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Topic: Please describe what YOUR cluster pain... (Read 1191 times) |
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GlendaB
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Please describe what YOUR cluster pain...
« on: Jul 11th, 2005, 10:37pm » |
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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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Pain-free days and nights to all!
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E-Double
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Re: Please describe what YOUR cluster pain...
« Reply #1 on: Jul 11th, 2005, 10:54pm » |
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Pre:
During
after: 
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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| « Last Edit: Jul 11th, 2005, 10:59pm by E-Double » |
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StressFree
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Re: Please describe what YOUR cluster pain...
« Reply #2 on: Jul 12th, 2005, 1:02am » |
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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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StressFree
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Re: Please describe what YOUR cluster pain...
« Reply #3 on: Jul 12th, 2005, 1:05am » |
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By the way - Great pictures Eric! The drawing is something. Take care, Rich
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jcmquix
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Re: Please describe what YOUR cluster pain...
« Reply #4 on: Jul 12th, 2005, 7:52am » |
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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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burnt-toast
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Re: Please describe what YOUR cluster pain...
« Reply #5 on: Jul 12th, 2005, 9:21am » |
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on Jul 11th, 2005, 10:37pm, GlendaB wrote: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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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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| « Last Edit: Jul 12th, 2005, 10:17am by burnt-toast » |
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Bob P
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Re: Please describe what YOUR cluster pain...
« Reply #6 on: Jul 12th, 2005, 9:37am » |
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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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burnt-toast
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Re: Please describe what YOUR cluster pain...
« Reply #7 on: Jul 12th, 2005, 9:52am » |
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on Jul 12th, 2005, 9:37am, Bob P wrote:
The pain is exquisite!!!! |
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Well put!
Tom
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nani
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Re: Please describe what YOUR cluster pain...
« Reply #8 on: Jul 12th, 2005, 10:04am » |
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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? 
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pattik
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Re: Please describe what YOUR cluster pain...
« Reply #9 on: Jul 12th, 2005, 10:19am » |
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on Jul 12th, 2005, 9:37am, Bob P wrote:
The pain is exquisite!!!! |
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..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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GlendaB
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Re: Please describe what YOUR cluster pain...
« Reply #10 on: Jul 12th, 2005, 10:19am » |
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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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| « Last Edit: Jul 12th, 2005, 10:26am by GlendaB » |
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KMT
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Re: Please describe what YOUR cluster pain...
« Reply #11 on: Jul 12th, 2005, 11:52am » |
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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:| 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? |
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I do feel this I am always grabbing my neck and rubbing it in hopes that it would help with the pain. They talk about a lump and it really is there at the side of the neck that you get your cluster. Don't quite feel it through my throat but do feel the burning and pulling frome there.
Ok babbled long enough...Good thread....Kim
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rbmb
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Re: Please describe what YOUR cluster pain...
« Reply #12 on: Jul 12th, 2005, 12:08pm » |
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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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Sandy_C
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Re: Please describe what YOUR cluster pain...
« Reply #13 on: Jul 12th, 2005, 12:11pm » |
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I guess I'm an oddball  (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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StressFree
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Re: Please describe what YOUR cluster pain...
« Reply #14 on: Jul 12th, 2005, 1:02pm » |
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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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vig
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Re: Please describe what YOUR cluster pain...
« Reply #15 on: Jul 12th, 2005, 4:03pm » |
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like being tased in the eye....
every 5 seconds...
for an hour....
repeat every two hours....
ouch
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cazman
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Re: Please describe what YOUR cluster pain...
« Reply #16 on: Jul 12th, 2005, 4:07pm » |
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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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maffumatt
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Re: Please describe what YOUR cluster pain...
« Reply #17 on: Jul 12th, 2005, 4:28pm » |
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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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wip5150
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Re: Please describe what YOUR cluster pain...
« Reply #18 on: Jul 12th, 2005, 10:19pm » |
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To paraphrase Clubber Lang (played by Mr. T  ) 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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Marc
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Re: Please describe what YOUR cluster pain...
« Reply #19 on: Jul 12th, 2005, 11:56pm » |
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Quote:| If I don't use any meds, after a hit it feels like I am kinda high |
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Oh man, do I miss that feeling......... after the pain just sort of drains away.
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BarbaraD
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Re: Please describe what YOUR cluster pain...
« Reply #20 on: Jul 13th, 2005, 11:17am » |
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on Jul 12th, 2005, 9:37am, Bob P wrote:
The pain is exquisite!!!! |
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Well put Bob
And it's totally consumming -
BD
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seasonalboomer
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Re: Please describe what YOUR cluster pain...
« Reply #21 on: Jul 13th, 2005, 11:34am » |
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on Jul 12th, 2005, 9:37am, Bob P wrote:
The pain is exquisite!!!! |
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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!!!
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Kris_in_SJ
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Re: Please describe what YOUR cluster pain...
« Reply #22 on: Jul 13th, 2005, 8:29pm » |
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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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Re: Please describe what YOUR cluster pain...
« Reply #23 on: Jul 13th, 2005, 8:41pm » |
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on Jul 12th, 2005, 10:19pm, wip5150 wrote: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.
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Now there's a statement I won't argue with.
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clarence
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Re: Please describe what YOUR cluster pain...
« Reply #24 on: Jul 14th, 2005, 7:49am » |
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Me looking in the mirror.
Casey
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