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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> headaches !!!
        
(Message started by: oneittybittybitch on Nov 5^th, 2003, 2:57pm)

Title: headaches !!!
Post by oneittybittybitch on Nov 5^th, 2003, 2:57pm

:-/ 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

Title: Re: headaches !!!
Post by thomas on Nov 5^th, 2003, 3:05pm

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.

Title: Re: headaches !!!
Post by oneittybittybitch on Nov 5^th, 2003, 5:05pm

:'( 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. :-[

Title: Re: headaches !!!
Post by thomas on Nov 5^th, 2003, 5:07pm

From what I know a migrane is not as painfull as a cluster headache, maybe you should see another doctor.

Title: Re: headaches !!!
Post by Karla on Nov 5^th, 2003, 5:21pm

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.

Title: Re: headaches !!!
Post by Prense on Nov 5^th, 2003, 5:51pm

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

Title: Re: headaches !!!
Post by Pinkfloyd on Nov 6^th, 2003, 12:45am

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

Title: Re: headaches !!!
Post by Cooked Brain on Nov 6^th, 2003, 3:42am

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

[smiley=crash.gif]

Title: Re: headaches !!!
Post by jmorgan52 on Nov 12^th, 2003, 7:54am

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

Title: Re: headaches !!!
Post by Prense on Nov 12^th, 2003, 8:03am

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.

Title: Re: headaches !!!
Post by Karla on Nov 12^th, 2003, 9:30am

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.

Title: Re: headaches !!!
Post by Pinkfloyd on Nov 12^th, 2003, 10:06am

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

Title: Re: headaches !!!
Post by thomas on Nov 12^th, 2003, 10:25am

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.

Title: Re: headaches !!!
Post by r_headache on Nov 12^th, 2003, 1:04pm

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.

Title: Re: headaches !!!
Post by thomas on Nov 12^th, 2003, 1:12pm

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.

Title: Re: headaches !!!
Post by cathy on Nov 12^th, 2003, 6:41pm

PAIN IS PAIN......CLUSTERHEADACHES ARE SUMMIN ELSE!!!!!!!

Title: Re: headaches !!!
Post by Prense on Nov 12^th, 2003, 6:48pm

on 11/12/03 at 10:06:47, 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.

I agree with that, but is this a migraine/general HA site or a CH site?

Title: Re: headaches !!!
Post by pubgirl on Nov 12^th, 2003, 7:26pm

It is a thread for a new person looking for answers and you lot are hijacking it for a silly argument about migraines
:(

Title: Re: headaches !!!
Post by jonny on Nov 12^th, 2003, 7:41pm

on 11/12/03 at 19:26:56, 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
:(

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!!!

Title: Re: headaches !!!
Post by Prense on Nov 12^th, 2003, 8:01pm

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.

[smiley=twocents.gif]

Title: Re: headaches !!!
Post by pubgirl on Nov 12^th, 2003, 8:20pm

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! ;))

Title: Re: headaches !!!
Post by Prense on Nov 12^th, 2003, 9:24pm

on 11/12/03 at 20:20:13, pubgirl wrote:

but I don't think it helps to use their thread to discuss relative pain levels.

I agree... how the hell do we get on these tangents anyway? ;;D

Title: Re: headaches !!!
Post by Pinkfloyd on Nov 13^th, 2003, 2:11am

on 11/12/03 at 20:01:40, Prense wrote:

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)

Title: Re: headaches !!!
Post by pubgirl on Nov 13^th, 2003, 4:09am

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

Title: Re: headaches !!!
Post by Pinkfloyd on Nov 13^th, 2003, 9:43am

on 11/13/03 at 04:09:36, 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

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

Title: Re: headaches !!!
Post by Prense on Nov 13^th, 2003, 7:08pm

I didn't create any policy here...yes, I could have rattled off some web sites, but I don't know which ones are worth a crap...so I opted not to.

Title: Re: headaches !!!
Post by pubgirl on Nov 13^th, 2003, 7:44pm

Arnold Layne
shan't post much as we are still hijacking this thread, but I agree with you. I like your speeches, keep 'em coming!
Me, I hate to ooze, especially when it isn't sincere.

Title: Re: headaches !!!
Post by BobG on Nov 13^th, 2003, 11:29pm

compassion...........

And it's HAS to STOP!

This is a ClusterHeadache site and from now on we will only have compassion for those that suffer from Clusters and Clusters only.

Migrainers...to bad.....no compasion for you.....GET OUT.

Getting divorced?.....to bad....GET OUT.

Lost your job and your children are starving? ...to bad..no compassion....GET OUT.

Prayers needed. Fat Aunt Hilda fell out of the pickup and landed on the dog and broke it's neck?...to bad.....the dog is flat and Hilda is still bouncing..........screw you.......that doesn't deserve compassion. GET OUT.

And any newbies with compassion in their heart.........get over yourself. You ain't wanted here,

unless you have compassion for me for writing this.

(and I think I'm going to need it).

::)

Title: Re: headaches !!!
Post by tinyhuey on Nov 15^th, 2003, 3:24am

>:( I feel like ittybitty maybe I have the wrong site too. I have been told by my FD that I do have clusters, but after reading this Only GOD knows for sure. Sorry but thats why I came to this site to talk to other people and find out WHY it hurts so bad. But maybe I am at the wrong place. Thank you anyway, but I'm not going away easy!!!!!!!!!!!!!!!!!!!

Title: Re: headaches !!!
Post by Paigelle on Nov 15^th, 2003, 3:57pm

There are numerous migraine sites on the web, but as for clusters this is basically it and it is the best. Migraines are migraines, they can pretty much be controlled. But CH is a totally different animal. I gave birth with NO medication and that hurt. But I would rather give birth anyday than have another CH.