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Title: WHAT CAUSES THIS? Post by baseball_dad on Sep 23rd, 2003, 2:09pm HELLO FOLKS,AFTER YEARS OF THINKING I HAD SINUS INFECTIONS I WAS TOLD I HAD CLUSTER MIGRAINES,,,,,THE ALLERGIST READ MY SYPTOMS WHILE I NODDED MY HEAD TO EVERY SYPTOM HE READ...AMAZING...BUT WHY DO THEY TEND TO COME IN THE FALL? 2 YEARS SINCE MY LAST BOUT,,,BUT WHAT CAUSES THIS PAIN?..MY NOSE HURTS MY EARS POP,,WHEN I BREATHE IT FEELS LIKE FIRE RUNNING THRU MY NOSTRILS..DOC PRESCRIBED PREDISONE AND VIOX AND MAXALT?..WORKED FOR THE FIRST WEEK,,,BUT PROBABLY GAINED 8 POUNDS.....GEESH...EVERY NIGHT NOW AT ABOUT 12 MID NIGHT BAM...I'M UP...TRIED THE WATER DEAL LAST NIGHT AND YOU KNOW WHAT? NO PAIN,,,BUT I WAS UP EVERY TWO HOURS PEE-ING...STILL NO REST...I AM STARTING TO TAKE FISH OIL CO ENZYME Q 10..DHEA MAGNESIUM AND NIACIN...THE MAXALTS WORK BUT MAKE ME DIZZY...I FEEL AS IF MY EQUILIBRIUM IS OFF....I'M GLAD I FOUND THIS SIGHT,,,NOW I CAN SHOW MY WIFE I'M NOT CRAZY.......DO YOU THINK THIS HEADACHES CAN COME FROM SOM KIND OF CHEMIOCAL IMBALANCE? BUT THEN WHY ALL OF A SUDDEN? NOTHING MAKES SENSE. |
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Title: Re: WHAT CAUSES THIS? Post by ClusterChuck on Sep 23rd, 2003, 2:23pm Sorry you had to find us, but am glad you did. Welcome aboard! on 09/23/03 at 14:09:10, baseball_dad wrote:
You're not crazy? I thought that was one of the symptoms of this thing? on 09/23/03 at 14:09:10, baseball_dad wrote:
If you could answer those questions, you would become a rich man! The best I can tell you is read read read ... There is a tremendous amount of information on this site, and at the OUCH website (yellow button on the left). While you are there, why not join it, too? Unfortunately, this afliction is so rare that most of the doctors do not know that much about it, if anything. We find that we have to do the research, and then present it to our doctors. I question where you got the name. Is that what the doctor called it? You are combining two very different illnesses there. There are cluster headaches, and there are migraines. They are treated differently. There are some who suffer from both. Cluster headaches are NOT migraines, just as migraines are NOT cluster headaches. Again, welcome aboard, and keep us up to date. We DO care! Chuck |
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Title: Re: WHAT CAUSES THIS? Post by CathiP on Sep 23rd, 2003, 2:34pm Hello, baseball dad- Much as it pains me, I must concur with Chuckleputz.... Read the topics found at the left.....tons of info.....ask any questions, it is on a whole a very helpful, knowlegeable group. Show your wife the supporters' portion of the MB....it WILL help. Your best move BY FAR...is that you have arrived here. Please keep us posted......oh, and before Cootie gets here.....GRAB AN OAR....and join in rowing.... Welcome, and be PF! Cathi 8) |
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Title: Re: WHAT CAUSES THIS? Post by ClusterChuck on Sep 23rd, 2003, 2:36pm For once in your life, Cathi, try and be nice! Do you want to scare him away so soon? And that is MISTER Chuckleputz, to you! |
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Title: Re: WHAT CAUSES THIS? Post by taraann on Sep 23rd, 2003, 2:45pm Welcome aboard and I really hope you find some painfree time soon. And as was said, read, read, and read some more. on 09/23/03 at 14:23:43, ClusterChuck wrote:
The neuro that origionally diagnosed me said I have "cluster migraines" he explained that I suffer from cluster headaches and migraine headaches...I think its just another name for it (like histamine headaches, suicide headaches, etc) |
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Title: Re: WHAT CAUSES THIS? Post by Cerberus on Sep 23rd, 2003, 2:49pm Howdy Baseball Dad, Unfortunately,much of what you are and going to experience is not going to make alot of sense. There is going to be a general consensus to have you read all the info you gan get your hands on. (Look to the left for starters). Send your Wife to the Message board and have her read the info as well, it will help her equally to understand. If the meds you are using aren't working for you there are plenty more to try, however, almost all of them are going to make you feel "dizzy" or even worse for some of them, so get used to the idea. It sucks but a few side effects to aleviate pain is a fair trade, in time I think you'll agree. be prepared to throw out all notions of machismo, cause the beast don't care how much of a man you think you are, he's gonna take a bite outta your head anyway. Finally.......Welcome, feel free to use this Message board to vent, ask questions, and even ask for help, many here are very willing to lend a hand, I credit them for saving my life and sanity at times. The best advice I have ever gotten was to try Oxygen it is very effective for many here, and I could not survive my Cycle without it........If you havent asked the doc yet please do so ASAP. 15Lpm seems to be the best for me. Hope you find PF time soon, Ramon |
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Title: Re: WHAT CAUSES THIS? Post by Cooked Brain on Sep 23rd, 2003, 2:59pm it's caused by the brainchemicals melatonin, serotonin and testosteron |
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Title: Re: WHAT CAUSES THIS? Post by don on Sep 23rd, 2003, 3:09pm According to the best theories available, CH is caused by a deformity and/or dysfunction of the hypothalmus gland. There is increased activity in this area of the brain when a sufferer is under attack. |
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Title: Re: WHAT CAUSES THIS? Post by vig on Sep 23rd, 2003, 3:18pm it's caused by the brainchemicals melatonin, serotonin and testosteron (PSST. don't tell the girls about the testosterone.) |
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Title: Re: WHAT CAUSES THIS? Post by Big_Dan on Sep 23rd, 2003, 3:23pm on 09/23/03 at 14:59:08, Cooked Brain wrote:
Quote:
... yur brain is tryin' ta lube them thar gears with 5w30 'stead of 10w40.... and it caused your shit to cease up when it got too hot fer it.... -Big Dan |
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Title: Re: WHAT CAUSES THIS? Post by BarbaraD on Sep 23rd, 2003, 3:35pm Don't worry about what the doc calls them. When my doc was in med school they called them histamine headaches and he still does. I just don't pay attention to him - he knows the difference and so do I. We're both "old" so we just don't pay attention to each other. My neuro knows the difference and keeps up on the latest treatments and Dr. Goalsby's work. He has miagraines so he's interested in anything to do with headaches. He even visits us here in Clusterville when he gets a chance. Some of us suffer from BOTH CH and miagaines - that's the pitts! I have to wait till I'm at about a 5 to even see which kind I'm having to figure out what to take. Of course I HOPE it's the migraine cause that's easier to get rid of, but this week - no such luck. Just remember that when we say, "I know how you feel" we DO KNOW HOW YOU FEEL. We're the best support group for CH in the world. REad, vent and welcome to Clusterville. Hugs BD |
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Title: Re: WHAT CAUSES THIS? Post by Mike-Y on Sep 23rd, 2003, 4:04pm on 09/23/03 at 14:09:10, baseball_dad wrote:
That's a question i've been asking my Doc for 5 years now , but no one seems to know . Does anyone know if a different type of treatment other than medication exists ? |
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Title: Re: WHAT CAUSES THIS? Post by Tom K on Sep 23rd, 2003, 6:31pm I am by no means a doc but I have to share something that I found when I got an MRI last year. I got the pleasure (Ha) of having it during a CH. What fun that was. What the MRI showed was that one of the veins in my head was swollen as big as all get out. I don't know if this is what causes the pain but it pretty much freaked me out! My (old) neuro said that yeah, that is what is causing you pain and (ready for this...the reason he is my old neuro) one day, when you get older that vein won't be as flexible. It will swell one day, like it is now and it will burst, causing you to have a major brain hemeroage(sic) and you will die. So your CH will kill you or you will stroke out from all the stress the vein is going through now. Nice, eh? 20 mins later I'm on the phone with my gp to find a new neuro. The new one is great, no problems with him so far. Don't get me wrong, I can understand that this may happen, but don't tell me that, with my wife present and being pregnant. She turned white as a sheet and I thought she was going to pass out right there and then. Sorry to be so long winded, but was thinking about how much an ass that guy was and just had to go off. |
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Title: Re: WHAT CAUSES THIS? Post by jonny on Sep 23rd, 2003, 6:56pm on 09/23/03 at 15:09:10, don wrote:
Hmmmmmm, so thats why its always hard ;D The brain I mean...ya, thats it..the brain ;D .......................jonny |
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Title: Re: WHAT CAUSES THIS? Post by Prense on Sep 23rd, 2003, 6:59pm on 09/23/03 at 14:23:43, ClusterChuck wrote:
This is a VERY important lesson that you can decide to learn right away or after 6 months (or longer) of dealing with docs and meds that don't work. As for the "cluster migraine"...That is what the first GP I saw diagnosed me with. Those poor saps get so confused when you put them on the spot and they have to go read about the ailment real quick. ;D Maxalt never touched mine, but did make me a bit dizzy and tired at first. After further use, those symptoms stopped occuring. Welcome aboard! Chris |
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Title: Re: WHAT CAUSES THIS? Post by Miss_Deleny on Sep 23rd, 2003, 6:59pm Welcome Baseball_dad! Sorry you had to hunt us up but sure glad you found us :) Everyone before me has already told you to read up on everything that you can on the left .. so I won't tell ya that. They also told you to have your wife come here and read as well as go to the support section .. so I won't tell ya that either. What I will tell you is ..... WELCOME! Wishing you PFDaN's, ~April~ |
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Title: Re: WHAT CAUSES THIS? Post by Hooter on Sep 23rd, 2003, 7:05pm Firstly, welcome Baseball Dad, you are in the right place and there is load of info here, but sadly not the answer to your question, as no-one knows yet! Secondly, there is so much wrong stuff posted on this thread already, Ueli , you would have a field day with it! Cluster migraines is the old name for CH. As Barbara says, there are loads of outdated and wrong names for the condition, but Cluster Migraines is one of the most useless ones (causes huge confusion) and one of the oldest wrong ones. Is your doctor a pensioner? Chuck. Sorry you are wrong. The condition is not actually rare at all. CONSERVATIVE estimates out it at 0.1% of the population. This is huge numbers. This % is also likely to be revised as they are realising that misdiagnosis (particularly women being diagnosed as migraine sufferers) has warped both the total population figure and the male/female %. Cooked Brain: Sorry, that may be wrong too. There is still no proof which bits are cause and which bits are effect. There are certainly abnormalities of brain chemicals and maybe hormones, there is certainly an abnormal blood vessel activity in the brain, and there is certainly some hypothalamus abnormality. But what causes CH, they really don't know. I'll go away now Wendy |
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Title: Re: WHAT CAUSES THIS? Post by Prense on Sep 23rd, 2003, 7:11pm on 09/23/03 at 19:05:30, Hooter wrote:
Compared to flu, broken arms and all those other wonderful issues GPs treat, .1% is rare as hell. I do agree that the numbers are no where near accurate due to misdiagnosis, people being reluctant to even go to a doc, etc. Rare or not...the point Chuck made is that docs know little to notta about CH or how to treat it. Just an opinion. Chris |
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Title: Re: WHAT CAUSES THIS? Post by jonny on Sep 23rd, 2003, 7:15pm on 09/23/03 at 19:05:30, Hooter wrote:
So theres no such thing as Cluster/Migraines? Someone cant have both? Hmmmmmm.....I doubt that!! (They can have both) ...................................jonny |
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Title: Re: WHAT CAUSES THIS? Post by Hooter on Sep 23rd, 2003, 7:23pm Jonny You trying to wind me and Ree up aren't you! :o Cluster migraines was the name for CH, not a description of the poor people who get both (me being one) W |
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Title: Re: WHAT CAUSES THIS? Post by Charlie on Sep 23rd, 2003, 7:47pm Welcome to the board and from what I understand, many think it has something to do with the hypothalamus. Perhaps something shuts down or begins when these things hit. It has a vascular component. Things that affect circulation are certainly in play. We just don't know exactly. Here are two helpful links: The first is to a description of this disorder that does a wonderful job explaining to families, friends and employers what cluster headaches are and that they have little to do with what is thought of as a “headache.” The second is to a technique learned from a neurologist that works well for me and others. http://www.ouch-uk.org/ch/note_colleagues.cfm http://www.netsync.net/users/charlies/ Stick around and let us know how you're doing. Charlie |
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