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Topic: What *is* this? (Read 517 times) |
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roxyhead
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clusterfuck
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What *is* this?
« on: Jan 18th, 2005, 8:54pm » |
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Do other head/facial pain disorders come in clusters? My pain tends to follow the schedule of cluster headaches, but not always the nature of the pain.
The first set was fall 2002 - a month on, three weeks off, on again for a while and was able to make it mostly stop for another few weeks by taking cyclobenzaprine and valium at night, hit an apex early january 2003 and was all but gone by about 3 weeks later. Healing vortexes in Sedona, AZ may or may not have had anything to do with it.
The second set started around the middle of october this year, peaked in 2 days (unresponsive to percocet), got some indomethacin and it went away in about a week, though I seem to be allergic to the indomethacin, and it didn't take away all the pain, still made me feel pretty crappy. Was mostly ok for another month and a half or so on valium and cyclobenzaprine and occasional ibuprofen. Then it hit again and while I'm sure the preventative meds are keeping it from being as bad as it could be, I still haven't had a pain-free day in a good month and a half. Detoxed last week from the OTC painkillers I'd been eating steadily for all that time, so now there are pain free periods in the day, which is nice. Have a neurologist appointment in a couple weeks and some percocet for when I need it, but that's it.
Thing is, it's not typical strictly unilateral near the eye nose running eye watering screaming (I don't live alone and so can't scream other than into a pillow, which I haven't done this episode due to the availability of percocet) textbook cluster headache (though last week, a few hours after taking a Maxalt (which doesn't really work much) to abort what I thought was a migraine coming on one side, I *did* get that nose/eye/behind the eye typical one.
It's like the whack a mole game. I'll get attacks anywhere from my jaw to the side of my face to near my eye to further up above and in front of my ear - treat one pain (usually by trying to squeeze all the blood out of the area, or take some sort of drug), it'll mutate and appear somewhere else. It's mostly left sided, but recently it's moved to mostly right (anything both sides at the same time goes away with an Advil). I have an anti-clenching mouthguard for my jaw, in addition to the muscle relaxants. No aura, several attacks during a day, jaw pain mostly when eating/drinking something hot/cold/crunchy, all pain can start from going from a cold place into a warm one, or for no apparent reason.
Often wakes me up early in the morning needing painkillers to get back to sleep. Often there's photosensitivity, sometimes phonosensitivity, rarely nausea. Sometimes driving on a bumpy road, any jarring movement, any movement of facial muscles on the affected side like blinking can make the attacks worse. Not so much pacing or thrashing, prefer steadily pressing the affected area into a carpeted floor or firm stuffed animal.
I'm female. No family history of cluster headaches or migraines. My mother gets tension headaches and she can't understand how a headache can exist that doesn't just go away with OTC pills.
Any idea what the hell this might be?
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Redd
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Re: What *is* this?
« Reply #1 on: Jan 18th, 2005, 9:14pm » |
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First things first...take the cluster quiz
<<<< over there on the left. I want to let you know first, the welcome sign is that which states the site is exclusively for sufferers and supporters of those who suffer from clusters...
that aside...take the quiz and if you don't have clusters there are places we can help you find to get you the support you need for your particular situation. Don't hesitate to let us help you find the support you need...ok?
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nani
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Re: What *is* this?
« Reply #2 on: Jan 18th, 2005, 9:17pm » |
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Hey rox...welcome. None of us here are doctors so we won't tell you what it is. We can give you some info from our own experience and what we've learned. It's a good thing that you are going to see a Neuro.
I have CH and I also have TMJ. Some of what you are describing reminds me of a particularly bad time when I was having severe CH episode and a very bad bout of TMJ. It was kind of a vicious cycle. I would have severe jaw pain, pop a flexeral and use heat to relax my jaw. The heat would trigger a CH. If I switched to ice for the CH, my jaw would spasm. I didn't have a CH diagnosis at the time, so I would pop a pain pill, and assumed the jaw pain was moving around my face and head. Almost anything, a bumpy road, a hot shower, turning my head a certain way, became a trigger for either one or the other. The trigeminal nerve runs through all the areas you described and there may or may not be a correlation between the disorders. I would advise you to gather as much CH info as you can here and maybe do some TMJ research as well. When you get to the neuro, the two of you can work together to get a correct diagnosis. Pain free wishes, nani
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jillybean
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Re: What *is* this?
« Reply #3 on: Jan 18th, 2005, 10:56pm » |
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Hi,
I also have TMJ and before I read Nani's entry the pain sounded familiar.
My life changed when I learned progessive relaxation for the TMJ.
An oral surgeon diagnosed this. The regular docs didn't know so much about it.
Hope you find relief soon.
Jill
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roxyhead
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Re: What *is* this?
« Reply #4 on: Jan 19th, 2005, 2:54pm » |
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on Jan 18th, 2005, 9:14pm, Redd715 wrote:First things first...take the cluster quiz
that aside...take the quiz and if you don't have clusters there are places we can help you find to get you the support you need for your particular situation. Don't hesitate to let us help you find the support you need...ok? |
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According to the quiz, it seems more likely that I have clusters than regular migraines, except for the some of the "always" questions - it *usually* doesn't shift sides that often (the head pain) and it won't during a single attack, but the jaw pain will sometimes - it normally starts off with jaw pain at the beginning of the cycle progressing to head pain. It's the usual lack of runny eyes/nose and often photo/phonophobia that make it confusing.
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roxyhead
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Re: What *is* this?
« Reply #5 on: Jan 19th, 2005, 3:06pm » |
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Oh, and during a cluster-or-whatever period, drinking alcohol the night before will make things worse the next day, or if I've been mostly headache free for a couple weeks, will bring them back. That's the only definite trigger, besides the season (fall), that I've been able to identify.
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roxyhead
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Re: What *is* this?
« Reply #7 on: Jan 20th, 2005, 1:21am » |
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on Jan 19th, 2005, 4:04pm, taraann wrote:
Sometimes it feels like that, like when I'm already hurting and do something else like try and chew or am in a car and go over a bump or something, but attacks like that when I'm otherwise pain-free are extremely rare. I'd like to try Neurontin anyways, though, it seems like it has the best side effect profile of all the meds to help these sorts of things...
I think we've got it narrowed down to the area that the trigeminal nerve deals with being the problem, though, at least.
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Tara Ann
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Re: What *is* this?
« Reply #8 on: Jan 20th, 2005, 1:35am » |
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You really should make an appt with a nuerologist, esp one that specializes in headaches if you can. Not all conditions (espcially headache conditions, IMO) are "textbook". Not only to get a diagnosis but to rule out anything serious. More than likely it is NOT anything serious, but you should be checked out with tests to rule out anything serious.
Goodluck, and please keep us posted on how you are doing.
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roxyhead
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Re: What *is* this?
« Reply #9 on: Feb 7th, 2005, 4:03pm » |
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Was finally able to see the neurologist today, and I've been pretty much fine for the last two weeks or so...the last round was probably made worse by the sinus infection it turned out I had at the same time. Neuro gets description, history, and what I've taken that hasn't worked, checks reflexes and such, says it doesn't sound like migraines as it happened too often and the Maxalt didn't help, doesn't feel any unusual tension now and I'm not having headaches right now, so figures it's probably some really weird kind of tension headache...didn't mention clusters or anything else. Pretty much a "Well, you're fine right now, the last time you got hit with them it went away around this time of year, so you're probably cured, if it comes back, tell your family doctor when you see him in a month" kind of thing.
So that amounted to pretty much...nothing. They'd better not come back anytime soon. Periods of 2-5 weeks without pain in between periods with headaches during a round of whatever the problem is isn't entirely unheard of for me, so I just get to sit and wait and hope they're gone for a while longer...
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blaughland
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Re: What *is* this?
« Reply #10 on: Feb 7th, 2005, 5:29pm » |
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where is the quiz.?
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jillybean
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Re: What *is* this?
« Reply #11 on: Feb 7th, 2005, 5:36pm » |
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Look to the left in the menu. It is a quiz to help determine if you have cluster headaches.
Jill
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