Dear friends, family ... Loved Ones,

I am well aware that migraines and cluster headaches are as different as humans and earthworms.  I was talking to a friend of mine who has had migraines before and trying to explain the differences between clusters and migraines.  

My question is this:  On the Kip Scale, Where would the pain of a migraine fall?  Since I have never experienced one myself, I cannot say for sure.  From what my friend was describing, I think it would fall about the 5-7 range.  The problem is that although Clusters are quite severe, I don't want to get into a war of "who's headaches are more painful."  Pain is pain, suffering is suffering, and when one is suffering, it doesn't behoove us to try to degrade their dignity by proving that they aren't suffering as badly as we are.  

Has anyone here had a traditional migraine?  could someone help me put into context the difference in pain?  perhaps put the two on a balance and see where it tilts?

Thanks!

God Bless

Pain measurement is totally subjective, so I don't think you can easily explain it.  For example, I was asked to rate my pain after an abdominal open surgery (on the scale of 1 to 10 thing).  Knowing my worst CH pain, the question sounded like a joke.  If my worst CH is 10, post-surgery pain was 1!

I had a migraine twice in my life, only once after the CH diagnosis.  It HURT, maybe more than CH's in well managed episodes.  I knew it wasn't a CH as the whole  head was kinda pulsating, and thus I took the time to take my precious Imitrex.

Comparing CH's to other headaches hasn't worked too well for me to explain it.  And you're absolutely right about not getting into "whose headaches are worse".  All bad pains are BAD.  The closest description I have is "a tooth being drilled without novacaine, no break for an hour".  But unless one knows an extreme toothache, it's useless :).  My next choice is "a real bad ice cream headache, and intensify that by X".

I agree with MrsT, it's too subjective to make sense.

The only CH comparable pain that I've ever had was passing a kidney stone.

I don't know if that helps you any.

Ray

I get both, lucky me, and there is no doubt about what you say, a full scale CH attack isn't even on the same scale as a migraine

but not all my CH attacks are as bad as others, so some are similar if it is just pain levels we are talking about

The difference for me though is that with a migraine I know I can kill it and I know I probably won't get another for ages, and I can lie down and deep breath until the triptan kicks in.

You all know that none of that is true of CH so I don't think it is just the pain level which makes CH worse: it is loads of other things:

-the psychological impact of knowing there will be more
- the extreme stress and agitation I get with them too
- the fear that the 02 might not work
- the exhaustion after days/weeks of attacks which means I cope less and less well

etc etc

W

I get both also and the migraine I can handle (just hate the naseau that goes with it). Take something, lie down and sleep it off.

I usually tell people that comparing a CH to a migraine is like comparing a shark to a gold fish.... they're just not in the same class.

But pain is subjective. My son gets migraines and is a total basket case when he does. His pain is "horrible" and no one hurts as bad. They last for "hours". When Mom gets one of her headaches, she goes for the O2 and gets rid of them, so therefore she can't be hurting as bad as him. Right?  :) Needless to say - we don't discuss who's pain is the worst much. Mom just keeps some cafergot around when baby boy gets one of his migraines and tells him to go lie down. :)

You're right not to argue about it. Unless someone "experiences" the pain of CH - there's no way ANYONE can understand this pain.

Hugs BD

Beyond the intensity of pain is the quality of that pain: dull, steady vs. sharp, continuous vs. coming in waves, etc.

Trying to describe pain is, I suspect, like talking about wine! Many words conveying little in the end. <bg>

I too get migraines and I think that the pain type is different too.  Jeff says that clusters are like a sustained "ice cream headache" making them sharper.  

I haven't had a "migraine" in years and I used to get them in six week cycles every year.  Sometimes, they would get so bad all the bones in my face hurt on the left side.  

The pain scale reflects the largest amount of pain any individual has experienced to date.  Penalizing someone for not having had as much pain is a little bizarre.

Pain is pain,  and if we have ever experienced debilitating pain we should be empathetic to anyone around us in pain.

Kimberly

You cannot explain clusters to anyone who has not had one(plain and simple).....I started getting migraines appr. 10 years ago ( sometimes they last 1-2 days) then go away,i can function,yeah they are not fun,as far as the pain level ( they dont belong in the same sentence as clusters)......I have had to listen on a couple diff. occassions (at party's) people  telling me that their migraines are the worst pain in the world( and i am sure it is to them)i dont try to explain to them about clusters (they dont get it.....only a clusterheade does) just like i will never understand the pain a woman feels during childbirth.....To me a migraine is like your standing in the middle of the street and a child comes riding his tricycle into your leg.....With a cluster,your in the middle of the train tracks and this train runs right over you and your left to deal with the pain.....Lenny

I've had complicated / basilar artery migraines since I was 9 years old. They're far from traditional migraines, but only really compare to a shadow in levels of pain.

The sickness it causes me, and the fact I cannot use triptans, causes all forms of other problems. I never know if my treatment will work, or if I'll be sick for a week after one. The worst is having both at the same time.

However, I have had something between Migraines, and Clusters. Worse than migraines, not as bad as the clusters. Intracranial hypertension.

That simply feels like you have something squeezing your whole brain. It was godawful knowing I could go blind at any time, with utterly no warning... But there was also something I could do about it. I could let them do a lumbar puncture, and drain fluid off. There was a way to fix it. I knew if I had one done, the headache would be better, even if only for a week, and the constant vomiting would stop...

Not so with clusters.

The closest things I've had to cluster pain, would be organs rupturing inside of me (appendix), compression fractures to the spine, and having doctors jab needles into my nerve roots on accidents during LP's. The only reason the last one compares, is because it feels like they're driving nails from your spine, all the way down into your feet. The only reason the compression fractures compare, is because I literally could just stretch and one would occur, and I'd end up on the floor screaming bloody murder. No one could touch me for a little while. But it was only the ONSET that was similar...

All 3 are horrible in their own ways, to be honest. The mental effects of all three suck. But out of the three, the clusters have effected my family the worst. They have WATCHED doctors do all kinds of treatments to me, me suffer from all sorts of things... And they even say the clusters are the worst they've seen me go through.

Mystina

I hate that stupid pain scale.  It leaves out so many factors.  I have chronic migraines as well as clusters, and I have also gone through childbirth with no painkillers....
A) yes, a cluster attack can get to a 10, but you know it's going to come back down; BUT, mine last for 6 months, so it's long term hell.
B) childbirth also got up to a 10, but at that point it's not going to last much longer, and once it's over the pain is gone and you are DONE.
C) my migraines can get up to a 5 or 6, but they last for days on end, and the accompanying nausea/sensitivity to lights and sounds makes me almost completely non-functional; I can't read or do computer work for school, I can't clean house, I can't be around my kid or my fiance...

so on a PAIN scale, yeah, clusters kick @ss.  But on a MISERY scale.... that's a toughie!  :o

UnderTheRadar wrote on Nov 27^th, 2008 at 8:08pm:

so on a PAIN scale, yeah, clusters kick @ss.  But on a MISERY scale.... that's a toughie!  :o

I don't have clusters, but I do have premenstrual migraines and they have been known to last up to five days (and that's with taking triptans) and the only way I could end the headache was to knock myself out completely.  I think it was e-double who said something similar to "ch makes him hurt, but migraines make him a bastard" (or something like that).

Pain is pain is pain and it's all relative.

I've had my share of Kip 10's, and while in this level of pain, I don't think about it coming down.........I can't rationalize, I can't stand it, I just plea for it to end.  I am taken to the ER wrapped up like a whimpering ball.  So, by the time I saw a Doc, the pain was just about gone.

My headaches always ramped up from a 0 to a 9 within minutes and left in about 45 minutes,

This is a question I really don't know the answer to as I was episodic for 28 years........do people with chronic clusters live in constant pain?  Is it high level pain?  Does it wax and wain?  Is there any kind of "cycle" of higher pain and pain free time?

wrote on Nov 27^th, 2008 at 10:10pm:

My headaches always ramped up from a 0 to a 9 within minutes and left in about 45 minutes,

The F'ers can go from 0-9 in 5 min for me too, thats's why oxygen used at mach speed is soooooo important to DO!

Rolo... ;) :) :)

And if you!!! suffer from this too, you need to get O2 and use it properly!!! I believe it will work for all if they got the right stuff!!! :)

I get a migraine once in a blue moon and I’ll tell ya, they aren’t shit to a CH blaster so don’t even compare the two to me!!! :)

I have chronic CH, and Donna, I usually get hit twice a day at the same times. I'm not in pain constantly, it is usually just two hits a day, and they are around a K 6 or 7, easily killed by O2, or trex. It's easier being chronic for most people, because you usually know when your hits are coming, and you can plan for them.

When I go into high cycle, I'm getting hit every 90 minutes, with constant shadows in the high Kip range. I only use the trex when the hit starts, which is usually about a Kip 9 or higher. I try to hit the O2, but I sometimes find myself not having it available for one reason or another. I do use it at home. The trex kills it until the next one comes along. High cycle for me lasts for days, or in this case, it's been a couple of weeks. It's starting to fade now, and the hits are fewer and farther between.

I also get migraines, and they last for days at a time. The pain doesn't compare to CH, but sometimes I'd rather get hit with CH, because the pain ends fairly quickly, compared to a migraine, which goes on and on and on. I use trex for the migraines, but it only knocks it back for awhile, then it comes back with a vengeance. I go to sleep with it, and wake up with it. It sucks.

I know many of us have multiple headache types, and the pain is a different kind of pain. Headaches of any kind can be incapacitating. Is it really the pain, or what it does to us?

purpleydog is right, we chronic's know when the fan is about to hit the shit, and I use DHE IM for that. You as I, and the rest of us can only use the tool's we are given!

Roland.. :)

purpleydog wrote on Nov 27^th, 2008 at 10:47pm:

I have chronic CH, and Donna, I usually get hit twice a day at the same times. I'm not in pain constantly, it is usually just two hits a day, and they are around a K 6 or 7, easily killed by O2, or trex. It's easier being chronic for most people, because you usually know when your hits are coming, and you can plan for them. When I go into high cycle, I'm getting hit every 90 minutes, with constant shadows in the high Kip range. I only use the trex when the hit starts, which is usually about a Kip 9 or higher. I try to hit the O2, but I sometimes find myself not having it available for one reason or another. I do use it at home. The trex kills it until the next one comes along. High cycle for me lasts for days, or in this case, it's been a couple of weeks. It's starting to fade now, and the hits are fewer and farther between. I also get migraines, and they last for days at a time. The pain doesn't compare to CH, but sometimes I'd rather get hit with CH, because the pain ends fairly quickly, compared to a migraine, which goes on and on and on. I use trex for the migraines, but it only knocks it back for awhile, then it comes back with a vengeance. I go to sleep with it, and wake up with it. It sucks. I know many of us have multiple headache types, and the pain is a different kind of pain. Headaches of any kind can be incapacitating. Is it really the pain, or what it does to us?

 
Jeff is chronic also but he has no pattern anymore.  He used to be very scheduled.  So much for planning.  The only thing he uses is O2.  It will usually abort an HA in about 10-20 minutes.

His high cycles are also every 90 minutes or so day and night and last from 4-10 weeks.  They are normally in the spring and the fall. The rest of the time he gets hit once at night and one to two times in the day.

So far this fall has been kind.  We have no idea if it is going to ramp up or not :-/

Kimberly

I can only write form my own experience of both. Both have their nasty moments.

I would far rather have a migraine to cluster headache bout, stasis migraine is similar to being hit with a 9 cluster but it lasts far longer *ick*. Both cluster pain and migraine status pain leave you exhausted afterwards.
For me personally migraine and cluster at the same time is absolute hell on earth and at that point I want to cease being alive because I have all the aura disorientation and spread pain of migraine mixed with the intense icepick, drilling and burning pain of cluster and when the cluster attacks eases the migraine is still there waiting to mumpf me with its insistent throb then the beastie rattles and roars out of its cage to have another go.

Different people cope with pain in different ways, if pain is controlling you regardless if its migraine, cluster headache or some other cause then thats a good reason to get medical advice.

I am one of the lucky, relativly few, people who no longer have CH.  They ended in 1986, just as quickly as they started 28 years before.

The reason for the ER visits was because way back "then" there were no prevents or aborts...most all docs hadn't heard of Cluster Headaches thus they treated me as an allergy sufferer with Sansert and Tylenol 3, neither of which did a darned thing to help CH.  Not knowing the nature of the beast, I spent many nights sitting up or trying to sleep in a chaise lounge, but if I fell into a deep sleep, I'd be awakened with the intense pain no matter where i slept.  I just associated sleep with the pain and thought that sitting up would help.

It was a very difficult period of my life as I was raising three small children alone and, of course, I did my darndest to hide it from them when they hit.

Just remember that there is always hope, and it seems the older we get, the fewer and less intense the CH.

wrote on Nov 28^th, 2008 at 9:41am:

Just remember that there is always hope, and it seems the older we get, the fewer and less intense the CH.

So some DO experience lesser frequency and intensity with age?  Not an uncommon thing?  I've been wondering in this episode why I'm not getting the "perfect 10" that I was getting in my 20's and early 30's.  I didn't start taking Verapamil until hits became daily, and they weren't near as painful as at least 10 years ago.  I once timed myself and checked its intensity without O2 or Imitrex, and maybe it was less than 70% of the very worst CH's I had in the past, although each attack still lasts 45-60 minutes as always.

Assuming this cycle will end (hopefully soon), who knows the next one might get as bad as before, and everything could stop working. It really does feel like CH is a live beast with a mind of its own.  But if you haven't had the second episode in 28 years, yes there is hope.  It could be a strangest thing none of us can even guess, that changes our oddly dysfunctional hypothalamus to keep the beast in its cage.

Hello, I have had Both. You cant even compare the two. I have gone to work, partys, and everyday normal life things with migraines, although it is never pleasent i can carry on with a migraine, heck i can even go to sleep. But when the beast shows up, well its over. The only thing i can do is panic, scream, cry and generaly lose control of myself. Even involuntary things stop becoming involuntary, such i have to tell myself " just breath dude " and i cant even control blinking because my eyes are slammed shut. So again i would rather have the worst migraine anyday of the week rather than even a kip 6. Coach Bill

"ch makes him hurt, but migraines make him a bastard"
     BWAHAHAHAHAHHAAAA!!!!!1!!!

That is so true!!!  (At least for me!)  ;)

You know, I think part of it is how society treats the ill;  when I first was diagnosed with CH, I kept telling my therapist "I'd rather be in a hospital bed on life support, because then it's very clear that you can't be expected to do much, even though this is just as debilitating."

Now I kinda feel that way about CH vs. migraine-  while no one argued with me when they could see me suffering through an attack in class (not fullblown, but still obvious), or when I emailed my professors and told them my right eye was %$#@ paralyzed; but it's different when it's the fourth day straight of level 5 pain, nausea, photophobia, can't look at a computer screen, can't read the textbook...I'm there, I'm in class, I look fairly normal, but I have to say, "sorry sir, I haven't been done anything on the project this week"!!! :D

Oh, and I just thought of a great euphamism (actually borrowing a euphamism for sex)  for when you have CH and migraines at the same time:  bumping uglies!   ;D

I have both CH's and Migraines as well.  Migraines are few and far between for me, thank god.  I always look at the pain difference like if you have an all day migraine and took all the pain you felt during that day and squeezed it into a hour or less that would be a CH.

Like some have said pain is subjective.  It depends on ones personal experience with pain.  2 times in my life I have had pain worse than a CH.  Once I had some viral infection in the lining of my lungs that literally made it feel like I was being stabbed in the chest with every single breath I took.  By the time I finally let my wife take me to the hospital I was in tears, crying because of the pain and thought I would pass out because I was trying not to breathe because of the pain.  The other time is when I cut the tip of my finger off.  It wasn't the cutting off that hurt so much but when I was in the OR and they give you a ball to squeeze with your other hand and 2 nurses hold your arm still while the doc puts a shot in the nerve inbetween your fingers to numb your fingers.  Yeow, did that hurt!

The point is though because of those other 2 life experiences I feel like my CH's almost never reach a 10 on the scale but others who's worst pain ever is their CH's probably hit a 10 more easily.  This kinda relates to the other thread where some, including myself, said they feel kinda guilty because they don't feel their CH's are as bad as what other have described.  Different people have different pain thresholds as well.  Bottom line is no one else can really tell you how much pain you feel other than yourself.

Here's a question to you double-sufferers, or anyone else for that matter.

The other day, and this has happened a few times in the last month, I awoke with a different type of headache than I've ever felt before. I'm out of CH cycle, but all my interim shadows, etc. are always of the CH type, on my left CH side, etc.

This headache was all over the front of my head, not nearly as painful as CH of course, but kind of weird in its discomfort. I also felt nauseated. It refused to go away.

Any chance this was migraine? (as if I need that!)

many thanks.
David

it sounds like a migraine to me... but if there's one thing I've learned lately, it's that there's eleventy-billion different kinds of headaches!!!  :D

I just cant understand what is the point in comparing, be it CH with Migraines ( or for that matter to any thing).

In any case, be it CH, Child birth, Migraines, or what ever, any of the situations one suffers, hurts, so dose it makes a deference? is trying to quantify pain / suffering make one feel better, or feel supreme over the other?

I am sorry I fail to understand what is the point of this quantifying / comparing, knowing the pain level or suffering level will not make it go away, or make one feel better…….for no one….

Michael

Wildhaus

Its allways good to have a point of reference dont you think.

For you and I its not about feeling better or worse but knowing where to start in assessing our own pain. After all we cant compare a CH pain to an ingrown toenail or childbirth but we can reflect against other types of neurological head pains.

Of course its when we discount anothers pain is when we are wrong.

I think Wendy and Barb got it just about right. I have only had migraines when I was doing a lot of Trex and they might not have been migraines at all who knows. I know someone who suffers from them and I use that as a comparison. Migraines to me are a K5 at worst pain level but can last for up to two days with horrible light and sound sensitivity, and with (chucking cookies) stomach rumbling. You don’t need the O2 but the waste basket is a must.

Migraines can put you down for the count and I usually take a 100mg trex pill, 10mg amitriptyline, vicodin, and then nap them off. This is the best I can do in quantifying migraines. As a K10 (K8 on lithium) chronic CH sufferer I can say without a doubt that there is no comparison and I mean that sincerely.

Off to the O2 I go,.......

Roland. ;)

MJ wrote on Dec 14^th, 2008 at 2:07am:

Wildhaus Its allways good to have a point of reference dont you think. knowing where to start in assessing our own pain. we can reflect against other types of neurological head pains. Of course its when we discount anothers pain is when we are wrong.

My only tool of reference is the Kip Scale; it is the only tool, and comprehensive pain scale for CH!

Reflecting against other types of neurological head pains will not give you a realistic and sound answer, as there is no common scale to work with! and any condition has its own characteristics, that have no common ground, other then the location, namely the head! and both are no “fun” to have!

Knowing that CH is more painful (or not) will not make me feel better, or understand what a margarine’r is going trough.


Michael

I've been diagnosed with both, though sometimes I wonder if my "migraines" were actually always shadows. Migraines are typically a Kip 3-4 to me and may get as bad as a 6. But it's a rather apples-to-oranges thing. The worst pain you can imagine is way different before you have a cluster headache. Migraines last for months sometimes, they leave you completely wiped out and depressed, and I've heard that people with migraines have lower pain tolerances than the average person, so the pain that we would feel as mild they feel as excruciating.

I usually describe the pain using the amputation without anesthesia analogy. It tends to shut people up who are annoying me with an "I have migraines too!" business. I should probably have more sympathy, but I usually don't.