F**K

Ike · F**K

AARRGG damn ... was going well today too ... after the strom passed i was feeling good ...

Where did that come from .. Guess i wont be sleeping tonight now im buzzing from red bull and meds .... hating this shit ... hagte this buring half a head feeling ive got now too,

Board is empty hope you all ok.. Shedz im thinking of you bro, i know how bad you have had it today

Sherri

Our timing seems to suck!! I waited all day for you guys yesterday...

I kept the board up, minimized it, listened to music...then I'd check...noone.

I must've done it about 15 times...I didn't feel good. I finally gave up about 9pm my time. And watched "Dexter"...

Sorry you had that kind of nite...I think the "burning" hits are the worst, for me anyway. I find them the most unbearable. It's almost 6:30am here right now...I didn't sleep the best either.

I can't take being amped from meds...that why I cannot tolerate Topomax or immitrex, etc. I feel like Im tearing out of my skin, and losing my mind. Hope you're ok. Maybe I'll run into you sometime today.

phil h

Have a better day Ike ...........

The storm passing usually brings relief , maybe not immediately............but it will come !

Ike

Holy F**k

Maybe the worst hit of my life,

phil h

Hang on ! It will pass .....

Sherri

What happened?? Super long...or super intense or both?

Hang on tight Ike...if you hang on, you'll make it. We're waiting for you, and thinking of you....

Ike

Holy F**k that was a new one .... Ive never had one start from the back of my head, This burning pain started at the bottom of my skull, Worked it's was up in what felt like seconds then hit the spot and became the most intense hit ive ever had k11 ! and lasted about 2hrs it really was the worst one ive ever had and has now changed the kip scale for me...

Im praying i never have that again ever.. My neck shoulder and top of my back are stiff and 'burn'

God i love you guys i really do... i was trying to think about standing there with you while the hit was there and we were hugging and chatting away.. That really helped me through it....

Sherri

Ike...they're the kind of hits I get all of the time...the shoulder pain, then it travels up, and the pain is beyond mind blowing....

Always, think of us, all around you...comforting you, picking you up...I often use that too...

Im so sorry you went to level 10++++...it shakes you up.

Ike

Thank you, I get what i call normal ch, but the just starts behind the eye and gets worse and worse, Ive never had it start from there holy F**k that was new...

Maybe it's more intense because it's different? im not sure, I have never felt sick with ch ever this was the first time, weird i couldnt see right it was just a mess and the new symptons were like a curve ball..

Sherri

Mine began that way...I remember saying "This may sound wierd, by my headaches start in my shoulder. My shoulder hurts, and I keep rotating it, rubbing it...then it travels up to my neck, my neck becomes like steel...and then the temple pain, the eye, the face...It happens very, very quickly...within 5-10 mins you're at that 10+++++ level. And when it happens over and over in the same night...that's were the suicidal thinking starts coming in...or hurting yourself...put simply it's unbearable.

I truly thought it was just an individual thing, but I have read all of those symptoms in a medical textbook. Hopefully, for you, it's a one time thing or a once in while thing...

That's why I tend to get terrified, because I know that Im going to a hell that not too many people could possibly understand. You find all the things you felt in CH literature. Im so sorry Ike... :smt022

phil h

More F**k variations of this F**k up deviant form of migranes we have . No rules , changing types of attacks , we adjust to a new part of hell and then the beast offers/forces to experience new parts of hell . Our realities suck................but , it is what it is .............varying temperatures and burns in hell .........................then it passes leaving us wasted and confused about changes..... we survive , sometimes not too well.......................tightness in the back and neck is a source of pain waiting to F**k us . We need to tend to those areas and try and relax and sooth the tightness ......either good deep tissue massages to rub out the knots or shots .......... either way a second set of hands is needed ........................Lord I pray for our salvation and continued adaption of survival/preventative skills to lessen our pains . I also pray that our pains may be taken from us . Amen.

Shedz

Shit Bro and you Sherri, and there was me thinkin I was the only one.... Seems to me a few people get them that way now and again, when that happens to me thats what I always classed as a K10

My Dr is trying to get me a referral for the Pain Management clinic in Norwich where they do deep tissue massage to get rid of the tightness in the muscle, to me it feels tight as a piano string....
Wishing you all some respite however it comes

Sherri

Paul...

Do yours always start in your shoulder too? I don't talk about it much, I don't want to have a pissing contest with anyone. They hurt no matter what...

To be honest with all of you I don't know what anything less than a 10+++ is. I don't understand a "kip 6 or 7, etc". It's ALWAYS THE SAME. My pain level is always over the top...from hit #1. Probably because my neck is really messed up.

I don't' understand "shadowing" either. I understand residual pain...afterwards, when I feel like I've been beaten almost to death. I try to understand....

At times, I've told you guys before, I get the sensation that there's a pebble under my skin, above my left eyebrow right in the middle...but that means a CH is eventually coming. My head also gets achy, meaning the same thing. It doesnt last long, it comes quickly after I feel those symptoms....I get pain in my gumline as well. My left front tooth aches....oh God, and my face.

Please understand, I am NOT saying I have it the worst....or comparing myself to anyone. It is what it is. Im just telling you all the truth...this is what CCH is for ME.

Im not attempting to tell you I have it worse than all of you. Just like I don't understand shadowing...and 6 or 7's, Im sure you guys can't understand me.

There is no "worst hit of the day"...they're all just as painful. I have different types of pain...as I said the burning one is the worst.

God, that felt good to say finally. Im sorry....please don't be angry at me.... :smt022

Ike

I class a shadow as the same pain as after a hit but it's before and doesnt turn into a full hit but can last hours and hours... But i still class this as pf so when i say im pf im still getting shadows but not the full hit it's self...

I guess thats how i describe it, Its a hard ball sometimes as it's almost always a curve ball !

Hugs guys

Ike

Shedz i hope the pain clinic does some good for you i really do

Shedz

Sherri, a normal hit usually starts in my neck and behind the eye. it feels like a tickley crackle, the only way I can describe it I suppose. When they start in my shoulder it feels like the pain of Sciattica deep in the muscle which works it's way up the back of the neck, head, temple and eventually my eye. I say these are my "10's" because I go mental, sometimes break stuff around the house and ALWAYS end up using the Imigran pen. A shadow for me is the pain of a hit but just "dulled", so sometimes I can deal with it, sometimes the 02 comes out.
When Ike and I have met up in the past we've sat and compared symptoms etc and have some things in common and others completely different.
I think its good to put yr pain in words sometimes.....

Wishing you all some PF time

Sherri

YES YES YES Exactly!!!!!

It's deep and runs around my scapula, in the perfect boomerang shape, I feel like digging my fingers under my shoulder blade, and pushing, then in almost a perfect diagonal line, it runs up to my neck...

Yes...you do go mental. I have worked very hard on talking myself down mentally...I end up cutting myself at times, slamming my head and face into any hard surface, its so, so unbearable, and I don't believe that it's going to end...seriously, Im in a psychotic state of thinking that I will feel that pain until I take my last breath.

Sometimes, I just cannot calm myself down...I tear the house apart literally...burst out in tears...then pull back...it scares me that Im losing control...and I have no idea when or if it will end.

Its very frightening...sometimes when my shoulder starts, I feel my eyes fill up with tears...and start thinking "Please God No...Please"...I cant do this...or I can't do this AGAIN tonite.

Thanks Paul. You have no idea how much it meant to hear that from someone else...and to be able to say it myself...

:smt022

Ike

It's new to me but staying, Mine always started with a burning nostril and then the extream ring behind my eye and and felt like a red hot rod was stuck in my eye and another going into my temple and the worst pain where the two would meet... That part is the same but starting in the shoulder and back of the head waves of burn untill it hits the eye and then its the same as always but with the new bits added

Sherri

Ike, Paul, Phil, Jill....
Do any of you get the sensation like scalding hot liquid is being poured in your ear canal, runnng down into the side of your neck? It REALLY HURTS. So many feelings of excruciating pain, in so many areas all at the same time, is....simply unreal.

I know the hit is coming to end when my body temp drops...even though Im still in pain, my body starts cooling down....my teeth chatter and and I get cold sweats....because Im soaked from being drenched in sweat...I also get this bang bang bang feeling....in my forehead, then ear...that means it's coming to an end....I've grown to love gettting cold, my teeth chattering....I put my clothes back on...I rip them off many times during a hit...then Im so cold....I put some back on and usually wrap a blanket or towel around myself too...Im just curious...

I am very embarrassed to admit these things....but I really want to know what you all go through. Thanks. You don't have to answer these things if you don't feel comfortable....I understand. I feel very exsposed saying this publicly, but if there's someone else out there feeling these things, I want then to know they're not alone. I feel so angry talking about it :smt022

Jill

Hey,

It is so weird the way that CH works and how each of us is a little bit different and a little bit the same.

I get cold just before I get hit and also when the hit is over so the cold is a love/hate thing for me. I get very hot during the attack though but I think that that is because I am fighting so hard and moving so much. Who knows though.

I do get pain in my neck but it very rarely starts from there, I can feel it in my ear more. I do get the sensation of the liquid but it is going into my ear - does that make sense?

I know what you mean about having so much pain in so many areas, it is so hard. And I cannot grab all of those places at once.. I can my ear and my eye using two hands but what about the cheek or the neck? It is overwhelming to say the least.

I have noticed that I do get this tingling on the left side of my head - I swear that I could draw a line down my scalp that seperates the tingling from the nontingling sides. It is the oddest feeling and most times means that something strong is coming, other times it is random.

Sherri, you do not have to be embarrassed about posting here because you are among friends who understand more than you can know!

Hugs to all
Jill

PS CH SUCKS!

Ike

Ike

Sherri DONT ever feel you cant post anything here it good to hear things that we all relate to it helps us help each other, Anything goes ok, If you need to though use hidden so it's not as public love ya

Sherri

Thank ALL of you...for your candor, bravery, being open about this...

The ear thing is excruciating...it's like someone took a tea kettle right off the stove and begind pouring it into my ear....and I feel it run down my ear canal into the side of my neck, along with all the "classic" symptoms going on at the same time...

We could have some interesting costumes if we drew where our pain is with a pencil, and filled it in with face paint...seriously.

Thanks Paul, Jill, Ike, Phil...Im sorry for what Im thanking you for, but you all are a great source of comfort for me, more than any of you realize.

Shedz

I dont get the feeling of scalding liquid in my ear, its more like over my scalp and down the back of my neck, friends have even said that the skin feels hot to touch.Cold is my friend when being hit, I use ice packs and carry chemical ice packs in my "cluster kit".
As the others have said, dont feel embarresd about talking about your pain because no matter how much you try to describe it to people you know they will never understand, we do

Sherri

Since you are going to make this sticky Ike...which I think is a GREAT idea...for our CH brothers and sisters we don't know yet, they may come forward, even if out of sheer desperation, it doesn't matter...

Something that also precedes a hit for me is nausea. To this day, I still don't catch on...I think "uuggh, I reallly feel nauseous, I must be coming down with something'...then inevitably, I get hit. Now this symptom, last alot longer than the others...it may take an hour of feeling that way.

Another thing that gives me an almost instantaneous hit, is jumping up quidkly...meaning if Im lying on the couch, bed...jumping up quidkly. I still do it over and over. John tries to remind me. I have to change positions at a slower pace. Im sure its the blood pressure change.

ANYONE reading this this thread...that feels all we feel, please come and talk to us...we are kind and non judgemental,and mostly we understand...

Don't take our joking around seriously, or our occassional bickering...we all have known one another for a few years, and come to think of eachother as family...but we are NEVER cruel or malicious to eachother...you wont find that here, that is one thing I can assure you.

Whoever you may be, please come talk with us....

Sherri

Another good sticky topic would be the emotional and psycholgical effects this has on us and our lives...being that it's so rare, and so few people either believe us or understand...it can be devestating and isolating.

I started to believe I was crazy...so many Dr's, family, friends were telling me that more or less. To "just forget about my 'headaches', and get over it".

I was so devestated and frustrated by that...and how it interferes with our lives, all the BS that goes along with this...I started to isolate myself from everyone...

when people see you, strangers, getting hit, they dont know "what your problem is"...many people seem to assume your're on drugs and having a bad reaction or in withdrawal..... :smt022

I love you my CH Angels

Sherri

We need more hands...definately. If you're prone to CH, you should also have four hands...

There's NO WAY we can grab all those places at once, Jill is right on target with that.