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Topic: Please describe what YOUR cluster pain... (Read 1193 times) |
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bnfreeman
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Re: Please describe what YOUR cluster pain...
« Reply #25 on: Jul 14th, 2005, 9:49am » |
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Starts off with lightning bolts in my head striking my temple, eye, teeth, throat then nose. my nose starts to drip. Then I give birth out of my eye. It can be either side. The beast has no preference. Wierd thing is when I shadow, it's always on the right side.
Brandi
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hurtinunit
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Re: Please describe what YOUR cluster pain...
« Reply #26 on: Jul 14th, 2005, 5:40pm » |
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like my eye is being carved out of its socket by an invisible surgeon while someone else is behind the eye shoving it out, occasionaly goes into the teeth where i feel like all the teeth on one side of the mouth are rotting
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unsolved1
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Re: Please describe what YOUR cluster pain...
« Reply #27 on: Jul 14th, 2005, 11:26pm » |
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on Jul 14th, 2005, 5:40pm, hurtinunit wrote:| like my eye is being carved out of its socket by an invisible surgeon while someone else is behind the eye shoving it out, occasionaly goes into the teeth where i feel like all the teeth on one side of the mouth are rotting |
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That's a good description (of a mild one .. lol)
J/K ... it is a good description
Unsolved
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| « Last Edit: Jul 15th, 2005, 8:21pm by unsolved1 » |
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Linda416
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Re: Please describe what YOUR cluster pain...
« Reply #28 on: Jul 15th, 2005, 12:23am » |
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Mine are apparently changing, and not for the better I might add. They now start in my neck. I start to feel it stiffen, and I start rubbing it without realizing what I'm doing...that upsets me because when I do that it seems to bring them on. I get a lump at the base of my skull sometimes, it's really tender when I touch it even if I don't have a CH it's tender in that spot.
I can sit now when I get hit, but I don't stay there. I have to get up and walk around every once in a while. I start to hyperventilate if I walk around too much so I have to sit and calm myself down. This has been a particularly bad cycle for me and it feels like my heart has been working overtime. After the neck pain starts I start to get hot and shaky then the throbbing behind my right eye kicks in, it's full throttle in about 5 minutes. It kind of feels like a wicked brain freeze that doesn't stop. Searing, throbbing pain. Once it gets to that point then I have to move position. Then it starts to radiate to my jaw, ear, teeth, the top of my head and then my hair hurts. I really hate that feeling, it's bizarre. I go into the garage and sit on the bench in the dark and quiet. I don't like to be around anybody when I have these, I get really upset and it makes it worse. So, I go there and rock back and forth while poking myself in the eye socket, pushing on my forehead, and sqeezing my skull til the awful cause of the pain shoots out of the orifices of my face like 4th of July fireworks...oh wait, that last part was only wishful thinking.
Then if I'm lucky it stops, but if it was a really bad one I get to enjoy a bruised feeling half a face and head for a while, that's always fun but it is better than an attack so I'll take it.
I forgot to mention that my cycles start late at night when I'm sleeping, waking me up at 2am...always 2am for some reason, then after about a week or two of that I start having them during the day also. Normally around 2pm, and 10pm. When I have them during awake hours, once it slips away it's like a feeling of disbelief...that's an amazing feeling, but it doesn't happen every time. All of a sudden everything seems so clear, and I enjoy a huge sigh of relief...it's hard to explain.
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| « Last Edit: Jul 15th, 2005, 12:34am by Linda416 » |
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thomas
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Re: Please describe what YOUR cluster pain...
« Reply #29 on: Jul 15th, 2005, 9:58am » |
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Almost always my pain is located behind the right eye, the attack starts out feeling like some one inside my head, just struck a match against the back of my eye, and keeps holding it there. The pain begins to build from there. For the milder ones, it pretty much stays right there and I am irritable, but functional. As it progresses, it feels like there is a white hot poker being shoved into my eye and all the way to the back of my skull and another one going through my temple. It really makes me want to claw right through my skull and rip my fucking brains out so the pain will stop (but most of you know that already). Every once in a while, I will get some pain behind my cheek bone or above my upper teeth on the right side, but almost ALWAYS it is from behind the eye, into the temple and just behind the right ear. During a CH attack there is nothing else in the world, just me and the pain, and the pain is much bigger than me. I am powerless against it. I really don't understand why someone started this thread, I am depressed now, after typing this. It's nice to forget the pain for a while some times. 
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Kiwiinoz58
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Re: Please describe what YOUR cluster pain...
« Reply #30 on: Jul 15th, 2005, 8:08pm » |
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I'm a bit like Sandie as in the fact that I am now 58 and got the first CH's at 57. It was diagnosed as sinus infection, then trigeminal neuralgia before the final diag of CH. Mine are different from most as they never hit suddenly, always start with runny nose, burning nostril, aching sinus, weeping eye. Then the real pain hits in the jaw, ear and head. At first they always stared at around 3pm and lasted at least an hour each until 11pm 6 days a week. The only Med to abort me is Imigran.This went on for months until large doses of Verapamil kicked in. Wow pain free for 2 months then wham back to normal only they started each day around 10am and lasted til 6pm and every now and again changed sides. 15 months on and started Melatonin and have been PF for 9 days. Esquisite is a perfect description! BUT I still can't find out if the meds are working or if I'm in remission. God help anyone who has tp live like this!!
Jacqs
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Cooked Brain
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Re: Please describe what YOUR cluster pain...
« Reply #31 on: Jul 15th, 2005, 8:32pm » |
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Left eye and upper jaw, pounding, drilling, exhausting
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amen
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Re: Please describe what YOUR cluster pain...
« Reply #33 on: Jul 21st, 2005, 2:55pm » |
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Before a cycle starts I just shadow for a couple of days. Just a dull ache in the affected area. There have been times between cycles where i will get shadows and then the beast never comes. Talk about being on pins and needles, because as soon as i start shadowing i just know he could attack at any minute.
Always right side.
During cycle I continuously have a shadow-like he's taunting me and letting me know he's still there.
During actual cluster-Eye waters and becomes bloodshot and puffy.
Get about 4 attacks a day but 2 of them are usually only like a kip 3-4 but last 2-4 hours. The other 2 are more like kip 8-9's but only last for about an hour. My eye burns and the affected side feels hot. It feels like my temple and eyeball are going to explode from the pressure at any minute. I usually take the coldest thing i can find (I try to keep frozen water bottle in freezer or frozen peas or corn) the veggies tend to "form" around the affected area better but don't feel as cold. With the water bottle i have to alternate it between my eye and temple. I apply them as hard as i can. I don't know if it alleviates the pain really but may be more of a distracter. For some reason the frozen pressure does not bother me as much as the beast. I usually lock myself in the bedroom to hide from the kids so it's hard to move around or bang my head on the wall like i would like to without scaring the family so I usualy stick my frozen object in my pillowcase, put the pillow over my head. This helps to apply the pressure AND muffles the moaning and crying. Then i just rock and rock until it's over.
Gosh towards the end there it started to sound like i was talking about a porn movie! LOL
Andrea
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Juce
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Re: Please describe what YOUR cluster pain...
« Reply #34 on: Jul 21st, 2005, 4:44pm » |
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Linda, I would have swore that I had told you exactly how my headaches come and feel and you wrote it down. You described mine perfectly. I havn't actually been diagnosed but there is absolutely no doubt in my mind that I have CH after reading your post.
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Lissa
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Re: Please describe what YOUR cluster pain...
« Reply #35 on: Jul 21st, 2005, 5:07pm » |
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on Jul 12th, 2005, 10:19am, GlendaB wrote:| I''ve been having clusters since i was around 16 years old. |
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Me too. 
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RobinHarber
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Re: Please describe what YOUR cluster pain...
« Reply #36 on: Jul 22nd, 2005, 2:12am » |
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I'm a cluster sufferer for 12 years. My headaches have always been exactly the same.
I'm a right-sider.
It starts with a dull heat in my temple, behind my eye- along with an ache and tension in my neck. If I were to cough or chew something at that time, it would feel like my brain was rattling around on my right side.
Very quickly, the pain escalates, turning into a gripping, itching agony inside my eye socket and around my temple.
The hair follicles on that side of my head feel like they have each been replaced with a needle, slowly being forced into my scalp with even the slightest of movement of my long hair.
My teeth feel as if they are all abcessed, infected, or in the process of root canals at that very instant. If I allow the top teeth to touch the bottom- even slightly- a bonus surge of pain is sent through my jaw and into my skull.
The pain is constant, and my nose and eye both run incessantly. I arrange my knuckles around my eye- jabbing my thumb into my temple, and finding pressure points along my nose, forehead, and cheekbone. If I'm lucky, I can get relief for a split second- but inevitably, my eye moves or I take a breath- and that small involuntarily movement causes that scrap of comfort to instantly tumble into excrutiating agony once again.
I sit on my knees, crouched over the floor, rocking back and forth. In the heat of the headache, I resort to burying my head in my hands, attempting to slide the skin of my face up and down in search of physical distraction from the pain.
That all-encompassing agony can last for 15 minutes or 2 hours- and when that stage is over, it's on to the next level.
Even as that "main pain" subsides, for a period afterwards, the headache still taunts me. Sharp, stabbing pains invade the top of my head in random, intermittent increments. Although at this point my attack seems to be over, those jabs can cause me to jerk back as if electrocuted, startled from the sudden, knife-like intrusion. That final stage sometimes lasts minutes, sometimes for frustrating hours.
Once that stage is over, I bide my time until the next attack, counting hours and minutes, afraid to sleep, worrying, waiting.
I try so desperately not to THINK about that which governs my mind, my body, and my life. Yet, the very nature of this totalitarian beast demands constant attention, the occupation of our spirits, the submission of our bodies. How can I remove this contamination from my thoughts?
Robin
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scarmig
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Re: Please describe what YOUR cluster pain...
« Reply #37 on: Jul 22nd, 2005, 3:57pm » |
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Prior to this cluster my headaches are like so:
Slow buildup behind right eye. Like someone gently rubbing a bruise. That grows into a stronger pulsing of pressure that has an epicenter of piercing pain into the back of my eye.
When it peaks, it feels much like I would imagine a rusty, warped ice-pick stuck into my eye and twisted around might feel. Everything is concentrated into that pin-prick epicenter.
This new cluster has the epicenter moved to behind the cheekbone, and includes painful sinus pressure.
Normally I run hot shower over my head to blur out the pain until it passes. It's almost like sensory overload. Hot water and noise right on the point of the pain acts as a kind of static and makes it easier to cope with. But my worst HA collapsed that house of cards and my wife found me curled fetal in a corner of our closet screaming into a towel. The beast was so all-consuming of my consciousness that I didn't know she was there and holding me until it broke.
My scale of pain runs like this.
1. shadow, fading in and out.
2. shadow solid and consistent.
3. Pain, start watching it to see if it increases.
4. More pain, causes interruptions and loss of concentration.
5. Cannot work or safely drive as the pain is unignorable during complicated tasks.
6. Start looking for second line of defense and abortives.
7. Hit the shower and begin blurring the pain. The moaning and crying starts here.
8. Groans and screams, violence. Flashes of irrationality and rage, begging, pleading, cursing.
9. The suicide thought leaps into my head. Not so irrational to actually try it.
10. Loss of conscious awareness due to all-consuming pain. This would be the point where if I were anything more than a blubbering blob of protoplasm, suicide would appear to be a fine and rational idea to be carried out forthwith. Were I single without kids I probably would have done this already. But my wife and daughters are worth the torture.
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skyote
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Re: Please describe what YOUR cluster pain...
« Reply #38 on: Jul 22nd, 2005, 11:59pm » |
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I am 48 and have had the clusters for about 25 years.
My latest round of headaches start about an hour after I fall asleep at night. I awaken to a pulsing on my left side, just in front of and above my ear. Unless I get a quick Trex injection, the pulsing will strengthen to a Kip 8-9 within 10 minutes. Then the pulsing (about every 3-4 seconds) will continue for at least 2 hours and slooowwwly wind down for another hour. The following day, I feel like someone beat the crap out of the inside of my noggin' with a baseball bat. These headaches last much longer than they were when I was younger, and are more severe, but now I only get the episodes every couple of years and they last about 4-6 weeks.
Randy
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yikes-another-one
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Re: Please describe what YOUR cluster pain...
« Reply #39 on: Jul 23rd, 2005, 1:18pm » |
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Heat, like a red-hot fire-iron...
fast like a railroad spike being driven into the eyesocket.
Tense like a vice grip ratcheted to max
grabbing bloodvessels and tissue and squeezing them
tightter than a luvhug from a boa-constrictor....
all that for 25minutes to 2 hours.
soemtimes with only a ten minute respite before it hits again. other times a good 5 or 6 hour break to regroup and recoup.
It ain't fun, it ain't pretty, and it ain't acting.
It's not scheduled to avoid parties or hard work,
and will hunt me down if i try to outrun it...
What with a stuffy nose that suddenly runs,
and with glaring lights making the eyes runny and sensitive, with the eyelid swollen shut and the pupil dialted, with the head leaning on the affected side,
with arm strung up and around, like a sling,
trying to ease the pain by pushing harder somewhere else,shuffling like an 80 year old with osteo....
yep, quite an exquisite form of torture.
and my mom says, "just go lie down, honey..."
"if it hurts as bad as you claim you might pass out and so you should keep off your feet...."
The pain is more than just physical,
considering how much of our lives it affects.
Cancelled work projects, cleaning shores postponed,
hugs and kindness replaces by grimaces and gripes taht we just cannot hold inside, it's a wonder we arent' all hermits by nature and insomniacs by profession.
God bless every single one of us.
We need all the blessings we can get.
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LadyElaine
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Re: Please describe what YOUR cluster pain...
« Reply #40 on: Jul 28th, 2005, 4:13pm » |
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I wake up screaming the pain is in my eye, my ear, side of nose in my jaw. The whole side of my face hurts so damn bad I could claw it off trying to kill the pain. Some times I feel like if I could just reach inside my skin and rub it I could rub it out. My teeth hurt and I don't even have any. My eye feels like its being burned ever got a hot ash in your eye?One side the left side of My nose is usually stopped up but because I cry it usually runs off. Water runs from my left eye weather I cry or not.
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kimmeesue
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Re: Please describe what YOUR cluster pain...
« Reply #41 on: Jul 28th, 2005, 4:49pm » |
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Have been chronic for almost three years. Shadows almost constantly. I have just recently noticed that my neck starts to get uncomfortable prior to a bad hit. My husband says I start pivoting my head like I'm trying to work out a kink. Then the pressure builds. Always right sided almost exclusively behind the eye with runny nose and watery eye. I also get "belchy" for which there is no explanation that I have found. I have always thought of a hit as a bear trap slowly sinking into my eye (shadows) and then it snaps shut (kip 10). A bad hit usually last 3-4 hours and I have recently been having about three a week. The upside is that having discovered melatonin I have had only one middle of the night hit in 7 months. I HIGHLY recommend melatonin!
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brainfreeze
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Re: Please describe what YOUR cluster pain...
« Reply #42 on: Jul 29th, 2005, 4:27pm » |
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The onset is a sensation in the bridge of my nose and inside corner of my right eye. I can sense my breathing going in and out. I know if my hand reaches there, a CH is beginning. It continues to tighten in this area, breath by breath until I start feeling hot. The heat travels up my back, neck, and to the forehead causing the eye to tear as if the heat were trying to escape. The pain worsens as this area tightens (like eating ice cream too fast). I cancel any normal activities as I have a ritual to prepare for which involves a cold washcloth, a fan, cool clothes(shorts/tshirt), isolation, and the floor. I sit, rock, holding the washcloth on my eye, forehead, neck as I thrash about, sitting, walking, screaming, crying... with great intensity for about 45 mins. then I'll stop for a moment and come to my senses to see if it is easing up, only to find that my brief check has caused the pain to increase more. I thrash about more with great vengence and then ever so slightly, the tightening releases, bit by bit. Then my eye quits tearing, and my nose quits being stuffy and my cheek, jaw, and forehead just start feeling bruised until that's all gone. All that is left are sore muscles from head to toe until the next one.
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Jonny
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Re: Please describe what YOUR cluster pain...
« Reply #43 on: Jul 29th, 2005, 6:18pm » |
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on Jul 12th, 2005, 11:56pm, Marc wrote:| after the pain just sort of drains away. |
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YES!, the drain....I knew it even more when I had no meds.......BINGO!...marc 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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rextangle
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Re: Please describe what YOUR cluster pain...
« Reply #44 on: Jul 30th, 2005, 3:28pm » |
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I've been chronic for 3 years now.
It feels as if I eat ice cream way too fast, then multiply that by 1000. Then it feels like someone shoves a broomstick through my eyeballs.. sinus on the CH (right) get clogged up.
My teeth hurt, my temple, the side of my skull, my neck, and even my hair on the right side. Eyeball gets swollen and red and teary as if Tyson just punched me. I think that does it....
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| « Last Edit: Jul 30th, 2005, 3:28pm by rextangle » |
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Erin
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Re: Please describe what YOUR cluster pain...
« Reply #45 on: Aug 1st, 2005, 4:40am » |
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I had my first attack at the age of 20, during a college class. I thought it was a bad toothache (little did I know what was in store for me). In the beginning, many years pre-diagnosis, I took Goody/BC powders and applied hot compresses, and just rode them out... needless to say, this was not especially effective against CH, and with subsequent attacks the pain grew steadily more intense and I began to seek pain relief of any and every possible kind. My attacks have always begun with a sensation of "pressure" in the left temple - always the left - not pain at all, just a "funny" feeling, but I learned very quickly that this pressure was an extremely reliable herald of an impending attack. It remains so to this day. Within 5 to 10 minutes I have ice-pick stabbing pains in the temple; deep intense pain radiating to the forehead just above my left eyebrow; throbbing pain in the cheek, left side of bridge of nose, roof of mouth, teeth on left side; a stiff painful spot on the left side of the back of my neck that intensifies the pain if I rub it; extreme light sensitivity; nausea, vomiting; sweating, and feeling at the same time "overheated" and shivering/teeth chattering; extreme anxiety; inability to be still; nasal congestion on the affected side at first, followed by dripping; watering of the left eye; at level 10 the pain also appears in the top of my head, as if a red-hot poker was being shoved through the roof of my mouth and out the top of my skull. My attacks almost always come in the early morning, just shortly before I would have woken up normally, and when they wake me up they're typically at a level 2 or 3 and progress rapidly from there. Sometimes I can head off an attack with aspirins, a cup of strong coffee and a cigarette, if I catch it at that early stage. But most times nothing works, and the pain intensifies to a 7, 8, 9, or 10 within 10 to 15 minutes no matter what I do.
I have been episodic from the start: 1 to 5 or 6 attacks a day, the cycles lasting for about 3 months, then remission for a period of 1 to 2 years before the next cycle. In 1993, after 18 years of suffering and many thoughts of suicide, I was (finally!) diagnosed properly and given propranalol at the beginning of a cycle, which stopped it completely after only 1 or 2 attacks of a much milder sort, and after that I never had another CH. Until a month and a half ago. I had found this website way back then, but never knew - until the HA's came back out of the blue shortly after I moved to the Netherlands 2 months ago - that CH could return after a total remission of 13 years. Now I've read on the forums that some people go 13, 18, 20+ years without an attack and then have the demon returnm worse than before. This has led to a recurrence of depression, high anxiety, and that sense of "hopelessness" with which many here are no doubt familiar. Having control over my life is one means of keeping the depression and anxiety at bay, but as we all know, the demon only laughs at our pathetic attempts to control it.
I have some thoughts regarding the "circadian rhythm" - or "sleep-wake cycle" - aspect of CH, with regard to my own particular timing for attacks... they don't follow that "wee hours of the morning" (or the "shortly after falling asleep" schedule that most sufferers seem to have. I have always been a "night person" - in that my *natural* sleep-wake pattern has always been opposite of the "norm" - and for many years I worked night shift because it simply worked better for me. So I wonder whether that difference in my natural rhythms is what causes my attacks to occur at the time they usually occur (just before my normal waking time now that I'm not working, but sleeping at night - so that I can sleep with my partner, and being up during the day). I have my attacks almost consistently between 7 and 10 AM and they begin either just before I wake up (and that is what wakes me) or almost immediately on waking. Is this the case for anyone else here, or am I the weird one? 
P.S. After about 6 weeks, I'm allowing myself to hope that I'll soon be out of cycle; I'm having attacks only once every 3 days, and it has now been 4 days since my last one. The ones I was having were the worst I have ever had, but I think (and pray!) it might be over... this time. I'm not able to believe now that they're gone for good, but just "gone for now" is enough. For now. 
Wishing all a day without pain, and a future with a cure.
Erin
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