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        New Message Board Archives >> 2005 General Board Posts >> Morbid curiosity.(The great pain debate)
        
(Message started by: thomas on Sep 22nd, 2005, 11:32am)
Title: Morbid curiosity.(The great pain debate)
Post by thomas on Sep 22nd, 2005, 11:32am
I wonder what the ratio of chers to migrainers we have on this board nowadays.......  ::)
Title: Re: Morbid curiosity.
Post by Margi on Sep 22nd, 2005, 11:35am
question:  does a can of worms make a pfffftt sound like a pop can when you open it up, Thomas?

you got a death wish, man?

;)

I think me and Ree are the only out of the closet meegrainers here.  
Title: Re: Morbid curiosity.
Post by rextangle on Sep 22nd, 2005, 11:52am
No meegraines here Thomas... 100% pure chronic CH.


BTW, my new description for CH is:

"Headbutting with a Unicorn!" ;)
Title: Re: Morbid curiosity.
Post by thomas on Sep 22nd, 2005, 12:10pm
I'm talking about misdiagnosis, not any supporters of chers who get migraines.
Title: Re: Morbid curiosity.
Post by Woobie on Sep 22nd, 2005, 12:18pm

on 09/22/05 at 11:35:57, Margi wrote:
I think me and Ree are the only out of the closet meegrainers here.  




LOL Margi - me too.......... AND leesa too.



I think Clusters cause migraines for their supporters.
Title: Re: Morbid curiosity.
Post by cootie on Sep 22nd, 2005, 12:24pm
Hey you forgot sumone ! But mine are from my spine crap in my neck......either way they are BAD BAD BAD. Blood red eyes lookin on Pam
Title: Re: Morbid curiosity.
Post by minnie on Sep 22nd, 2005, 1:26pm

on 09/22/05 at 12:18:10, Woobie wrote:
LOL Margi - me too.......... AND leesa too.

I think Clusters cause migraines for their supporters.

ADD ANOTHER SUPPORTER MINE SINCE MENNAGITIS.
   FOR thomas BILLY GETS migraies had them since childhood.HUGE FAMILY HISTORY OF THEM.he thinks his GrandDad mayhave gotten clusters but he's gone and stories are sketchy.
Title: Re: Morbid curiosity.
Post by thomas on Sep 22nd, 2005, 1:45pm
It's more of a rhetorical question.  It's to make you think.  I know that there are several people here that have migraines as well as clusters.  It is a believe of mine that CH sufferers have 3 types of headaches.  I am just curious out of all the people that come and register, some don't even post, how many of them do not have CH.  But have been told by a Dr. that they do.  Some days my brain acts up, today is one of those days, you all must suffer the side effects of my musings.
Title: Re: Morbid curiosity.
Post by don on Sep 22nd, 2005, 1:50pm
Its a very good question.

Back in the day most CHers were being mis-diagnosed as Meegrainers and being treat as such.

Now it seems the tables have turned where meegrainers and other headache types are being mis-diagnosed as Chers.

Misdiagnose CH for Meegrain and the sufferer suffers more pain than neccesary.

Misdiagnose a Meegrainer for a Cher and the sufferer suffers more meds than neccesary.
Title: Re: Morbid curiosity.
Post by cootie on Sep 22nd, 2005, 1:52pm
Oh PS: Brad "rarely" gets ha's other then his ch cycle stuff or sinus or not eating on time deal. He has some history of migraine in his family tho and a sister has them pretty bad. Question answer Pam  
Title: Re: Morbid curiosity.
Post by Jimi on Sep 22nd, 2005, 2:02pm
    Interesting topic. I have been pain free now for 5 years after yearly cycles for over 30 years. Always left sided. Since my last cycle, I have been getting migraines, usually at least once or twice a week. Always on my right side. If 6 ibuprofen does not back it off enough, I will take 1/2 of a imitrex pill and it will go away within 45 minutes. But hey, I am not complaining, I will take these anytime.  BTW, I didn't know they were migraines until I took an imitrex one day and it went away. I just thought they were regular headaches.
Title: Re: Morbid curiosity.
Post by minnie on Sep 22nd, 2005, 2:08pm

 I know retoricle question but I'm gonna answer your ? with a ? .so deal with me on this ok  ;)  .  Migraines and how you deal with them ie..laydown ,dark room ect.compared to clusters (don't have to tell you the difference).Billy was misdiagnosed at first  [smiley=mad.gif] damn doctors how many sinus infections do they think you can get in a year ?so of course off to the ent specialist   [smiley=furious.gif]
.Guess what I'm rattling on about is it seems to me(my  [smiley=twocents.gif]) is misdiagnosis is mainly but not only with sinus infections.does that make sense ?
       Minnie
Title: Re: Morbid curiosity.
Post by thomas on Sep 22nd, 2005, 2:17pm
Right Minnie, you are describing an incorrectly diagnosed CH patient (told they have something else).  I am talking about people who are incorrectly diagnosed with CH (they actually do have something else).
Title: Re: Morbid curiosity.
Post by minnie on Sep 22nd, 2005, 2:34pm
[smiley=winkkiss.gif]  gotcha Thomas.Thank you for being so patient I understand what you mean .I bet there are those wrongly being diagnosed as Clusterhead either by a Dr. or self diagnosis.
  Minnie
Title: Re: Morbid curiosity.
Post by Margi on Sep 22nd, 2005, 2:37pm

on 09/22/05 at 14:02:49, Jimi wrote:
 BTW, I didn't know they were migraines until I took an imitrex one day and it went away. I just thought they were regular headaches.


I don't know about the other migrainers here but I find that quite insulting, Jimi.

A migraine is in NO way a "regular headache".  I'd say it's more probably that taking an imitrex was like firing an elephant gun at a squirrel for the headache you were having and that's why it went away.  If it were true migraine, you'd be laying in a dark room, impaired vision and nausea that doesn't leave until the migraine does.

Sorry to interrupt, Thomas, this is a good topic. I think, sadly, there are a number of misdiagnosed folks out there who are prescribed cluster meds for non-cluster headaches. :(
Title: Re: Morbid curiosity.
Post by ozzy on Sep 22nd, 2005, 3:06pm
Margi, but not "all" migraines are defined as having to lay down, photophobia, impaired vision, nausea, etc.

I am more with Thomas in the thought that CHrs suffer usually of different headache variations.

And Jimi, are you sure they are not "mutated" CHs? As a matter of fact, I'm thinking that line between chronic and episodic is only the periodicity of the pain. Meaning, we are never truly cluster free. Pain is pain. The Kip scale is pretty accurate, not perfect, but pretty accurate.

Ozzy
Title: Re: Morbid curiosity.
Post by Margi on Sep 22nd, 2005, 3:19pm
well, Ozzy, all my migraines are that way.  Regardless, they all are WAY different that just a regular headache.
Title: Re: Morbid curiosity.
Post by don on Sep 22nd, 2005, 3:23pm
Margi I dont think Jimi was trying to be insulting. Afetr 30 years of intense pain from clusters anthing less than clusters would appear to me as a regular headache to. Wether it be a migraine or any other type of HA.


Quote:
Regardless, they all are WAY different that just a regular headache.  


Not neccesarily to a long time cluster sufferer.
Title: Re: Morbid curiosity.
Post by ozzy on Sep 22nd, 2005, 3:29pm

on 09/22/05 at 15:23:00, don wrote:
. Afetr 30 years of intense pain from clusters anthing less than clusters would appear to me as a regular headache to. Wether it be a migraine or any other type of HA.



What about a Kip 2 or 3?

I can "deal" with them as much or better than a pounding hangover headache. I deal with both easier than a higher Kip CH. But to say that all clusters, emphasis on all , are worse than any headache, is kind of arrogant.

Ozzy
Title: Re: Morbid curiosity.
Post by thomas on Sep 22nd, 2005, 3:30pm
Yes, I too believe/know the migraines are different than normal HA's.  The problem is that pain is only relative to the person experiencing the painful condition.  There is no way to transfer pain, from person to person and no matter what type of pain, be it migraine, ch, gunshots, abdominal pain, the degree that it affects each individual is unique to that person.  It is impossible to generalize pain of any kind.  What brings me to my knees, may only be a minor nuisance to some one else.  It is murky waters at best when we try to classify pain.
Title: Re: Morbid curiosity.
Post by Jonny on Sep 22nd, 2005, 3:34pm

on 09/22/05 at 15:29:29, ozzy wrote:
But to say that all clusters, emphasis on all , are worse than any headache, is kind of arrogant.


Where in Dons post does it say "All"?
Title: Re: Morbid curiosity.
Post by BobG on Sep 22nd, 2005, 3:37pm
6 years ago it was "wimmin don't get cluster headaches".
Then DJ started this message board. And the world became aware of cluster headaches. More and more women came aboard stating they suffer clusters.
Now we know that the doctor were wrong all along. But, like others have said, are women now getting an incorrect diagnoses of clusters? Beats heck outa me.

Maybe it's just a fad. Seems that every year brings a new "in ailment", Carpal tunnel then tennis elbow then something else is "the thing" to have. Beats the heck outa me.
Title: Re: Morbid curiosity.(The great pain debate)
Post by Margi on Sep 22nd, 2005, 3:42pm
I didn't interpret Don's post that way either.  As a migrainer, I'd be first in line to say that clusters are the worst kind of headache I've ever witnessed!  

I know this is an unpopular theory here but I've been searching since you said that, Ozzy, that not all migraine has those symptoms.  Every site I've found describe it very similarily - photo/phonosensitivity, aura, nausea.  Symptoms outside that box indicate a different type of headache.  I also get sinus headache and had one last weekend that lasted 48 hours in total.  Sure, it hurt, but I was still able to function.  Had it been migraine, I would have been doing my vampire impersonation - total dark and quiet, sleeping by my bucket.   ::) Oxygen actually helped abate the sinus h/a.  I didn't take an imitrex though because I knew it wasn't migraine because I didn't have the rest of the symptoms (and the pain was about a 5, compared to a migraine.  And, from what I've witnessed over the years, I'd say a migraine is maybe about a 3, compared to a cluster).  ALL head pain sucks, regardless of what type it is!  
Title: Re: Morbid curiosity.(The great pain debate)
Post by ozzy on Sep 22nd, 2005, 3:45pm
Jonny, the emphasis was mine, and only mine. To stress the point, that we are not, superhuman that have the worst pain known to human beings every time we get hit (granted, some may).


We all go through the, just take an aspirin, blah, blah, blah. I've gone through it in the past few days as a matter of fact.

Are there people misdiagnosed with CH around this board, sure, it's been that way since I remember. Should we steer them in the roight direction? Absolutely, no need to over-medicate or wrongly medicate. Should we feel superior? No way!


Ozzy
Title: Re: Morbid curiosity.(The great pain debate)
Post by unsolved1 on Sep 22nd, 2005, 3:47pm
I can only wish I didn't have clusters  :-/

UNsolved
Title: Re: Morbid curiosity.(The great pain debate)
Post by thomas on Sep 22nd, 2005, 3:50pm

on 09/22/05 at 15:47:38, unsolved1 wrote:
I can only wish I didn't have clusters  :-/

UNsolved

Me too, bro.  I wish the condition didn't exist period.
Title: Re: Morbid curiosity.(The great pain debate)
Post by rextangle on Sep 22nd, 2005, 3:53pm
Ditto... I'm still on 2-3 attacks nightly, the 3am one is the big mofo :'(
Title: Re: Morbid curiosity.(The great pain debate)
Post by Jonny on Sep 22nd, 2005, 3:56pm
Oz,

I was more or less going to post what Don posted until I read his post, After 30 years of knowing what Kip 8-9 and 10's are anything less would be less, much less depending how bad that CH'er had it for those 30 years.

Superior?, I dont think so.....Fucked out of 30 years of life?....you bet your ass!!.....I know!
Title: Re: Morbid curiosity.(The great pain debate)
Post by rextangle on Sep 22nd, 2005, 4:00pm
Thomas, even becoming episodic would be a blessing, at times (well, every night actually) there is that moment where I feel so fed up. It's so repetitive, horribly painful, that I'm wondering if this shit will ever end, and yes I cry like a baby more often than I'd like to admit, but that's the truth....
Title: Re: Morbid curiosity.(The great pain debate)
Post by Jonny on Sep 22nd, 2005, 4:10pm
At least none of us invited the pain like these idiots....LOL ;;D

http://www.m90.org/gallery/video/lotsoffun0-3134.wmv
Title: Re: Morbid curiosity.(The great pain debate)
Post by sassy_lady on Sep 22nd, 2005, 5:39pm
I've had migraines for as long as I can remember, got hurt when I was little, about 4 or 5years old, fell out of a tree, have had them ever since. I get hit 3 to 5 times a month, kind of depends on my day, have to be careful what I do!! been worse since workmens comp. & car stuff happened, now I get them 7 to 9 times a month, pain got harder too.. always on left side, very rare on right side, but do get them on that side too. lite kills me!!
PFDAN TO ALL !!
Title: Re: Morbid curiosity.(The great pain debate)
Post by Lizzie2 on Sep 22nd, 2005, 5:58pm
Margi,

Did you know that 90% of sinus headaches are actually migraine with sinus symptoms?

Random fun fact. :)

And not to anyone in particular, but more of a rant on this topic:

While CH is certainly my major pain devil, that's not what is setting me off right this second.  No worries though...I usually don't escape a night without 4 or so.  So anyway...here's the rest:

I'm a migraineur....daily migraine for over 4.5 years now...it never goes away.  The past few months, as its gotten much worse again, I am starting to have a lot more vomiting than I ever used to.  Before, I mainly had a lot of nausea daily,  but not so much vomiting with it.  I rarely get my zofran down in time before I lose it.

I definitely know the pain of  migraine, but I go to work with it every day just the same.  The about.com headache and migraine site has a good variety of people who all experience and deal with migraine in many many different ways.

One of the biggest insults I often hear...and I do mean a serious insult...is when someone tells me, "Well...yours aren't that bad.  When *I* have a migraine twice a year, there is no way in hell I could work." I just want to say, ."EXCUSE ME?  DO YOU WANT MY F-ING LIFE?!"  Just cuz mine never leaves and I still  go to work and school never ever made it one damn bit easier than anyone else's.

Add the chronic CH and basilar migraine attacks to that and you have one very f'd up 24 year old....who has resigned to living life as a freaking hermit with the shades down when not at work trying to save little infants.

Sorry...don't mean to go off on a tirade...........just a little sick of the "pain games" that people play....and just frankly tired of hurting.  Day night hour after hour...it never stops.  <sigh>

OK now I'm gonna go punch a wall....and then it'll  all  be better for a little while.  LOL

Lizzie
Title: Re: Morbid curiosity.(The great pain debate)
Post by Jimi on Sep 22nd, 2005, 6:48pm
   I didn't mean to start something and I certainly didn't mean to insult you Margi. Geez lighten up. What I was trying to say is that I never knew what a migraine was suppose to feel like. I was just calling them sick headaches. And Margi, if I couldn't stop it, many times i did end up sick at my stomach and lying down in a dark room.
   But it is interesting to me that I never had them until just the last 5 years, so maybe Ozzy is on to something. Maybe they have become a mutated cluster. I don't know. My expertise is in cluster headaches. That headaches I DO know.
   Anyway, 1/2 an imitrex knocks it away. Thats all I know.

    PS I got your pm Grandma. I have lightened up on the ibupotren since I made that discovery. Thanks for the concern. :-*
Title: Re: Morbid curiosity.(The great pain debate)
Post by Lizzie2 on Sep 22nd, 2005, 6:56pm
Jimi...   :-*

Call me....you'll get a heartwarming laugh at how I sound with laryngitis...that will most certainly lighten the mood  BWAHA

Don't eat motrin....bad for tummies.....

;;D

-The Little One :)
Title: Re: Morbid curiosity.(The great pain debate)
Post by Jimi on Sep 22nd, 2005, 6:58pm
     LOL...Can't right now. Survivor is coming on LOL. I will catch up with you tomorrow.
Title: Re: Morbid curiosity.(The great pain debate)
Post by unsolved1 on Sep 22nd, 2005, 6:59pm

on 09/22/05 at 16:00:27, rextangle wrote:
Thomas, even becoming episodic would be a blessing, at times (well, every night actually)....


I can understand that !

UNsolved
Title: Re: Morbid curiosity.(The great pain debate)
Post by Lizzie2 on Sep 22nd, 2005, 7:08pm

on 09/22/05 at 18:58:11, Jimi wrote:
     LOL...Can't right now. Survivor is coming on LOL. I will catch up with you tomorrow.


Alright...the OC is on out here and then the Apprentice and then SEASON PREMIER OF ER!!!

But tomorrow night is hot man....a new show called "Inconceivable" on NBC...and guess what that's about?!?!?! :)

I work 8-4 tomorrow at a nextdoor hospital..............I'll be home the rest of the night!

Carrie :)
Title: Re: Morbid curiosity.(The great pain debate)
Post by Carl_D on Sep 23rd, 2005, 6:17am
I'm chronically chronic.

I have got migraines since I was a teen, but never too frequent or bad, that is until I went chronic in '98. Since then a couple of other things crept up on me. I've been bedridden with a major migraine and getting hit with CH at the same time a few times. I shadow 24/7 when not in an attack - sometimes light, sometimes heavy. Yesterday for most of the day, my right eye stayed drooped. Still is a bit. I have CPH (chronic paloxysmous Hemicrainea), which is basically like a 5 -10 second icepick into the noggin'. Years ago when I was still going to my old church, my buddy Broc (whom I worked with alot musically) would see it in my eyes when it would happen and just say "Another laser shot?" Yup. It can occur anywhere from 10 times a day or 10 times an hour. Sometimes all I see is white for a couple of seconds, like staring into a blinding light. Neuro called it "white outs" at the time. I also have TMJ - Trimandibular Joint Disorder. I was told 10 years ago when diagnosed with TMJ that it can aggravate the headaches, and cause some wicked jaw/earaches.

One thing that never goes away though is the dull ache in the back of my head at the base of the skull. Like the shadows, it can be heavy or light. What is really fucked up though is sometimes if I bend over to pick up something, I get a thud in the back of my head like someone slapping me hard. Have even had it feel like someone whacked me upside the back of the head with a baseball bat and just fallen over. Passed out like that a couple of times. It was hell when I had my old band together a couple of years ago, cuz as a musician you are constantly bending over adjusting pedals, plugging and unplugging cords, etc. Compounding with that is an incident back in July of this year which I still have no memory of where I did some major headbanging on the concrete (which scared the hell out of all of my friends that night) and then I slowly came to in the hospital with my head ringing! Apparently they tried to get me to stop beating my head but I wouldn't... Sunny ran and grabbed pillows and threw under my head to try and soften the blows. Spent a week in the hospital and missed Dallas cause of it. My head hasn't been the same since. Am I ashamed of that? You bet your ass! That is why this is the first time I posted it publicly. Seemed fitting for the nature and title of this post though to let my hair down. Fuckit!  :-[

BTW - I know what you mean Jimi about low level migraines. They are annoying as hell but you can still function during it.

Carl

*I should add that I obviously have other things going on here than just clusters.
Title: Re: Morbid curiosity.(The great pain debate)
Post by Jimmy B. on Sep 23rd, 2005, 6:32am
Speaking of mis diagnosis...I go to have an E.M.G. done at my primary care Doc's office. They want to check on how well the nerves are regaining function ever since my double discectomy in March. Seems my primary Doc has a Neurologist friend that comes in once a month to perform these tests.

Well as the test gets started the Neurologist comes in and asks "How are the Migraines doing, Jim? ....Migraines [smiley=huh.gif] I don't have migraines but I get Clusters. I then thought this is a great time to get the good Doc up to speed with Clusters and the difference and misdiagnosis of Migraine sufferers & Cluster sufferers & vice versa. You would've thought I just kicked the Good Doc's dog, with the look he was giving me. Right away I knew he could care less. So...anyhoo the procedure is over and he says..."Jim, the study looks great & your well on your way to complete recovery...and good luck with those migraines." [smiley=bash.gif]

All this from a neurologist that should be "up" on the differences between a Migraine sufferer and a Cluster sufferer. His thinking probably was just write triptans for both. I'm so glad I have a primary care Doc who knows what I've tried and what works for me and what doesn't...
Title: Re: Morbid curiosity.(The great pain debate)
Post by E-Double on Sep 23rd, 2005, 7:04am
Because of this place I was finally diagnosed properly with CH.

I also learned that different things occur in my F'ed up head.

I hate having multiple HA (diagnosed Cluster, icepicks & occasional migraine)

Christened the house yesterday.......Cluster doozy in front of my mom.

Killed it then wammo.....migraine......with nausea.  
Had it.....for 5.5 hrs.... took half a trex shot.

Tension HA

Icepics

Party in my skull.

Fucking stop!!!!!!!!

Now the morning comes and back to Cluster.

Have a good day!
Title: Re: Morbid curiosity.(The great pain debate)
Post by nani on Sep 23rd, 2005, 7:24am

on 09/23/05 at 07:04:11, E-Double wrote:
Christened the house yesterday.......Cluster doozy in front of my mom.
Killed it then wammo.....migraine......with nausea.  
Had it.....for 5.5 hrs.... took half a trex shot.
Tension HA
Icepics
Party in my skull.
Fucking stop!!!!!!!!
Now the morning comes and back to Cluster.


:'(     [smiley=hug.gif]
Congrats on the christening!!  :-*
love you, nani
Title: Re: Morbid curiosity.(The great pain debate)
Post by ozzy on Sep 23rd, 2005, 8:22am

on 09/23/05 at 07:04:11, E-Double wrote:
Because of this place I was finally diagnosed properly with CH.

I also learned that different things occur in my F'ed up head.

I hate having multiple HA (diagnosed Cluster, icepicks & occasional migraine)

Christened the house yesterday.......Cluster doozy in front of my mom.

Killed it then wammo.....migraine......with nausea.  
Had it.....for 5.5 hrs.... took half a trex shot.

Tension HA

Icepics

Party in my skull.

Fucking stop!!!!!!!!

Now the morning comes and back to Cluster.

Have a good day!



Way to pop the cherry!

I try to at least have one cluster in every room after I move in...oh, wait, not cluster, I meant   ;;D




Ozzy
Title: Re: Morbid curiosity.(The great pain debate)
Post by ghost62 on Sep 23rd, 2005, 8:29am
Ozzy dont forget every seat of a new car too. ;;D :o
Title: Re: Morbid curiosity.(The great pain debate)
Post by lionsound on Sep 23rd, 2005, 8:38am


on 09/23/05 at 08:22:35, ozzy wrote:
Way to pop the cherry!
I try to at least have one cluster in every room after I move in...oh, wait, not cluster, I meant   ;;D
Ozzy



[smiley=laugh.gif]

Ozzy, I told him the same thing LMAO!!!!  

[smiley=hug.gif]'s,  E!
Title: Re: Morbid curiosity.(The great pain debate)
Post by lionsound on Sep 23rd, 2005, 8:40am
I tried getting out of having clusters..I really tried.
I asked my doc specifically if I had them or not because I know I don't get them in typical clusters and they and my migraines get all mixed up and it can be very hard to tell what's going on. I have had some clearly by themselves. I get ice picks too.

The answer was "yes" by the way. You all are stuck with me.;;D

Is one person's migraine another's shadow? or one's shadow really a migraine? Like some have said, it is very hard to tell when we don't live in each others skulls.

this is what I know about me....I've had HA's all my life and nothing has helped. Since I've been diagnosed with clusters and treated properly for the clusters a lot of my "past diagnosed migraines" have gone away or have been aborted. If I look back in my pre-diagnosis journals now I can easily pick out the clusters because I wrote down everything. eye tearing, drippy nose...insane pain...I even drew a picture of a screw being slammed into my eye with a screw driver that was being whacked by a hammer. that's no migraine.

I can see how things can be misdiagnosed either way and I think that we need to make sure we are being listened to and if not, find the doc who does. One doc  told me he couldn't help me any more, but he would see what he could do. he swore I didn't have clusters even after I explained an ER doc and my husband witnessed an attack. I never went back. Doc's who listen are more likely to catch what we are saying and hence a better diagnosis or at least pointing us to the right specialist if they don't know.

What ever the party in your noggin today...PF wishes for all!!!
-lionsound
Title: Re: Morbid curiosity.(The great pain debate)
Post by thomas on Sep 23rd, 2005, 8:56am

on 09/23/05 at 08:40:28, lionsound wrote:
I can see how things can be misdiagnosed either way and I think that we need to make sure we are being listened to and if not, find the doc who does. One doc  told me he couldn't help me any more, but he would see what he could do. he swore I didn't have clusters even after I explained an ER doc and my husband witnessed an attack. I never went back. Doc's who listen are more likely to catch what we are saying and hence a better diagnosis or at least pointing us to the right specialist if they don't know.

Alright there we go, that is what I am talking about.   You've got a good head on your shoulders, Rori.  Even if it gets rambuncious at times.  ;)

Edit to add - It is OUR responsibility to research our own conditions in order to help our docs with diagnosis and or treatment options.
Title: Re: Morbid curiosity.(The great pain debate)
Post by Margi on Sep 23rd, 2005, 9:01am
I apologize, Jimi - see, you didn't give all those details in your first post and I honestly did interpret it as a trivializing of migraine pain and all the little extra goodies that come with it.

My bad.
Title: Re: Morbid curiosity.(The great pain debate)
Post by Jill on Sep 23rd, 2005, 9:58am
Misdiagnosed? Still happens even after many doctors confirm that I have CH..  ::) I think that alot of doctors need a better education about CH like the difference between them and migraines. And they need to be updated that women DO get Clusters!

I have had migraines since I was young and the CH started when I was in college, on my third year of them now and chronic. They both suck and they both hurt like.. well you know... but there is a difference despite what some docs say. My primary told me that migraines and CH were the same pain but that CH came for a few weeks and then go away for awhile... of course I educated him and he changed his mind towards the end of that appt..::)!A migraine and CH at the same time... no words that I can use to explain that one. :-/

Anyways, I have been diagnosed with CH by some good doctors like the doctors at Jefferson and Dr. Kudrow in California as well as John Hopkins and some military docs. This diagnosis didnt come instantly though as my primary doctor said that it was my sinuses at first... I think almost everyone has faced this part.

What gets me is that no matter how many doctors have diagnosed me, there are some that just dont want to listen. Like the one that I saw here in Texas when we first moved that said that I cant have CH because women DONT get CH and that because of that he wasnt going to do a follow up appointment. He said that he had been a neuro for over twenty five years and sees most of the headache patients in the area and he had never seen a female with CH - what! [smiley=huh.gif] Personally, I dont think that he is as good as he thinks...

And this will get women that do have CH, had my new neuro yesterday that said, again, that women dont get CH but rather they get CPH. Of course, I reminded him of the difference between the two and that mine didnt fit CPH and that the indocin, which I tried twice, didnt work... he didnt know what to say. And then I tried to inform him that the latest research that Dr. Rosen mentioned at the convention said that the statistics are showing more women being diagnosed.... He didnt want to listen to that either... why do neuros always think they know it all?

Sorry, rambling now... frustration from neuros dismissing me because I am a woman...

So.. whether migraines, CH or tension headaches... all head pain sucks. And I think that the difference between us all is how we deal with it and the level of pain that we can tolerate (cant think of a better word). What is a migraine or CH that will knock me off of my feet may just be a bother to someone else... No matter what, we all fight the same battlle and it stinks!

Just my thoughts...

Jill
Title: Re: Morbid curiosity.(The great pain debate)
Post by cootie on Sep 23rd, 2005, 10:27am
I get that THUD crap in my head too Carl......bout black out......mine is usually at the bottom near the sides......got to thinkin bout it and it must be about the same thing you mention'd !! It'S NASTY loud too with instant hot pain. Last time it happen'd I was talkin to someone and turned my head....I swear they could of heard it. Not a crack or pop....it is a downrite THUD as if someone slammed you with a baseball bat. Stops me dead in my tracks too and I sit dazed a bit then try to 'carry on'. People think yer a wuss if ya mention it cuz they don't have a clue what happen'd. I tore sum muscles fibers off last time and they waded up in the middle of my neck leaveing this lumps start growin at the skull base they snapped off of that got bigger as I sat there. My neck and shouders and back are TIGHT as a drum from constant spasm. Just thought I'd add that.......sorry I digress'd here. Pain is not my gain Pam  
Title: Re: Morbid curiosity.(The great pain debate)
Post by rickyshot on Sep 23rd, 2005, 1:11pm
I suffer both CH and complicated migraines, yes that is the diagnosis by more than one neuro in my day. And the migraines have made my life the living hell almost as much as CH. I have been hemiplegic (that means paralyzed on one side and loss of speech and slurred speech) to the point that they always have to rule out a stroke. They suspect I had a TIA caused from the migraines (too many spasms in the head??). There are studies showing how migraines are not just bad headaches or benign for can for many people lead to stroke, TIA. It like CH is certainly a neurological event going on with a myriad of symptoms some bizaare. The doc says although he has seen others like me before, I am one of the worst migraineurs he knows. And it is really fun to have those combine with CH. Shit I don't know if I am coming or going. I don't know if the migraine leads to an episode of CH or the CH attacks lead to the migraines at times.

Anyhow PAIN is PAIN and the sick sick feeling you get even with a shadow is no fun at all.
Title: Re: Morbid curiosity.(The great pain debate)
Post by Jonny on Sep 23rd, 2005, 6:31pm

on 09/23/05 at 08:56:55, thomas wrote:
Edit to add - It is OUR responsibility to research our own conditions in order to help our docs with diagnosis and or treatment options.


Thats a sad statement, not what you said but what they charge us for them not to know. A dude that works on cars is expensive and usually figures out the problem with your car. Docs will schedule another appointment and suck more money out of you....In the end they are wrong lots of times with the diagnosis.

There is not many occupations you can get paid big bucks for being wrong some of the time.....anywhere else your ass would be fired!
Title: Re: Morbid curiosity.(The great pain debate)
Post by JDH on Sep 23rd, 2005, 7:22pm

on 09/23/05 at 18:31:16, Jonny wrote:
There is not many occupations you can get paid big bucks for being wrong some of the time.....anywhere else your ass would be fired!


Weatherforecasters Weatherguessers come to mind.

Jim
Title: Re: Morbid curiosity.(The great pain debate)
Post by Carl_D on Sep 24th, 2005, 2:10am

on 09/23/05 at 10:27:05, cootie wrote:
I get that THUD crap in my head too Carl......bout black out......mine is usually at the bottom near the sides......got to thinkin bout it and it must be about the same thing you mention'd !! It'S NASTY loud too with instant hot pain. Last time it happen'd I was talkin to someone and turned my head....I swear they could of heard it. Not a crack or pop....it is a downrite THUD as if someone slammed you with a baseball bat. Stops me dead in my tracks too and I sit dazed a bit then try to 'carry on'. People think yer a wuss if ya mention it cuz they don't have a clue what happen'd. I tore sum muscles fibers off last time and they waded up in the middle of my neck leaveing this lumps start growin at the skull base they snapped off of that got bigger as I sat there. My neck and shouders and back are TIGHT as a drum from constant spasm. Just thought I'd add that.......sorry I digress'd here. Pain is not my gain Pam  


HOLY SHIT COOTS! You are the FIRST PERSON I have found that knows what I'm talking about with that. I bent over one day at my old bands studio and the next thing I know "WHACK" and I was looking up from the floor. At first I thought somebody hit me with something, and my drummer and bass player were laughing at me. My neck and shoulder muscles stay wound tight as an idiots watch constant, and even had massage therapy for awhile, but have some permanent knots they can't get out. Sorry your having to deal with that shit too.  [smiley=hug.gif]

Peace,
Mack D


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