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Erika
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ok first let me start by saying some of these questions are just because we are "why" kind of people. Although some are for the "what to do now purpose" he is SO FOCUSED on why this is happening to such a growing number of people so that maybe someone can make some sort of connection as to prevent it in the future - so I ask for him. His name is Bill, or William, and he has signed on the boards as blhughey
1. How many sufferers have had some sort of problem BEFORE your attacks started with you nose? whether it be surgery, broke nose, cosmetics, skin cancer, ANYTHING. Is there a connection? He has convinced himself that there is and his was 'caused' after a doctor shoved a needle up his nose since it was after that incident they started - though not immediately.
2. this 'cluster lump' - how small can it be? He found his during the very first headache and now tries to use it during a shadow to keep a hit from coming by applying pressure, but it never works. About a pencil eraser in size when inflamed and not there at all when he isn;t having an attach. Under the 'Left node' (if you call them that) at the base where his head meets his neck - those two bone like things, at the base of the left one - his attacks are on the left too - at least they always have been so far. He was happy to hear it could switch sides since maybe that would give his left eye a break for a while - I find this all so dang SAD!
3. Red bull - how much is too much?? can he OD on it?? It seemed to work last night - he also started magnesium, but that can't be in his system yet so we think it is the red bull. I can't imagine how someone figured out that it worked but am forever grateful to that person!!!! Lets hope it continues to work, but I think he is on the down cycle (I pray) so maybe it only works at light times and won't touch a 9 or 10 - we will see the hard way I suppose. How much magnesium? He is taking 500 in the mornign and 500 in the evening
4. Kudzu - just what exactly do you do with it? From a health food store or do you make some kind of tea with the wild stuff?
5. I read a lot about how this is related to hormones, etc. Is anyone keeping an orgasm diary - sorry if I am being to forward - to see if there is some sort of connection with decreased orgasms or increased orgasm, etc. I mean - during a bout there just isn't any energy or time for intimacy so in our case orgasm is decreased. Should we - or has anyone studied this - try to find time anyway just to see if the hormone released has an effect on these horrible 'head' aches?? Has this been discussed before? Does anyone else wonder?
6. LSD and shrooms?? All I am going to say is does anyone else find it sad that we need to become felons in order to have a PF normal life and then be too f'ed up to actually know it? We will keep this suggestion in the bottom drawer. Anyone have any research on Mary Jane and the effects, if any, for sufferers? I can't imagine that there would be one, but then I never would have guessed that Bull semen and bile would be a solution either.
thanks
becomming VERY EDUCATED and am forever in debted!
You are giving us our lives back!! I already love you all!! It is so sad that this information has been right under our nose the entire time and we are jsut now finding it!! But BETTER NOW than NEVER! So forward we go............................
and if we do get 'forward' - rest assured I will bring you all with us!!!
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Margi
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Re: questions
« Reply #1 on: May 3rd, 2007, 10:27am » |
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 ok....
1. Very common to blame the schnoz but...sadly, off base. Cluster is believed to be caused by a differently formed hypothalmus. For most people, it starts doing the chicken in late puberty - but we do have child sufferers here as well as "late onsetters".
2. Cluster lump. My hubby didn't even have one until about 15 years into his cycle. It started out pencil eraser size and is now small grape size. He is currently in remission but the lump remains. It used to go away between cycles.... 
3. Can't speak to Red Bull but I would think it would be the same as caffeine O/D. That's pretty high for magnesium - careful. Magnesium has a laxative effect. Your boy may be getting intimately familiar with la toilette. The highest my Mike ever went was 300 mg in the morning and he kept repeating "like poop through a goose!"
4. Kudzu is taken orally as pills (I believe?) and yes, health food store is supplier. Look for Kudzu root. Read up on interactions though...I believe it's not a good idea to combine it with any blood pressure reducers.
5. Very common to hear of decreased libido and sensation during cycle. For some, the increased blood flow and, therefore, pressure ...can launch an attack. Yes, it's been discussed before, yes, we all just kinda bide our time until the beast leaves. Trust me, live life to the fullest between cycles! 
6. Yes, it's sad that one of the best fixes for this is illegal. Shrooms and seeds have amazingly high efficiency rates. Stay away from pot though - it's a trigger for many, even just the smell of it will set my Mike off when he's in cycle.
7. I know - you didn't have a 7, but I'm adding one. Beg, borrow or steal but get you man some oxygen!! It truly is a Godsend!!
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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George_J
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Re: questions
« Reply #2 on: May 3rd, 2007, 10:29am » |
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Good morning, Erika.
I'm a clusterhead and not a supporter, but I'll try to respond to a few of your questions if I may. Good morning to Bill, as well...
1. Apparently the number of people who have suffered some sort of head trauma prior to getting CH is higher than in the population at large. That being said, there are any number of us, including me, who have never experienced any significant head trauma. So it's by no means universal.
2. A "cluster lump" is actually a swollen nerve ganglion (and associated tissues) that shows up in a significant number of us during an attack. Most commonly, it can be felt at the base of the skull to the left or right of the sphenopalatine ganglion, or near the C-5 vertebra on the back of the neck, or near C-7/T-1 where the neck meets the shoulder, or on the roof of the mouth. It typically shows up on the headache side. I know of one person who gets one on his cheek. Again, it's by no means universal--some of us don't get it at all. Normally, it gets swollen during an attack and subsides when the attack is over, although it can remain tender throughout a cycle. As Annette said, applying ice (wrapped in a sopping wet cloth) to the affected area can help reduce pain during an attack. When the attack is over, you might wish to allow the area to warm gradually by reducing the ice and then finishing with just the wet cloth--ice removed too quickly can cause a rebound headache. It does for me.
3. Quite a few people report good results aborting their headaches with Red Bull or similar energy drinks containing taurine and caffeine. I've found that for me, it works to abort a shadow quite quickly, but is generally not too helpful for a full-blown attack. We're all somewhat different--for some, it doesn't work at all-- but it sounds as if it has been helpful for Bill. I'm not sure whether it's possible to OD with Red Bull, but a caution: If Bill begins to take Verapamil as a preventative, consult with your doctor before continuing to use energy drinks. There is some evidence that the combination can cause cardiac problems.
5. There are some studies that show reduced testosterone levels in clusterheads, either during a headache cycle, or as a general condition. Lots of studies deal also with various hormonal aspects of cluster headaches--I'm sure as you continue reading and follow our conversations about them, you'll learn much more, just as we will. The whole thing is a work in progress as far as I've seen.
6. Some find that using marijuana during a cycle can precipitate an attack. Others find that it does nothing to their CH either way. Again, we differ to some extent. One thing that is very, very common, however, is that alcohol can be an inevitable trigger for a large number of episodics. It certainly is for me--I won't even take a sip of an alcoholic beverage during a cycle. If Bill is still enjoying an occasional beer during his cycle, he might wish to consider stopping it until his cycle is over. It can help. (Sorry, Bill.)
Welcome to the boards, Erika and Bill. Hope to hear much more from you, and I hope that you folks can get a grip on these soon. It's possible to live with these things.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Margi
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Re: questions
« Reply #3 on: May 3rd, 2007, 10:31am » |
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ha ha George - beat ya to it! 
oh and...you missed #4.
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| « Last Edit: May 3rd, 2007, 10:32am by Margi » |
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http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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George_J
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Re: questions
« Reply #4 on: May 3rd, 2007, 10:43am » |
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on May 3rd, 2007, 10:31am, Margi wrote:ha ha George - beat ya to it!
oh and...you missed #4. |
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Dang.
Didn't miss 4--just couldn't answer it well. Lots of others know more about kudzu than I do.
Best,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Erika
New Board Newbie
Gender:
Posts: 33
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Re: questions
« Reply #5 on: May 3rd, 2007, 6:15pm » |
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ok - backing the honey off so much magnesium
can't have him in pain at both ends now can we?????
I see wikipedia discusses the orgasm issue AND the LSD, shrooms issue - again WOW
I would think pot would be bad - especially if cigs are bad, but you just never know until you ask. Seems to me it is more of a mood enhancer - whatever mood you are in it enhances, so that (too) led me to think it would probably not be wise
just ordered stock in Red Bull - not really but bought enough to where I SHOULD own stock, lets hope last night wasn't a fluke!!
Started B vitamins - going to get melatonin -and still looking into O2 which I was hoping could wait until we got to a doc, but it isn't looking like we should wait. I called a welding shop today but didn't know exactly what to ask for
I am thinking my brain is fried now - feels like scrambled eggs!
anyone with info on carafgot - I don't even remember how to spell it - so I hope that you know what I mean
Bill doesn't drink anymore. ?? out of the blue one day about 5 years ago, he decided on his own that maybe it was making things worse, so to avoid pain - he put it down. BUT he is a cig smoker. Now - during a bout - is NOT the time to try to get him to quit, so he is trying to smoke as little as possible. Any effect of the above Cara(sp?) and cig smokers? any info will help!
you guys rock!!!!! I haven't been this 'settled' in YEARS!! I REALLY am HOME!! And yes, it is like finding people from our planet!
Erika
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Guiseppi
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Re: questions
« Reply #6 on: May 3rd, 2007, 6:54pm » |
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I use oral cafergot in conjunction with my oxygen. Oxygen aborts my headache but they return within 20 minutes of shutting off the 02. Now I take an oral cafergot and fire off the 02. 02 kills it, cafergot keeps it away up to 12 hours. Others have used it as a prevent, I'll wait for them to check in on that.
I have been doing the magnesium and vit B-2 supplement for several years and I swear my episodes have been shorter and less intense, with the exception of the length of this last one. You do have to watch the dosing on the magnesium!!!!!
And I said it before but you are a saint for doing all of this for him, he's got one hell of a partner in you. We LOVE our supporters.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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