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Roxy
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Can someone please explain?
« on: Dec 26th, 2002, 1:22am » |
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I hope ya’ll will bear with me through this post….if you have to slam me for being a dumbass, do it quick…it's not as painful that way!
Everyone talks about their pain level on the kip scale. I know that most everyone is on medication, preventive and abortive. But when you have an attack, and describe it as, say an 8 on the scale…is that what it reaches with the imitrex, or does the imitrex not work…and it goes to an 8. I’m guessing everyone tries an abortive…but when do you take it? When it’s a 4…5…or 6? Does your abortive work everytime? Or is it a hit and miss deal? Or if the oxygen doesn’t work, does the ch just keep climbing up the scale to the top?
I’m new to imitrex—haven’t even been able to get the shots yet, or any oxygen…and I’m running through my nasal sprays like damn nose candy (if you can buy it on a street corner…I’m looking for that corner!) But if I don’t use them, my ch’s don’t ever stop at a friendly level. Can you have a ch, and it only go to a level 6?
I guess what I want to know is, can you have a ch, not take an abortive (or have your abortive not work), and have it stop at a bearable level? Logic tells me, that as many ch’s as some of you have everyday, you can’t shoot up with imitrex every time.
If this doesn’t make sense to anyone else…forgive me. ..... should have received a brain for Christmas!!!!! These damn things have just pulled me through hell the last couple of weeks….brain dead and punchy….and still staring at my welder and cutting torch….really, REALLY, wanting that oxygen.
Roxy
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forgetfulnot
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Re: Can someone please explain?
« Reply #1 on: Dec 26th, 2002, 1:48am » |
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Quote:| I guess what I want to know is, can you have a ch, not take an abortive (or have your abortive not work), and have it stop at a bearable level? |
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For me the answer is no, there is no bearable cluster headache.
I either have one or I don't, not much in between as described in the Kip scale.
Lee
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jonny
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Re: Can someone please explain?
« Reply #2 on: Dec 26th, 2002, 1:52am » |
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on Dec 26th, 2002, 1:22am, Roxy wrote:
I guess what I want to know is, can you have a ch, not take an abortive (or have your abortive not work), and have it stop at a bearable level? |
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Not in my 27 years chronic!!
......................jonny
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Jarvis
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Re: Can someone please explain?
« Reply #3 on: Dec 26th, 2002, 3:46am » |
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Roxy I take no meds except ephedrin but when I did there was never a time I remember Stopping at a bearable level wether it was immitrex or whatever........I now do pushups to get the endorphin thing going and yes at times when the muscles really burn the CH will stop at a lower level and quickly disipate "if" I start early enuff... Otherwise they go full strenght and i literally muscle thru it but the time frame is less... As far as immitrex is concerned like any other method You must take at the very first sighn not at k2,3,or 4 or it will start to work only after the CH is allready at its peak. For me it seldom takes longer than 5 or 6 minutes to reach a k10 but I can get in a good number of pushups in that time about the same time it takes trex shots to work.
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j.halber
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Re: Can someone please explain?
« Reply #4 on: Dec 26th, 2002, 5:02am » |
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Hey Roxy: Sad to hear you are having a bad time of it!For me I take no prevent meds, nothing seems to work for me,and the imigran(imitrex) nasal sprays are not my thing either!I ALWAYS have a imitrex pill at the ready .I dissolve it in a little bit of water and that way, although it is slightly less potent ,it gets into my system faster.I take this immediately when i feel ONE coming on.This either helps or not.As you say hit and miss.But yes i recommend you take it as early as possible.That seems to be the trick with many of the methods written here, do it as early as possible.And when I am able to touch it the method that terrylc describes has worked for me sometimes as well.Applying a LITTLE pressure on the nerve up the neck(You know it because it is sensitive or slightly painful) and slowing the heart rate at the same time.Breathe into your tummy ...slowly.But in the end unfortunately there is, for me anyway, nothing that works each and every time.Wish I could be more help.Hang on Roxy,the pattern will change!
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suzy617
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Re: Can someone please explain?
« Reply #5 on: Dec 26th, 2002, 6:07am » |
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Hi Roxy, Sorry to hear of your pain. I have found over the years that my ha's during the day never quite go to a kip 10 but last much longer then the ones that wake me up whether I take imitrex or not. The night ones almost always hit near a kip 10 but disappear much more quickly. This is with the imitrex tabs. I have just gotten rx for injections so havent tried yet but I'm guessing it will still get to a kip 10 before the injection will work, will just disappear more quickly.
suzy
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bwags
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Re: Can someone please explain?
« Reply #6 on: Dec 26th, 2002, 6:51am » |
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Roxy, That's not a dumb question?? for me the scale means at what level the pain max at when it stopped. wheather you used O2 or injections or any other abortive methods. for me I hit the O2 first, followed by the Imitrex injection ( durring your cycle you should be careful of the amount of sumatriptan you use, they recommend no more than 12 mg in 24hrs ) if the O2 doesn't slow or beat the attack only then will I use the injection at the KIP 6-8 scale. Hope this helps alittle.
PF for 10 days............bwags
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marty
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Re: Can someone please explain?
« Reply #7 on: Dec 26th, 2002, 9:55am » |
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on Dec 26th, 2002, 1:22am, Roxy wrote:
I’m new to imitrex—haven’t even been able to get the shots yet, or any oxygen…and I’m running through my nasal sprays like damn nose candy (if you can buy it on a street corner…I’m looking for that corner!) But if I don’t use them, my ch’s don’t ever stop at a friendly level. Can you have a ch, and it only go to a level 6?
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I don't think that there is a friendly level af CH. I am in the same situation as you with the Imitrex, inj. I was given the Imitrex and O2 late last summer and as I brought it all home - I cycled out, so I have not tried it yet.
But during the 5 years that I have fought this SOB (episodic), I have found that the Kip scale is a general tool that has to be applied to each and every one a little bit differently - depending on who you are. As to me, a K-8 is when I go from a standing to a kneeling position but it does not always reach that point - sometimes it will stop at a K-6+ or 7 - but that is not pleasant at all, it only means that I can somewhat control myself. (I am not sure that made any sense).
I have also wondered about the Imitrex Inj., since you can't take it every time that you get hit. For me, I usually have three attacks per night and about 3 per day and I guess that I have to figure out when I get hit the hardest and try to abort those..
Marty
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Roxy
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Re: Can someone please explain?
« Reply #8 on: Dec 26th, 2002, 10:03am » |
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bwags,
Thanks for the help and info everyone, but unfortunately I don't have episodes, I'm chronic...so it's a day in day out thing. Sometimes I might go three day w/out one. Once my "so called remission lasted 3 wks". But then I'll go quite awhile w/3 or 4 a day. They are on no schedule...I think they like the surprise aspect...the little sob's. I used 4, 20mg, sprays yesterday, but made it through one this morning at 4:30 w/nothing but exercise out in the 30 degree weather. At least we're out in the country, where no one can see me running like an idiot at that hour.
I'm walking out the door for a trip to Dallas (tempted to park in the neuro's office and beg him to see me NOW!), and only have one spray left...so it could be a really fun trip. Nothing like being trapped in a truck with a ch. and kids!
PFDAN, Roxy
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Brassbear
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Re: Can someone please explain?
« Reply #9 on: Dec 26th, 2002, 10:36am » |
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Roxy, I'm glad you asked. I'm new at this and just learning. So far all my doc has given me is imitrex tablets. No O2 or anything else. They haven't told me whether I'm episodic or chronic yet but so far I've only had two PFD this month. Today is not one of those days. At this point I've not managed to stop a CH and there hasn't been one that I would describe as a bearable level. They all hurt.
Wishing you the best.
Michael
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jonny
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Re: Can someone please explain?
« Reply #10 on: Dec 26th, 2002, 10:46am » |
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on Dec 26th, 2002, 10:36am, Brassbear wrote:
Imagine your sitting there and you feel the beast comming on, you reach over and grab your 02 mask and within 5 mins the beast is dead....you never get above Kip 3
Imagine that you can do this for the next 32 attacks.......I've done it!!!
Beat down that Doc's door for some 02 for your own good and if you need any info on how to use it correctly just drop me a line.
If for some assanine reason he wont give you 02 we can work around that.
................................jonny 
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catlind
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Re: Can someone please explain?
« Reply #11 on: Dec 26th, 2002, 12:49pm » |
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This taken from an excerpt from Kirchners Headache Clinic in Omaha. Dr. Kirchner specializes in Migraine and Cluster headaches. Unfortunately the site doesn't offer alot of info on CH's as there just isn't enough out there, but he has some good tips for meegrainers that may be helpful for CH's. i.e. DO NOT WAIT TO SEE IF IT'S A FULL BLOWN CH.
My pain scale is not the same as the kip, pain is subjective unfortunately, but BobP I think is the one who does jumping jacks, he ALWAYS get instant kip 10's, Charlie has a technique for redirecting blood. Linda, Jonny and Elaine have all suggested sticking your face in an air conditioner, drink hot black coffee strong, use a bag of frozen veggies on your head. I personally will start cleaning like a madwoman when one starts as I have to keep moving, it doesn't stop it, it lets me distract myself long enough to get the blood pumping good and fast and hopefully deliver some natural O2 to my head. CH's are unpredictable - the patterns are generally the same, but the independant variations are wide.
Cluster Headache is said to be the most severe pain known to man. It is a periodic disease occurring in "clusters" of attacks for a time then going away, sometimes for years. It is common for the attacks to occur in the spring and fall. Men are afflicted with cluster headaches five times more often than women.
The attack profile differs considerably from that of migraine. There are no aura or prodrome symptoms. The attack starts rapidly and builds to a peak in 10 or 15 minutes. It is always on one side of the face and remains there for the cluster period. Invariably the site of maximum pain is in or around the eye. The pain is described "as if the eye ball is being pushed out." There can be other pain in the neck or the back of the head.
The pain is excruciating and described as penetrating or stabbing, but rarely throbbing. It usually lasts for forty-five minutes to an hour. The number of attacks per day vary from one to three, but can range from one a week to eight or more per day. In addition, there can be a clock-wise regularity in the attacks, such as at 2:00 AM each day.
Other associated symptoms of cluster include: drooping of the eye lid, tearing of the eye, redness of the eye, and nasal stuffiness on the sane side as the pain. Sometimes there can be weakness on the side of the face. The patients pulse rate can go down as low as forty.
The behavior of the patient is totally different than that in migraine. Instead of wanting to be left alone, these people are restless and cannot lie down. They may pace the floor, moan, scream, pound their head against the wall, or even threaten suicide. After the attack they are exhausted for some period of time.
"I decided to include this explanation in order to underscore the importance of early action on your part when you become aware that something is beginning to happen. A migraine attack involves a whole series of events, most of which occurs before the migraineur is aware of what is in store for them. These events can reach an untreatable stage shortly after the first sign of an attack. I hear many patients say that they wait until they are sure that this is a migraine before they treat it. This is a mistake! I tell migraine patients to consider all headaches as migraine, some are severe and some are not."
"The activity then goes through the Trigeminal nerve to the blood vessels on the surface of the brain in the covering called the Dura. The blood vessels are stimulated and constrict for a time. After a while they fatigue and dilate to a larger that normal size. This stimulates sensory nerve fibers and we begin to feel pain. With more time the areas where the nerve connects to the blood vessel become inflamed. A little later and the inflammation spreads along the blood vessel. As a result, the blood vessel begins to leak a protein fluid into the surrounding tissues. The result is an increasing area of inflammation, and an untreatable status"
http://www.kirchnerheadacheclinic.com/migraines.asp#classical
Cat
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Opus
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Re: Can someone please explain?
« Reply #12 on: Dec 26th, 2002, 2:58pm » |
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Roxy, I use the nasel spray too and I have found it is useless for a wake up CH. I have learned in the minuite that the pain rises which will stop at 4 or 5 and which will go to 9 or 10. I take the Imetrex as soon as I know it is not a shadow. It may take 5 minuites to abort it.
Opus 
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brain_cramps
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Re: Can someone please explain?
« Reply #13 on: Dec 26th, 2002, 8:01pm » |
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on Dec 26th, 2002, 12:49pm, catlind wrote:As a result, the blood vessel begins to leak a protein fluid into the surrounding tissues. The result is an increasing area of inflammation, and an untreatable status"
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Anyone:
Does this mean that by not using medication, permanent damage is done (ie. "untreatable status" , or does that mean after a certain point in the HA, any medication is useless?
Because of ongoing battles with RevenueCanada, and indirectly AlbertaHealth, I have not taken any medication for more than 5 years. Luckily, my clusters are VERY SHORT (around 1 month in 18 months). Additionally, by the time I can see a doc (forget about a neuro), they are long gone.
Hopefully, by next time around, these bullshit battles with the taxman will have been resolved.
As for the original post, I believe that the HA's I get during the day (not very often) can quite often peak at a "somewhat bearable level". (I realize that there are some of you that obviously not agree.) The ones at night are a different story; Usually up from 1:30 until 6:00 with no break, crash for an hour, and off to work. Yee-Haw!!! 
By the way, since not on medications, my clusters have gone from around 6 weeks to around 3 weeks.
Any comments?
Thx,
Grant
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| « Last Edit: Dec 26th, 2002, 8:27pm by brain_cramps » |
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catlind
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Re: Can someone please explain?
« Reply #14 on: Dec 26th, 2002, 8:10pm » |
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Grant/Brain Cramps,
My understand of it when reading it in the full context of the page is that it's untreatable with medications. As far as I know clusters do not cause permanent damage, but certain types of migraines can. Migraines increase your riske of stroke because of the protein thing.
Mostly, once the headache is that far along, there is nothing you can do to prevent it, and it becomes extremely difficult to treat with abortives, and impossible to treat with narcotics.
Just my take on the info. Go to the website and read all about what he has to say, he seems to know his stuff.
Cat
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jonny
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Re: Can someone please explain?
« Reply #15 on: Dec 26th, 2002, 8:28pm » |
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You said "Meegraines".....Twice!!!!
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catlind
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Re: Can someone please explain?
« Reply #16 on: Dec 26th, 2002, 8:38pm » |
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LOL I know, me bad.
But since his site is dedicated to cluster and migraines, and there's so little medical info on clusters, that most of his info covers migraines.
Just wanted to let folks know there was a place out there that MIGHT get up to date on CH's.
meegrainer bad I am
Cat
p.s. I did find the explanation of the trigeminal nerve interesting though 
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Roxy
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Re: Can someone please explain?
« Reply #17 on: Dec 27th, 2002, 1:31am » |
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Cat,
Thanks for the website. Appreciate it.
Opus,
You must have been at this a lot longer than I have. You can actually tell which of these clusterf***'s will get bad? How do you do that?
R
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Opus
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Re: Can someone please explain?
« Reply #18 on: Dec 27th, 2002, 7:22am » |
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Roxy,
I actually started using Imitrex last summer. I had CH before but it was never this bad. It is a learning process. You learn when you make a mistake and get hit with a unmediated 10. I did discover that it I put a ice pack on my head at the first sign of pain and it made it worse that it wasn't a shadow. I am sure I wasted a lot of sprays which resulted in a lot of unmediated CHs. I was only allowed 6 sprays for two weeks and could not get O2. Fortunately I figured out that if I limit sleep to 6 hours I could stop my morning CH. I slept propped up high on pillows which stopped my 2 am chs. Then I had only to deal with my evening CH.
Opus
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HowardA
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Re: Can someone please explain?
« Reply #19 on: Dec 27th, 2002, 11:25am » |
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Roxy
I am back after a year and had my first attack last night. Thank God I had my imitrex shots left over from last year. I also don't believe in scales. An attack is an attack for me and it WILL reach the max if I don't medicate quickly. I tried the Nasal. The shots are miracles for me. Get the shots Roxy. I am 45 and first used them last year, and now I don't care that I am a sufferer. The beast is dead with the shots
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Roxy
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Re: Can someone please explain?
« Reply #20 on: Dec 27th, 2002, 11:36am » |
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Sorry you're back after so long...but really glad the shots worked for you...and that you had one handy.
Last night I went to see my best friend in Dallas...her husband is a doctor. His first words when I told them I had finally been diagnosed were..."well there's medicine that will fix that..." just like it was no big deal. I spent quite a bit of time trying to educate him as best I could. Showed him the website...told him the drugs don't always work. He was surprised...he thought he really knew about them. Said he would pass the word to as many doctors as he could.
He couldn't believe so many people have had so much trouble with stupid doctors. I think he was a little ashamed of his profession.
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HowardA
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Re: Can someone please explain?
« Reply #21 on: Dec 27th, 2002, 11:43am » |
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It is truly amazing how all of us agree that the doctor's just don't get it! I am so mad that in order to get more shots for this cycle, I have to see his stupid face again. He insists that I come in to get the prescription. Anyway the only good thing about this condition are the great people in this family
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jonny
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Re: Can someone please explain?
« Reply #22 on: Dec 27th, 2002, 6:04pm » |
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on Dec 27th, 2002, 7:22am, Opus wrote:
PJB,
I may be a prick but I wont allow someone to go through pain if I can help it, You say you cant get 02.
I can help you with that, if your intrested E-mail me and I'll fix you up like I have for a few here that couldnt get it.
No lie!!!!
.....................jonny
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netniet
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Re: Can someone please explain?
« Reply #23 on: Dec 29th, 2002, 4:17am » |
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I use the nasalspray during the day when I feel the pain comming. At night when te pain wakes me I use the injections.
You can't shoot up every time, but I now that four won't kill me (didn't use four in one attack, there was a hour or two between them).
ques I have more luck living in the Netherlands, my insurance pays for all the medicine I need.
Still waiting for O2, but my neuro. first want to see me in the hospital. Last time I've been there, waiting for 3 days but the beast didn't visit me (bastard ).
The first time I didn't feel happy about not getting a visit.
net-
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Roxy
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Re: Can someone please explain?
« Reply #24 on: Dec 29th, 2002, 1:16pm » |
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I'm out of nasal sprays now. And I spoke too soon about the levels. All day yesterday, I had one that sat there like a sick sob, somewhere between a 4 or 5. And I knew as soon as I went to sleep it was going to bite my ass...and it did, I had to just get through it with nothing.
I'm online now, looking for somewhere to buy the sprays without a script. At this point, I don't give a damn what they cost...I'll pay through the nose...(no pun intended!!!!)
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