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        New Message Board Archives >> 2002 Posts >> Why some think they have clusters but don't!
        
(Message started by: Elaine on Sep 1^st, 2002, 9:31am)

Title: Why some think they have clusters but don't!
Post by Elaine on Sep 1^st, 2002, 9:31am

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

Title: Re: Why some think they have clusters but don't!
Post by jonny on Sep 1^st, 2002, 9:44am

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

Title: Re: Why some think they have clusters but don't!
Post by 2late on Sep 1^st, 2002, 9:47am

great post E! Thank's for sharing .............2late

Title: Re: Why some think they have clusters but don't!
Post by Tom on Sep 1^st, 2002, 10:13am

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

Title: Re: Why some think they have clusters but don't!
Post by KingOfPain on Sep 1^st, 2002, 10:47am

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.

Title: Re: Why some think they have clusters but don't!
Post by catlind on Sep 1^st, 2002, 10:57am

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

Title: Re: Why some think they have clusters but don't!
Post by Riccardo on Sep 1^st, 2002, 11:59am

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

Title: Re: Why some think they have clusters but don't!
Post by nancyc on Sep 1^st, 2002, 12:31pm

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

Title: Re: Why some think they have clusters but don't!
Post by don on Sep 1^st, 2002, 12:47pm

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.

Title: Re: Why some think they have clusters but don't!
Post by jonny on Sep 1^st, 2002, 12:59pm

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!

Title: Re: Why some think they have clusters but don't!
Post by nancyc on Sep 1^st, 2002, 1:02pm

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 :Dnancyc

Title: Re: Why some think they have clusters but don't!
Post by Elaine on Sep 1^st, 2002, 2:42pm

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.

Title: Re: Why some think they have clusters but don't!
Post by catlind on Sep 1^st, 2002, 3:27pm

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

Title: Re: Why some think they have clusters but don't!
Post by Jim R on Sep 1^st, 2002, 3:47pm

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

Title: Re: Why some think they have clusters but don't!
Post by Ted on Sep 1^st, 2002, 4:10pm

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.

Title: Re: Why some think they have clusters but don't!
Post by Elaine on Sep 1^st, 2002, 4:34pm

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.

Title: Re: Why some think they have clusters but don't!
Post by catlind on Sep 1^st, 2002, 5:29pm

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

Title: Re: Why some think they have clusters but don't!
Post by pjbgravely on Sep 1^st, 2002, 6:50pm

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,

Title: Re: Why some think they have clusters but don't!
Post by Elaine on Sep 1^st, 2002, 6:59pm

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.

Title: Re: Why some think they have clusters but don't!
Post by pjbgravely on Sep 1^st, 2002, 7:08pm

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.

Title: Re: Why some think they have clusters but don't!
Post by Drk^Angel on Sep 1^st, 2002, 8:29pm

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

Title: Re: Why some think they have clusters but don't!
Post by pjbgravely on Sep 2^nd, 2002, 9:35am

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.

Title: Re: Why some think they have clusters but don't!
Post by oringkid on Sep 3^rd, 2002, 8:37am

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

Title: Re: Why some think they have clusters but don't!
Post by nancyc on Sep 3^rd, 2002, 10:49am

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. :Dnancyc

Title: Re: Why some think they have clusters but don't!
Post by oringkid on Sep 3^rd, 2002, 11:08am

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

Title: Re: Why some think they have clusters but don't!
Post by Ree on Sep 3^rd, 2002, 11:54am

If any of you ever want to know what a migraine is ask me... I get it all, full boot several times a month chronically whether I take meds or not... I also get opthalmoplegic and ocular migraine... which if you get your can't go any where because you cant see. Sometimes migraine can last for days with out relief.
The vast majority think we are weak...

Makes it hard to cope sometimes... there are several people here that dont have CH I know the difference.
I only wish Dave WOULD lie down with his HA. He couldnt if he wanted to and the last thing I would do with a Migraine is whack myself in the head or create any painful disturbances to my head,or any other part of my body for that matter... that doesnt take Migraine away nor does it distract it even for seconds... Now that we're a big website it would be too hard to weed out the Migrainers from the Cluster Heads...
when will you all just realize pain is bad... No one is better worse or indifferent. My pain may be worse... Your pain maybe worse who the Hell cares. I do agree that it makes it hard if suddenly they are trying to treat symptoms that dont exist for Clusters. Whats to say that Migrainers dont occasionally get a CH attack, if it is possible to get a Migraine if you are a CHer... I know I have had some CPH with my migraine and that is new to me ONLY now that I know what it is... does that make me more accepted here. I have never asked for support only answers for my husband and those friends here that need answers. I am on the same fight as you... I am willing to help in any way that I can... ree

Title: Re: Why some think they have clusters but don't!
Post by Bob P on Sep 3^rd, 2002, 12:45pm

Ree,

OUCH is open to anyone with an interest in CH. At least that's what the Bylaws have said since day one. It's not a club for cluster sufferers only. It's for anyone, clusterheads, supporters, doctors, meegrainers, etc. who want to learn about CH and maybe help do something about it.
I'm with ya, who the hell cares.

Title: Re: Why some think they have clusters but don't!
Post by nancyc on Sep 3^rd, 2002, 1:01pm

YES, YOU do belong here sis! I think alot of folks concern is that people that have been misdiagnosed with chs are not getting the right medications...I value you and your support..I also value the opinions of people who come here that dont have chs but are here to support people in pain... ;Dnancyc

Title: Re: Why some think they have clusters but don't!
Post by NancyMcFree on Sep 3^rd, 2002, 1:02pm

Ditto what Bob P said only in a higher voice.

Title: Re: Why some think they have clusters but don't!
Post by Elaine on Sep 3^rd, 2002, 1:45pm

I give up people, I just give up!!!!!

Title: Re: Why some think they have clusters but don't!
Post by Drk^Angel on Sep 3^rd, 2002, 2:37pm

I think this thread has gotten a bit off track. I haven't read anywhere in this thread that migraine sufferers aren't accepted, or that supporters aren't accepted, or that OUCH has any prejudice against non-CH sufferers. My take on what Elaine was saying is that too many ppl with other primary headaches are being diagnosed incorrectly with CH which is causing two problems... #1... The symptoms of the other primary HA are being added to CH symptoms on account of surveys and studies when the sufferer shouldn't be included in the first place because of misdiagnosis. #2... These ppl are not being treated correctly for the HA they have, which has a negative impact on the sufferer, and on the items mentioned in #1. (Elaine... Please excuse me if I am reading things into your posts that you didn't mean.)

PFDAN........................... Drk^Angel

Title: Re: Why some think they have clusters but don't!
Post by Elaine on Sep 3^rd, 2002, 2:40pm

Thank you Drk!!! That is just what I said!!! ;)

Title: Re: Why some think they have clusters but don't!
Post by Bob P on Sep 3^rd, 2002, 3:19pm

We realize that. The conversation just kind of evolved to take another track.

The diagnosing CH page at OUCH says plain and simple, be sure of the diagnosis or this site will do you no good. However, if OUCH can ride the coat tails of some meegraine assoc. to the top of the CH heap, then we should do it.

Title: Re: Why some think they have clusters but don't!
Post by echo on Sep 3^rd, 2002, 3:29pm

what you wrote is so true Elaine. I would hate to think that the new med buzzword would be clusterheadache. If the medical world operates anything like the corporate world, as soon as it becomes a buzz word it loses momentum and importance. But that's my opinion - and I've been wrong in the past.

Title: Re: Why some think they have clusters but don't!
Post by Drk^Angel on Sep 3^rd, 2002, 3:54pm

Bob... I'm sorry but I must be missing something. How exactly would it benefit our cause if we allow clusters and other HAs to get confused? I think in terms of the OUCH organization, it should be very important for us to maintain a distance from migraine associations, and being confused with migraines. "Riding the coat-tails" of migraine associations will help fuel the belief by some in the medical community that clusters are directly related to migraines, and only prove to deter us from our efforts to raise the level of education in the medical community about the truths of clusterheadaches. What would make more sense is to work with the migraine associations on the common areas of the two maladies, but make our own, distinct strides in the areas that are unique for us.

PFDAN........................... Drk^Angel

Title: Re: Why some think they have clusters but don't!
Post by Slammy on Sep 3^rd, 2002, 4:10pm

DA-

I agree with Bob. The problem with your premise is simply a matter of numbers. Look how many people in here rely on Imitrex. Imitrex is a migraine med. Hell, I just saw a commercial during prime-time promoting Imitrex for migraine sufferers. Do you think that if migraines did not exist in the numbers that they do, I would see this commercial for cluster headache sufferers? I don't think Bob is saying that it is ok to "confuse" other forms of headaches with cluster headaches. I think "associating" cluster headaches with other forms, such as migraines is a more accurate statement.

Slammy 8)

Title: Re: Why some think they have clusters but don't!
Post by Drk^Angel on Sep 3^rd, 2002, 4:48pm

Like I said... We should work with the migraine associations on the areas that common between us and them, but if we decide to sit back and ride in the wake of the migraine associations, we'll never see recognition for clusters. Have you ever once seen any commercials for Imitrex even mention cluster headaches? They hardly even mention us at all on their website. All we garner right now in the Imitrex publications is a small part of the literature included in the box that the meds are in. As long as we remain in the backwash of migraine, all we will be is a footnote in a migraine document.

PFDAN............................. Drk^Angel

PS... Sorry Elaine that we've taken the thread off course again.

DA

Title: Re: Why some think they have clusters but don't!
Post by Elaine on Sep 3^rd, 2002, 5:32pm

Thats cool Drk ...I like the way you think. Maybe you can explain it better than me I never was much good at getting my point across without causeing a hassle.
Thanks

Title: Re: Why some think they have clusters but don't!
Post by Drk^Angel on Sep 3^rd, 2002, 5:36pm

E... I'll be lucky if this discussion doesn't brew a fight... LOL *hugZ* Hope you're having a decent day.

PFDAN.............................. Drk^Angel

Title: Re: Why some think they have clusters but don't!
Post by Slammy on Sep 3^rd, 2002, 5:50pm

Why would it brew a fight, DA? I don't disagree with what you are saying at all. I just feel that we don't have the numbers to push ourselves out of the backwash of Migraines. I don't think anyone wants to sit back and ride the coat tails of migraine studies willingly. It's that you have to know your audience, and fight the battles that you can win. If that means association with migrainers, then so be it. Whatever works.....It's not unreasonable to think that a preventative cure for Cluster Headaches could be derived from a cure that prevents migraines.

Slammy 8)

Title: Re: Why some think they have clusters but don't!
Post by jonny on Sep 3^rd, 2002, 6:01pm

Kinda like using the meegrainers as a spring board, Slam master jam?

hell, we got most of or drugs from meegraine research.

...................jonny

Title: Re: Why some think they have clusters but don't!
Post by catlind on Sep 3^rd, 2002, 6:14pm

E, I completely understood and agree with your first post. I think maybe because you and I suffer from both Migraines AND CH we have a different perspective. Knowing the drugs we use are for migraine sufferers is only somewhat helpful, for some of us, it alleviates the pain of CH's but for others like me, they are out of the question, so I'll take my dramamine/gravol (for the canadians out there eh) and go to bed when I get a migraine, and I'll take my O2 and pain meds to try and get through my clusters, and HOPE HOPE HOPE that they come up with a drug SPECIFICALLY for CH's. One that wouldn't work on a migrainer as a general rule but will work 9 times out of 10 on a cluster sufferer.

Just my opinion.

There's just too much they DONT know about both types of headaches, or all headaches at all. I was told by Dr. Haas (personal opinion of the man left out) that there was no such thing as a "normal" headache. So lets hope they can find out what each type of headache is and why it happens and then find out how to treat them.

Cat

Title: Re: Why some think they have clusters but don't!
Post by Slammy on Sep 3^rd, 2002, 6:31pm

on 09/03/02 at 18:14:41, catlind wrote:

HOPE HOPE HOPE that they come up with a drug SPECIFICALLY for CH's. One that wouldn't work on a migrainer as a general rule but will work 9 times out of 10 on a cluster sufferer.

Cat

Why would you give a shit if the drug worked 9 out of 10 times for BOTH migraines and cluster headaches.. as long as it took care of your headache??

Slammy 8)

Title: Re: Why some think they have clusters but don't!
Post by Drk^Angel on Sep 3^rd, 2002, 6:32pm

Many of our current crop of abotives have filtered down to us from our migraine brethern, but do they help the cause or the symptoms... What if clusters and migraines aren't as related as you may believe. There have been studies that show a deformed hypothalamus might be to blame for clusters, but that hasn't been shown on migraine patients. If each disorder has a different cause, how can you be so positive that a cure for migraines will help us at all? How are you so positive that better migraine drugs in the future will be effective on clusters? How are you positive that better treatments for clusters will come from the migraine research? We talk alot about getting recognition for clusters, but now you're going to tell me that we should take the migraine backwash because we don't have enough support. If we continue hiding in the shadow of migraine, we will never have the support we need to break free. It's important that ppl know that migraine and clusters are separate but equal afflictions. If you sit back and wait for the battles that you know you can win, you'll never have the chance to win the battles that are worth winning.

PFDAN........................... Drk^Angel

Title: Re: Why some think they have clusters but don't!
Post by catlind on Sep 3^rd, 2002, 6:44pm

Slammy monkey man I think you misread my post hehe.
I said wouldn't work on a migraine...I don't give a shit if a med works for another headache as long as it works for CH's specifically. I'm sure migrainers don't care that meds designed specifically to stop migraines are helping CH's. I just want one that works specifically on CH's, but of course they will have a shit load of research ahead of them before they even fully understand the nature of CH's and then that much more to find a med or create a med that will work.

;D

Cat (Crabby Anal Twit :P ) or (Crafty Artistic & Talented)
depending on what hour you catch me LOL

Title: Re: Why some think they have clusters but don't!
Post by Elaine on Sep 3^rd, 2002, 7:01pm

It took me close to 20 years to find imitrex !!!
I was first told that it was all in my head that I made it up in my mind. I had 13 series of shock treatment. That was when they did it wile you were awake. I lost a lot of my memory. I was in the hospital three months. I was given so much drugs in there I bearly knew my name. I got out and guess what they were right back. Then I was told it was my teeth. They pulled them out my top teeth. Not a great thing in your 20s. Then I was told sinues....on and on for years. I finally found a nuro that said the good news is we have a name for it its clusters the bad news is there is no known cause or cure. Every six months I was calling him and asking has anyone found anything to fight these things? The answer was always no. I finally just learned to do the best I could with what ever drug I could find. The good lord was with me and gave me enough strenth to deal with the pain and take care of my family and a job.
I spent many hours hiding the pain as best I could...and I spent many of nights waking the whole house screaming cause the pain was so bad.
I have migrains and I don't mind them being here. But I want someone to find a answer and a cure. For twenty years I have been a shadow of the migrainers. When I found this site I no longer felt like a shadow. I found some reliefe in talking to people who knew the pain. I found meds that worked. Yes they were migraine but you know maybe there is just one thing that hasn't been added that they will never find as long as we are a shadow.
I want someone to tell me WHY!!!!Why I had to go through this shit !!!I want someone to take notice that we are not the same as migrainers.
I want someone to also find a cure for Migraines because I have those to. No one ever tried to pull my teeth or give me shock treatment for a migrain.
I am upset now and sure I am not making myself clear.
Ree you and Margi and Jackie are three of my dearest friends and you know what none of you have clusters. I would never ask anyone to leave here. You three are upfront with your supporters and Ree you have migraines. But they are some here who really do not know what they have, they believe they have clusters when they don't...because of uninformed doctors. Just what we need to really confusses doctors more are migrainers saying they belong to OUCH and have clusters.

Title: Re: Why some think they have clusters but don't!
Post by Slammy on Sep 3^rd, 2002, 7:12pm

Cat, I did not misread your post. My comment was based on the point you made saying you are hoping for a drug that doesn't work on meegrainers ( as a rule) but 9 out of 10 times works on cluster sufferers. Why do you hope for one that works only for clusterbuds? So you can call it your own? LOL! Jeezus! I just want a drug that makes them go away forever! I don't care if it is derived from monkey piss and cures herpes! ;D

Dark dude..... I never said I was positive that a cure or better drugs would come from migraine research.. I said that it is not unreasonable to think that a preventative cure for Clusters may be derived from a drug that prevents migraines.

Look at it this way... Migraine research is in the millions, if not billions of dollars arena. Where are we? a fraction of it? there's a reason for that.....

You fight the battles you can win, so you can someday win the war, or the significant battle. We are not battling from a position of strength...so you have to carefully choose where you use your resources... that's all I'm saying....

kinda like drafting behind a race car in NASCAR. We draft behind the Meegrainers long enough to establish enough momentum to break free and establish our own legacy.....

Hey, it's just Slammy's opinion.... I might not always be right, but I'm never in doubt! ;D

Slammy 8)

Title: Re: Why some think they have clusters but don't!
Post by Slammy on Sep 3^rd, 2002, 7:15pm

Elaine dear...

You are making perfect sense! :-*

Slammy 8)

Title: Re: Why some think they have clusters but don't!
Post by catlind on Sep 3^rd, 2002, 8:00pm

There is definitely never a doubt about you Slammy LOL

I guess what I was trying to get across, is that the research and pharmaceuticals need to pay attention to the specifics of cluster headaches and NOT lump them in as a branch of migraines unless they KNOW that is the case. You're right, if a drug that cures/stops clusters in their tracks, and it cures lepracy (sp) as well, I don't care, I just want someone to do the research for us as clusterheads, no I don't want a med I can call mine, I also have migraines, pain meds work for migraines, as does a slew of other drugs, but those drugs only work for a few people who have clusters. I just want someone out there doing research on the specifics of the cluster headache, to recognize it as a headache in it's own class, and not lump it in with migraines.

Okay now I'm repeating myself, boy must have been on a roll there LOL

Cat

Title: Re: Why some think they have clusters but don't!
Post by catlind on Sep 3^rd, 2002, 8:05pm

Elaine correct me if I'm wrong here, but the bottom line is that if someone takes the cluster quiz and doesn't fit the profile, and does the survey, they skew our results. If someone takes the survey, fits the profile, takes the quiz, they may or may not skew the results. If someone takes the quiz, fits the profile, and has a definite diagnosis of Clusters, those are the folks that are wanted for the survey? If I'm wrong puleeeze correct me, but that's how I see where this thread started.

Cat

Title: Re: Why some think they have clusters but don't!
Post by Drk^Angel on Sep 3^rd, 2002, 8:23pm

Slammy... I'm not saying that we shouldn't work with the migraine sufferers, but we shouldn't rely on them. They have their own agenda, and if we rely on them too much, we may find them gone when we need them the most. We should work with the migraine associations as equals. We should provide them support for areas that assist us, and they should provide support in turn, but we need to persue our own agenda just as they do. Instead of riding in their wake, we should make our own path along side their's. We should be their allies instead of their dependants. We may not have the numbers that migraine do, but that don't mean we have to stay in the shadows.

PFDAN....................... Drk^Angel

Title: Re: Why some think they have clusters but don't!
Post by Bob P on Sep 4^th, 2002, 8:25am

Drk,
That's what I ws trying to say with the coat tails comment. We shouldn't completely distance ourselves from the meegraine organizations. If chumming up to them helps get OUCH into the forefront with the Dr.'s oganizations, then we should do that. Still, keeping in mind out Mission Statement - doing it to further awareness of CH and get us into some research programs.

Title: Re: Why some think they have clusters but don't!
Post by oringkid on Sep 4^th, 2002, 8:56am

A little off subject here, sorry E, but does anyone know if anyone is still actively researching the cause of CH? Is Dr. Goadsby still trying to figure it out? I haven't heard of anything new or even built from his premise. Seems it went "ok the hypothalamus is bigger...oh well that's enough for now"

I wonder if we are being too complacent with our drugs?
Is any one here absolutely completely painfree due to the drugs they are taking? I don't think so. "The squeaky wheel gets the grease" We get a little bit of relief and say "well that's better than it was" and we just accept that. And the doc's say "well that must have worked, I don't have to worry about that anymore" and no more gets done. I know that is a generalization and not completely true, but you get my meaning.

and yes, I know, I am one of the worst offenders because I don't even try the drugs, but I don't want to live with horrible side effects! I don't want to have to carry syringes and oxygen tanks with me everywhere I go! I don't want to gain 50 lbs, be constipated, lose my memory, have no energy or have to go for blood tests every 6 months to make sure my liver isn't going to blow up! That is not right! I refuse to compromise the rest of my health and life just for something that "sometimes" works or even "most of the time" or that "brings it down to a kip 5" or that "makes them less frequent"

It's not right. It's half assed, hand me down drugs and I won't do it.

I want the cause of CH defined and that's not gonna happen if we are lumped in with migraine or they are diagnosed as CH.

If they find a cause and a cure, and if people with migraines are being diagnosed with CH, more than likely the cause and cure will be for migraines and I will still be in pain.

Ok, rant over. Sorry E.

Sherry

Title: Re: Why some think they have clusters but don't!
Post by pjbgravely on Sep 4^th, 2002, 5:47pm

If a medicine is discovered that treats clusters and nothing else then It would probably would be never made or cost a fortune just like most drugs for rare illnesses.

Title: Re: Why some think they have clusters but don't!
Post by Charlie on Sep 4^th, 2002, 6:18pm

Everyone re-read Bob P's little post. I'm never nice to him but this time, I agree with him. :o

Charlie 8)

Title: Re: Why some think they have clusters but don't!
Post by Drk^Angel on Sep 4^th, 2002, 9:20pm

OK Bob... Thanks... Just needed a bit of clarification on what ya meant... I don't like much the phrase "riding on their coat-tails"... Sounds more like depending on them than working with them. Sorry for the confusion.

PFDAN........................ Drk^Angel

Title: Re: Why some think they have clusters but don't!
Post by Slammy on Sep 5^th, 2002, 11:19am

AFLAC!!!!!!!!!!!!!!!!!!!!!! >:(

Oh, sorry... watching too much sports on cable! ;D

Slammy 8)