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oscar
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I have a question, please
« on: Jul 7th, 2002, 1:58am » |
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Hi!,first of all, i want to thank Paul_b, Donna and Ree, for answering my first letter, you guys are very sweet and supportive; You have no idea, well sure you do!!, how this site is helping us, how important is to feel we are not alone. Thanks also to DJ, for the new place for us supporters.
Well, my husband wants to know, if there is any signal, that tells the cluster sufferer when the cycle is going to end, like more rebounds, or more attacks a day, less intense, or perhaps more, less attacks per day, something, something that tells you that hell soon will be over??!!!!; we are not sure how long he has been suffering this cycle, like i said he had it for 1 or two days after drinking alcohol, and then all of the sudden they were longer and stronger.... We think it is about two months now, but it could be a little more, i pray to God he is not a chronic, what is longer than normal??, we read that usually lasts between 2 and 3 months, so he should be at the end now??; I hope some of you can help us....Thanks
Ursula ???
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Slammy
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Re: I have a question, please
« Reply #1 on: Jul 8th, 2002, 5:12pm » |
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Ursula,
1st, I am sorry that your hubby is going through this pain. I've have suffered through episodic cluster headaches since I was 12 years old. In a sense, I don't ever recall being without the Beast.
In all those years, I never know when the cycle is going to start, or when it is going to end. My wife ( who has endured 18 years of this crap) notice a trend in which the CHs will reach a crescendo (an increase in pain and frequency) prior to the cycle ending. Almost like the bastard blows itself out.
Hopefully, others will post their take on it... but the fact remains that they DO end... and that is what gives us hope through these cycles.
Slammy 
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Donna
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Re: I have a question, please
« Reply #2 on: Jul 8th, 2002, 7:47pm » |
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Ursula:
Most of us agree with what Slammy said.........they build to a grande finalle. But no one can predict what to expect with ch. Mine lasted exactly 6 weeks, twice per year for 28 years. Towards the end of the cycle, most were at about Kip 9's. A 10 once in a blue moon. Thats when I had to go to the ER for help. I was really one of the luckier ones in that I knew how long mine would last.
Wish we could be of a little help here, but there's no cut and dryed answer.
3 months is not unusual. Let's pray that he's just about over this cycle. Have you gone into the older set of archives? There's 3 years of info there. This message board is fairly new, maybe 4 or 5 month old.
Wishing you a quick end of cycle there, Oscar!
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Candy
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Re: I have a question, please
« Reply #3 on: Jul 11th, 2002, 5:17am » |
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Ursula,
I'm so sorry you have to be here, but glad you found us and are not alone.
My hubby is episodic, and his attacks have the same basic pattern that Slammy and Donna mention...starts with just one or two a day about 15 minutes in length, and builds. They peak somewhere around the 2 month mark...an hour and a half of indescribable pain, then an hour and a half 'rest', until it starts again. By the time they're coming that often, his pain level is at about Kip 9. When he hits Kip 10, he's off to the emergency room. After that, the attacks start to taper off, less frequent and lower scale.
One thing you can do for him is keep track of his pattern - frequency, pain level, any treatments tried, and so on. This may help you to figure out what helps him cope (even a little), and you'll have a clear record for his doctor. And, as Donna said, there's tons of information her, so keep coming back - learning about CH and understanding might help make the whole ordeal less frightening.
Wishing you both sunshiney days and peaceful nights...
Candy 
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Margi
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Re: I have a question, please
« Reply #4 on: Jul 11th, 2002, 10:50am » |
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Hi Ursula
Sounds like you're doing a wonderful job of being a supporter for Oscar.
Officially, the definition of 'chronic' is 12 months of attacks, with no more than 2 consecutive weeks of unmedicated pain freedom. So, Oscar's not chronic yet.
I think a lot of the length of folks' cycles depends on their age. Remissions (time between cycles) increase with age, but for a lot of folks here, their cycles get longer as their remissions increase too. 40 seems to be a magic age for a lot of folks as to when the remissions tend to increase.
You're right - AVERAGE cycle is 2 - 3 months, but again, there are a number of people here who go a lot longer than that and are still episodic and not chronic. My heart breaks when I hear of people going through long cycles and nearing the breaking point, nerve wise. Sleep deprivation takes over at that point and they tend to just function on nervous energy. ECC really nailed it when he said that he tries not to get his hopes up that it's almost over after almost 6 months of a brutal cycle because, when we realize that the cycle is STILL there after so many months, it's just so discouraging. Praying for your cycle to end soon, ECC.
Ursula, I've noticed that you've mentioned in both your posts that Oscar is a drinker. He's not still drinking while he's in cycle, is he? It's a VERY common trigger for attacks....does he know that?
Hang in there, our new friends - you sure AREN'T alone anymore. Now you're stuck with all us goofs (gooves?)
Hugs
Margi
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paul_b
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Re: I have a question, please
« Reply #5 on: Jul 11th, 2002, 11:32pm » |
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My cycle would last 2-4 months and the pain increased towards the end of each cycle. This was the pattern for 20+ years until I had a four year remission when I turned 55. They began again this year but so far not as bad. For me I am hoping that the age factor will come into play and things will be less sever. Your hubby is doing BAD if he is drinking  The cycle will end. Meanwhile, do all the documenting you can: time of episodes, intensity, duration, medication used, how much, foods eaten before attacks. I kept a chart for years and even though I could not stop the attacks, I believe I was pro-active and that in itself is a helpful strategy. Go for it. The Beast has a mind of its own, the only problem is it likes to share space in others ' minds.
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oscar
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Re: I have a question, please
« Reply #6 on: Jul 12th, 2002, 2:16am » |
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Hello Everyone!!!, First of all i want to thank all of you for being The REAL supporters here!!!, I don't know what we would've done without you, we learned, and keep learning so much from you every day.THANKS!.
We were reading your answers to our questions and my hubby almost died of shame when you refered about his drinking!!!, he got a little mad at me asking what did i write about him that you may think he was a drinker!! LOL. He asked me to please tell you not to think bad, he is just (was after cluster) a social drinker, nothing else. NO DRINKS NO MORE! LOL.
About his attacks, they were very strong, we thought it was going to end, but now they are shorter and not as stronger, even less attacks, but every day he thinks is the last one... they keep coming... some are strong others are not, is so confusing, but after all that you told us, i think we just need to wait (trying not to think about it when they are not hiting), for the cycle to end.
Imitrex spray for the nose helps him with the pain but he uses it only in extreme cases like if we are in the car or somewhere else away from home, since he can not use it more than twice in a 24 hour period. We don't know yet how to do the kip thing for the levels of pain, hope i lern soon.
Thanks again, God bless you all too.
Ursula
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yeagersms
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Re: I have a question, please
« Reply #7 on: Jul 12th, 2002, 3:56pm » |
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Wow, i just read the messages in this topic and I must admit I'm discouraged.
My husband only has CH's 1 month out of every year. I didn't realize that they had a tendancy to increase throughout the years.......This sucks!!!!!!
Now we have more pain to look forward to as if one month of hell is not enough for him in a year.
Sorry guys, just feeling sorry for ourselves!
I pray his don't happen that way - and hope the pain ends soon for all of you.
Jamie (Jon's Wife)
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Lorsman
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Re: I have a question, please
« Reply #8 on: Jul 15th, 2002, 12:10pm » |
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With my clusters,, I noticed towards the end of the cycle,, that they werent quite as intense. I would get them,, but they were easier to kill, via hot shower or bath,, and hot coffee. I knew, when it was near the end,, because I would sleep through the night, without waking up in pain. I guess everyone is different,,but that was my q that the hell was near the end.
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oscar
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Re: I have a question, please
« Reply #9 on: Jul 17th, 2002, 1:49am » |
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tHANKS!!! to all of you for answering my question, you guys are great for taking your time to help us. All that you said is helping us a lot, and we think (I hope and pray with all my heart), That oscar is almost at the end of his cycle, Today he took the last medicine and he is nervous that it will come back, this morning he just felt hot Around his eye, but no pain, no sensation of presure, then it was gone, and nothing else..... until now, he took something for the pain just in case, lets see how it goes tomorrow, hopefully it will be gone for long, we don't know how much, maybe we get lucky and takes some years... About starting his normal life, should he wait two weeks to make sure he is on remision? or he could start as soon as one day after one day of no pain at all???...Please keep telling us your experiences about the ends of your cycles and / or when can you start your normal life....
Thanks again
Ursula
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Margi
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Re: I have a question, please
« Reply #10 on: Jul 17th, 2002, 9:25am » |
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First of all, to Jamie (Jon's wife) - yes, cycles can lengthen over time, but so can remissions!! So, my advice to you (after living with Mike's episodic cluster cycles for 16 years now) is to NOT dwell on the fact that there will be another cycle. ENJOY the remission and the pain free days!! Yes, it's kind of like living with a time bomb in the closet and you will have to go to battle again sooner or later, but live each pain free day together, to the fullest!!
And, to Ursula: what do you mean by 'returning to normal life'? I don't mean to dwell on the alcohol, but is this what you're asking - can Oscar go back to drinking? Well, if that's what you ARE asking - it definitely is a sure-fire test if he IS out of cycle. If he has a beer (for example) and he gets hit again, chances are he's still in cycle. Kinda stumps me why folks want to flirt with danger like that, but ... to each his own.
Returning to 'normal life' after a cluster cycle just usually progresses naturally. He'll know when he's out of the woods, Ursula. In our experience, the end of a cycle is a very gradual thing. One pain free day, then hits in the night, then a couple of pain free days -- then a random and very vicious attack -- kinda like the Beast is taking one final and brutal kick at him, then maybe a week of pain freedom, but the 'cluster eyes' remain. For Mike, his 'cluster eyes' can hang around for months after a cycle (one pupil enlarging suddenly and remaining like that for the duration of a normal attack but with no pain). For others, however, they will continue to get hit hard all through the day and night and suddenly, no pain and it doesn't come back at ALL until the next cycle. This is why clusters are so hard to treat - even though the pain is the same, there are idiosyncracies that are different for everyone.
Hang in there, supporters!!
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IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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oscar
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Re: I have a question, please
« Reply #11 on: Jul 18th, 2002, 2:33am » |
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Thanks Margi for your answer, and to be honest when i said "normal life" i meant the drinking thing, oh when my husband reads this he is going to kill me for keep asking about the drinks!!!LOL!!! and I also feel guilty because when I reread what I write it sounds like if he is an alcoholic!!!, but how can I explain, we are from Peru, South America, but we live in USA for more than 7 years, his parents brother, sister, grandma, aunts etc... are also living here, his family is very, VERY close to eachother, they love to get toguether, in fact, the business is a family business, Mom, Dad, brother sister and my hubby work toguether, so we see eachother almost every day if not every day, and weekends, days off, birthdays (big celebrations!!!), for business, or whatever, they come to our home, we go to theirs.....and they sometimes have some beers here, some beers there...or wine...and I personally like to have some drinks too, but not so often, and there is when sometimes the problems start, plus i just can't stand the smell of beer coming out of his breathing when we are, or better say when he is sleeping.
He promised me he was not going to drink again after Clusters, and to be honest he didn't drink any alcohol for like two months because of the pains, but I know as soon as he feels totally fine he will have a drink or two, which is fine with me as long as it doesn't triger another cycle, and I was wondering if when people is on remission they could have some drinks, go to eat chinese food, eat some hot sauce (that was a triger for him this cycle), do exercices (the boxing), etc... in another words that is kind of his normal life!!!.
When he was in pain all this time he also stop smoking like for three months, but now that he feels better he started again he is like on 6 a day.... Like you said, I also can not understand why some people like to play with their health like that and take those silly risks...I guess is like sometimes people forget to pray, and they remember to do it when they need to ask the lord for something, (I feel embarrased to say that happened to me ); When the pain is gone they kinda forget, and when someone reminds them to be carefull, they'll say "Oh! it's OK, just tonight, it'll be only once nothing will happen".
Thanks again Margi, take care.
Ursula
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oscar
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Re: I have a question, please
« Reply #12 on: Jul 19th, 2002, 1:46am » |
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Thanks Ecc, that's exactly what I wanted to know, that way i wont be a pain, telling him constantly not to do this or that, in fear that he could make a cycle start. I feel much better; of course during cycle I don't need to tell him anything, cause he is so much in pain , he would never do anything thatcould bring an extra attack to him. Today he didn't feel pain, but he still feels that hot aura in his eye that bothers him a lot since he feels it like a bomb that it's going to explode any minute; he is afraid to start again....he was in a really bad mood today, I can't wait for this to be over.....
I try not to forget to pray, it is just that sometimes I don't have time for anything, I end up my day so tired that when I start praying I just fall asleep, and I feel terrible, I hope God understands me and forgives me on those times...I promise I'll try even harder this time, I have so many things to give thanks for, and three treasures to ask God to protect with all his power.
Thanks again.
Ursula
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