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Topic: And even then, they cantHas ANYONE heard of this? (Read 548 times) |
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envirodefender
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And even then, they cantHas ANYONE heard of this?
« on: Oct 29th, 2003, 2:17am » |
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Oh lucky me! OK, I have always known that I never fall into a "normal' medical catagory, but THIS is really depressing. I have been a heachache sufferer for.....EVER. But I just finally got a diagnoisis that is less than stellar, even for me. Hold on to your collective hats. OK, here it is: I suffer from cluster headaches that chronic. However, within the chronic cycle, I also get episodic clusters. so, basically, I have a cluster 24/7, but within the chronic cycle, every day at 11am, 2pm and 7pm, it gets worse(as in episodic). On top of that, I also suffer from chronic Migraines. As in daily. As in at the same time as I'm having a cluster cycle.So I want to throw myself in front the largest moving object I can find. I am on Verapamil, Indocin, Midrin,Elavil,Melatonin& oxygen. It kinda helps....sometimes. I should say, it on occasion takes the edge off enough to make me reasonably close to being human. Thats if I can afford to pay for it all for long enough for it to work. The cluster cycles usually last for 4-6 months. 24/7. Did I mention the 24/7 part? I ALWAYS have a headache. It's just a matter of degree.I've come to love my migraines, because they are so much easier to deal with. As with you all, I have done the gambit of nuero docs and tests. I'm told I'm with one the best headache groups there is(in fact, they were in the Time magazine article last year, AFTER I started going to them)They tell me that I am in a catagory of something like 3/4% of 1% of 1% of the worldwide population.Imagine my joy!At one piont, they seriously wanted to commit me, against my will and give an injection in my BRAINSTEM!!!!!! A nueroblock of some kind because they thought I might try and kill myself. Well, no, but the thought of an injection in my brainstem MIGHT!!!!!! My question is this.... Has anyone or does anyone in this sight have this same affliction or heard of someone that does or are they blowing smoke up my @#$. Because, according to them, my only best hope is Menopause. And even then, they cant be too sure that will help. I'm 38, menopause could be a long way off, and I've ben in this boat for, or lets just say, guessing here, about, oh, 7 years. Oh, I should mention, that before I got to these docs, I was on 19 different meds in 3years, with zero response. And I am drug resisant. Imagine the luck. If this wasnt my life, I'd write afreakin' soap opera. Sad to say, it is real, and I"m really looking for help. Anyone have any ideas?
Beth
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forgetfulnot
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Re: And even then, they cantHas ANYONE heard
« Reply #1 on: Oct 29th, 2003, 2:31am » |
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Hi there enviro- tell us again just what you need to know. It appears you already know most of what anyone would need to know. Just wondering 
Lee
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envirodefender
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Re: And even then, they cantHas ANYONE heard
« Reply #2 on: Oct 29th, 2003, 2:37am » |
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Sorry,was I rambling? I think I must do that. In my head it sounded kinda concise! But thats MY head, and godforbid anyone should ever be THERE! My question was: has anyone every heard of that diagnois? Or am I some kind of medicl freak?
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forgetfulnot
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Re: And even then, they cantHas ANYONE heard
« Reply #3 on: Oct 29th, 2003, 2:58am » |
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Beth, Quote:| Or am I some kind of medicl freak? |
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] If you have cluster headache, some would answer yes, look over to the left, there is a world of info. a cluster quiz and the OUCH site that may answer many ?s for you. Sorry you needed to look us up, but if you have clusters you came to the best place for information and support. As you read and absorb all the great info. on this board, you will be amazed at the resource you have discovered.
Nice to meet you, sorry you need to be here.
Lee
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| « Last Edit: Oct 29th, 2003, 3:00am by forgetful » |
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Hirvimaki
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Re: And even then, they cantHas ANYONE heard
« Reply #4 on: Oct 29th, 2003, 9:11am » |
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Welcome. Sorry you have to be here, but if you like crazies, this is the best place to be. 
The best advice: Just read, Read, READ! There is a ton of info to the left.
Let us know how you are doing.
Hirvimaki
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TomM
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Re: And even then, they cantHas ANYONE heard
« Reply #5 on: Oct 29th, 2003, 9:24am » |
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This would be a question for the Chronics of the group like jonny or Roxy but let me lend some insight.
CHers are a very select group and I think we are 4% of the population (maybe it was 1%) but Chronics are a sub category of that. So consider yourself "Special". There was a thread that I read just yesterday about cycles of Chronics so take a look around the board.
Hope this helps.
TomM
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NotH20
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Re: And even then, they cantHas ANYONE heard
« Reply #6 on: Oct 29th, 2003, 9:46am » |
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Hey Beth - sorry that you're dealing with so much right now. I've had ch's for 23 years and I believe that whether you are chronic or episodic - we are ALL special people.......
I agree w/ the others - you need to read and gain as much information as possible. Sometimes we ch'ers need to teach the docs what course of action that needs to be taken.
You mentioned several meds, but you didn't mention any abortives such as Zomig, Maxalt, Imitrex injections or even Prednisone....have any of these helped you? If you haven't taken any of them yet, read on the left hand side and take this information to your doc.
Good luck to you and hopefully you'll find some pain free days/nights soon....
Mia
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vig
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Re: And even then, they cantHas ANYONE heard
« Reply #7 on: Oct 29th, 2003, 9:59am » |
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Beth
I had a similar pattern, but I just called it chronic.
You can get lost in the words, but...
It's nice to meet you and if you're a medical freak, then well, I guess I am one too.
-p
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catlind
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Re: And even then, they cantHas ANYONE heard
« Reply #8 on: Oct 29th, 2003, 10:28am » |
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Beth,
I can't say I've heard of that diagnosis, but that doesn't mean anything. What I HAVE heard is that menopause will fix your headaches, and because I had endometriosis, they went ahead and did a total hysterectomy to fix my headaches. Needless to say, it didn't work.
So don't worry about the menopause stuff, it didn't do a thing to help my head.
Cat
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BarbaraD
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Re: And even then, they cantHas ANYONE heard
« Reply #9 on: Oct 29th, 2003, 10:30am » |
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 Ok, I even understood your post... I'm chronic, have cycles within cycles, migraines and (let's see what's that other one) oh yeah, post tramatic concussion headache... Hard to tell which one's hitting at times ain't it?
I'm on Topamax as a preventative -and it's been working pretty good up until about two (a lifetime) months ago and then the "episode" started and now I'm in "cycle" or whatever.
But now, the migraines (and I can live with them) hit real regular too. Doc put me on Celebrex as an abortative or preventative for them. Didn't do much good, so I just keep it around for when Arthur (arthritisis) comes a-visiting. So yeah, get hit with the big M real regular, but that's not the bad one - sometimes can't tell if it's that or the concussion one - they really have a lot in common.
For the concussion thingy the doc gave me some kind of pain pill, but usually just take Ibuprophen for that - shoot it ain't that bad compared to the other two. It's just irritating. 
Insofar as menapause goes -- been there done that (I'm an OLD person) didn't help a darn bit. My raging harmones have been idle for years, but Mr. Demon is still raging.
I guess, in answer to your question - there ARE some more of us out here in about the same shoes. Haven't figurered out yet what to do about it, except live with it until somebody comes up with a CURE!
If you need a shoulder - I'm here for ya... We can lean on each other...
Hugs BD
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Prense
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Re: And even then, they cantHas ANYONE heard
« Reply #10 on: Oct 29th, 2003, 3:15pm » |
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on Oct 29th, 2003, 2:17am, envirodefender wrote:| I suffer from cluster headaches that chronic. However, within the chronic cycle, I also get episodic clusters. so, basically, I have a cluster 24/7, but within the chronic cycle, every day at 11am, 2pm and 7pm, it gets worse(as in episodic). |
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I am a chronic CH...I get hit at pretty much anytime. I'm not sure how one can be chronic and episodic at the same time. I think the chronic category is 1yr w/ CH with no remission period greater than 30 days. Something like that. If that is correct, those who do not fit that category are episodic. It's kind of an either/or thing. There are some chronics who get harder than what is "normal" for them during certain times of the year or whatever. I have heard the term "episodes" and "cycles" used to describe that...however, they are still chronic.
Other than that, you got migraines too.
on Oct 29th, 2003, 2:17am, envirodefender wrote:| The cluster cycles usually last for 4-6 months. |
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If there is remission of greater than 30 days between these "cluster cycles", then the diagnosis would be episodic. Until recently, I think the remission period was only 14 days for chronics. I don't even get that! I am not a sufferer of any other type of HA, and I have never had a remission period from CH of longer than 9 days in the last 10 years even with meds. I did get 8 days a few months ago though!  Cherish the moment. 
Anyhow, it depends on how you are defining "cycles", "chronic" and "episodic"...I know jack shit about migraines. WTF is an aura?! LMAO
Either way, unless you have a foot attached to your arm or a finger growing from your left nostril...
on Oct 29th, 2003, 2:17am, envirodefender wrote:| Or am I some kind of medicl freak? |
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...I'd say naw.
Welcome aboard though...now git rowin'!
Chris
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grumpett
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Re: And even then, they cantHas ANYONE heard
« Reply #11 on: Oct 29th, 2003, 3:35pm » |
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47 yrs old ch since age 17
hysterctomy age 25
was chronic for about 7 years and am now episotic with some relief for as long as 2 years. Dr said Monday that it looks like it might just fade away with age HA HA HA
Now the the best years of my life are for the most part behind me (litterly) 
I dont htink i ever had migraines but alot of head aches.
when they are not ch's I call them headaches. I had refused to go to a dr after 10 years of suffering and getting no where for treatment but, finally went and seen a new nero and was informed that they were able to help in the last 20 years with h2o and imitrex.
When i started NOBODY suggested that for me until I saw this site.
By the way, My new nero says I am her only female patient. Ottawa, ontario.
hang in there! I guess (in my case) they did ease off.
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envirodefender
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Re: And even then, they cantHas ANYONE heard
« Reply #12 on: Oct 29th, 2003, 3:48pm » |
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Hey Chris, Chronic as in all the freakin time.Never in the last 23 have I NOT had a headache, Episodic as in from Oct-Feb (usually, sometime longer) I go into a cycle of even worse, more intense pain at the same times of the day, usually 2pm, 4pm, 7pm and 10pm, for about 1/2 to an hour, that on top of the already existing headcache. As far as WTF is an aura  be glad, be very glad you dont know! It's kinda like the ghosting you get when you know youre going to get a CH. It's like a fuzziness or pale light in your periferal vision. It's often a precursor to a migraine. Along with other fun syptoms, like shooting pain in your eyes/head from light. Dizziness, nausea, inablity to deal with ANY kind of sound. A pin drop sends you running under the bed. It's nothing compared to CH though. Anyway, hope that explains it.  I think I answered al the questions, if not, sorry!My short term memory really takes a beating when I'm in my little cycles! Later!
Beth
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Virginia
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Re: And even then, they cantHas ANYONE heard
« Reply #13 on: Oct 29th, 2003, 4:32pm » |
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Hi Beth,
Welcome to the site.
Sounds like you have chronic headaches but for the definition that we go by here, you don't have chronic clusters. A cycle that last 4-6 months is not a chronic cluster. But all that is just semantics anyway.
Menopause won't help you with clusters but it may relieve you of the migraines. That's what happened to a friends' mother.
But if you've got migraines AND clusters the obvious choice of medication to try would be Imitrex. Is there a reason your DR hasn't tried that for you?
Don't forget to take the quiz on the left and good luck to you.
Virginia
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envirodefender
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Re: And even then, they cantHas ANYONE heard
« Reply #14 on: Oct 29th, 2003, 6:37pm » |
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The docs did put me on Imitrex. Didnt touch it. Which is really too bad, because I had a guy who get it for me blackmarket. Would have saved me a bunch of $ . I was on pred, depacote,valium,percocete, darvon,demeral,laudunum,vioxx,,I dont even remember them all. There were about 15 more, but I lost the list I used to keep. And you misunderstood me. Or more likely, I wrote it it incorrectly. I suffer from Chronic Clusters ALL the time, but then, inside that, I also get episodes of these other , worse, HA's. I dont know.... whatever, The docs say it's chronic w/ episodic episodes (not to be too freakin redundant). Plus the migraines, which are a wholey seperate animal. I dont know and I dont care. All I know is that after a total of 23 years of constant mind numbing pain and 7 different nuerologists, and 5 MRI's and 3 MRA's and 2 full body scans and every other test known man, this is what TPTB finally came up with. Then another round of meds, then a 3 week period were I wasnt aloud to take ANYTHING at all, ( hey now, THAT was a fun period!)then yet another round of meds, then the nuero block in the brainstem, then another rounds of meds that I am currently on. Not that I'm complaining . I'm just glad I found this site. It is very informative and helpful. Thanks to you all.
Beth
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goaway
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Re: And even then, they cantHas ANYONE heard
« Reply #15 on: Oct 29th, 2003, 6:45pm » |
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on Oct 29th, 2003, 9:11am, Hirvimaki wrote:| Welcome. Sorry you have to be here, but if you like crazies, this is the best place to be. |
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Ummm, what's a crazie??
What? Who? You mean US??!
Welcome to our newbie. Can't say that I have ever heard of a diagnosis like that.
You wouldn't happen to speak latin by some chance, would you?
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| « Last Edit: Oct 29th, 2003, 6:47pm by goaway » |
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Re: And even then, they cantHas ANYONE heard
« Reply #16 on: Oct 29th, 2003, 6:52pm » |
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Hi, Beth....hate to have to welcome you here, because if you're here....you're in pain, but I'm glad you found us. There is so much good information available on this site and the OUCH site (go join OUCH too.....  ). There is also another good site for those with other (migraine) headaches..it's http://www.headachesupportgroups.com/.
I am chronic also, and I know what you are talking about with the episodes within being chronic. When I'm in a low espisode period, I may have 1-4 ch's a day. When in high cycle...it can be up to 10 a day. But it is always everyday....come hell or high water.... .
Have you tried any other triptans? Sometimes there are others which will work for you if the trex doesn't.
Another therapy you might research is http://clusterbusters.com/. It has an excellent track record in helping most ch'ers that try it. It's just a little bit more difficult for us chronics.....go figure....
Hope some of this helps,
Tracey
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envirodefender
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Re: And even then, they cantHas ANYONE heard
« Reply #17 on: Oct 29th, 2003, 8:12pm » |
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HHHM, strange to be asked if I speak latin (Since technically it is a dead language  , )but since you ask, Why, yes, I took a class or two. Um, why? Did I say something like Men Sana in corpro sana? 'Cause if I did.....I LIED! It's not true! I dont have either!!!!!!  .
And thanks for the link to the other sights, I'll check them out too. And yes, TPTB did try other types of ???...brain lapse....the imitrexish stuff 
Beth
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envirodefender
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Re: And even then, they cantHas ANYONE heard
« Reply #18 on: Oct 29th, 2003, 8:19pm » |
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WOW, ok, I admit it. The clusterbuster site kinda surprised me. Do any of you use the things they suggest and do they work? You'll note I said "surprised", nothing about being unwilling to try anything to tame this demon! Anything to be worried about if you do use the homeopathic remedies?
thanks, Beth
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Re: And even then, they cantHas ANYONE heard
« Reply #19 on: Oct 29th, 2003, 10:23pm » |
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Do a search in the meds section...it'll keep give you enough to read for days. There is a fair amount of discussion over there about it. Some are testimonials, some are opinions...you can sift through it easy enough.
BTW, I kinda thought that was what you meant by the use of episodic...was just wanting to make sure. I try not to assume.
Regards!
Chris
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Re: And even then, they cantHas ANYONE heard
« Reply #20 on: Oct 30th, 2003, 3:20am » |
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Hmmm.
I don't think it is humaly possible to actually BE in a cluster 24/7. You'll have to pardon my frankness, but if you were in a CH 24/7, you wouldn't even be able to look at a computer monitor straight without wanting to throw it against the wall due to light sensitivity.
I have no doubt you have clusters, but it sounds like they are episodic. However, you probably 'shadow' (feel the dull burning in the temple and eye like it is kicking in, but it just lingers and lingers). You probably have chronic migraines, or another form of headache that is chronic.
I am chronic with CH, and basically that means I get them all the time. The longest break I have had between attacks since Februaury of '98 is 2 1/2 weeks; but that is the longest remission I have had. I also have a couple of other headache conditions, one of which is called Chronic Paloxysmous Hemicranea (CPH), occasional migraines and another condition in which the genius doctors have yet to figure out (A dull pounding in the back of my head that never goes away, but sometimes gets so bad I wanna cry.)
You might want to start your own research on headaches and try to see if you can find a description that matches your 24/7 headache. Also, take the cluster quiz off to the left. I have had CH for 16 years, the last 5 1/2 I have been chronic. For the last 8 or so years I have been doing my own studies in the field of vascular headaches, and the sad thing is, I have come to find that I know more than most neuro's do in the field of headache. It scares the shit out of me that I STILL cannot find a good neuro who knows his shit.
Are you a medical freak? Well, only you can know for sure. I know I am a medical freak and a FREEk of nature. That is why I am known as the FREEk. Not 'a freak', but THE FREEk.
Carl D "Rev. FREEk"
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Charlie
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Re: And even then, they cantHas ANYONE heard
« Reply #21 on: Oct 30th, 2003, 6:43am » |
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Welcome Beth. One thing about this place is that you are one of many and we all know exactly what this horror is like and how it affects sufferers. We understand.
I can't speak to drugs as I haven't had much experience with them. Others here can help you.
If you stick around, you'll find many ideas and ways to help you with this thing.
Sorry you had to find us but we're glad to have you.
Charlie
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Re: And even then, they cantHas ANYONE heard
« Reply #22 on: Oct 30th, 2003, 10:35am » |
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It IS possible to have CH 24/7 with no breaks. I got a headache in 1997 that never went away, and still hasn't. Your diagnosis may change, from migraine, to cluster migraine, to CPH, to cluster headaches, then to occipital neuralgia, then back to clusters (my path), but be careful not to hang the moon on whatever label is currently being applied to you.
In the last few years, I have learned this group is anything but "typical". We defy classification and neat little pigeon holes that the Docs would prefer we fit into, so there are varying diagnosis, degrees of pain, etc.
I ALWAYS have pain of a 3 or 4. It never goes below that. That pain can "cycle up" to an 8 or 10 several times daily. Usually three months of intense pain with round the clock hits of 8-10 per day, then a month to a month and a half of 3-4 pain, with only 3-4 intense headaches in a 24 hour period. Then the next three month period of constant hits occurs, and so on...but I am never out of cycle.
I have read recently that some chronic sufferers are having luck if they take Amerge as a preventative, rather than an abortive. Taking one before bed is supposed to stop the nightly hits, but most of our insurance companies balk at providing more than 6 doses of a triptans per month.
This board has been the best source of information about Doctors, resources and medications. Read on, keep experiementing with different combos. Try the triptans, the O2, and trust your own insticts when it comes to treatment.
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envirodefender
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Re: And even then, they cantHas ANYONE heard
« Reply #23 on: Oct 30th, 2003, 5:34pm » |
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Headbanger, AH HA!!!!!! THATS IT!!!!! Thats exactly ( or as close close to it as anyone has come) what I have. I have a headache of at 4 for 7 years, then the rest like you said. And it IS very hard to look at the computer monitor. I have to have it turned down very low, or light is a killer. The first few months were unbearable, but some how you learn to get through it. I have my own company and at first I was it's only employee. I HAD to go to work everyday. Brother, was it tough. I had to schedule things around the times of day I knew it would at it's worst so I cold go hide in a room and curl up in a ball. I find the anticipation of the "episodes" to be the worst. Thanks again,
Beth
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Re: And even then, they cantHas ANYONE heard
« Reply #24 on: Oct 30th, 2003, 9:40pm » |
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on Oct 29th, 2003, 2:17am, envirodefender wrote:| I have a cluster 24/7, but within the chronic cycle, every day at 11am, 2pm and 7pm, it gets worse(as in episodic). On top of that, I also suffer from chronic Migraines. |
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Not trying to split hairs here, but....
on Oct 29th, 2003, 2:17am, envirodefender wrote:| I've come to love my migraines, because they are so much easier to deal with. |
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Just seems to be a contradiction...
Not saying that it isn't possible to be in pain 24/7...but CH 24/7? How many days does one survive without sleep? When you do finally get to sleep, how do you know your are still in pain?
Not to mention...if a CH attack was non-stop for a significant amount of time, why would you "have come to love your migraines?" CH sucks...CH + migraine=ummmmmm, I'll pass! WTF is an aura?! LMAO!
I have had shadows at a solid 4 for alot longer than I thought I could stand. Even those in duration can be very debilitating. 24/7...I might could make it to 24/4, but then I'd be in a fairly serious drug induced sleep or something if that is what it would take.
on Oct 30th, 2003, 10:35am, hdbngr wrote:| I got a headache in 1997 that never went away, and still hasn't. |
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Fire your doc...
I'd be ONE grumpy sumbitch!
Oh well...I'm just a wimp anyway.
Chris
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IP Logged |
Where does the white go in a snowman when the snow melts?
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