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 Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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

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?

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>

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.

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

PS: Edited for spelling

- Best regards and PFDAN,
Rosa

Hi Rosa,

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


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.

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

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


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?

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.   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