Hello everyone,

I've often wondered if I really have CH, considering that the normal meds don't work for me - only steroids. I saw this START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE link just a moment ago and began thinking.

First of all, on that KIP scale my hits are usually just KIP 5-6, rarely KIP 7-8. I remember reading somewhere though that chronics often have less intensive hits. Is this true for you chronics (or the chronics you know) out there?

Second, it says that after an attack is over, the symptoms resolve in 1-2 minutes. For me, it usually takes 15-20 minutes for the pain to gradually diminish and disappear. Never 1-2 minutes. Anyone have it similar?

Third, I don't get this "burning hot poker" thing in the eye. The pain is mostly located up and around the ear, always the temple, sometimes neck and slightly up and on the right side of the eye. I get hit on the right side, btw. The hot poker -thing seems to be something a lot of people have.

Fourth, even though the link says "Patients are awakened from sleep by pain pain in about 50 percent of cases, usually within 2 hours of falling asleep.", I don't get this either. I'm awakened around 5 hours after going to sleep. Some rare nights I'm able to sleep through the night. Is this true for any of you people out there?

Best regards and PFDAN to you guys,
- Rosa

Ungweliante wrote on Sep 6^th, 2008 at 2:59am:

I've often wondered if I really have CH, considering that the normal meds don't work for me - only steroids. I saw this START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE link just a moment ago and began thinking.

Rosa, I am not a doctor, so I can't tell you if you have clusters or not.  Even if I was a doctor, I could not diagnose you over the net.  I haven't seen your records, and I have not examined you.  So even if I was a doctor, I couldn't tell you if you have clusters.  

I DO know that there are many variations to the "text book" case of clusters.  Everything that you question, is within the acceptable variations.


Ungweliante wrote on Sep 6^th, 2008 at 2:59am:

First of all, on that KIP scale my hits are usually just KIP 5-6, rarely KIP 7-8. I remember reading somewhere though that chronics often have less intensive hits. Is this true for you chronics (or the chronics you know) out there?

You should consider yourself lucky!  I am chronic, and I get hits like yours.  But I also get them in the KIP 7 to 9 range too, and over the 29 years that I have been dealing with clusters, I have had about 7 or so KIP 10's.

KIP 10's are a very unique hit.  You know, once you have one, that it is totally different from any other hit you have had in the past.  True KIP 10's are very rare.

And yes, I do know of many chronics that get high level hits.


Ungweliante wrote on Sep 6^th, 2008 at 2:59am:

Second, it says that after an attack is over, the symptoms resolve in 1-2 minutes. For me, it usually takes 15-20 minutes for the pain to gradually diminish and disappear. Never 1-2 minutes. Anyone have it similar?

Yes, I get hits like that too.  It is wonderful when they go away like water down a drain!  What an AWESOME feeling that is!  But just as often, I get those that are slow to disappear.  Such is the nature of the beast.


Ungweliante wrote on Sep 6^th, 2008 at 2:59am:

Third, I don't get this "burning hot poker" thing in the eye. The pain is mostly located up and around the ear, always the temple, sometimes neck and slightly up and on the right side of the eye. I get hit on the right side, btw. The hot poker -thing seems to be something a lot of people have.

I used to get the hot poker, behind my eye, but not anymore.  Now, I normally don't feel any pain in/behind my eye.  It is located in my temple, cheek, jaw, and side of my head.


Ungweliante wrote on Sep 6^th, 2008 at 2:59am:

Fourth, even though the link says "Patients are awakened from sleep by pain pain in about 50 percent of cases, usually within 2 hours of falling asleep.", I don't get this either. I'm awakened around 5 hours after going to sleep. Some rare nights I'm able to sleep through the night. Is this true for any of you people out there?

The key to this question, is your own quote: 50 percent of the cases.  Some people do not get any hits, at all, during the night.  It all depends on the individual, and YOUR particular beast.  Remember, the beast is a tenacious ba$tard, and just when you think you have him figured out, he will change on you.

So, Rosa, nothing you have said has ruled out clusters, in my book.

Does this help?

Chuck

Certainly, Chuckles...can I call you Chuckles?  ;)

But yeah, well...on the other hand it's good to know that I fall within the normal parameters, but then again - I could have done without the CH :)
It's better to have a beast you know, though.

Thank you.

Edited to add: I've often wondered as well why the literature on CH almost unanimously tells of the CHs so as to every hit being the equivalent of KIP 10. This was something that kept me very confused about the whole headache stuff in the beginning. After all, how could I have CH, if I wasn't about to kill myself during every hit?

Well, I'll chime in about that last line.  It's a combination of pain, depression, exhaustion etc that leads to that line of thinking - not just each hit. Then most of us learn to DEAL with it..

My thinking is that when someone is new to CH, the pain is something they've never had to deal with and it's so intense that they think they're having Kip 10s with each headache. (I did!) But over the years -- your pain threshhole builds up to the point that a 4-5 isn't that big a deal any more.

don't know if I explained that very well and I'm not dismissing anyone's pain as being trivial because pain is not trivial and everyone has a different tolerance to it. What may be a Kip 3 for Mary may be a Kip 8 for James.

Before CH, my tolerance was very low - a couple of years ago I fell, tore my rotator cup and it was two days before I got around to going to the doctor - then he couldn't believe I wasn't screaming.

Now as to the other stuff -- I get a cramp in my ear (ever hear of that one) and my eyebrow (or behind it - can't figure it out) hurts more than my eye. None of us fit into a neat little page in a book some doctor reads (or writes). Ever see the Christmas movie "Rudolph"? We're just the toys from the Land of Misfits!  :)

Over the years I've watched others get hit and can tell you, we all handle it differently also. Chuckles is one of the worst I've seen and yet he can stand to be touched while he's having a hit..... anyone touches me .. I lash out and probably will HURT them (not intentionally, but I can't stand to be touched).

Hope this helps some. Just don't think you're weird cause you don't fit in some "mold" that you think you should fit in. None of us do.

Hugs BD

Chuck handled the questions very nicely. Agree with all he wrote.

Personally, I've had many of the variations you ask about. They come and go, shift and wander. Why should we expect to be comfortable with this little friend! <bg>

The variations are not something covered well in the literature.

On the other end untill 3 years ago I had never experienced a variation in the hits. The same frequency and intensity for 30 years. Only changes were in the duration of the cycles. Been both chronic and episodic.

I've never had the pain in the eye only the temple, of course it radiates everywhere from there, but allways centered in the temple.

Without medications hits allways subside as fast as they begin, within a few minutes.

No medication, excepting high dose prednisone, had ever helped me either untill recently.

The variations are shown here on this site in abundance.

Ya its funny when the Dr says you broke your arm why arent you screaming in pain and you say it don't hurt as much as my headaches! I also ripped my rotator cuff and the muscle that runs accross the front of the shoulder I couldnt even lift my arm to my shoulder and DR trid to send me back to work cause he said I wasnt acting like I was in pain! I said it don't hurt as much as my headaches! I had to take off my shirt and show him the deformity of the shoulder for him to believe me.

Having a baby doesn't really hurt that much either compared to CH.

Jeannie

Thank you Barbara for your kind words. We're all indeed toys from the Land of Misfits :)

I completely agree about the KIP scale being different to everyone. Considering that the human body is not identical from person to person, one could consider that the nerves and also the brain's ability to translate the signals from the nerves to pain are different for everyone. Add to that the psychological tolerance to pain based on e.g. if you're afraid of it, and you get a spaghetti of different kinds of pain.

I'm also one who doesn't mind to be touched while being hit. Sometimes when a friend or a member of the family is around, I just grab his or her hand and squeeze it for the worst part of the hit. Mother kept massaging my head a while ago during my hit, and while I first thought it might make the hit worse, it actually helped to divert the attention from the pain a bit. Why is it bad for you to be touched during a hit? Does your skin become so sensitive or...?

About the different variations and literature - I've sometimes thought if the different kinds of CH we have could be categorised into different subsyndromes based on their response to medication, length of hits, location and intensity of pain, etc. I don't know if someone has already tried to do this - probably - but I haven't seen any discussion of it. I do know that a lot of people have tried to find common traits among all the CH sufferers and most of them have failed. Perhaps this could be because we might have a different disease? In any case, it would be great if the literature would cover them better...the diagnosis would be faster, which would bring help to new sufferers faster also. I'm sure most of the doctors out there don't read this website :P

PS: Edited for spelling

- Best regards and PFDAN,
Rosa

Why do I hate to be touched? I have no earthly idea, but if someone "dares" to touch me during a hit, I "involunterily" LASH out and could hurt someone really bad. My assistant kept an employee from going thru a glass window one day when she "literally" pulled her out of my office - this woman was trying to give me a "hug".

Several others here have stated about the same thing. I "almost" touched Kip the first time I saw him get hit, but the look on his face told me "no no" and I pulled back before I did. Later we laughed about my almost early demise.

We just all have different ways of dealing with CH and we all have our little quirks.

Hugs BD

Hi Rosa,


Ungweliante wrote on Sep 6^th, 2008 at 2:59am:

Second, it says that after an attack is over, the symptoms resolve in 1-2 minutes. For me, it usually takes 15-20 minutes for the pain to gradually diminish and disappear. Never 1-2 minutes. Anyone have it similar?

I have noticed that after an attack, I can pinpoint the precise moment when the attack stops, but some pain just lingers.  It's as if someone were pinching your arm, or grabbing your arm, really hard.  It hurts a lot as they are holding on, but then there is a noticeable drop in pain as soon as they let go, but it is not as if all sensation goes away the moment they let go of your arm.  

Same with the cluster attacks for me.  The beast is pinching at somewhere behind my right eye real hard, and then it feels like the beast suddenly let go.  The rest of the pain from the attack takes about 5 minutes to completely go away.

Mine started out on the right side.  Then, after about 12 years or so, they moved to the left.  Then, after I survived the "nerve killer" blocks to the TMJ, they moved into that.  So, when I have a hit now, it's on the left, burning eye, plus TMJ, and I get that feeling in my teeth on the left side like a #10 toothache.  Everybody has some of the same, but everybody is different, to an extent.  Atypical is the word, me thinks.  I'm hittin' the O2 right now, as I'm bar-b-quein, and can't do that without a few brews.  Plus, a buddy of mine is in town from Homa, LA, due to the hurricane, and he had some smoke.  So, at least other than a #5, I feel pretty good~!

What I have learned so far, and believe me I am no expert, is that no individual suffers from 'typical' cluster.

My symptoms are similar to yours.  No hot poker, just PAIN behind my right eye and temple.  Mine generally start with severe tinnitus, throbbing pain on the left side and quickly move to the right. After that my the area around my nose and eye becomes numb, like I got punched in the face and then I get stabbed in my right temple and top of my head. During bad ones some of my teeth hurt.

Each cluster event during the day seems to have a different 'personality' if that makes any sense? They are not the same in intensity or duration or symptoms.  I have seen events on YouTube, so I now know what a KIP 7 or 8 is like. My worse ones are MAYBE a 5 or 6. I usually get 5 hours sleep before I get my wake up call and sometimes I wake up and.... no headache? Since these started in April I have not been able to sleep past 3:40 AM only on RARE occasions.

I have been lucky for a couple of weeks with several PFD's in a row, however I have been getting shadowed today.

Maybe we should take a poll of symptoms, creat some sort of reference database for visitors?

Vomact :)

My pain lingers after a hit too.

For me on the touching thing, at some points I can stand it, other points it bothers me.

When I got my compression fractures, my response was always "Don't touch me, you may make the pain worse!" but it's not the case with this. I can't figure out why I don't want to be touched, I just know it bothers me.

Usually when it's going to bother me, all of my pets decide that they want to come up and touch me, nose me, sit by me, or walk back and fourth with me while I pace. It tends to aggravate the hell out of me, but the aggravation does divert my attention.

On the other hand, my boyfriend and mother have both held my head against their chests while I sobbed from it. That hasn't bothered me so far...

Now... I was trapped in a car for about 12 hours while we evacuated from Gustav. My Aunt, boyfriend, and I were all in a car. I was in between them, so when I got a hit, I was being touched on both sides with no escape. That was hell to deal with.

At some point I leaned over and bit my boyfriends shoulder (I don't remember doing it...) and apparantly proceeded to gnaw. I bruised him pretty bad. I think I don't want people touching me because I might injure them without realizing it.

BarbaraD wrote on Sep 7^th, 2008 at 11:55am:

Why do I hate to be touched? I have no earthly idea, but if someone "dares" to touch me during a hit, I "involunterily" LASH out and could hurt someone really bad. My assistant kept an employee from going thru a glass window one day when she "literally" pulled her out of my office - this woman was trying to give me a "hug".

That made me laugh because I'm the exact same way...

I think the reason I don't like to be touched is it kind of gives me a reference point.  If I don't have anything going on at the moment to which my body can compare the pain of the headache it doesn't seem as bad.

Does that make sense?

n_lighty37 wrote on Sep 9^th, 2008 at 9:19am:

BarbaraD wrote on Sep 7th, 2008 at 11:55am: Why do I hate to be touched? I have no earthly idea, but if someone "dares" to touch me during a hit, I "involunterily" LASH out and could hurt someone really bad. My assistant kept an employee from going thru a glass window one day when she "literally" pulled her out of my office - this woman was trying to give me a "hug". That made me laugh because I'm the exact same way... I think the reason I don't like to be touched is it kind of gives me a reference point.  If I don't have anything going on at the moment to which my body can compare the pain of the headache it doesn't seem as bad. Does that make sense?

Yes.  It makes a lot of sense.

-Dennis-

I have only had the beast visiting me for 13 years, and I am eposodic, and it is scary to admit again that Chuck said some things right  >:(. (Must be the good cooking at the home)  In the 13 years my pain has changes drastically.  I like Chuck rarely get the paid behind my eye, I now only tear if the kip is at what I would call a 7 or ^.  During my cycle my hits are much more freguent and not on as much of a regular schedule (although more in evening and night than during day, rarely between 6am and 1pm) like they once were.  My pain now is mostly in temple, above eye (sinus area) top of head and back of neck.  I do however, get awakened at night, but much less often since sweet Barb clued me in to melatonin.  I am now up to 50 mg a night.  Just kidding everyone. :D ;D  Also like Chuck it doesn't bother me to be touched while being hit, although I am jump up and start pacing or moving about if kip real high.  As years have progressed I have tried real hard to try and stay calm which sometimes is successful but other times is not if pain too high.  So while there are textbook cases the exceptions probably exceed the rule.  Get PF everyone, but until stay strong.  Wishbone