re: nauseous clusterheads unite!
« Reply #5 on: Aug 9th, 2004, 6:48am » |
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First...welcome to the board...
Second....I too get nauseous when the pain level gets high....but not usually...only about 5-10% of the time..
Third...I too prefer darkness and to be alone.....
Fourth....I celebrate (?) 30 years (!) of CH this year...textbook ECH....
Fifth...who gave jonny the keys to the door!
PFDAN's
Mark
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pubgirl
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Re: nauseous clusterheads unite!
« Reply #6 on: Aug 9th, 2004, 7:06am » |
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ex-pat-asia 
gr8fulnauseousgirl  migraines stink, clusters stink worse, having both is unfair!
W
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| « Last Edit: Aug 9th, 2004, 7:08am by pubgirl » |
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synergy2120
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Re: nauseous clusterheads unite!
« Reply #7 on: Aug 9th, 2004, 8:01am » |
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Welcome to the board!!
Marc gets very nauseaus at a level 8 and if it hits a number 10 then he has to have the attack leaning over the toilet as he is constantly sick.
But marc has always had a weak stomach apparently - the slightest thing (like a dirty nappy or the smell of strong food) will make him sick.
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don
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Re: nauseous clusterheads unite!
« Reply #8 on: Aug 9th, 2004, 11:58am » |
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Quote:| Factually, it almost doesn't matter whether you have migraine or cluster in terms of your participation on this board. |
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You better read the sign on the front door of this site dude.
Quote:This site is devoted completely and exclusively to those that suffer from, and to the supporters of those who suffer from Cluster Headaches!
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By the way, an overall sick feeling including my stomach is my first indication I have one coming.
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| « Last Edit: Aug 9th, 2004, 12:05pm by don » |
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Samantha_Smith
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Re: nauseous clusterheads unite!
« Reply #9 on: Aug 9th, 2004, 12:04pm » |
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Gr8fulnauseousgrl--
Welcome to the board. I'm glad you posted. I have dealt with nauseousness also--it's a tough symptom to beat and I have struggled with my weight (loss) for several years because I just don't have an appetite for food. Oftentimes I have turned to Ensure or other supplemental type drinks in order to get the calories and nutrients I need. Also, I tend to eat smaller but more meals throughout the day. In addition to clusters I have migraines also and sometimes the symptoms overlap and melt into each other. I'm sorry that you had to witness "misinterpretations" here on your first post--I hope this doesn't deter you from posting in the future. Feel free to PM me if you want more tips on how to deal with nauseousness. Welcome to the family! PFDAN's to you---Samantha
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Margi
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Re: nauseous clusterheads unite!
« Reply #10 on: Aug 9th, 2004, 12:36pm » |
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Hi Gr8ful,
Sorry to hear you're going through this. Your symptoms do sound like cluster, even though the nausea is rare for most sufferers.
Wendy brought up an excellent point (even though she had to defend herself!) - there ARE a lot of misdiagnoses out there and treating non-cluster with cluster meds can be very dangerous if not fatal. THAT's why we (yes, I said "we", call me a clubby if you will but this IS the reason we are this way) are quick to pick out any and all anomalies in symptoms.
The thing that scares me most about your posts here is that you were diagnosed by a friend? Are you not under the care of a cluster knowledgeable doctor/neuro? Have you tried oxygen as an abortive?
Also, I see you're from Kingston, ON. My husband is, as well (we now live in Calgary though). We've started a Canadian cluster website (O.U.C.H. Canada was incorporated January, 2004) and have a growing number of Canadian sufferers and supporters online now. Please feel free to visit us there as well - we do have other sufferers in your area! It really can help you to talk to other who understand your pain.
http://www.clusterheadaches.ca - we have the same format message board and the link to it is on our home page.
p.s. not sure if you've tried Gravol to try to help get you through the night. It prevents you from getting into REM sleep which is when the nighttime hits occur AND it will help IMMENSELY with your nausea. It's available in generic form at London Drugs, Safeway and Shoppers Drug Mart without prescription. Please try it.
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JDH
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Re: nauseous clusterheads unite!
« Reply #11 on: Aug 9th, 2004, 2:48pm » |
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on Aug 8th, 2004, 11:08pm, ex_pat_asia wrote:
Factually, it almost doesn't matter whether you have migraine or cluster in terms of your participation on this board. You are welcome here in either case. (Tiresome..this "clubby" attitude you will see occasionally reflected in the posts here, as if clusterheads wanted to guard the gate.) Most of the posters here are people of extremely good will and will welcome your comments and engage you in exchanging info.
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Fact is we do want to guard the gate as there are many migraine related sites BUT this is the only place for cluster h/a sufferers.
The web site administrator will confirm this.
Jim
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| « Last Edit: Aug 9th, 2004, 3:18pm by JDH » |
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thomas
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Re: nauseous clusterheads unite!
« Reply #12 on: Aug 9th, 2004, 5:24pm » |
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on Aug 8th, 2004, 11:08pm, ex_pat_asia wrote:
Factually, it almost doesn't matter whether you have migraine or cluster in terms of your participation on this board. You are welcome here in either case. |
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Yes it does indeed matter. And even us good-will people guard the gate, laddie.
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purpleydog
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Re: nauseous clusterheads unite!
« Reply #13 on: Aug 9th, 2004, 7:37pm » |
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on Aug 9th, 2004, 12:36pm, Margi wrote:
The thing that scares me most about your posts here is that you were diagnosed by a friend? Are you not under the care of a cluster knowledgeable doctor/neuro? |
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The best thing for you to do is to get diagnosed by a doctor who specializes in clusters. Not by your friends, not by reading books. Then you will know exactly where you'll need to be as far as treatment. I too have clusters and migraines. I don't get nausea with CH.
purpleydog
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Virginia
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Re: nauseous clusterheads unite!
« Reply #14 on: Aug 9th, 2004, 8:26pm » |
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on Aug 8th, 2004, 11:08pm, ex_pat_asia wrote:Factually, it almost doesn't matter whether you have migraine or cluster in terms of your participation on this board. You are welcome here in either case. (Tiresome..this "clubby" attitude you will see occasionally reflected in the posts here, as if clusterheads wanted to guard the gate.)
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Uhhh...wrong. It DOES matter! As Don said, check the sign at the door. This is not a migraine site.
gr8ful- I get very nauseous when my clusters get their worst....KIP 10's every couple hours...I don't know if it's nausea from extreme pain or from excessive medication. I usually wind up throwing up after a few days of constant 10's.
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ex_pat_asia
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Re: nauseous clusterheads unite!
« Reply #15 on: Aug 9th, 2004, 9:38pm » |
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on Aug 9th, 2004, 11:58am, don wrote:
You better read the sign on the front door of this site dude.
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Quote:| THAT's why we (yes, I said "we", call me a clubby if you will but this IS the reason we are this way) are quick to pick out any and all anomalies in symptoms. |
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I think you meant "this is the reason we are here" but I could be mistaken.
Quote:| Uhhh...wrong. It DOES matter! As Don said, check the sign at the door. This is not a migraine site. |
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Quote:| Yes it does indeed matter. And even us good-will people guard the gate, laddie. |
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Ok folks...why? Why would we want to exclude posts from migraineurs? Is it your opinions that we have nothing to learn from each other? Is it really concern that misdiagnosis could occur by their participation? If so doesn't it seem counter intuitive to try to discourage their postings so we can review their experience and offer some guidance about the distinction?
Look, forget a minute that I used the word "clubby". I admit that I used it for the negative connotation it usually carries. Let me replace it with a more accurate word-> exclusionary. Exclusionary is fine...we should be exclusionary. This is a board with a topic and we should try to stick to it. Best way to do that is to ignore unrelated posts. But my contention would be that migraineurs have a malady that is very similar to our own and that much of the research overlaps as do many of the therapies offered. Testimonilas on this thread suggest that there is at least more nausea within this group then one may have guessed. Is it overlap of two maladies...or is it a part of Cluster for the very rare clusterhead?
I realize there is a real education challenge for clusterheads in terms of getting the medical and general community information that promotes a better distinction and places cluster in a realm that is recognized for its uniqueness. We have a legitimate reason to want more focused research.
However, I know no better way to draw distinctions then to benchmark both sides between that which you want to distinguish.
Frankly, if I thought this BB was simply a place for us all to get together and posts "Gee ain't it awful" and "Boy aren't we poor lost souls" and other soft stroke pablum, I wouldn't bother. What I am primarily interested in is information -- real stuff that helps me get a handle on this irritating part of me. There is a place for expressions of empathy and that is a wonderful aspect of these threads but fo rme it is the least this thread has to offer. I still feel that migrainuers may offer us something. But that is just my humble opinion.
Quote:| Sorry to hear you're going through this. Your symptoms do sound like cluster, even though the nausea is rare for most sufferers. |
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I agree and that is my point. In this case, a terse post tended to make the opening author feel repudiated (as she has noted) and yet she is likely a clusterhead. It could've been end of story, so that not only would a possible cluster sufferer gone wanting support & information...we wouldn't have all the other posters admitting that nausea plays a role in their cluster. Even more interesting to me is the aspect of enduring both conditions hinted at in this and other threads. I have yet to see a study or reputable source on the topic and would love to because I have a friend who may be experiencing that very thing.
In my opinion there is a potential for error on the exclusionary side that does not support the minimal risk a little more tolerance would involve. That error includes the diagnosis issue as well as the error of closing our minds to potentially helpful info. I feel that being to quick to dismiss someone's ideas or anecdotal information can be folly. I do not think that there are bad people here...and I apologize for using the term "clubby" which may have been to inflammatory. Still, I would plea for a little more tolerance when first hearing a poster out.
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| « Last Edit: Aug 9th, 2004, 9:48pm by ex_pat_asia » |
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ex_pat_asia
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don
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Re: nauseous clusterheads unite!
« Reply #16 on: Aug 9th, 2004, 9:48pm » |
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My reply to all that is a simple one.
Go do all the work, put in all the time, invest all the money, that the webmaster of this site that is Quote:| devoted completely and exclusively to those that suffer from, and to the supporters of those who suffer from Cluster Headaches! |
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into a site that suits your preferance. Until then the sign, put there by the owner of this site, remains hung. Not by you. Not by me. By the owner of the site.
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| « Last Edit: Aug 9th, 2004, 9:50pm by don » |
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ex_pat_asia
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Re: nauseous clusterheads unite!
« Reply #17 on: Aug 9th, 2004, 9:57pm » |
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on Aug 9th, 2004, 9:48pm, don wrote:My reply to all that is a simple one.
Go do all the work, put in all the time, invest all the money, that the webmaster of this site that is
into a site that suits your preferance. Until then the sign, put there by the owner of this site, remains hung. Not by you. Not by me. By the owner of the site. |
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Don, I won't argue the point with you...because you are not reading me correctly on this...you haven't said anything that dissuades me. My argument would be that posts from a migrainuer could have value for us...and is not at odds with the spirit of the statement you quote above.
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ex_pat_asia
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don
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Re: nauseous clusterheads unite!
« Reply #18 on: Aug 9th, 2004, 10:03pm » |
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But I am reading you correctly and I agree that input from any chronic pain sufferer is valuable.
The point you are missing is it is not for you, me, or anyone else to decide what is presented on this site.
The originator has already decided that.
You know what is really ironic? Iam making this argument under the heading
"Cluster Headache SPECIFIC".
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| « Last Edit: Aug 9th, 2004, 10:38pm by don » |
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JDH
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Re: nauseous clusterheads unite!
« Reply #19 on: Aug 9th, 2004, 11:04pm » |
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on Aug 9th, 2004, 10:03pm, don wrote:You know what is really ironic? Iam making this argument under the heading
"Cluster Headache SPECIFIC". |
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'nuff said 
Jim
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Re: nauseous clusterheads unite!
« Reply #20 on: Aug 9th, 2004, 11:28pm » |
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on Aug 9th, 2004, 10:03pm, don wrote:But I am reading you correctly and I agree that input from any chronic pain sufferer is valuable.
The point you are missing is it is not for you, me, or anyone else to decide what is presented on this site.
The originator has already decided that.
You know what is really ironic? Iam making this argument under the heading
"Cluster Headache SPECIFIC". |
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Specious argument Don. Factually we disagree on the spirit of the definition. Also: we do decide what is posted, by our very post, and are subject to censure if the BB owner chooses. But look, enough said..I don't think we are getting anywhere. Wish I understood what you were clinging to but I don't. Still, I surrender this topic as it isn't going anywhere. We can agree to disagree.
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Ueli
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Re: nauseous clusterheads unite!
« Reply #21 on: Aug 10th, 2004, 12:46am » |
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Ex, the reason we don't want to discuss meegraines here is very simple:
There are about a 100 times more meegrainers around than clusterheads. So we must forestall by all means that the meegrainers take over this site, or we would be back the conditions that caused DJ to create this site: He got tired of wading through hundreds of meegraine posts just to find something about CH.
Click on the button at right About This Site and read what DJ has to say, including this Quote:| When my annual cycle started a few years ago (April 1st, 1998 ), I immediately got on the web to find out if there was any information that I could possibly use to help me cope with the upcoming three or so months. Much to my dismay, there was literally NO information out there! I couldn't believe it! I thought to myself, how hard could it be to build my own site? |
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Ex, you can't convince me with Quote:| But my contention would be that migraineurs have a malady that is very similar to our own and that much of the research overlaps as do many of the therapies offered. |
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This is a oversimplified wishy-washy statement, often quoted by people with not much knowledge, who get a headache too when they drink too much.
Agreed, there are some meds that help both, like the triptans that act on the common crossing point of trigeminal nerve and neighboring blood vessels. But IMHO, here end the similarities between the two diseases. Searching for any further commonalities does a disservice to clusterheads, and is likely to cause further suffering through wrong treatment of CH. Just think about those that were poisoned for years with beta blockers, almost useless for CH, and consequently needlessly suffered, just because some ignoramus thought: Beta blockers make good preventative for meegraines, so why not for clusters too?
So, let's keep this site clean of any discussions about meegraine treatments!
Otherwise we get thrown back to the dark ages and we will once again have to dig through heaps of meegraine related stuff to find an occasional bit about CH.
PFNADs
Ueli 
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Re: nauseous clusterheads unite!
« Reply #22 on: Aug 10th, 2004, 1:03am » |
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uuuuummmmm......I never get sick.
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Re: nauseous clusterheads unite!
« Reply #23 on: Aug 10th, 2004, 8:18am » |
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I often feel a touch of nausea with an attack. Nowhere near enough to vomit, and not particularly bothersome... but one of those things familiar to me when the puppetmaster of pain decides to take over.
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thomas
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Re: nauseous clusterheads unite!
« Reply #24 on: Aug 10th, 2004, 8:44am » |
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on Aug 9th, 2004, 9:38pm, ex_pat_asia wrote:
Ok folks...why? Why would we want to exclude posts from migraineurs? Is it your opinions that we have nothing to learn from each other? |
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It would be like having straight couples post on a gay marriage site, yes they both live together, both couples love their respected mates, and they both have sex. HOWEVER, they don't have a frickin' clue what the other couple is going through or talking about for that matter. I hope this helps you understand.  (This post was not meant to offend those of any sexual persuasion, just trying to illustrate a point.)
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