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NotH20
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Re: IMITREX
« on: Jun 10th, 2002, 4:41pm » |
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Penny - glad to hear that you are getting some relief. The injections have NEVER failed me.
Hope you feel better soon.
NotH20
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Bob P
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Re: IMITREX
« Reply #1 on: Jun 10th, 2002, 4:58pm » |
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Gotta say it:
Quote:| Imitrex has taken my headaches from 5 days to 1-2 hours |
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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!
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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NotH20
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Re: IMITREX
« Reply #2 on: Jun 10th, 2002, 5:05pm » |
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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
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Drk^Angel
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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
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NotH20
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Re: IMITREX
« Reply #4 on: Jun 11th, 2002, 7:34am » |
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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
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TomM
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Re: IMITREX
« Reply #5 on: Jun 11th, 2002, 7:52am » |
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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
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"Everyone should believe in something. I believe I'll go fishing."
--Thoreau--
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Penny
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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
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NotH20
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Re: IMITREX
« Reply #7 on: Jun 11th, 2002, 8:40am » |
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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
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TomM
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Re: IMITREX
« Reply #8 on: Jun 11th, 2002, 8:42am » |
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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
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"Everyone should believe in something. I believe I'll go fishing."
--Thoreau--
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Bob P
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Re: IMITREX
« Reply #9 on: Jun 11th, 2002, 8:58am » |
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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.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Drk^Angel
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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
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Bob P
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Re: IMITREX
« Reply #11 on: Jun 11th, 2002, 2:19pm » |
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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.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Margi
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Re: IMITREX
« Reply #12 on: Jun 11th, 2002, 2:22pm » |
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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.
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| « Last Edit: Jun 11th, 2002, 2:34pm by Margi » |
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oringkid
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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
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NotH20
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http://www.mbpexpert.com/definition.htmRe: IMITREX
« Reply #14 on: Jun 11th, 2002, 3:30pm » |
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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
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MarkHW
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Re: IMITREX
« Reply #15 on: Jun 11th, 2002, 3:43pm » |
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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
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The clusterhead formerly known as williamsmh.
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NotH20
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Re: IMITREX
« Reply #16 on: Jun 11th, 2002, 3:44pm » |
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??? maybe next time I'll spell better too - sorry!
NotH20
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MarkHW
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Re: IMITREX
« Reply #17 on: Jun 11th, 2002, 3:47pm » |
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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
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The clusterhead formerly known as williamsmh.
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oringkid
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NotH2O, That is EXACTLY it! Thanks!
Sherry
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Marc
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Re: IMITREX
« Reply #19 on: Jun 11th, 2002, 6:16pm » |
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Hey Bob,
You forgot one - gender.
Women don't get Clusters.
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Bob P
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Re: IMITREX
« Reply #20 on: Jun 11th, 2002, 6:22pm » |
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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!
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Drk^Angel
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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
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Bob P
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Re: IMITREX
« Reply #22 on: Jun 12th, 2002, 9:05am » |
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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.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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hub
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Re: IMITREX
« Reply #23 on: Jun 12th, 2002, 9:36am » |
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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
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Drk^Angel
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on Jun 11th, 2002, 2:19pm, 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.
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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
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