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Title: Please describe what YOUR cluster pain... Post by GlendaB on Jul 11th, 2005, 10:37pm feels like and what parts of your head are affected. Is it the same every cycle or does it change from hit to hit or from cycle to cycle. Please include pre- and post head pain in your description. |
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Title: Re: Please describe what YOUR cluster pain... Post by E-Double on Jul 11th, 2005, 10:54pm Pre: http://ed3.photosite.com/~photos/tn/208_348.ts1103681237406.jpg Duringhttp://ed3.photosite.com/~photos/tn/252_104.ts1105160171312.jpg http://ed3.photosite.com/~photos/tn/249_104.ts1105160160937.jpg http://ed3.photosite.com/~photos/tn/250_104.ts1106446531140.jpg http://ed3.photosite.com/~photos/tn/177_348.ts1100726423656.jpg after:http://ed3.photosite.com/~photos/tn/38_348.ts1071418926515.jpghttp://ed3.photosite.com/~photos/tn/89_348.ts1091894178734.jpg after 9 yrs of short cycles 2x a yr no longer than 4-6weeks.......this cycle has now gone straight 18+ months. Was always rightsided.....renegade lefties. Get flogged without pattern. no longer a rhyme or a reason...can not set my clock by them the way I used to......Things change. Enjoy the ride |
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Title: Re: Please describe what YOUR cluster pain... Post by StressFree on Jul 12th, 2005, 1:02am I had been chronic with KIP 7 to 8 daily at same time every morning around 9 or 10am. Tearing eye always present. 45 minutes long every time. No flopping on ground yet. Mostly burning in temple and eye and later jaw. All through age 15 to 21 years old, then went episodic with Verapamil and Caffergot from a headache specialist breaking chronic cycle. Apx every two years after that with much worse attacks, which became multiple attacks daily and at night during several of the cycles. Cycles ran 5 to 6 weeks and had a peaking effect with worst headaches in the last few weeks, where no meds or abortives would help. Imitrex shots and pills (and oxygen) seemed to cause attacks to climb to 6 or 7 daily attacks (incl. night) often with constant 4 to 5 KIP pain inbetween attacks. Then they would finally stop altogether. Had KIP 9 to 10 pain for up to 4 hours prior to end of cycle on a few of them. KIP 10 symptom for me is severe pain burning in eye, temple, jaw, back of head and in neck by spine all on the effected side. Pain kind of shifts around between all areas during attack. Had 6 years of no cluster cycles. Only shadows of maybe 3 or 4, tightness in jaw and temple area in spring or fall. Used Meprobamate (mild anti-anxiety agent) daily for a couple of weeks every couple of years. May have helped to keep cycles from breaking through. Didn't try it this year, but I'm wishing I had. Sorry to be so long, but it is interesting to see how these things effect us all differently. Wishing all PFDAN! |
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Title: Re: Please describe what YOUR cluster pain... Post by StressFree on Jul 12th, 2005, 1:05am By the way - Great pictures Eric! The drawing is something. Take care, Rich |
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Title: Re: Please describe what YOUR cluster pain... Post by jcmquix on Jul 12th, 2005, 7:52am I have had mine as long as I can remember. Always get them 2 times a yr, December to Febuary & June to August. They start with 1 a night for a few weeks, then I go to 2,3 or 4 a day for about 1 month, then they ramp back down, then go away. When I am at 1 or 2 HA's a day they are usually only about 6 to 8 on the Kip scale, but when the ferquency increases so does the pain. When I am getting 4 a day, they all go off the Kip scale, I thank God for the TREX inj. The have hit on both sides but never during the same cycle, but mine mostly stay on the left. When they Start while I am awake, I get a small twich in my stomach & like a small heat spot around my eye, my face will flush, then its like WHAM, its here.. it Feels like someone is running power tools up there trying to make hole somewhere to let the Sunshine in or Like someone kicking from the inside out... Something/Someone wants out BAD... I usually get most of my 2-3 HA's a night, when I am sleeping I have no Warning, I just wake up like someone is Kicking me in the Head.... Wet with Sweat, Really Hott, Eye watering, Nose Running, and usually have the Shakes from PAIN.. I had a period for 2-3 yrs with no CH at all, then just this last June 1, (The exact date) I got hit hard that night by 2 HA's, then its just been the cycle. I am still gettin 2-3 a night, 11pm, 1am & 3am.. ??? Hope this helps... PFDAN's to ALL !!! PS: Plus we are in Hurricane Season here in Florida, so basically the weather is changing every 5 minutes.. ???? |
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Title: Re: Please describe what YOUR cluster pain... Post by burnt-toast on Jul 12th, 2005, 9:21am on 07/11/05 at 22:37:49, GlendaB wrote:
Feels like? - Maybe like someone hit me in the right side of my face/head with a sledge hammer or maybe a car and is poking a stick into the open wounds? Honestly I don't really know how to describe it or what to compare it to. Pain starts in right nostril or behind right eye radiates up over forehead and scalp then down across temple and ear then into upper jaw/teeth. If I can somehow stop it before it involves that entire upper quandrant of my head/face I consider it a blessing. Although chronic, the frequency/intencity are always changing - I'm currently in my best time of year where intensity and frequency drop in Aug. and Sep. It will pick back up through Oct. and July - but I still get bad attacks during this (good) period and simularly get periods of less severe attacks during my bad period. Modified to add - Duration of attacks can range from 20 Min. on up to 3 or 4 hours. Durations of 1 to 2 hours are common. Aug. - Sep. typically shortest durations Feb. - May typically longest durations. Again this nightmare likes to mix things up during these months as well. Pre-pain is virtually non-existant they come on without warning. Post-pain is a hyper-senstativity in the affected regions of my head/face where touch is uncomfortable until about noon. My right eye has a tendency to feel like I have a cramp that makes looking around uncomfortable. Hope I've answered all of your questions. Tom |
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Title: Re: Please describe what YOUR cluster pain... Post by Bob P on Jul 12th, 2005, 9:37am In years past the pain is centered in the temple, jaw and forehead area. Teary eye and runny nose. This cycle started with what felt like sinus headaches. In the eye area and side of nose. Developed into nose, eye temple, jaw and upper teeth. Not as much tearing and runny nose this time but I have stopped most of them in 10-15 minutes with O2. The first ten I had this cluster broke me out in a full body sweat. Wasn't sure if my heart was gonna hold up under the strain of the pain. The pain is exquisite!!!! |
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Title: Re: Please describe what YOUR cluster pain... Post by burnt-toast on Jul 12th, 2005, 9:52am on 07/12/05 at 09:37:39, Bob P wrote:
Well put! Tom |
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Title: Re: Please describe what YOUR cluster pain... Post by nani on Jul 12th, 2005, 10:04am When I get hit, it's like someone shoves a sword through the roof of my mouth, up through my sinus' and out my eye and temple. It comes on fast and is a sharp pain. Lasts anywhere from 20 minutes to an hour. Shadows feel almost the same, except it feels more like a baseball being shoved in very slowly, comes on slower and lasts for hours. "Exquisite pain"....I was thinking about those words last night during a hit. (low level hit, thank God) and thinking how for me, making it worse by putting pressure on my eye and temple actually feels good (it doesn't help, mind you, it just feels good to make the pain worse). I wonder WTF that's about? [smiley=huh.gif] |
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Title: Re: Please describe what YOUR cluster pain... Post by pattik on Jul 12th, 2005, 10:19am on 07/12/05 at 09:37:39, Bob P wrote:
..a perfect description. And when it is a particulary severe hit, that exquisite pain is totally consuming of my attention...just me and the beast. |
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Title: Re: Please describe what YOUR cluster pain... Post by GlendaB on Jul 12th, 2005, 10:19am I''ve been having clusters since i was around 16 years old. For years it seems the pain stayed the same in the same areas. For years the pain started in my neck and then to my eye on the affected side and temple, jaw, and ear. Sharp, lighting like stabs with an intense burning that is unbearable. I truly believe I could handle the stabbing pain more easily without the burning with it, but together they are totally incapacitating. I have day and night attacks. Some of my past cycles I've had attacks only at night or only during the day, and some with both day and night hits. Both are bad but the night attacks to me are the scariest because of being woken from a dead sleep with the worse pain known to me. One of the things I have noticed is if I get the least bit hot it is on. I try to sleep with the A/C turned down to were it is a little chilly an/or sleep with a fan blowing directly on me. Sometimes I can't stand to even feel the fan blowing on my face when I'm getting hit. Sometimes during an attack I can push on the side of my head where the pain is and it seems to dull the pain in some way and sometimes I can't stand to even touch my face or the pressure makes the pain worse. With some cycles I have this bruised feeling about my skin on my face and head on the affected side. It feels like I've been beaten about my face and head. Even the hair on my head hurts. I've noticed this cycle that I'm actually swollen under my eyes slightly and so dark under my eyes, it looks like someone has beat me and given me black eyes and the blackness is begining to fade away. Has anyone had the feeling of intense burning with a pulling sensation (sort of like a spasm) in the front of their neck like it goes straight through to your throat? I thought this would be interesting to know how, if any, differences we have in pain. Or if one of us have picked up on a trigger that the other hasn't really picked up on with ourselves. Thanks very much for your input it means a lot to me. GiGi |
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Title: Re: Please describe what YOUR cluster pain... Post by Kim Y. on Jul 12th, 2005, 11:52am My name is Kim/28yof/CH for 1yr with 2 cycles w a 3 mo. break/ 1 cycle 4mo. ,2 cycle 8mo & counting. In the begining I felt the pain dull pains feeling a lot of pressure every time I would take a bite of food. First couple of weeks it was a good diet plan and then after that it packed its wallops... Sharp shadows is how it starts. I feel tremendous pressure around my eye like it is going to pop out. The as the day progresses it moves to the my temple and the further back on my head. I will be walking along and just freeze. I have to stop and breath some one has just wailed on my head with a bat but the pressure and pain remain. Then more shadows and am able to move on. Then a little while later it happens again. The eyes starts to water and the nose to run. I stop again and breath this time it last longer. Then later I can't breath it off this time its like a sharp jab repeated over and over. I bend over cry hide so I can deal with it alone. I come out apologizing and get lucky enough to get it again. It is like it lets up for just a few seconds and then I feel relief and then it hits again. All the while I continue to apologize because the people at work have to witness it. Crying grabing my head. Imitrex works and sometimes not. Usually am always at work and not able to try the O2 to abort. Head pain always remains after the attack. Don't touch that area. Can't sleep on that side. I am in my 8th month of this ordeal and I don't ever know when the next hit will come. Shadows up to kip 6/7 for the last two months. Last night my shadow went to kip 7 & 8. (Not complaining about the shadows but I just wish it would just go away.) Quote:
Ok babbled long enough...Good thread....Kim |
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Title: Re: Please describe what YOUR cluster pain... Post by rbmb on Jul 12th, 2005, 12:08pm It starts out like the dull pain of a toothache except the pain is behind my left eye instead of in a tooth. It progresses into a sharper, more focused pain with a burning quality that steadily increases. Pretty soon it is accompanied by an intermitent shooting pain that also increases rapidly. This pain will rachet up and then seem to rachet back down a little, making me think the headache is going away only to come back stronger. At this point I'm pacing around the room muttering to myself, holding a hot washrag to my eye, watching the clock trying to estimate how long it will take for the DHE shot I took to kick in. After 15 or 20 minutes, the shot kicks in, the pains slowly subsides and I can live like a normal human again. Rich |
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Title: Re: Please describe what YOUR cluster pain... Post by Sandy_C on Jul 12th, 2005, 12:11pm I guess I'm an oddball ;;D (naturally). My first ever cycle began in July of 1999 when I was 53 years old. The pain began in my right eye socket and then radiated out from there to my temple and the top of my head. Thought I had brain tumor and was going to die. Then I noticed that I only had this pain at 8:30 in the evening, and it went away after about 45 minutes to an hour. That's when I started surfing the web and found this site. When cycle ended about 2 months later, was PF for two years until until 2001 got hit again in October. Finally got diagnosed correctly. Third cycle in 2003 - 8 wks, last cycle this February, again 8 wks. Seasons have nothing to do with my cycles apparently. All cycles except this last one hits are in the evening - no daytime - no nights. This one has been different from the start. Now, the HA still starts in my eye socket, but pain spreads much farther around my head - always right side only when in cycle, but have had "hits" on the left now and then when out of cycle. Pain goes into ear, jaw, teeth and roof of mouth (which I absolutely cannot stand). I'm not one to use heavy meds if at all possible. I can usually tell if one is going to ramp up to where I need help, then I take a trex by pill. Usually helps really well - sometimes not. When not - I just have to ride it out. Also kudzu, melatonin, vitamin supplements, and ice water by the gallon. During first cycle I had no idea of kip scales, so I couldn't tell you. Typical 3-5 hits per day, a few times at night. Most day hits range from 5-8 scale, and nights only enough to wake me up. So far, I can't honestly say I've ever had a 10, but I sure have had a cou;e of 9's here and there. |
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Title: Re: Please describe what YOUR cluster pain... Post by StressFree on Jul 12th, 2005, 1:02pm I'm sure many have heard of Trigeminal Neuralgia. I think it may occur in conjunction with cluster attacks. It is described as "lightening stabs" of pain. Often set off by the slightest touch. May begin after age 50. There is a website specific to this condition. Like cluster attacks it is described as "the worst pain imaginable" and can lead to suicide. Here is link if anyone is interested. This is their description page, but the "home" button at bottom left goes to the front. Nice picture of the trigeminal nerve. I wish they had the nerve pictures from the back of neck, up the head, and around the eye and temple... http://www.tna-support.org/newlook/definition.htm |
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Title: Re: Please describe what YOUR cluster pain... Post by vig on Jul 12th, 2005, 4:03pm like being tased in the eye.... every 5 seconds... for an hour.... repeat every two hours.... ouch |
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Title: Re: Please describe what YOUR cluster pain... Post by cazman on Jul 12th, 2005, 4:07pm simple a frozen milk shake real fast take the brain freeze you get from it times it by 100 and it can last for hours on end for months or years at a time . hows that for a light example |
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Title: Re: Please describe what YOUR cluster pain... Post by maffumatt on Jul 12th, 2005, 4:28pm To start with all the upper teeth on my right side go numb (time to hit the O2 or trex, thats my sign) within 5 min the eye starts to feel like it is being pushed out from the inside out. This is when the teeth start to scream, it feels like my ear is being poked by an icepick. At this point it feels like another icepick is being pushed through my temple. It stays the same most cycles, but this year it has been a wierd cycle. They used to go away after 2 months, this time I have had them since mid Feb. After April I thought they were gone but I have been getting a couple a day with a few breaks, the longest being a month since then. They have always been on the same side. If I don't use any meds, after a hit it feels like I am kinda high, its like my head saying I am sorry. Matthew |
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Title: Re: Please describe what YOUR cluster pain... Post by wip5150 on Jul 12th, 2005, 10:19pm To paraphrase Clubber Lang (played by Mr. T 8)) in Rocky 3: Prediction for your headache? Pain. Mine starts out on the top of my head, above my right eye. The shadow then slithers down behind my eye and within 5 minutes or so, the real pain hits. When I'm at a Kip 7 +, it feels like somone is taking a hot poker and scraping my brain - sort of picking at it with no rhythm - for hours. As with many of you, I can't even think about sitting still and walk around like Lazurus. After a particularly bad HA, the after effects linger for hours making me feel I went a couple of rounds with Mr. Balboa himself. The worst is when my hair hurts - hard to explain to people not familiar with CH, but it hurts so fucking bad my HAIR hurts. Rock on! |
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Title: Re: Please describe what YOUR cluster pain... Post by Marc on Jul 12th, 2005, 11:56pm Quote:
Oh man, do I miss that feeling......... after the pain just sort of drains away. |
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Title: Re: Please describe what YOUR cluster pain... Post by BarbaraD on Jul 13th, 2005, 11:17am on 07/12/05 at 09:37:39, Bob P wrote:
Well put Bob And it's totally consumming - BD |
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Title: Re: Please describe what YOUR cluster pain... Post by seasonalboomer on Jul 13th, 2005, 11:34am on 07/12/05 at 09:37:39, Bob P wrote:
Not to be used in the "Cluster Manual". Just how would that look? "The cluster headache pain is simply exquisite, and possibly the most exquisite of all types of pain. Many sufferers claim that the pain is probably more exquisite than having one's scrotum caught in a cracked toilet seat." What a great word to describe it though. I'm applauding and saying "here, here", simply exquisite use of the language Bob P!!! [smiley=laugh.gif] |
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Title: Re: Please describe what YOUR cluster pain... Post by Kris_in_SJ on Jul 13th, 2005, 8:29pm I'm episodic - 10-12 week cycles every few years. Each and every attack begins the same way ... a burning pain in my left sinus, that within a minute spreads to my eye and temple. At the peak of cycle, I also get radiation to my ear and the teeth on that side. The attacks are always the same, but at the beginning of cycle I might have one every other day, escalating to 1 every night at the same time, escalating to 2 per day. At that point, I'm having nearly constant low grade shadow pain in the temple, but I've started high-dose Verapamil. The actual HA attacks decrease like they started, though the shadows hang around for a while. I'm a Trex inject girl, so the minute I know my cycle is starting, I grab the needle. Because of that, I rarely suffer for longer than 5-10 minutes the the actual attack. I only ride them out near the end of cycle, when the side effects of the Trex become worse than the actual HA. Hope this helps. Kris |
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Title: Re: Please describe what YOUR cluster pain... Post by burnt-toast on Jul 13th, 2005, 8:41pm on 07/12/05 at 22:19:29, wip5150 wrote:
Now there's a statement I won't argue with. Tom |
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Title: Re: Please describe what YOUR cluster pain... Post by clarence on Jul 14th, 2005, 7:49am http://www.translucentbeauty.com/community/images/FrankEyeGlow2.jpg Me looking in the mirror. Casey |
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Title: Re: Please describe what YOUR cluster pain... Post by bnfreeman on Jul 14th, 2005, 9:49am 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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Title: Re: Please describe what YOUR cluster pain... Post by hurtinunit on Jul 14th, 2005, 5:40pm 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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Title: Re: Please describe what YOUR cluster pain... Post by unsolved1 on Jul 14th, 2005, 11:26pm on 07/14/05 at 17:40:59, hurtinunit wrote:
That's a good description (of a mild one .. lol) J/K ... it is a good description Unsolved |
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Title: Re: Please describe what YOUR cluster pain... Post by Linda416 on Jul 15th, 2005, 12:23am 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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Title: Re: Please describe what YOUR cluster pain... Post by thomas on Jul 15th, 2005, 9:58am 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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Title: Re: Please describe what YOUR cluster pain... Post by Kiwiinoz58 on Jul 15th, 2005, 8:08pm 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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Title: Re: Please describe what YOUR cluster pain... Post by Cooked Brain on Jul 15th, 2005, 8:32pm Left eye and upper jaw, pounding, drilling, exhausting |
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Title: Re: Please describe what YOUR cluster pain... Post by rumplestiltskin on Jul 18th, 2005, 12:57am http://www.clusterheadaches.com/wwwboard/messages/37579.html love den |
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Title: Re: Please describe what YOUR cluster pain... Post by amen on Jul 21st, 2005, 2:55pm 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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Title: Re: Please describe what YOUR cluster pain... Post by Juce on Jul 21st, 2005, 4:44pm 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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Title: Re: Please describe what YOUR cluster pain... Post by Lissa on Jul 21st, 2005, 5:07pm on 07/12/05 at 10:19:29, GlendaB wrote:
Me too. :( |
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Title: Re: Please describe what YOUR cluster pain... Post by RobinHarber on Jul 22nd, 2005, 2:12am 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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Title: Re: Please describe what YOUR cluster pain... Post by scarmig on Jul 22nd, 2005, 3:57pm 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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Title: Re: Please describe what YOUR cluster pain... Post by skyote on Jul 22nd, 2005, 11:59pm 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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Title: Re: Please describe what YOUR cluster pain... Post by yikes-another-one on Jul 23rd, 2005, 1:18pm >:( 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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Title: Re: Please describe what YOUR cluster pain... Post by LadyElaine on Jul 28th, 2005, 4:13pm 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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Title: Re: Please describe what YOUR cluster pain... Post by kimmeesue on Jul 28th, 2005, 4:49pm 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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Title: Re: Please describe what YOUR cluster pain... Post by brainfreeze on Jul 29th, 2005, 4:27pm 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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Title: Re: Please describe what YOUR cluster pain... Post by Jonny on Jul 29th, 2005, 6:18pm on 07/12/05 at 23:56:12, Marc wrote:
YES!, the drain....I knew it even more when I had no meds.......BINGO!...marc ;) |
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Title: Re: Please describe what YOUR cluster pain... Post by rextangle on Jul 30th, 2005, 3:28pm 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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Title: Re: Please describe what YOUR cluster pain... Post by Erin on Aug 1st, 2005, 4:40am 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 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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