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Kevin_M
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Re: CH history, genetic link and nicotine
« Reply #100 on: May 8th, 2008, 9:11pm »
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on May 8th, 2008, 8:46pm, Annette wrote:
studies that show CH in a person causes that person to become MORE addicted to whatever or specifically nicotine, than otherwise normally, it would be wonderful and it would shed a lot more light on the topic.

 
Your own little survey of 25 popular website forums to see how many posters have thousands of posts like this site does might put us in perspective.  Wink  Not to mention the number of guests here at anytime.
 
I've wouldn't know because I can't visit any other site, the addiction here doesn't allow time for another.   Smiley
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Re: CH history, genetic link and nicotine
« Reply #101 on: May 8th, 2008, 10:39pm »
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on May 8th, 2008, 9:11pm, Kevin_M wrote:

 
Your own little survey of 25 popular website forums to see how many posters have thousands of posts like this site does might put us in perspective.  Wink  Not to mention the number of guests here at anytime.
 
I've wouldn't know because I can't visit any other site, the addiction here doesn't allow time for another.   Smiley

 
 
Good point Kevin !  
 
I come here almost daily for 2 years now, does that qualify me a being addicted to this place ? I also go to work almost daily for 12 years now, I must be addicted to work too..... Uhmmm... somehow that last statement didnt sound right to me !  Tongue
 
Just kidding! There are heaps of websites out there that have much much higher number of members and guests and number of posts than we do here.  
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Re: CH history, genetic link and nicotine
« Reply #102 on: May 9th, 2008, 6:22am »
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on May 8th, 2008, 10:39pm, Annette wrote:
There are heaps of websites out there that have much much higher number of members and guests and number of posts than we do here.

 
Oh wow, I didn't know.  
 
I've noticed a cell phone addiction being popular now, I mean where people do not go anywhere without it and walk around plugged in with ear attachments like cyborgs.  Reminds me of this idea:
 

 
 
 
 
 
 
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Re: CH history, genetic link and nicotine
« Reply #103 on: May 9th, 2008, 9:29am »
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on May 8th, 2008, 2:37am, Annette wrote:

When I read that I realised that if I just posted the studies without any comment or interpretation I most probably would get similar responses, people would say " interesting" and then not think twice about it. That was not the response I was hoping for.  

 
The response you were hoping for?
 
Annette, this is at the core of what takes you into the zone of having people begin to question your motivations. You got intelligent feedback, had excellent discussions from those with information that both complemented and at times refuted your theories, yet you don't seem to be able to let it go at that. I've PM'd you before on this same subject, wondering why, at times, you can't let well enough alone.
 
This was a great thread. And then you started quoting people from a thread three years old, more or less denigrating what were probably just nice comments to Flo about the work he'd done. Jonathan's research threads were often above a lot of our heads - but he kept at it and even created his own website that compiled this information. I don't think he put them up and waited outside the trap for the "response". He contributed them to a group, some of which would understand, others may not, but may, by virtue of the thread, begin to absorb the information from other's input.
 
Step back. Take a breather from this thread. Take a good look at that compulsion to respond to every single piece of data that appears on the thread you started.
 
Sheesh.
 
 
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Re: CH history, genetic link and nicotine
« Reply #104 on: May 9th, 2008, 1:34pm »
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Annette,
 
Interesting theory.  But, 2 things...I developed CH (at age 14) before I ever touched a cigarette or was in any environment with second hand smoke (I was lucky for that).  I did smoke as a young adult--clusters continued.  I did then quit smoking completely--clusters continued.  I mentioned this to a neurologist and he said "Doesn't surprise me.  I would not have expected them to stop.  It is not good to smoke but it makes no difference with CH."  So.....from (only from my personal experience) smoking or not smoking it really does make no difference for me.  The headaches continue in the same way.
As far as the hypothalamus being altered over the course of several generations, I think that is highly dubious.  For an actual part of the brain to change over only a few generations...I really doubt it.  Although, I do think it is possible that some aspect of modern life contributes to CH.  Perhaps electric light, which contributes in many ways to altering sleep/wake cycles.
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Re: CH history, genetic link and nicotine
« Reply #105 on: May 9th, 2008, 1:42pm »
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My CH started when I was 10 yrs old and it had nothing to do with smoking at all.  However, I find it interesting how desperately I crave a ciggie when the hit is gone.
 
Also, my grandmother has CH and she has never, ever smoked.  Oh I know, it isn't hereditary either.
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Re: CH history, genetic link and nicotine
« Reply #106 on: May 9th, 2008, 1:48pm »
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One more comment wanted to add:  As someone who has had CH for 20yrs., I would say I understand why people would think that smoking was perhaps a cause or an exacerbator of CH--smoking can cause regular old headaches or make a regular old headache worse--but unfortunately, and perhaps counterintuitively, I believe it really does not cause or influence CH.  Alcohol, on the other hand--that is a different story--as alcohol is very detrimental to the sleep/wake cycle and also a powerful depressant--2 things not good for CH.  But from my personal experience, I developed CH before I ever touched nicotine, alcohol or coffee, so....was it the early head injury, the longlasting case of mononucleosis, or stress?  Won't ever know, but I don't drink, I don't think alcohol helps--although I definitely don't think a drink here or there will have any negative effect.
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Re: CH history, genetic link and nicotine
« Reply #107 on: May 9th, 2008, 1:53pm »
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Also, noticed a few people in this thread talking about how CHers more prone to addictions.  If that's true, then start looking at conditions which often fuel addiction such as depression and anxiety, because if anything it would be imbalances such as those that fuel the addictions not "just being a CHer".  My 2 cents.
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Re: CH history, genetic link and nicotine
« Reply #108 on: May 9th, 2008, 1:57pm »
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on May 9th, 2008, 1:53pm, starlight wrote:
Also, noticed a few people in this thread talking about how CHers more prone to addictions.  If that's true, then start looking at conditions which often fuel addiction such as depression and anxiety, because if anything it would be imbalances such as those that fuel the addictions not "just being a CHer".  My 2 cents.

 
 
I agree with this.  If CHers are more prone to addictions, then why aren't we addicted to the opiates they attempt to give us when we are first getting diagnosed.  Those narcotics can make you feel great, even when you know you can rebound.  But we don't get addicted.
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Re: CH history, genetic link and nicotine
« Reply #109 on: May 9th, 2008, 2:05pm »
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Annette,
 
Sorry--I am reading through this thread backwards.  I read where you wrote to Paul98 that Kip 10s are rare in response to his suggesting that in the past some may have thought CHers were possessed b/c of headbanging behavior.  For me, Kip 10s are not rare--I would describe every hit for many cycles previous that has broken through the O2 as being a Kip 8-10 and I can sense that the ones that thankfully do not break through which is the majority would be of the same caliber.  Not saying that to elicity sympathy as my headaches when in cycle have been gotten under control, but just to clarify, CH is friggin' painful!!!
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Re: CH history, genetic link and nicotine
« Reply #110 on: May 9th, 2008, 2:36pm »
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Annette,
 
I apologize profusely for posting so many times in a row.  But you have me thinking about evolution here, and genetics.  Since you talked about CH not being mentioned in the literature before 1641, and hence that it must have emerged in modernity, I have a thought....could it be the other way around?  That CH did not emerge in modernity but perhaps was much more prevalent thousands and thousands and thousands of years ago and that only a few still carry the gene?  What if, say, in the times of cavemen, CH was not uncommon?  What if CH was some kind of seasonal signal, like, OK, the winter is coming, time to move and travel and seek shelter in a cave or something like that? I mean, I used to get CH on Nov. 9 of every year...which is truly astounding in a way, that type of regularity.  So, anyway, that is my thought.
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Re: CH history, genetic link and nicotine
« Reply #111 on: May 9th, 2008, 3:39pm »
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I dont think Annette is saying if you smoke you will get clusters.
I think she is saying the nicotine used by generations before us could have possibly "messed up" some receptor or nerve or something.  This "messed up" receptor could then be handed down in the genes.  
So, even at 10 years old, you might have inherited the genetics with this messed up receptor.
 
 
Is this sort of correct, Annette?  From a person like me with an IQ of 67?
 
Thanks,
Brian
 
 
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Re: CH history, genetic link and nicotine
« Reply #112 on: May 9th, 2008, 3:43pm »
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There are 6 review articles about cluster headache research in the April 2008 issue of  "Current Pain and Headache Reports":
 
http://www.current-reports.com/home_journal.cfm?JournalID=PA
 
No surprise, some of these articles focus on similar subjects as this thread does: Smoking, Endocrinology, orexin/hypocretin etc. Unfortunately these articles are not free and they are copyrighted, but perhaps some people have the chance to get a copy through a library or know somebody who owns a library or so.
 
Here is a free open access article entitled " The primary headaches: genetics, epigenetics and a behavioural genetic model":  
http://www.springerlink.com/content/388m81878hr18124/
 
Giving up smoking has helped some CH patients I know, (or at least they think so) and for some others it did not make a change, they think.  For myself I think I will not know if quitting helps unless I have tried it.
 
Giving up smoking did help some people near Leicester U.K. back in ye' good old eighties, they think?
 
Quote:


...
65 questionnaires were sent to subjects who had been diagnosed as having cluster headaches following a neurological consultation, enquiring about the duration of their symptoms, smoking history and any observed relationship between smoking habits and headaches.
 
From 65 questionnaires sent, 33 were returned competed and examined. 28 of these patients were male with a mean age of 38 years (range 16-71 years). there were only three nonsmokers.  
 
24 patients had smoked at least 20 cigarettes daily for more than 10 years. 3 patients had smoked 10-15 cigarettes daily for the same period and 3 patients were pipe smokers.
 
None related headaches with smoking.
 
10 patients stopped smoking after the diagnosis of cluster headaches had been made. 7 patients (all of whom had been heavy cigarette smokers), noted abolition or marked improvement of their headaches. Of the remaining 3 patients, only one had smoked 20 cigarettes or more daily.
 
Another 3 heavy smokers noted improvement in their headaches on reducing their consumption of cigarettes below 20 daily.
 
...
 
In the context of these suggestions the responses of our patients were of interest though the low return rate of questionnaires introduces the possibility of selection.
 
Source: Millac P, Akhtar N.: Cigarette smoking and cluster headaches. Headache. 1985 Jun; 25(4): 223. Letter. PMID 4019184.


 
 
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Re: CH history, genetic link and nicotine
« Reply #113 on: May 10th, 2008, 5:56am »
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The thing is - I've never smoked. Never. Not once.
 
My ex didn't smoke either and Jasper doesn't but it didn't stop him from being diagnosed with it at 3. No one has ever smoked in my house either. If my friends smoke, they go outside...
 
Who knows?!
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Re: CH history, genetic link and nicotine
« Reply #114 on: May 10th, 2008, 7:53am »
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Helen, I was hoping you would drop by this thread. I know they were doing some genetic testing for you and Jasper since he started from such a young age. Do you know if its the same gene they have found here?( the G allele for the Hypocretin receptor ) Or have they found something else ?
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Re: CH history, genetic link and nicotine
« Reply #115 on: May 10th, 2008, 9:13am »
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Annette in all honesty I can't remember now. We participated in 2005. The person doing the research is Professor Trembath at Leicester University here in the UK if that is any help.
 
I only posted my info as it had been raised earlier in the thread. I don't know enough one way or another about tobacco etc to know anything sensible to add! As a further aside though, my mothers family were poor. They couldn't have afforded to smoke even if they wanted to and my own mother didn't start smoking until after my youngest brother was born and my dad started after her (how daft were THEY?!) It was stress though as my brother was very sickly.
 
I had an uncle on my mothers side who had such terrible headaches he would go mad and have to be restrained. He died when he deliberately got in a car and drove it into a tree in one of these fits of pain induced madness. Was it CH? I'll never know for sure but I think so.
 
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Re: CH history, genetic link and nicotine
« Reply #116 on: May 10th, 2008, 9:23am »
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Professor Trembath's colleague (sorry – can't remember her name) presented an update on the genetic research at the last OUCH (UK) conference.  I think you were powdering your nose at the time limey-bird Wink
 
In summary, they're looking at loads of gene types (but it's very much like looking for a needle in a haystack) and they have yet to find anything conclusive.
 
For some strange reason, my blood sample was rejected Roll Eyes
 
-Lee
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Re: CH history, genetic link and nicotine
« Reply #117 on: May 10th, 2008, 11:11am »
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on May 10th, 2008, 9:23am, LeeS wrote:
Professor Trembath's colleague (sorry – can't remember her name) presented an update on the genetic research at the last OUCH (UK) conference.  I think you were powdering your nose at the time limey-bird Wink
 
-Lee

 
Au contraire numbnut - you obviously didn't come back from the bar in the break the year before because it was 2005 when she presented that oh gormless one and I know - because I spoke to her afterwards so there!  Tongue
 
You're alcohol sample was probably ejected for trace elements of blood my sweet.  Cool
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Re: CH history, genetic link and nicotine
« Reply #118 on: May 10th, 2008, 6:57pm »
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Thanks Helen and Lee ! I will go look for Prof Trembath's publication and see if there is anything interesting relating to CH genes.
 
Lee, would you have a transcript of what his colleague talked about last year? I know you said they havent found anything concrete, but at least was there any info on what they were looking at ? or looking for ? the hypothesis they were working on ?  
 
Thanks guys.  
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Re: CH history, genetic link and nicotine
« Reply #119 on: May 10th, 2008, 7:34pm »
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I have been enjoying this post and it has given me much to rhuminate upon.  
 
Looking back, I know my mother had devistating "migranins".  She told me that she would be in agony on the floor writhing in pain.  To this day I wonder if she had CH instead of migrain.  This was back in the 50's when CH was "non existant" in wonen.  I also know that my maternal grandfather had "headaches".......?  
 
I know that many genetic components of disease skip a generation, some don't.  My grandparents on both sides did not smoke.  My mother did not smoke.  my father smoked cigars to which ALL the family was exposed.
 
My thought is that some of the human (perhaps animal) population carries a mutation in a gene that predisposes us to CH.  Tobacco smoke has hordes of chemical compounds in it...........SO DOES SMOKE FROM A FIRE.  We came from living in caves, huts and close to fire and smoke for 50,000 years.  Tobacco has been around for a long time in the Americias.  More than 1,000 years.  
 
There are two things that have jumped out at me over the years....genetic link to (what was diagnosed as migrain) and head trauma.  
 
Unless tobacco can turn on genes in the gamates of parents (it is possible) than I would have to conclude we (the CH population) have a condition similar to epilepesy only very targeted to a specific (hypothalmus) region of the brain.  Perhaps a component in tobacco can turn this gene on in adults.  (or children) but my gut feeling is that it is similar to epilepesy.
 
-P.
 
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Re: CH history, genetic link and nicotine
« Reply #120 on: May 10th, 2008, 7:53pm »
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on May 10th, 2008, 7:34pm, Paul98 wrote:
We came from living in caves, huts and close to fire and smoke for 50,000 years.

Come now, Paul. We all know that the earth is only a little more than 6,000 years old. Wink
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Re: CH history, genetic link and nicotine
« Reply #121 on: May 10th, 2008, 8:02pm »
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on May 10th, 2008, 7:53pm, Brew wrote:

Come now, Paul. We all know that the earth is only a little more than 6,000 years old. Wink

 
Sorry brew, I was talking about the parrallel universe where  folks live hundreds or years.   Wink
 
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Re: CH history, genetic link and nicotine
« Reply #122 on: May 10th, 2008, 9:46pm »
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It seems certain that there is a genetic component to CH. There may even more than 1 gene associated with CH, or at least there are more than 1 allele associated with CH.
 
This gene does not seem to be dominant or constantly active though due the fact that it seems to jump generations. Its possible that this gene gets passed on and then become activated some time along the line. What will activate this gene remains a mystery. It could be nicotine, it could be something else in the tobacco's myriads of chemicals, it could be diet, it could be stress or it could be trauma ?  
 
It would be very helpful to find out what can activate the gene as firstly we can prevent it from getting activated and secondly maybe then we can even do something to switch it off.  
 
I decided to look at nicotine and tobacco use as the hypocretin receptors gene is the only one confirmed so far to be strongly associated with CH and the fact that nicotine binds to this particular receptors, coupled with the observation that most CHers are heavy smokers, it just seems to be there must be some relevancy there between the 3 factors.  
 
On the other hand, CH maybe acquired too via head injury or other injuries to the hypothalamus. There had been case report where excessive emotional stress triggered a one off cycle of CH in some people and then nothing for up to 9 years afterwards.  
 
Are the ones with a genetic predisposition more likely to become chronic ? The fact that episodic can drink alcohol while in remission but doing so during a cycle would trigger a CH attack for sure is also interesting. Does that mean the gene can be temporarily switched off somehow ? Or is it more environmental like the variation in daylight due to seasonal change?  
 
I think this is why keeping a detailed headache diary is important , as it helps making any pattern more clearly visible.  
 
Please keep sharing your thoughts folks. Thank you very much  Smiley
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Re: CH history, genetic link and nicotine
« Reply #123 on: May 10th, 2008, 11:39pm »
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Just noticing that there is another thread on the med board on smoking so I will link it here
 
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1207935052
 
 
Its interesting that although many say stopping smoking does not seem to affect CH but one poster said when episodic cigarette smoke was a trigger and another said after quitting the number of kip10 decreased.
 
No one seems to have found that starting smoking helps CH in any way though. While with schizophrenics, smoking actually helps reducing some of their symptoms.  
 
Has anyone noticed whether smoking more or starting to smoke helps CH at all ? Pegg and George mentioned something about smoking after a hit can help with the "after burn" effect but has anyone noticed smoking helps with the overal intensity or frequency of hits ?  
 
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Re: CH history, genetic link and nicotine
« Reply #124 on: May 11th, 2008, 3:31am »
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Nicotine is the aide for CH. Not the cause.
 
Nicotine enables and empowers the bodies natural pain killing endorphins.
 
This is the cause and the reason many with CH seek solace in the drug and the smoke.
 
If nicotine were to be causal why do episodic smokers exist? Half life of the drug was I think 2 hours wouldnt all be hit every 2 hours or so like me forever?
 
Your cluster lump ideas do however make some sense when nicotine is researched as the drug tends to mass in that area. I have no cluster lump though.
 
 
I think its easy to attempt to relate all things as being the cause of CH. Wether it be a bump on the head or a slightly different meter reading from a Cheads hypothalmic energy readings. Because of the difficulty in understanding this and some other research goadsby et al has studied we hear of deformed hypothalumus when its only a signal and reception that was noted.
.  
Because a few individuals had shown a trite more gooey mass in the area of the brain that the hypothalumus lies near is not total and complete science as of yet either. This would not stand as fact but still theory. I believe there is some relationship but not yet proven beyond doubt.
 
No doubt for all of us a rythmic factor exists. Maybe its due to the fact the first mechanical ticking timepiece was built around the time CH was first suspected as a singular affliction. (this holds up for me better then smoking through the ages being the cause as before timepieces we used only solar observations). Them old clocks had those big old gongs going off every hour on the hour. That gives anyone a headache.
 
Going from memory I believe first mentions of CH like symptoms were given in and about 7000 BC by some egyptian dude. Mention has been made of similarities from the times of the ancient aztecs in stories told through the ages. Of course they may have smoked. (I have no citations)
 
I also think its wrong to heavily suggest nicotine is causal to CH by a scientist with no proof that would stand up in any modern scientific publication or circle. As noted from another thread praises are being sung for total hooey to this point. It wont be long before this whole board begins to believe only oxygen users and nonsmokers can find relief.
 
I do however think the discussion is good.
 
I think also further research will show a larger relationship with the respiratory system. In fact there is a school of thought out there that all headaches may begin there or in parts of the digestive system. If smoking were to be a cluster cause it may just be found there and make much more sense.  
.  
carry on.
 
I do not understand your relating of other mental illnesses is it just due to the fact that 90% of schizophrenics smoke. thus we also suffer dementia? Or is it something I missed.
 
Does your husband still smoke.
 
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