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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> Re: IMITREX
        
(Message started by: NotH20 on Jun 10^th, 2002, 4:41pm)

Title: Re: IMITREX
Post by NotH20 on Jun 10^th, 2002, 4:41pm

Penny - glad to hear that you are getting some relief. The injections have NEVER failed me.

Hope you feel better soon.
NotH20

Title: Re: IMITREX
Post by Bob P on Jun 10^th, 2002, 4:58pm

Gotta say it:

Quote:

Imitrex has taken my headaches from 5 days to 1-2 hours

Are you sure of the diagnosis? There is no such thing as a 5 day long cluster headache and no such person that could live through a 5 day cluster headache if they did last that long!

Title: Re: IMITREX
Post by NotH20 on Jun 10^th, 2002, 5:05pm

Hey Bob - glad you pointed that out - I TOTALLY read that wrong. First thought she was getting 5 ch's per day and w/ the shot was down to 1-2 per day.....

Hey Penny - take the cluster quiz on the left side and see if that helps you a little.

Good luck,
NotH20

Title: Re: IMITREX
Post by Drk^Angel on Jun 10^th, 2002, 11:45pm

Hold on... I don't think they were meanin' ya had to leave. They just wanted to make sure you were sure you had clusters. I don't know if it's possible to have an attack that lasts 5 days, but I know it is possible to have an attack that last about half that. If the trex is helping you, that is great! Perhaps if you explain more about your symptoms and cycles, we will be able to better understand your position.

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

Title: Re: IMITREX
Post by NotH20 on Jun 11^th, 2002, 7:34am

Penny - Drk is correct - I wasn't giving you the CH boot - I was just trying to get more info on you. I'm sorry if I made you feel that way. If in fact they are clusters and you have had a CH for 5 days - I can only image what pain you were in - not to get any relief after a single 2 hour headache is enough to send me over the edge >:(

There is a vast difference between clusters and migraines - although both are vascular. Some meds work for both such as the injections. That is my abortive of choice.

On the OUCH site there is a list of referred docs - maybe there is one in your area that could give you a definite diagnosis and also a change in meds to get you some relief outside the injections.

Penny, we are all here for you - to support you, give you suggestions and listen when you want to vent.....

Keep us posted on your progress,
NotH20

Title: Re: IMITREX
Post by TomM on Jun 11^th, 2002, 7:52am

Hey Penny.
I've been a clusterhead for a while now and found Imitrex nasal spray my abortive of choice. It works well even though it is primarily used for "Migraines". Now that I am pushing 40, I've been blessed w/ both Migraines and CH's. Gotta love the big guy who thought of this...anyway, I agree with NotH2O and Drk^Angel that you need to: 1) stick around. 2) determine which HA (headache) you have. or 3) determine if you have both. I know the difference between my CH's and Migraines. One I get nauseous and eventually puke, while the other I don't. You do the math.
Bset of luck.
TomM

Title: Re: IMITREX
Post by Penny on Jun 11^th, 2002, 8:28am

Sorry guys just a bad day I guess. :-[ Yes, Tom there are times that I do puke and that I can't stand the light, noise,etc. but other times it's behind my right eye and across the back of my head. It only happened once that it lasted 5 days and I had tried everything and even ended up at the doc. The one I go to now is the specialist in this area. And I am waiting for more info. from him at this time. They usually last at least 4 hours. Thanks for caring everyone. Since no one in the my family seems to understand or at my work either. Have a great day.

Penny

Title: Re: IMITREX
Post by NotH20 on Jun 11^th, 2002, 8:40am

Penny - it's very hard for people to "understand" ch's. It's not like a broken arm where they can see the damage with their eyes. It's something inside out heads and they only see the side effects of that. There is a great supporter area here on this site for any of your family members if interested. Also, maybe you can printe some info out for both your family and your coworkers. Maybe they will understand a little more exactly how much pain we are in. They have nothing to compare it to except a "normal" headache that they get and can NEVER image what an ordeal CH's are.

Don't wait any longer for info from your doc - be agressive with him to help get yourself some relief. Spend some time researching this site and the list of meds - then call your doc w/ this info. Also check out all of the crazy stuff we do to help get rid of the beast (ice packs, hot coffee, hot baths, rocking, etc.)....

Bad days are allowed here....any time you need one :)

NotH20

Title: Re: IMITREX
Post by TomM on Jun 11^th, 2002, 8:42am

Sensativity to light, noise, and motion are symptoms of both HAs for me but the CH is MUCH, MUCH worse. The red hot poker in the eye and pain eminating from the eye socket to the cheek bone and jaw joint (sorry, I'm not medically inclined) is key to a CH. Keep a close eye--no punn intended--on depression. Mood swings are very common with me; just ask my poor wife. Thankfully my boss gets bad migraines and can empathize with me. Take time to educate your family so they have, at minimum, an understanding of your pain, fears, and moods. Support is necessary and we are here to support you! Keep in touch.
TomM

Title: Re: IMITREX
Post by Bob P on Jun 11^th, 2002, 8:58am

Since one of the main goals of OUCH is to eliminate misinformation regarding CH, I have to say this: This does not sound like clusters. It reaks of migraine.

Cluster headache does not last 5 days. A cluster headache does not last 24 hours. During a cluster there is no possibility of sleeping or eating. I doubt Penny stayed awake for 5 days straight.

I realize you are all trying to be nice and helpful but the best thing we can do is direct Penny to a place that can help her condition. It's a disservice to her and to the clusterheads on this site to accept a 5 day or a 2 day attack as being CH.

Title: Re: IMITREX
Post by Drk^Angel on Jun 11^th, 2002, 1:48pm

CH is different for everyone... In between attacks with my CH, I go into a migraine phase... This is continuous throughout the entire cycle. The attacks can normally last from 2 to 8 hours at a time, then they subside, and a throbbing pain starts all over my head, with severe nausea, until the next attack. I used to confuse the attacks and the migraine phase as a continuous headache at different degrees and locations, and until I finally started separating the symptoms into different groups, I never did get an accurate diagnosis. (I know it may sound unbelievable that I couldn't know the difference between the two HAs, but when you have continuous pain for 2 weeks at different levels, you tend to assume that it was all the same thing.) And it is possible to go into an attack that lasts for longer than a day. I know... It is Hell to the extreme. Something I don't ever want to experience again. Oh well... I'm done now. PFDAN.

Drk^Angel

Title: Re: IMITREX
Post by Bob P on Jun 11^th, 2002, 2:19pm

Nope. CH is not different for everyone.

CH is:

at least 5 attacks of severe pain in or around the eye or temple on 1 side of the head.

These attacks last 15 to 180 minutes untreated.

They are accompanied by at least one of the following on the same side as the pain:
bloodshot eye
teary eye
nasal congestion
runny nose
forehead or facial sweating
constricted pupil
droopy or swollen eyelid

The attacks are anywhere from 1 every other day to 8 per day.

Attacks occur in series lasting for weeks or months separated by remission periods lasting months or years.

If you ain't got the above, you got something other than clusters.

Title: Re: IMITREX
Post by Margi on Jun 11^th, 2002, 2:22pm

I'm sorry, Drk^Angel, I gotta agree with BobP on this one (even though he did just write my name on the bathroom wall)!

Cluster attacks can NOT last as long as you are describing. You would be dead. Case closed. Either by your own hand, or from the fact that your elevated blood pressure during an attack would cause various body parts to explode. I'd even go so far as to disagree with you when you say that not all cluster headaches are the same. The true cluster attack really does fit a pretty strict profile. Read the Cluster Traits button on the left.

Migraines have become quite a catch-all diagnosis for everything from sinus headache to eyestrain to tension pain. Our biggest focus here, is to see that that never happens with clusters, more from a cure research point of view than of trying to be an elite group. Who here really WANTS to be in the "elite" cluster headache group anyways? Why would they?

True migrainers also get insensed when they see someone saying they have a migraine, while they are standing upright in a fully lit room, smoking a cigarette. True migraines can last as long as a couple of days, granted...but longer than that? I dunno. Longest I've ever gone is 36 hours. The typical symptom of migraine is photosentivity (vampire like fear of daylight), phosphenes (aura) and numbness in face and fingers, vomiting and extreme pain. Cluster headaches traditionally share none of those symptoms. I only know of one true clusterhead that experiences the nausea with attacks. I believe he is the only exception to the rule I've ever seen here in my years visiting this website.

I am a 'migranoid'. My husband is a clusterhead. He sometimes gets regular headaches in between cluster attacks (although going down to 0 on the Kip scale is more the norm for him, in between attacks) and some of those can escalate into a shadow and then, possibly, into a cluster attack. Sometimes, the length of those types of pain can last hours and hours and never really go completely away. But that's not a migraine. He can still function with that pain.

You can NOT function with a cluster headache or, really even with a true migraine. You CAN sleep with a migraine, you can NOT sleep with a cluster attack. They are very different species. However, I've never seen anyone be able to eat food during either type of headache. How can someone go 5 or more days without FOOD? OK, maybe that IS possible, but I still don't see how anyone can go through either affliction for days on end without someone finding your name in the obituary column.

Title: Re: IMITREX
Post by oringkid on Jun 11^th, 2002, 3:08pm

Actually Margi, although I agree with you and Bob, some people CAN function with a cluster. Maybe not really well but yes, you can function if you really have to. Also, I can eat with a cluster up to a kip 6. Beyond that, I have to wait til it gets back down to a kip 6.

But on the other points, I totally agree.

Also, recently I read something VERY interesting and to me, very disturbing. There ARE people out there who will fake clusters (not only clusters, but other diseases that can be faked as well). They read up on it and go to the doctor and get a cluster diagnosis etc. There is a name for this, some sort of syndrome (can't remember now) But what these people are after is the attention. I can't imagine why anyone would EVER want this.

So, Penny, what you have sounds more like migraine type symptoms from your description. You should definitely go to a neuro for tests and a better diagnosis.

Sherry

Title: http://www.mbpexpert.com/definition.htmRe: IMITREX
Post by NotH20 on Jun 11^th, 2002, 3:30pm

Hey kid - I think what you are referring to is Facticious Disorderor or Munchausen Syndrome - check out this link - very distrubing that someone - ANYONE - would go through this....

http://www.mbpexpert.com/definition.html

NotH20

Title: Re: IMITREX
Post by williamsmh on Jun 11^th, 2002, 3:43pm

I have both migraine and cluster and for a while thought they were part of the same animal. One sided head pain seemed similar enough.... I just thought the clusters were a very painful variety!

Then I started looking at the symptoms and found that I had two distinct headaches.

One is behind the eye, burning, lasts about 3 hours and makes me run from the pain (no laying down, no sleeping, etc.).

The other is in my tempal, throbbing, lasts 2-8 hours, makes me nauseous, and all I want to do is sleep.

They both suck! Though the clusters are much, much, much more painful.

Penny, my advice is to look at your symptoms.... maybe you are having both... The good thing is that Imitrex may work with both headaches (it does for me). I take the injections for the clusters (because nothing else works) and the nasal spray for the migraines (because it's cheaper and easier to get from my insurance).

Seeing a specialist is the best answer... have a neuro look at your condition, write down everything about what is happening and let him/her help you.

Mark

Title: Re: IMITREX
Post by NotH20 on Jun 11^th, 2002, 3:44pm

??? maybe next time I'll spell better too - sorry!

NotH20

Title: Re: IMITREX
Post by williamsmh on Jun 11^th, 2002, 3:47pm

BTW... I do meet the criteria and all, but....
as to the remission period of months or years.... I WISH!

My remission period is usually measured in days or weeks, never months... (I think I went 6 or 7 weeks, once).

Luckily I only have 1-3 per day during a cycle and Imitrex works 99.9999% of the time (if it's an injection).

Mark

Title: Re: IMITREX
Post by oringkid on Jun 11^th, 2002, 4:00pm

NotH2O, That is EXACTLY it! Thanks!

Sherry

Title: Re: IMITREX
Post by Marc on Jun 11^th, 2002, 6:16pm

Hey Bob,

You forgot one - gender.

Women don't get Clusters.

Title: Re: IMITREX
Post by Bob P on Jun 11^th, 2002, 6:22pm

You're dang tootin' they don't.

CH is a male disease. Jeez, they're stealin' our masculinity and now they want our hedaches too!

Title: Re: IMITREX
Post by Drk^Angel on Jun 12^th, 2002, 12:27am

So Bob... According to your criteria... I don't have clusters... Gee... I wish I would have known that before I became so comfortable here, and joined OUCH and all. Because, after all, clusters are only one sided. Oh well... Guess there can't possibly be bilateral clusters. Oh well... I guess it is better to keep the diagnosis of clusters to a relatively small amount of symptoms, and not worry if there may be variants, or occasional changes to the master plan. And the attack I had that lasted over two days, that must have been my imagination. Or mayby the docs I saw when I was 11 was right, maybe I'm makin' it all up... I just wish I would've known I was makin' it all up, because it would have saved me alot of pain. Oh well... And I guess ppl couldn't possibly have migraines with their clusters... That wouldn't fit the master plan. Or have chronic TTH thrown in to make things that much more fun. Thank you for enlightening me on the fact that I couldn't possibly have clusters. Maybe now I can sleep a little easier.

Drk^Angel

Title: Re: IMITREX
Post by Bob P on Jun 12^th, 2002, 9:05am

Hey Dark,

It's not according to me. It's according to the International Headache Society's diagnostic criteria.

Yes, CH is always one sided.

Ya know, I detect some animosity in your post. Sorry if you don't meet the diagnostic criteria but that's not my fault!

Perhaps you have some kind of cluster variant. Can't give you the diagnostic criteria for that because the Society says that it is too obscure to list ctiteria for.

Some comfort for you though, Dannyboy says the Diagnostic Criteria is dead and useless.

Title: Re: IMITREX
Post by hub on Jun 12^th, 2002, 9:36am

My CH attacks start with a 2-3 hour kip 5-7.
A kip 5-7 makes a fellow go into survival mode. It is excruciating.
After that I will get a CH 1 hour after I go to sleep. I will wake up with pain so deliciously intense that I know it can't be real, because no one could endure that twisting, plunging ,white hot razor, searing my eye, and distinct slices of my tortured brain.
After an almost sleepless night of multiple attacks of like intensity I will come to with the jelly head. I feel all muddled with a kip 1 or 2 nagging and hanging around. Now this kip 1 or 2 is still definitely CH because it is still the exact pain in the same fine lines and in my eyeball.
This will go on for 8-10 weeks maybe 12
I think, from what I have read, and from what a couple doctors have said, that I may have Cluster Headache, Classic style.
:)
hub

Title: Re: IMITREX
Post by Drk^Angel on Jun 12^th, 2002, 3:27pm

on 06/11/02 at 14:19:03, Bob P wrote:

Nope. CH is not different for everyone.

CH is:

[...]

If you ain't got the above, you got something other than clusters.

Ya know... I may be wrong, but it seems to me as though you are saying that if a person's symptoms do not match the diagnostic criteria, that you so conviently listed for us, "you got something other than clusters." And it also appears are though you are saying "CH is not different for everyone." So wouldn't that mean, according to you, there can be no variants? And that because my clusters do not fit exactly the criteria for CH listed, and that there can be no variants, then I must have something other than clusters? At least that's the way your comments read. Oh well...

Drk^Angel

Title: Re: IMITREX
Post by Drk^Angel on Jun 12^th, 2002, 3:28pm

Oh... And good job at running off Penny.

Drk^Angel

Title: Re: IMITREX
Post by oringkid on Jun 12^th, 2002, 4:37pm

There are headaches called "Cluster Variants" They are headaches that are different than classic clusters. They are classified separately.

Clusters were once said to be "migraine variants". Now we know differently.

Sherry

Title: Re: IMITREX
Post by Bob P on Jun 12^th, 2002, 4:58pm

Dark,

I'm not gonna argue the point with you. The full diagnostic criteria are linked on the OUCH "Diagnosing CH" page and also in the general section of the library. It says what the diagnostic criteria for CH are. It also addresses CPH, TJN and mentions cluster variant.

If you want to add your own exceptions to the rule to the criteria, take it up with Goadsby and Kudrow and Diamond since the IHS is their organization.

As an added comment - I do belive there are a lot of people around this site who believe they have CH but in reality don't. I don't really mind this but it's a shame because they may be pain free sooner if they were treating the right disease.

Title: Re: IMITREX
Post by Drk^Angel on Jun 12^th, 2002, 5:01pm

But a variant to CH is still CH... Just like how there are different variants to cancer and other diseases, but someone wouldn't say that someone with skin cancer doesn't have cancer just because it's a variant. According to Bob, if you don't have the classic CH symptoms, then you have something other than clusters.

Drk^Angel

Title: Re: IMITREX
Post by Drk^Angel on Jun 12^th, 2002, 5:28pm

Since Bob decided to post his idea of the only criteria for cluster, I'll post a few other lists of symptoms for clusters from some sites:

Here's what the National Headache Foundation at http://www.headaches.org/consumer/topicsheets/clusterheadache.html has to say about it:

Typical cluster headache characteristics include:

• pain almost always one-sided
• pain remains on the same side during a series
• pain can occur on the opposite side when a new series starts
• pain is localized behind the eye or in the eye region and may radiate to the forehead, temple, nose, cheek or upper gum on the affected side
• the affected eye may become swollen or droop and the pupil may contract
• the nostril on the affected side of the head is often congested
• nasal discharge and tearing of the eye is on the same side as the pain
• excessive sweating
• face may become flushed on the affected side

Hmmmm... Almost always one sided... Interesting.

Drk^Angel

Title: Re: IMITREX
Post by Margi on Jun 13^th, 2002, 10:01am

Drk^Angel, I don't mean to be rude, but you're proving Bob's point...

Yes, skin cancer IS still cancer....but would you treat it the same way you would treat lukemia or bone cancer? Nope. Yes, all types of cancer fall under the same umbrella, but each kind requires different treatment. Yes, you have headaches. No one's arguing that with you. But if you're treating yourself for cluster headaches, when you might have a different form of headache - you're not going to get much relief.

The POINT of people urging newcomers here to get an EXACT diagnosis with regard to their headaches is not motivated by snobbery. It's motivated by wanting people to get the right treatment for the right disease.

And, I think in that description that you posted, the word 'almost' is used to indicate that sometimes the attacks can switch sides. Not that they can be both sides at once. Migraine is a 'whole head' kind of thing. I have never heard of a cluster sufferer getting hit on both sides at once. I think their head would probably implode if that happened.

Title: Re: IMITREX
Post by johnrudd on Jun 13^th, 2002, 7:37pm

If anyone wants my symtoms, they have to take the HA's with them!
John

Title: Re: IMITREX
Post by Penny on Jun 13^th, 2002, 9:03pm

Well it looks like thank God I only have migraines. The doctor called me today and said that they are definately migraines and not clusters. Good Luck to all of you in your battle. I feel for all of you, because I know how these make me feel and the work that I have missed and for you to have something worse I can't even imagine. Well since I don't have Cluster's I will leave this chat board. Take care and may god bless each and everyone of you to survive the demon that tortures you.

Penny :'(

Title: Re: IMITREX
Post by Drk^Angel on Jun 13^th, 2002, 10:44pm

Margi... Are you aware that migraines used to be considered unilateral only? Some sites still state that they are a unilateral HA.

Also... Are you trying to say that a cancer support group would discriminate against skin cancer? How about a migraine support group... Would they discriminate against the various variants of migraine?

And finally about bilateral CH... I have CH... Sometimes it's only on my right side... Sometimes it's on my left side... And sometimes it is on both sides. You say you've never met anyone with bilateral CH... But is that supposed to prove that it doesn't exist... I've never met anyone in real life that has CH at all, but that doesn't mean that CH doesn't exist. I've read various studies on CH, and treatment of CH, and a few of them have had bilateral CH patients. There was even a case study posted on this board a while back describing electrodes being implanted into the hypothalamus of CH patients, and one of the patients was bilateral. Why is it so hard to believe? Think about it... If the defects that cause CH occurs on both sides, it'll cause attacks on both sides. These attacks may be mainly on each side at a time, but that doesn't mean that the cause of the CH couldn't occur on both sides at the same time.

Oh well... I'm done with it... I don't have to prove myself to anyone. I will continue to try to help the ppl that need help. Y'all that feel it is necessary to run off anyone that don't seem to fit your definition of CH exactly, have fun... So be it...

Drk^Angel

Title: Re: IMITREX
Post by williamsmh on Jun 14^th, 2002, 10:23am

I have to say something here....

There are many, many conditions that are diagnosed by a set of symptoms to help the medical community sort out different diseases, disorders, etc.

That doesn't mean that everyone suffering from them fit into a nice little box... it means that there are a set of common symptoms that occur with a condition.

I think we're splitting hairs here.
If someone is experienceing headache that generally fits into cluster, their neuro/dr. says it's cluster... who cares about the details!

I agree that if someone isn't close to the definition we should encourage them to find a diagnosis and get help, but.... splitting hairs is not productive for anyone.

For a long time I was not diagnosed with cluster because I didn't have the red, watery eye.... All kinds of neuros/dr's etc. said you have to have this or you don't have cluster (Of course, every other symptom fits, but this one - and my eye does droop and I have the nasal congestion). I suffered needlessly for a long, long time because I was convinced that I didn't have cluster....
Never tried oxygen, didn't try the cluster drugs (verapamil in high doses), etc.

My point is that there is middle ground...
People should know the symptoms...
Should be told that things don't sound normal for clusters!
But telling them they don't have them because one or two criteria is not our place....

I have clusters and migraines.... Some of my headaches don't fit the cluster criteria (because they're not cluster), but I do have both!!! Could be the case for others and they just don't know which headache is which.

I think everyone is trying to help.... I don't think this is anyone trying to be exclusivist, but we have to be careful... people are already frustrated and hurting... we need to support them with their condition, but also emotionally.

Mark

Title: Re: IMITREX
Post by kristi on Jun 14^th, 2002, 3:07pm

Excellent post Mark.

Title: Re: IMITREX
Post by Drk^Angel on Jun 14^th, 2002, 9:34pm

Very well said Mark! Much better than I've been able to say. Thank you!

Drk^Angel

Title: Re: IMITREX
Post by Bob P on Jun 16^th, 2002, 9:03am

Penny,

Glad we were able to point you in the right direction. Good luck in treating your migraines, they sound like an equally miserable condition.

Title: Re: IMITREX
Post by Penny on Jun 17^th, 2002, 6:23pm

Thanks Bob, I appreciate the help all of you have given to me.

Penny

Title: Re: IMITREX
Post by SteveY on Jun 29^th, 2002, 4:45pm

I went to see a guy in London last year and he told me the cluster(his word not mine) can occasionaly switch sides.

He also said that on occasions, though rare the pain could fire on both sides at the same time(which I've had and believe me that hurts.)

But what the fuck does he know, sorry Manjit you don't fit the IHS description.

So shut down and fuck off?

CLUSTERS DON'T FIT A REGULAR PATTERN FOR ANYONE.

PFDAN

Steve

Title: Re: IMITREX
Post by SteveY on Jun 29^th, 2002, 5:06pm

PS

With reference to the IHS.

The world is definately flat: Royal Astronomical Society 1491.

No It's fucking not : Christopher Columbus 1492.

Title: For SteveY
Post by Ueli on Jun 29^th, 2002, 9:55pm

SteveY, just for the record:

The ancient Greeks, Pythagora and Aristotle for example, knew for sure that the earth is spherical. Eratosthenes, a scientist from Alexandria (~250 BC), even measured the radius and got a value only 2% off the modern value.
Columbus too believed in a round earth, otherwise he wouldn't have attempted to reach China 'the other way round'. That he didn't listen to people living one and a half millenniums behind the time speaks for him.

The IHS is a modern institution, with lots of top notch people, by example Dr. Peter Goadsby. The purpose of a rigorous classification of headaches is to give the frame to treat each headache according to its needs. (We all have heard of the devastating results from doctors who only know migraine and sinusitis). The aim of the "strictly unilateral" specification is to exclude those who say "my whole noggin is hurting, I must have double clusters" (and for good reason IMHO).
The IHS criteria for clusters do nowhere say, neither explicit nor implied, that the attacks cannot switch sides.

But stretching the CH criteria in such a way as to include a "3 day Kip #10 attack" is of no benefit for either side.

If a headache does not fit the IHS criteria for CH, it must be something else. And treating it as CH is surely not optimal.

PFNADs,
Ueli

Title: Re: IMITREX
Post by SteveY on Jun 30^th, 2002, 2:44am

Once again Ueli, well stated.

I am merely trying to point out that this awful condition does have variants.

The fact that some are chronic and some are eposodic with different remision times proves that.

I agree though that cluster attacks don't last 4 days, so Penny probably has migraine.

Just food for thought, thats all.

PFDAN

SteveY

Title: Re: IMITREX
Post by Bob P on Jun 30^th, 2002, 8:57am

I just don't understand making up your own diagnostic criteria?

May as well say my head hurts, it must be a heart attack variant.

BTW - My clusters fit a regular pattern so the statement that nobody's CH fits a regular pattern is erroneous.

Title: Re: IMITREX
Post by rick on Jun 30^th, 2002, 9:23am

I'm growing a third eye in the middle of my forehead and a prehensile tail. Is this a cluster variant, or a side effect of Depakote?

Love,

-R

Title: Re: IMITREX
Post by eyes_afire on Jun 30^th, 2002, 12:31pm

Uh oh, Rick. I think those are side effects of listening to too much devil metal. Damn, you shoulda never listened to those Norwegian metal bands. ;) :D :D

Title: Re: IMITREX
Post by Donna on Jun 30^th, 2002, 12:52pm

Let's not get all hyper about this. Nobody wants to see anyone suffer any kind of pain. But.......it does need to be properly diagnosed if the proper help is to be found.

I have only heard of there being "cluster variants" here within the past few months. I suffered with clusters for 28 years and never heard of anything but the classic symptoms. My son has classic cluster headaches. All of the material that I have ever read described the classic cluster symptoms. I, at this point in time, don't believe in cluster variants except a big "perhaps" for CPH'

I can't understand why some people would be insulted if they discovered that they didn't have clusters. I would certainly hope that they would then be anxious to find the proper diagnosis and be thankful that they were treated for the proper disorder.

Cluster headaches have just begun to see a very little light at the end of the long tunnel. OUCH was organized to try to bring our plight to the attention of the public, medical professionals. etc. To now confuse the issue would be a giant step backwards. That is why our front page here boldly states our position.

It's really very simple to find out if you are a clusterhead..take the quiz. If you don't fill the bill, then you do not have cluster headaches. Plain and simple.

Can a clusterhead work, play, read or do ANYTHING that takes concentration or conversation while in a full blown cluster attack? NO.

The scale goes up to 10. There's no 10-1/2. A true 10 will without a doubt send you to the nearest hospital.

Like Margi and Bob said, there's no such thing as a 2 or 5 day cluster headache. They ( a full blown cluster) will last perhaps up to about 3 hours, usually less. They are definately one sided. Your eye will turn dusty rose colored, then red, and get droopy. I can see one coming on my son before he even knows it's coming. And when it does, he down and groveling in unrelenting pain.

Many people have more than one kind of headache, but they all have different physiologies than clusters.

Please take the time to do research. Don't take offense. Our biggest fear is that our little known disorder will be intermingeled with other headaches.......and that spells "NO HOPE" for us.

Please don't do that to us.

Title: Re: IMITREX
Post by Donna on Jun 30^th, 2002, 1:40pm

I wonder why my post does not show up on this thread, but if you look under "reply" and scroll down the composit of posts, it appears there?

Title: Re: IMITREX
Post by kristi on Jun 30^th, 2002, 10:43pm

Hey Donna!

I'm repeating myself here - thought I'd let you know that it your posts show up for me, both on this thread and when I hit reply and scroll down through.

PFDAN!

K

Title: Re: IMITREX
Post by Drk^Angel on Jul 1^st, 2002, 6:33am

Just thought I'd let ya know, that I did take the quiz, and according to it's criteria, I have CH. Also, the director of the UPMC Headache Center Has diagnosed me as having CH, and he is one of the leading headache doctors in the area, and sees cluster patients everyday. The only answer on the quiz that differs from the "normal" answers is the question that asks if the pain is always on the same side of the head. I do indeed get the pain on either or both sides of my head. And I did have a time that it seemed that I had a continuous attack for more than two days, but Ted may be correct that it was multiple attacks, that I assumed was just one. I'm not sure. All I know is that I was in agony for more than 2 days, not sleeping, not eating, scaring the shit of my wife and her begging me to go to the ER, but I didn't go because of reasons I have listed in previous posts.

Furthermore, I'm not getting insulted by "they discovered that they didn't have clusters", because I have clusters. What I find insulting is ppl claiming I don't have clusters because they don't believe in variants. The purists don't believe in cluster-tic syndrome, or cluster variant syndrome, or cluster migraine syndrome, although well respected doctors have done studies on these variants, and have observed enough of them to determine that it's not just a random, unique diagnosis. The IHS occasionally updates their guidelines because of the fact that new information is found, and must be added. The guidelines are just that... Guidelines. They are not chisled in stone, and unwavering.

As I've said before... It doesn't matter what anyone thinks. I have clusters. That's my current diagnosis, and it comes from a respected doctor, and my symptoms are generally similar to the IHS diagnostic guidelines. Y'all can believe what you want. So be it...

Drk^Angel