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Supporters ability to foretell a CH attack
« on: Jan 19th, 2007, 10:46am »
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After about 3 months observing Daniel getting hit daily, I suddenly realised that I could foretell the hit before he even felt the slightest twinge of pain.
 
I would just look at him and something would tell me that he is going to get hit soon. Often it would be a few minutes before the hit would start but sometimes it could be as long as 30 mins before it came. I would tell him that a hit was comming and he would look at me, puzzled, saying that he felt perfectly fine. Amazingly I had not been wrong once. I have been able to help him very quickly abort several hits by giving him a warning early enough so that the oxygen would work much better.
 
After talking to several others on the Board, I was interested to learn that other supporters can do the same. This got me thinking. Time is crucial in getting abortives such as oxygen to work, so if somehow we can compile our experience of what we have learnt as "warning signs " so that our CHers can also learn to recognise them earlier, it would really help ?
 
I have noted down what I have noticed to be warnining signs as below :
 
1- The cluster eye starts to wander, it doesnt follow the "good" eye properly.
2- Your CHer suddenly becomes more withdrawn into him/herself, for eg would stop the conversation and just sits there quietly.
3- Tension may be seen on the neck, arm and face muscles.
4- Body is warm/hot to touch, especially neck and back.
5- A subtle change in facial expression, a sort of forlorn/loss look.
6- Sudden loss of eye contact during a conversation.
 
I would love to hear from other supporters with similar experiences.
 
Thanks everyone and painfree wishes to all.
 
 
Annette
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Re: Supporters ability to foretell a CH attack
« Reply #1 on: Jan 23rd, 2007, 11:34am »
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hi  
    this is my 1st post, ive been looking on this site for a while now with my partner ike/aloneuk but thought id join and have my say now, ikes been in pain for about 7months now and over the last couple of months i learnt i could tell he was going to have a hit before him, i would agree with the points you said and i can also tell for the same points
 
 
 
 1- The cluster eye starts to wander, it doesnt follow the "good" eye properly.
2- Your CHer suddenly becomes more withdrawn into him/herself, for eg would stop the conversation and just sits there quietly.
3- Tension may be seen on the neck, arm and face muscles.
4- Body is warm/hot to touch, especially neck and back.
5- A subtle change in facial expression, a sort of forlorn/loss look.
6- Sudden loss of eye contact during a conversation.
 
ikes very outspoken and i find it hard to shut him up most of the time, but when a hit is on its way he just shys away and goes into a world of his own and he cant keep up with conversations but if i ask him he will say he feels fine.
maybe if he could pick up on the same signs he would be in more control?
i hope ive helped some good luck  
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Re: Supporters ability to foretell a CH attack
« Reply #2 on: Jan 25th, 2007, 3:58pm »
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Hi Annette,
 
I too can generally tell when an attack is on the way.  My husband always "twitches" a bit - in that he sort of shakes his head a couple of times, but I don't even think he is aware that he is doing that.  Your other descriptors are pretty accurate in our house too, except for the body heat part - I've never noticed that.
 
Hope you are keeping well.
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Re: Supporters ability to foretell a CH attack
« Reply #3 on: Jan 25th, 2007, 6:41pm »
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Thanks Major and Tammi,
 
I am glad that there seems to be a common sets of signs/symptoms that signals some change in the brain is happening.
 
As we know a CH hit is triggered by a series of neurotransmitters and neuropeptides being released in the brain, and that they cause a range of chemical/neurological activities there. It must mean that the changes start to happen before the trigeminal nerve gets squashed or irritated. So if somehow the CHers can be made aware of these subble change, they will have more time to act such as chugging down a red bull, reaching for the oxygen or the tryptans ...  
 
Being able to take these measures early can stop a CH hit in its track prior to the pain ever starting ( from our experience ). This would help tremendously wouldnt it?
 
I plan to alert my husband to this every time and ask him to check "within himself" so see what sort of experience he can feel at that time, with the hope that eventually he will learn to recognise these warnings early enough himself so that he can prevent a hit as it comes.
 
Please share your experience too.
 
Thank you very much.
 
Painfree wishes to you all.
 
Annette
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Re: Supporters ability to foretell a CH attack
« Reply #4 on: Jan 31st, 2007, 12:17am »
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I'm so sorry to think other people live this life too. After 10 years, We've noticed a 3 day cycle. (we rank them by numbers) a terrible night (10) is followed by a almost normal night (2 or 3), the next night usually a (6 or 7), then terrible again. It's almost like whatever chemical builds up, releases and begins to build again...I also have noticed the quiet, inward attention, just before he goes to prepare. We use oxygen, icepacks, caffergot, caffiene drinks. It's a terrible dance we do everyday, just slightly different times. My husband will seem more agitated on a day before he has a bad one. It always amazes me how he can be normal during other parts of the day. The busier he is the longer it stays away, as soon as he begins to relax, you can see it coming on. With us the oddest thing is watching his eyelid both upper and lower quickly swell and go down, this means it's going to be bad! I'm still shocked after all this time we cannot give them something that will just make it stop.
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Re: Supporters ability to foretell a CH attack
« Reply #5 on: Apr 14th, 2007, 10:49am »
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I must be a "bad" supporter.  
 
The hits take me by surprise as much as they do for my clusterhead.
 
One minutes he's fine and the next he's down . . . .
 
I'll have to pay better attention and see if I can spot one.
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Re: Supporters ability to foretell a CH attack
« Reply #6 on: Apr 19th, 2007, 10:26am »
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You are definitely not a bad supporter my dear, Bill must be really experienced at hiding the whole thing from you  Wink  Grin
 
Hugs
 
 
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Re: Supporters ability to foretell a CH attack
« Reply #7 on: Apr 19th, 2007, 7:52pm »
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on Apr 14th, 2007, 10:49am, Mosaicwench wrote:
I must be a "bad" supporter.  
 
The hits take me by surprise as much as they do for my clusterhead.
 
One minutes he's fine and the next he's down . . . .
 
I'll have to pay better attention and see if I can spot one.

 
Most times Barry's CH's take me by surprise. Since I read this I have been paying attention and I notice when he falls alsleep on the couch he starts to twitch and rub his eye, at that point I wake him before it gets worse
 
Thanks for bringing this up because it makes us more aware.
 
« Last Edit: Apr 20th, 2007, 10:24am by Angie » IP Logged
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Re: Supporters ability to foretell a CH attack
« Reply #8 on: Jul 11th, 2007, 7:06pm »
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My mom must have not found this one yet....she is really good at telling I'm going to get a hit before I am too.  Here are some of the warning signs, from her mouth, not mine.  I've been able to pick up on these based on others reactions, but I don't really notice that I am doing them, myself.  
 
Here are the similar ones...
1.  Get spacey, sometimes I'll kinda glare at something but usually just drift off.
2.  Quiet, same drop out of the conversation thing..also hard to carry on converstion.
3.  Trouble controlling body temperature..get hot/cold (I notice this one though)
 
Here are the other signs...
1.  Can't smile.
2.  Can't type (most of the people here that have chatted with me know this by now!)  
3.  Eye will start getting puffy or black underneath, also usually itches so I'll rub it.  So if something gets in my eye and I rub it she gets SO worried!  
 
I think those are the main ones that will get her worrying and make sure the o2 is close by....
 
Lisa
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Re: Supporters ability to foretell a CH attack
« Reply #9 on: Jul 27th, 2007, 11:37pm »
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on Apr 14th, 2007, 10:49am, Mosaicwench wrote:
I must be a "bad" supporter.  
 
The hits take me by surprise as much as they do for my clusterhead.
 
One minutes he's fine and the next he's down . . . .
 
I'll have to pay better attention and see if I can spot one.

 
 
I've paid attention since I last wrote this in April and I gotta say - he's not had an attack that I've witnessed!!  
 
He's had several shadows and one "minor" attack at work (none of which I saw coming) but nothing at home.  That alone makes me very thankful, grateful and downright cheerful.
 
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Re: Supporters ability to foretell a CH attack
« Reply #10 on: Jul 30th, 2007, 9:41pm »
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I almost always notice a lack of ability to concentrate 20-30 min before an attack unless I’m not concentrating at the time (TV, music, or here writing...). And then the shadow comes and its time to run for the O2.
 
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Re: Supporters ability to foretell a CH attack
« Reply #11 on: Nov 3rd, 2007, 7:56am »
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Quote:
but when a hit is on its way he just shys away and goes into a world of his own and he cant keep up with conversations but if i ask him he will say he feels fine

what a strange world!i ve been told the same thing that  i seem to become out of touch but honestly i feel fine.most of the time i like conversations and i can talk for hours but before even shadows occur it seems i stop  
to interfear(is it right word?) with others.but what it might happen is that a song or a view capture me but i cant be sure.i have to observe myself more.great post by the way.i have to say that u supporters are angels.god bless u Smiley
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Re: Supporters ability to foretell a CH attack
« Reply #12 on: Nov 11th, 2007, 6:58am »
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so by knowing in advance, what do you do? Do you have your ch'er take abortives in advance of the hit to abort what hasn't yet happened? What about o2? Take it before the hit?
 
Or advise of the forewarning so that the ch'er can have everything "at the ready"?
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Re: Supporters ability to foretell a CH attack
« Reply #13 on: Nov 11th, 2007, 7:29am »
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I would run for the Red Bull and the ice as soon as I noticed something was building. This had helped Daniel completely block off quite a few hits.
 
It also helped him get onto the oxygen a lot earlier than he used to and it did work better this way.
 
We found that if the hit got "treated" early, it wouldnt build up so much in intensity or last as long.
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Re: Supporters ability to foretell a CH attack
« Reply #14 on: Nov 11th, 2007, 7:48am »
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so you're saying begin treatment in that "pre-hit" state?  I can understand that for conventional ingested abortives because of the length of time they take to get in the system, but do you think that hitting the o2 in the same state (even though no pain is present at the time) wards off the impending hit?
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Re: Supporters ability to foretell a CH attack
« Reply #15 on: Nov 11th, 2007, 6:39pm »
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Yes Jen, I strongly believe that starting some form of abortive treatment especially caffeine and/or oxygen at the "pre-hit"stage where there is minimal or no pain yet more than often blocked off the whole hit.
 
I personally call this stage "prodromal stage" although there is currently no formal recognisation of it yet.  
 
From what I read CH hit is caused by a cascade of events, starting first with an increase in serotonin level, which will lead to the vasodilation of the blood vessels, which will cause physical compression of the trigeminal nerves. Not until the trigeminal nerve is squashed badly enough and starting to fire that one starts to feel the real pain. It seems to me that when the pressure inside the head first starts to increase and the different neurotransmittors start to float around, is when the person start to withdraw inwards. Its well known that when the cluster eye starts to wander its the sign that the autonomic nervous system is activated. All these things happen prior to the pain, sometimes a fair while prior to the pain. However, the pain will follow for sure as these events worsen.
 
I figure then if one can chuck down a redbull quickly or gets on the oxygen early, one can vasoconstrict those blood vessels that just started to dilate and hopefully will be able to abort the whole process, or at least control the degree of dilatation so that the trigeminal nerve wont be as badly squashed as otherwise and this would ultimately reduce the intensity of the pain.
 
I need to stress that all of the above is my own understand and deduction, its not formally written down anywhere.  
 
However, I do say that since we took to treat the hits as early as possible, many were aborted quickly with minimal pain and Daniel didnt need to use tryptan as often. He would use Redbull, coffee, ice, oxygen as first line if at home, and Redbull or Zyprexa tablet when out. Zyprexa tablet take about 15-20 mins to work, even oxygen can take 10-15 mins to work so logically the earlier one can start on these the better. Trex was reserved for those bad ones that broke through.
 
I hope this helps.
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Re: Supporters ability to foretell a CH attack
« Reply #16 on: Nov 11th, 2007, 9:10pm »
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What is zyrprexa? May  I also add relpax as a suggestion. Lisa has a can of redbull and a relpax (a triptan) taped to the bottom of the can and keeps this in her backpack. It was a real lifesaver for her during orchestra and school when o2 wasn't convenient. Something about this combination worked in 10 min. usually.
 
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Re: Supporters ability to foretell a CH attack
« Reply #17 on: Nov 11th, 2007, 9:53pm »
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Charlotte,  
 
Zyprexa is an antipsychotic med. Its usually used to treat schizophrenia and similar conditions. However, it has been found to work as an abortive for some CHers. It works on the serotonin too but it doesnt vasoconstrict so it doesnt affect the heart.
 
E Double was the first to mention the use of zyprexa here as an abortive. Daniel tried it and amazingly it worked also for him. It takes anywhere between 7 to 20 mins for it to work and it doesnt cause the washed out sensation afterwards like tryptan. Its also very cheap compared to triptans.
 
The tablet comes in 5, 10 or 15 mgs. Some gets good result with as little as 5 mg. Daniel used the 10 mgs. Someone here even said he took 25 mg daily as a preventive and it worked well for him.
 
The one thing Zyprexa does cause is weight gain and hypercholestereamia ( increased cholesterol in the blood ) so regular blood test is needed and one needs to watch ones diet carefully while on it.
 
If you only use Zyprexa occasionally as an abortive and not regularly every day then the side effects are minimal.
 
Hope this helps  Smiley
 
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Re: Supporters ability to foretell a CH attack
« Reply #18 on: Nov 11th, 2007, 11:21pm »
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Can't take the credit....
Bob Johnson first reported it to my knowledge.
Him and his brother used it and Todd Rozen studied it.
 
I just followed suit.
 
Glad it helps
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Re: Supporters ability to foretell a CH attack
« Reply #19 on: Nov 11th, 2007, 11:37pm »
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Awww Eric, you dont need to be so modest.
 
Of course you can take the credit.
 
You were most helpful and gave me heaps of information about Zyprexa and brought up a whole thread to satisfy my many questions  Smiley
 
Thank you so very much, it helped tremendously to have another weapon up the sleeve in the battle against this beast  Kiss
 
I should add too, that long term and regular use of zyprexa increases the risk of diabetes in some people.  
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Re: Supporters ability to foretell a CH attack
« Reply #20 on: Nov 12th, 2007, 6:48am »
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Lisa has been given compazine iv in the ER before although she really reacted poorly to. Her bones got very crampy and itchy. Is this in the same drug class?
 
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Re: Supporters ability to foretell a CH attack
« Reply #21 on: Nov 12th, 2007, 6:33pm »
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Compazine is typical antipyschotic drug, its old. Zyprexa is an atypical antipsychotic drug, newer generation, less side effect.
 
They act similarly but they are different. One may react badly to one but not the other.
 
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