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Topic: BINGO! CH DISCOVERY! (Read 741 times) |
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Luciano
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BINGO! CH DISCOVERY!
« on: Oct 21st, 2004, 3:52am » |
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Hi y'all my friends!
Today is a great day for all of us.
An important discovery has been done by the Neurology department of Turin University Hospital (Molinette Hospital) about CH cause!
About 2 years ago a genetic research on CH began, many of us (OUCH-Italy) went to Turin to "give our blood".
The research target was to find a common genetical character in CH sufferers.
Yesterday we got the news something cool was found!
I wanted all of you to know it, even before I translate it in Italian.
I can't understand everything (too many medical terms in English...) but Dr. Rainero, wich is the doctor who worked in this research and he's the one who is in touch with Riccardo and OUCH-Italy, told us that it is a VERY IMPORTANT DISCOVERY and we could even have a direct benefit from it!
Here is the CH discovery communication:
<<CLICK HERE>>
PS
The news arrived just a day after Piera left us.... Thank you Piera, we know that's not just a coincidence! 
Luciano
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| « Last Edit: Oct 21st, 2004, 7:34am by Luciano » |
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BarbaraD
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Re: BINGO! CH DISCOVERY!
« Reply #1 on: Oct 21st, 2004, 5:59am » |
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I'm copying this and sending it to my neuro. Thanks for the information. This may be the first step into the cause and cure.
Hugs BD
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alleyoop
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Re: BINGO! CH DISCOVERY!
« Reply #2 on: Oct 21st, 2004, 7:01am » |
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Thanks Luciano,
I am very interested since I have two brothers diagnosed ECH. I realize this is in english and can not even fathom how hard it is for you to translate and understand the results of this study since I myself am having trouble understanding it. Maybe someone can translate all this to plain english.
.....................alley 
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Luciano
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Re: BINGO! CH DISCOVERY!
« Reply #3 on: Oct 21st, 2004, 7:42am » |
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A brief communication also here: http://www.neurology.org/cgi/content/abstract/63/7/1286
We are in contact with Dr. Rainero for more info on the subject... of course we'll inform you as soon as we'll have better and plain explanation of it.
Luciano.
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totka
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Re: BINGO! CH DISCOVERY!
« Reply #4 on: Oct 21st, 2004, 7:50am » |
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on Oct 21st, 2004, 5:59am, BarbaraD wrote:| I'm copying this and sending it to my neuro |
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Ditto. And sending to the Hungarian Headache Society too.
Thanks Bro!!!
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Woobie
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Re: BINGO! CH DISCOVERY!
« Reply #5 on: Oct 21st, 2004, 7:53am » |
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RIGHT ON!
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ZAIRA
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Re: BINGO! CH DISCOVERY!
« Reply #6 on: Oct 21st, 2004, 8:07am » |
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BINGO!!!
I have to thank Dott. Rainero and Dott. Pinessi and the University of Turin for the opportunity THEY gave us (OUCH Italia)!!! Many of us gave the blood for the research!!!
Luciano, I asked to Dott. Rainero to explain me the text and the results... I could not understand some words... he told me he will help me/us when he will come back from Toronto... read your e-mail!!
In the meantime my friend Steve (he is English) will translate... 
YAHOO!!!
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| « Last Edit: Oct 21st, 2004, 8:10am by ZAIRA » |
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catlind
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Re: BINGO! CH DISCOVERY!
« Reply #7 on: Oct 21st, 2004, 8:34am » |
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Fascinating stuff. This line in particular makes me want to try provigil even more:
"Hypo-cretin neurons play an important role in regulating the sleep-wake cycle and are involved in narcolepsy."
Provigil is a drug that was designed for narcolepsy and directly affects the hypothalamus, in particular the suprachiasmatic nucleus. I really think there's a chance for it to be beneficial for CH, but at present none of my docs know enough about it to let me try it. Perhaps I'll take a print out of this to them and see if I can get them to try. They are interested in it, as was Dr. Bigal of NECH, but he's not my doc so he can't say yes for me using it, and my other docs are not knowledgeable enough to feel comfortable doing a study patient with it. Maybe someone else out there can talk their neuro into trying it
Great stuff OUCH Italia! Glad to see the research moving forward in multiple areas
Cat
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Woobie
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Re: BINGO! CH DISCOVERY!
« Reply #8 on: Oct 21st, 2004, 8:37am » |
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HOw interesting is that! Ramon had a sleep study done, and they said he has "hyper somnia".... apparently close to narcolepsy - where his brain just doesn't ever want to be awake.
He was on Provigil for a while, but it made him sick. They switched him to adderall........ and it's working.
No Clusters either...........as a matter of fact - he's "skipped" three cycles............
WOW
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| « Last Edit: Oct 21st, 2004, 9:03am by Woobie » |
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Karla
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Re: BINGO! CH DISCOVERY!
« Reply #9 on: Oct 21st, 2004, 8:37am » |
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Thanks for your donations of blood to make this discovery possible and thank you for translatting it as soon as you can.
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Karla
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sandie99
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Re: BINGO! CH DISCOVERY!
« Reply #10 on: Oct 21st, 2004, 9:14am » |
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I copied it. Thank you so much for letting us know!
Best wishes & PFdays,
sandie99
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Bob P
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Re: BINGO! CH DISCOVERY!
« Reply #12 on: Oct 21st, 2004, 9:48am » |
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Bravisimo!
Well done OUCH-Italia!
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Jayne
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Re: BINGO! CH DISCOVERY!
« Reply #13 on: Oct 21st, 2004, 10:33am » |
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would someone be a sweetheart and explain this in Jayhmens terms.....*twirling my hair*
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ZAIRA
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Re: BINGO! CH DISCOVERY!
« Reply #14 on: Oct 21st, 2004, 10:48am » |
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Today the most important newspaper here in Italy wrote about this research...
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JJA
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Re: BINGO! CH DISCOVERY!
« Reply #15 on: Oct 21st, 2004, 10:50am » |
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on Oct 21st, 2004, 7:01am, alleyoop wrote:| Maybe someone can translate all this to plain english |
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I will try. Ignoring all stuff that showed no significance, they looked at 2 "genes" (A and G) that code for the Orexin receptor2. Humans have two sets of alleles to code for each gene (one from your mom and one from your dad). Most (94.5%) Cluster headache sufferers (In Northern Italy) have 2 copies of the G allele. The tricky part is that most (77.3%) "normal" people also have two copies of the G allele. So, having two copies of the G allele seems to correlate with CH, but does not seem to cause CH.
Does this help anyone?
Jesse
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| « Last Edit: Oct 21st, 2004, 10:53am by JJA » |
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alleyoop
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Re: BINGO! CH DISCOVERY!
« Reply #16 on: Oct 21st, 2004, 2:42pm » |
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on Oct 21st, 2004, 10:50am, JJA wrote:
I will try. Ignoring all stuff that showed no significance, they looked at 2 "genes" (A and G) that code for the Orexin receptor2. Humans have two sets of alleles to code for each gene (one from your mom and one from your dad). Most (94.5%) Cluster headache sufferers (In Northern Italy) have 2 copies of the G allele. The tricky part is that most (77.3%) "normal" people also have two copies of the G allele. So, having two copies of the G allele seems to correlate with CH, but does not seem to cause CH.
Does this help anyone?
Jesse
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No, not really. Guess I'm just genetically challenged.
................alley
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Killroy 2.0
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Re: BINGO! CH DISCOVERY!
« Reply #17 on: Oct 21st, 2004, 2:44pm » |
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on Oct 21st, 2004, 2:42pm, alleyoop wrote:
No, not really. Guess I'm just genetically challenged.
................alley
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Ain't that the truth!
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Charlie
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Re: BINGO! CH DISCOVERY!
« Reply #18 on: Oct 21st, 2004, 3:55pm » |
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Very nicely done kids. Very nice indeed.
I read Floridian's post too without learning much either. I'm not good at this stuff and hated biology.
Gonna keep trying though.
Thanks everybody and especially those funny Italians.
Charlie
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notseinfeld
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Re: BINGO! CH DISCOVERY!
« Reply #19 on: Oct 21st, 2004, 4:02pm » |
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Faxed a copy to my neurologist who'll exclaim "yeah, new toilet tissue" when he receives it after not reading it. Nahright, I'm working on getting a new one but for now I just love to hate this guy.
My interpretation of this excellent article is that for the first time they've located a direct 'cause' in the manifestation of CH located specifically in the genetic code. This is of particular interest because it means potentially that a rectifier can be introduced in our collective systems to counteract whatever's gone awry. It's better than trying to fix a misshapen or over/under sized hypothalamus.
Indeed this is a step in the right direction and thanks for the post Luciano.
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Cerberus
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Re: BINGO! CH DISCOVERY!
« Reply #20 on: Oct 21st, 2004, 4:15pm » |
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It is interesting (especially in my case) that this information should pop up at this particular time.
Woob's inferrence that I have skipped three cycles is a misnomer in fact I haven't "skipped" anything. Last year my cycle was extremely mild, I had not used one shot of trex last year and O2 aborted every single attack that I had. That said, the length of the cycle was shorter (possibly due to the use of Verapamil or just sheer luck).
This year (a few months ago) I began seeing a new Neuro, she insisted on a sleep study and determined that I have a condition similar to Narcolepsy called simply Hypersomnia. The test essentially said that 98% of the time during the study I was able to fall asleep within an average of 5 minutes, and almost always fell into R.E.M. stage as well and had NO symptoms of Apnea.
As a result of this test, I was given Provigil in the hopes that I would be more alert during the waking hours and the quality of sleep I got would leave me more refreshed when I awoke. The Provigil did its job I was awake however (also in my individual case) caused severe hypertension (rare) and I could not take it any longer. Instead...I have now been taking Adderal XR 15mg each morning for about two months now. The overall effect is the same as Provigil, however, I have yet to experience the hypertension that I had with the Provigil.
Does this mean that Adderal does the same thing? I can't say, I am not a doctor. The bottom line is this....
I SHOULD BE IN CYCLE AS WE SPEAK! and... THIS YEAR I HAVE YET TO HAVE A CH!
As we all know...this may just be a fluke, or some other anomaly cause by who knows what. And as per another thread (thanks Jayne) may have just "jinxed" myself by saying that. But, so far so good....
More as it develops....film @ 11
PF2U
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alleyoop
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Re: BINGO! CH DISCOVERY!
« Reply #21 on: Oct 21st, 2004, 4:31pm » |
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on Oct 21st, 2004, 4:02pm, notseinfeld wrote:
My interpretation of this excellent article is that for the first time they've located a direct 'cause' in the manifestation of CH located specifically in the genetic code. This is of particular interest because it means potentially that a rectifier can be introduced in our collective systems to counteract whatever's gone awry. It's better than trying to fix a misshapen or over/under sized hypothalamus. |
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Thanks nots, that was plain enough for even me to understand.
.......................alley
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JJA
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Re: BINGO! CH DISCOVERY!
« Reply #22 on: Oct 21st, 2004, 5:14pm » |
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on Oct 21st, 2004, 4:02pm, notseinfeld wrote:| My interpretation of this excellent article is that for the first time they've located a direct 'cause' in the manifestation of CH located specifically in the genetic code. Indeed this is a step in the right direction and thanks for the post Luciano. |
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I agree with you that this is a step in the right direction. I do not agree with you that they found a direct 'cause.' If anything, I would say they have shown it is probably more complicated than a "bad gene".
Jesse
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| « Last Edit: Oct 22nd, 2004, 6:41am by JJA » |
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alleyoop
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Re: BINGO! CH DISCOVERY!
« Reply #23 on: Oct 21st, 2004, 7:28pm » |
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on Oct 21st, 2004, 5:14pm, JJA wrote:
I agree with you that this is a step in the right direction. I do not agree with you that they found a direct 'cause.' If anything, I would say they have shown it is probably more complicated that a "bad gene".
Jesse
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Now I'm cornfused again.
...............alley 
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JJA
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Re: BINGO! CH DISCOVERY!
« Reply #24 on: Oct 21st, 2004, 8:22pm » |
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Sorry Alley,
Once again I must say,"It's complicated."
Jesse
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