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Topic: headaches !!! (Read 1207 times) |
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oneittybittybitch
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headaches !!!
« on: Nov 5th, 2003, 2:57pm » |
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 ok I am new to ths.. ..not the headaches, the message board...anyone out there ever been put on topomax for migrain headaches. I was just put on it.. I suffer headaches about everyday , I think they are cluster headaches that usually turn into migrains, but I have had them for so long I have named her Annie. I take Imatex, Icbutabul, paxil, over the counter meds. snuck some prescip. meds from my husbands bottles as needed, and finally my Dr. has prescribed topomax, i know it is for seizures, I have read about it, and for the past two days my Annie has been visiting on a scale of about a 4 rather than a 9 or 10...any one know any thing about topomax, anyone take topomax that can give me some information about it, I am hoping that this will be the relief, I have been waitiing years for
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thomas
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I have never heard of a cluster turning into a migrane. I can't speak for those that have them, but there are some hear who do suffer from both. You wont find much info here about migranes, as only a few who reside here have them.
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| « Last Edit: Nov 5th, 2003, 3:06pm by thomas » |
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oneittybittybitch
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Re: headaches !!!
« Reply #2 on: Nov 5th, 2003, 5:05pm » |
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 thanks for your reply...maybe I was directed to the wrong site for help. I have been a sufferer of headaches for about 10 years now. I have one head ache after another , as soon as I think i have one gone another comes, with all the ingredients of a migrain. My Dr. has said I have a form of cluster headaches/ mini headaches / that if not caught and are usually not caught turn into the migrain, sometimes I have no way to try to catch the headache in progress and it is a full blown migrain out of control....
I have read through the message boards of the cluster sufferers and I feel alot like these people but with different symptoms..I need dark quiet..soundless smelless..peace and quiet for, as I said ,"Annie", for some times I think my Brains are about to explode..and pray they will, again thankyou for your reply, and I will look for another site maybe that could be of more help. 
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thomas
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From what I know a migrane is not as painfull as a cluster headache, maybe you should see another doctor.
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Karla
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Re: headaches !!!
« Reply #4 on: Nov 5th, 2003, 5:21pm » |
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It sounds like you are suffering from migraines if you need a dark place to go and lay down in. clusters you pace and can't sit still. I get both clusters and migraines and they are very different in nature. The clusters attack fast and are increadably painful. A migraine is slow to build. A migraine is about a 6 on the pain scale at its max level. A cluster is a 10. A migraine will last all day and a cluster will last one or two hours. There is a cluster quiz you can take its button is located on the left side of the screen <=== Maybe that will help you decide if you have clusters or not.
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Karla
suffer chronic ch
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Prense
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Re: headaches !!!
« Reply #5 on: Nov 5th, 2003, 5:51pm » |
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I agree...doesn't sound like CH symptoms. Topamax is being used to prevent CH... I am not sure about migraines or not. Topamax doesn't generally become effective as a preventative until about the 2nd week or so of taking it. There are many web sites devoted to HAs in general. Most of those will contain more information than you care to read about migraines.
Chris
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Pinkfloyd
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Re: headaches !!!
« Reply #6 on: Nov 6th, 2003, 12:45am » |
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To classify migraines as a 6 on the pain scale is a little over-generalization. I wouldn't ever try to convince the families of those people I know (knew) that have committed suicide due to migraines.
Topamax is being widely prescribed now for migraines although it is losing favor a bit due to the nasty side effects some migrainers (and cluster sufferers) experience.
It sounds more as if you may have tension headaches that trigger migraines or it may just be the beginning of the migraine itself presenting itself slowly and building intensity. Just as with clusters, migraines are best aborted when treated as early in the attack as possible. If you have enough medication to be able to treat all your attacks at the first sign of trouble instead of waiting to see if it will fizzle out on it's own, you'll have much better luck treating them and possibly cutting down on some of the attacks.
Topamax must be titrated upward very slowly to cut down on the side effects. Everyone is different but most migrainers go up in increments of 25mg every week or two. All depends on your own system. Many people have had great results with Topamax. If you find yourself calling it "dopamax" due to short term memory loss etc, you're probably upping the dose too quickly.
This information holds true for most cluster sufferers also.
I'd suggest two places to get the best information on treating and living with migraines....
http://headaches.about.com/mbody.htm
or if you can get usenet newsgroups....go to
alt.support.headaches.migraine
or,
you can click on my email addy.
Not that you wouldn't be accepted here with open arms, but the other two sites will have much more information for you with regards to treating complicated migraines such as yours.
good luck itty.. 
PF
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Cooked Brain
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a.k.a. Max Payne, YOUCH this hurts...
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Re: headaches !!!
« Reply #7 on: Nov 6th, 2003, 3:42am » |
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I know I've said this before but I'll still say it again:
if you dont feel the urge to walk through the wall head first it's probably NOT ch
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JohnM
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Re: headaches !!!
« Reply #8 on: Nov 12th, 2003, 7:54am » |
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I am one of those who find that pacing/dancing does not help, neither do I have the desire to do so. I always want to just go somewhere very dark and very quiet and lie down and try and wait it out.
I saw a survey here ages ago that seemed to imply that the vote was pretty much split between the "dancers" and the "lie down somewhere quiet and die" sufferers.
Please don't write off someone as not being a CH sufferer just because they don't fit the "dance" profile.
Until I found a Dr who correctly diagnosed me as a CH sufferer I was always led to believe I had migraines, but I never had any of the "auras" of flashing lights or suchlike, which are common with migraine.
The acid test for Ch as far as I am concerned is:
One sided unbearable HA in the temple area,
One red, tearing eye,
One running nostril,
One or many of these bastards most days for weeks or months on end at regular times of the day,
Being awoken from sound sleep with a HA,
Alchohol rapidly brings the HA on when in cycle.
and perhaps the "CH turning to migraine' is just ittybitches way of describing them. After all most people think a migraine is much worse than a "plain old headache", which is what most people out there think CH is anyway when youtell them about it.
Just my 2 cents worth.
John
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Prense
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Re: headaches !!!
« Reply #9 on: Nov 12th, 2003, 8:03am » |
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She didn't really give enough info to make any sort of educated opinion... Some of these symptoms stand out...eye pain, runny nose, duration, etc... None of which were mentioned.
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Karla
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Re: headaches !!!
« Reply #10 on: Nov 12th, 2003, 9:30am » |
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Pink Floyd, I get both migraines and cluster headaches. It is from my own personal experience that I said a migraine is a 6 compared to a cluster being a 10. Also the ch.com message board had a poll taken awhile ago asking people who had migraines and ch to rate their migraine pain compared to ch pain. Every single person that replied, and there were several, said the migraine pain was a 6 compared to a 10. That is what I based my statement on also. I have never personally heard of anyone committing suicide over a migraine. Sorry. It is ch that are nicknamed suicide headaches not migraines. I know migraines last for days at a time. I get hit with 4-6 migraines a month and know their pain well. It is a migraine that I will drag my but to the ER over not my ch. It is because the migraines make me so sick and sensitive to light and sound and last so long. I don't mean to sound insensative to migraines it is just my personal opinion which I think I am entitled to.
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Karla
suffer chronic ch
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Pinkfloyd
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Re: headaches !!!
« Reply #11 on: Nov 12th, 2003, 10:06am » |
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Karla,
Of course you're entitled to your opinions.
Just because YOU don't personally know of anyone committing suicide over migraines does not mean people don't do it. I'm glad you don't know anyone that has done so. You may be sorry you *don't* know anyone, but I'm sorry that I DO know someone that did.
I have also had both migraines and clusters and agree that; Migraine=#6 and clusters=#10 on an average.
That wasn't my point. My point was that it's not up to us (in my opinion) to decide that someone's #6 migraine is not enough pain to want to try to eliminate them with psilocybin treatments. That's what this person was being told...that he wasn't in enough pain.
PF
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[Michel de Montaigne
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www.obscuredview.blogspot.com
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thomas
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One person's 6 may be an 11 for another person - everyone's tolerance is different. It's too bad any of us has to suffer. But it is really impossible to determine if one person's pain affects them more than someone else.
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r_headache
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Re: headaches !!!
« Reply #13 on: Nov 12th, 2003, 1:04pm » |
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how can someone who has never had a 10 define pain as a 6? Only when you have experienced the level of a 10 does a 6 not seem so bad.
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thomas
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A person's definition of a 10 would have to be the most amount of pain they have ever experienced. So if they have only had a kip 6 then that would have to be a 10 for them.
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cathy
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Re: headaches !!!
« Reply #15 on: Nov 12th, 2003, 6:41pm » |
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PAIN IS PAIN......CLUSTERHEADACHES ARE SUMMIN ELSE!!!!!!!
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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Prense
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Re: headaches !!!
« Reply #16 on: Nov 12th, 2003, 6:48pm » |
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on Nov 12th, 2003, 10:06am, Pinkfloyd wrote:| That wasn't my point. My point was that it's not up to us (in my opinion) to decide that someone's #6 migraine is not enough pain to want to try to eliminate them with psilocybin treatments. |
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I agree with that, but is this a migraine/general HA site or a CH site?
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pubgirl
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It is a thread for a new person looking for answers and you lot are hijacking it for a silly argument about migraines
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jonny
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on Nov 12th, 2003, 7:26pm, pubgirl wrote:It is a thread for a new person looking for answers and you lot are hijacking it for a silly argument about migraines
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Does your brain refuse to realise that this is a CH site and advising on meegraines can hurt newbies here?
DUUUHHHH!!!!
.....................................jonny
BTW....Wendy, you know better than that....when you going to let people know who you are and the name change?
Get real!!!
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| « Last Edit: Nov 12th, 2003, 7:45pm by jonny » |
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Prense
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Re: headaches !!!
« Reply #19 on: Nov 12th, 2003, 8:01pm » |
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Not to mention if migraine sufferers want to discuss treatments, coping, etc...there are numerous boards dedicated to them. Even general HA sites are primarily migraine related.
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pubgirl
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Absolutely agree with both of you, wouldn't DREAM of arguing with you, this is a CH site for CH sufferers and if there is a chance it is not CH we should help the person find the right assistance elsewhere. Apart from anything else, if it is migraine they are lucky as they can treat that.
but I don't think it helps to use their thread to discuss relative pain levels.
Wendy
(can't be Annie anyway as that is officially the name of a headache now!  )
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| « Last Edit: Nov 12th, 2003, 9:42pm by pubgirl » |
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Prense
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Re: headaches !!!
« Reply #21 on: Nov 12th, 2003, 9:24pm » |
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on Nov 12th, 2003, 8:20pm, pubgirl wrote:but I don't think it helps to use their thread to discuss relative pain levels.
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I agree... how the hell do we get on these tangents anyway? 
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Pinkfloyd
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Re: headaches !!!
« Reply #22 on: Nov 13th, 2003, 2:11am » |
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on Nov 12th, 2003, 8:01pm, Prense wrote:Not to mention if migraine sufferers want to discuss treatments, coping, etc...there are numerous boards dedicated to them. Even general HA sites are primarily migraine related.
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Yeah, right. But if they want to buy porn, this is the place to put in their order!!!
You guys kill me!
You can discuss pain here but just don't bring migraine pain into the equation? Is there a list of maladies that I can use to discuss pain topics?
You can discuss what helps clusters but just don't mention that it might help migraines also, even though there are plenty of supporters here that suffer from migraines and a few people that suffer from both.
You can show migraine sufferers where to go for better info on migraines (as I did) but don't give them any useful information in the same post. Rather, include a link for a proctology site so they can have the boot in their ass removed on their way to the migraine site.
I understand this is a CLUSTER site. I know there are hundreds of sites dedicated to migraines and headaches in general. And I know you've all heard this before....blah, blah, blah.....
Just remember.....most of the medications you use to treat clusters were designed for migraines. Researched because of the suffering of migrainers and the dollars that can be made off the backs of migraine sufferers. Without them, we'd all have the same choice of drugs that most other rare conditions have....."orphan drug status medications" and we'd be paying even higher costs for the drugs that work, than we currently pay.
Without migraines, do you really think Glaxo would have spent millions on developing Imitrex for cluster sufferers alone? Fat chance.
I know you're all pissed at the amount of attention paid to migraine research. I know you shake your heads when migrainers complain about the amount of pain and life disruption, they endure. I know you get pissed at people that say, "oh yeah, I get those but I sleep them off." Wouldn't you like to educate them a little before giving them the boot? Is it EVER going to get any better without education?
IMHO, you can be pissed at the system without being pissed at fellow human beings that suffer from pain.
Turn your back on one person in pain and it's easier to turn your back on others in pain.
Do you really think that migrainers are stupid? That they will stay here and take over a cluster site when they do have so many other sites more suited to their problem?
Think they'll just stick around for the porn? Afraid your friends will be *stolen* by some sneaky migrainer?
cheer up people!!! There's plenty of pain to go around. It's the compassion that seems in short supply. Don't go down with any left in reserve.....ya can't take it with ya!
PF
(used variations of the word migraine 15 times..(whoops. 16.....please put them on my account, thanks)
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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pubgirl
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Crazy Diamond
I made much the same point about migraine drugs on another thread and I get CH and migraine so do have a sympathy all round
BUT
Itty was kindly pointed to some other possible sites by you in your previous post, she has been private messaged to see if the clarification can be achieved about the symptoms and diagnosis and where she can get help for what, she has received messages of support here, I don't see a lack of compassion. Just messages of support getting lost amongst silly debates between long-standing board members.........
Itty
If you are not sure where to go now, post again or private message again now you know how.
Wendy
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| « Last Edit: Nov 13th, 2003, 5:12am by pubgirl » |
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Pinkfloyd
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Re: headaches !!!
« Reply #24 on: Nov 13th, 2003, 9:43am » |
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on Nov 13th, 2003, 4:09am, pubgirl wrote:she has received messages of support here, I don't see a lack of compassion. Just messages of support getting lost amongst silly debates between long-standing board members.........
Wendy
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I know Wendy. You're right and I was commenting more on standing policy than on how Itty was being treated.
Just my bi-monthly State of the Union address.. My opinion only. A pet peeve about comparing pain and suffering. It can't be done in my opinion because even if one could definitivly classify pain on a scale that would be equal for all.....you can't do the same with suffering. Although connected, they aren't the same thing.
And again, yes, these pages often ooze with compassion, but it appears to be selective sometimes.
The Lunatic on the grass
PF
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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