chronicclusterheadaches.co.uk

Shedz · Posted: Sun Nov 01, 2009 5:32 pm Post subject:

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

_________________
If it don't kill me,it'll make me stronger???
I push my fingers into my eyes, Its the only thing that slowly stops the ache......
http://www.youtube.com/watch?v=Xps7AM8HbjE

Sherri · Posted: Sun Nov 01, 2009 6:25 pm Post subject:

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...

_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Ike · Posted: Mon Nov 02, 2009 11:10 pm Post subject:

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
_________________
If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

Sherri · Posted: Tue Nov 03, 2009 1:14 am Post subject:

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

_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Jill · Posted: Tue Nov 03, 2009 9:43 am Post subject:

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!
_________________
What lies behind us and what lies before us are small matters compared to what lies within us.
-Ralph Waldo Emerson

Ike · Posted: Tue Nov 03, 2009 10:02 am Post subject:

Ike · Posted: Tue Nov 03, 2009 10:04 am Post subject:

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
_________________
If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

Sherri · Posted: Tue Nov 03, 2009 2:38 pm Post subject:

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.
_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Shedz · Posted: Tue Nov 03, 2009 3:10 pm Post subject:

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

_________________
If it don't kill me,it'll make me stronger???
I push my fingers into my eyes, Its the only thing that slowly stops the ache......
http://www.youtube.com/watch?v=Xps7AM8HbjE

Sherri · Posted: Tue Nov 03, 2009 3:26 pm Post subject:

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....

_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Sherri · Posted: Tue Nov 03, 2009 3:36 pm Post subject:

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.....

I love you my CH Angels

_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Sherri · Posted: Wed Nov 04, 2009 4:44 pm Post subject:

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.
_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.