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Topic: Why some think they have clusters but don't! (Read 1804 times) |
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Elaine
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Why some think they have clusters but don't!
« on: Sep 1st, 2002, 9:31am » |
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I see a lot of people here that I feel don't have clusters, I see migraine written all over some of the post. I am not a doctor, but I have both types matter of fact, I am right at a good migraine coming on now. I found a great discription of the different type migrains. This was said about a classic migraine:
The pain of a classic migraine headache may be described as intense, throbbing, or pounding and is felt in the forehead, temple, ear, jaw, or around the eye. Classic migraine starts on one side of the head but may eventually spread to the other side. An attack lasts 1 to 2 pain-wracked days.
I think the fact its in the Jaw, ear, and eye and on one side, cause people to get confused between the two.
Theses are the triggers for Migrains:
These triggers include stress and other normal emotions, as well as biological and environmental conditions. Fatigue, glaring or flickering lights, changes in the weather, and certain foods can set off migraine. It may seem hard to believe that eating such seemingly harmless foods as yogurt, nuts, and lima beans can result in a painful migraine headache. However, some scientists believe that these foods and several others contain chemical substances, such as tyramine, which constrict arteries--the first step of the migraine process. Other scientists believe that foods cause headaches by setting off an allergic reaction in susceptible people.
I think people and the doctors are confussing the two. They hurt in the same place and they are on one side. If they have never had a cluster they truely do not know the difference. The only way any of us could ever show them the differnce would be for them to have one. I don't wish that on anyone.
I have nothing against Migrainers and can see how these two would be confused by someone who never had a cluster. But my worry is we are getting the two mixed up and in doing so. Will help ever get to either of us.
Heres where I read this:
http://my.webmd.com/content/article/1826.50466
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| « Last Edit: Sep 1st, 2002, 9:32am by Elaine » |
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jonny
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Re: Why some think they have clusters but don't!
« Reply #1 on: Sep 1st, 2002, 9:44am » |
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I do!!!!
I wish and pray every doctor to get one CH and one meegraine.
That way they know the difference and I will never ever hear "oh....it cant be that painful"
Fuck you Doc, your lucky I dont kill you for saying that!!!
Sorry, bad morning.
....................jonny
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2late
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Re: Why some think they have clusters but don't!
« Reply #2 on: Sep 1st, 2002, 9:47am » |
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great post E! Thank's for sharing .............2late
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Tom
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Re: Why some think they have clusters but don't!
« Reply #3 on: Sep 1st, 2002, 10:13am » |
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Jonny, you obviously hate the MDs and exaggerate:
«"oh....it cant be that painful" - Fuck you Doc, your lucky I dont kill you for saying that!!!»
As CHead and MD I only can tell:
CH pains are really not t h a t bad as soon as you f a i n t because of them !
Thomas
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KingOfPain
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Re: Why some think they have clusters but don't!
« Reply #4 on: Sep 1st, 2002, 10:47am » |
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Ya, jonny!!!! You got that right! Only a clusterhead knows the pain we all suffer. If only Neuro's, Dr.'s & others (non-CHers) could really understand, maybe we could get some real relief or (fingers crossed) find a cure.
Good post. Sorry you are having a bad time. PF to you and all. KingOfPain.
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catlind
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Re: Why some think they have clusters but don't!
« Reply #5 on: Sep 1st, 2002, 10:57am » |
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Elaine, you are right. I too suffer from both, and there is a very definite difference, but it's hard to know that unless you've had both.
When I was in ER the other day, the guy that I was talking to was talking about migraine triggers, and of course all meegrainers know about food and other triggers, but what he mentioned to me was that his migraines were triggered by a combination of foods in the same day. i.e. caffeine alone wouldn't trigger it, wine/grape jelly/grape products of any kind wouldn't trigger it, dairy products wouldn't trigger it, but if he had all 3 of those in the same day he'd get hit. So for any migraineurs here, consider combinations of what you eat and drink and do on the days you get hit.
Migraines I can handle, I go hide in my bed and close the blinds and take some dramamine to go to sleep.
Clusters I can't sit still to save my life...they always have a hard time getting my b/p cause I can't sit still long enough LOL
Cat
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Riccardo
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Re: Why some think they have clusters but don't!
« Reply #6 on: Sep 1st, 2002, 11:59am » |
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Good post, Elaine.
And, furthermore, I want to add another thing.
In the past years, few doctors know what CH is, and was very difficult to be correctly diagnosed.
In these last years (at least, this happens in Italy) many doctors, hearing the patient that say "unbearable pain, eye pain, an so on" DIAGNOSE CH when CH IS NOT!!!!
A neighbor of mine was diagnosed and CURED for CH with attacks 20 hours long .... and on the TWO sides of the skull and, more, the attacks happens one time a month.
How can a doctor made a similar fuc#ed up error?!?
Another doctor, speaking at the TV, said that the CH attacks lasts at least few minutes (great confusion with CPH... and no excuses, the two names are not similar like USA, are completely different in Italy!!) Another said TWO attacks AT LEAST a day!!!
And I have heard many cases like these.
On the other hand, friends, we start to have a renowned illness ... 
Ciao
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Riccardo OUCH-Italia
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nancyc
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Re: Why some think they have clusters but don't!
« Reply #7 on: Sep 1st, 2002, 12:31pm » |
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Yeah, what is going on...all these docs are jumping on the cluster bandwagon , it seems...i know of several patients i have that have been diagnosed with chs...and when they told me all they could do is lay down and go to sleep with them, i had to say...GET A SECOND OPINION...cause if you can sleep with the beast, you aint got chs...now if you dance with him, then you got chs...that's just my opinion , and i am sticking to it...And what's with all these chs variants? My braino neuro is now saying i have optical migranies along with chronic chs cause i get pressure behind my eye with no pain sometimes...what a joke..I call that shadowing for me...Is there a REAL ch DOC out there anywhere who really really understands these things..besides Doc G. of course..and Kudrow and sweet Doc Tom from Munich. ;Dnancyc
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| « Last Edit: Sep 1st, 2002, 12:35pm by nancyc » |
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don
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Re: Why some think they have clusters but don't!
« Reply #8 on: Sep 1st, 2002, 12:47pm » |
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6 of 1, 1/2 dozen of another.
We want Docs to start recognizing CH. Let them sort it out later when the Meegrainer figures out that the CH meds aren't working.
I would rather a Doc mistake a Meegraine for a CH, than the other way around.
They want to jump on a CH bandwagon, let them jump.
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jonny
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Re: Why some think they have clusters but don't!
« Reply #9 on: Sep 1st, 2002, 12:59pm » |
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As far as I know there aint no CH meds, most drugs used to treat CH are Meegraine drugs. but I could be wrong.
......................jonny
BTW, Tom, show up in Vancouver and ill show you how I exaggerate!
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| « Last Edit: Sep 1st, 2002, 1:09pm by jonny » |
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nancyc
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Re: Why some think they have clusters but don't!
« Reply #10 on: Sep 1st, 2002, 1:02pm » |
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The only problem with them jumping on the ch bandwagon is that it shows docs dont understand chs...and i hate this..Plus it makes the person with meegraines have to go thru unnessary bs....guess i want all docs to understand what chs are...wishful thinking , huh? Nope, that is where us OUCHERS come in...educate, educate, educate  nancyc
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| « Last Edit: Sep 1st, 2002, 1:03pm by nancyc » |
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Elaine
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Re: Why some think they have clusters but don't!
« Reply #11 on: Sep 1st, 2002, 2:42pm » |
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The bad thing about them jumping on ch bandwagon Don is all the surveys being taken, by misdianosed people! sure don't help, things get added to cluster, such as throwing up, lieing down, and then the doctors or researchers, drug companys, go looking in the wrong directions for answers and by doing that they may never find the right answer.
Jonny you are right the meds we use are Migrain meds. That is who they are made for.
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catlind
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Re: Why some think they have clusters but don't!
« Reply #12 on: Sep 1st, 2002, 3:27pm » |
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I suppose the fact that they are migraine meds explains why only prednisone has actually stopped a cycle for me and none of the other meds work. O2 is now my best friend, but even it only works to a certain pain threshold.
On the bandwagon side, at least I got one physician assistant to listen to me about the differences in migraines and CH's. He had never heard of clusters and was more than willing, in fact he was excited and anxious to find the info on the site and research it.
Someday one of those young guys that are up and coming will find the answer for us.
It might just be one of our children
Cat
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Jim R
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Re: Why some think they have clusters but don't!
« Reply #13 on: Sep 1st, 2002, 3:47pm » |
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E- Agree O2 only works to a certain pain threshold and then sometimes not and yup, most of our other drugs are used for meegraines too. An I also agree we must educate about CH and not let us blend in with the meegrainers for our affliction is distinct and our solutions should be distinct to be most effective. - Jim R
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Ted
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Re: Why some think they have clusters but don't!
« Reply #14 on: Sep 1st, 2002, 4:10pm » |
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So often I see people saying something like "we need to educate people on clusters" and yet when there's a call for help in putting together the newsletter (that gets distributed to the outside world), whether help is needed in writing, editing, being interviewed, providing original cluster art, etc., very few people actually step up to the plate and do something. And it's not just the NL. It's committees too. Most of them have very little help, although some of them do have some very dedicated volunteers on them.
Wishing to have the world educated on CH won't make the world educated on CH. Saying we need to educate people on clusters isn't educating people on clusters. If you want to get the word out you need to do it actively. This isn't about any one person in particular. It's about many people.
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Elaine
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Re: Why some think they have clusters but don't!
« Reply #15 on: Sep 1st, 2002, 4:34pm » |
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Its like any other organization I have ever been in Ted. There are always only a handful that do the work. The good workers get wore out and have to stop, or like me personal things get in the way and they have to step down.
I am with you. People do need to step up and help out. They need to get involved. If all the members of OUCH would contrutibe a little bit of their time and iseas it would be wonderful and a lot of help. Bob P has message boards all over the OUCH site and a chat room for members. Its a shame there are not more post there and ideas being thrown out and people to take those ideas and run with them and make them work.
Put your talents to work get your butts over to the OUCH site and see what you can do to help!!
Help Ted throw some ideas his way or a story or two.
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catlind
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Re: Why some think they have clusters but don't!
« Reply #16 on: Sep 1st, 2002, 5:29pm » |
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Not that it's all that much but for what it's worth I did put down on my application for citizenship that I was a member of a chartered organization and listed OUCH.
Cat
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Opus
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Re: Why some think they have clusters but don't!
« Reply #17 on: Sep 1st, 2002, 6:50pm » |
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Elaine, What would you say to someone like me. My pain is like a cluster ( can't lay down with a 5 and rock and pace with a 8-10) but they last as long as 6 hours and can switch sides during a ha. My eye can get bloodshot but the eye lid never droops. The pain behind my eye can radiate to my ear, or jaw, or teeth. My nurologist says I don't have classic migraines or classic CH so he will try to treat with medicines that work for both. Hope no one wants me out becouse I don't fit either camp,
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Elaine
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Re: Why some think they have clusters but don't!
« Reply #18 on: Sep 1st, 2002, 6:59pm » |
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I am not a doctor and I could not say what you have. I can say this no one gets turned aways from here. Once a friend and part of this family always a part.
I would ask that you not take any of the surveys relating to clusters. I would also try to help any way I could to find out what you have.
Your do not sound like clusters.
It could be a combanation of two things going on at one time. It happen to me. Make sure you get a MRI and make sure nothing really bad is going on.
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Opus
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Re: Why some think they have clusters but don't!
« Reply #19 on: Sep 1st, 2002, 7:08pm » |
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Elaine, Yes I had my head examined and everything was fine. I was really hopeing they would find something. I have had these in the past about every two years and lasting for 3 to 4 weeks. This cycle the pain is much worse and has lasted for 3 months. My ha's are now coming at random times now but only last 2 hours. My eyes actually hurt when I am in sunlight without dark glasses (anoughter migraine trait) but I don't get arurars or tunnel vision.
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Drk^Angel
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Re: Why some think they have clusters but don't!
« Reply #20 on: Sep 1st, 2002, 8:29pm » |
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From http://www.clusterheadache.org/library/general/ch_general.htm
The cluster-migraine syndrome is diagnosed when elements of migraine headache occur simultaneously in patients suffering with cluster headache. Solomon and Kappa[111] instituted arbitrary diagnostic criteria to establish the diagnosis of this uncommon syndrome. According to their criteria, the diagnosis of cluster-migraine syndrome was given to patients who had symptoms of one headache predominantly (either migraine or cluster), but in whom four or five features of the other headache also were present. Patients who experienced cluster headache with nausea, vomiting, photophobia, or phonophobia would receive this diagnosis, as would patients with migraine who experienced ipsilateral autonomic features. The criteria employed by Solomon and Kappa[111] were not precise; the required number of associated symptoms was picked arbitrarily. Other clinicians have reported patients with two distinct headache disorders. Graham[34] described patients who suffered from recurrent bouts of migraine headaches that recurred daily for days or weeks at a time, then entered a period of pain-free remissions. It is important to recognize the cluster-migraine syndrome because of the unique treatment strategies that need to be implemented. Patients suffering from this syndrome have been reported to respond to inhalation of 100% oxygen as an abortive strategy for acute attacks and lithium carbonate as prevention. This combination would not be expected to be helpful in patients suffering from typical migraine. Alternatively, beta-blockers occasionally may help in this syndrome, whereas these agents would not be useful in the treatment of cluster headaches.
PFDAN....................... Drk^Angel
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Opus
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Re: Why some think they have clusters but don't!
« Reply #21 on: Sep 2nd, 2002, 9:35am » |
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Thanks Drk, I should have known I would have something rarer than clusters, I have to do more research on this. Maybe it's related to getting a cataract at 30. Thanks again.
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oringkid
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Re: Why some think they have clusters but don't!
« Reply #22 on: Sep 3rd, 2002, 8:37am » |
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E, this is exactly what I was saying a few months ago. It has become popular to diagnose CH. And I, like you, think a lot of people are being diagnosed with CH when they don't have it.
Nancy. I have had ocular migraines for many years. What mine consist of is a migraine aura without the intense pain. My head feels funny but I don't get the migraine headache (knock on wood) The aura is freaky though! Very disturbing.
Sherry
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nancyc
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Re: Why some think they have clusters but don't!
« Reply #23 on: Sep 3rd, 2002, 10:49am » |
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Sherry, i dont get an aura...all i get is a red eyeball...think my neuro may be wrong about this...i think it is from shadowing and the pressure i get from it. nancyc
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oringkid
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Re: Why some think they have clusters but don't!
« Reply #24 on: Sep 3rd, 2002, 11:08am » |
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Nancy, I think you are right about your neuro being wrong. Ocular migraine is the aura by itself. There is another one though, I think it is opthamalgic or something like that, that is different from ocular migraine.
Sherry
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