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Marnie
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HELP FOR CHILD
« on: Apr 19th, 2004, 1:15pm » |
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My son, who will be 12 in two months, has been suffering from what his doctors says are migraines for the past several years, (since it was diagnosed). I have never heard of cluster headaches before but after reading some info on this, think this may be what he has. I noticed in one article it said that the pain is usually on one side of the head, by the eye and when they said people describe the pain as "someone sticking them in the eye with an icepick" that is exactly what he has been saying! He also complains of a burning sensation in and around his head. He currently takes imitrix for the migraines, when he feels one coming, but most of the time does not feel them until it is too late. These headaches usually last from 45 minutes up to 2 hours and when they're bad, curling up in a ball because he can't stand it, until he finally throws up and goes to sleep. He has never woken up with a headache though... Any help or info and advice would be appreciated. Please feel free to email me at policegirl911@cox.net Thanks in advance!! 
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Karla
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Re: HELP FOR CHILD
« Reply #1 on: Apr 19th, 2004, 1:34pm » |
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Hello, my son started suffering from migraines and cluster headaches at a young age also. He is eposodic. He gets them in the fall real bad for a couple of months. I also have cluster headaches and have been chronic for 6 years. I get all my ch durring the daytime into the evening hours while I am awake. My sons dr originally described him as having migraines but I knew they were clusters because I could see the signs. I argued the point because of the length of the attacks and number of attacks and the center of the pain and was able to get a correct diagnosis finally. But I didn't sweat it to much because alot of the meds that are used for migraines are used for clusters also. The abortive meds like midrin, imitrix, zomig, axert, migranol, dhe, amerge, frova they are all used for migraines and clusters alike. Oxygen is a great abortive and is easy on the body but only works for clusters. But the preventatives are a little different when it comes to success in preventing them. Verapamil, lithium, and if those don't work seperately try them in a combination together. Predisone tapers work great to and can sometimes break the cycle. Thing is most neurologists wont use any of these meds on kids. The neuros around here would only give him midrin until he turned 18. I was very disapointed. Some people find relief in heat or ice. Heat personally sets me off and causes more pain. However I find great comfort in gelled icepacks around my neck area when getting hit. Some people get relief from hot showers. You gotta find what works. Some people want to be left alone and others want people around. Make sure he gets occassional massages on his neck and upper back. It tends to absorb alot of the pain and gets real tight and tense. Have his meds ready and have him take them at first sight of pain. Not wait until it gets real bad. Pills take an hour or so to kick in and that is alot of suffering if your already in full swing headache before you take it. Good luck.
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Karla
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Marnie
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Re: HELP FOR CHILD
« Reply #2 on: Apr 19th, 2004, 1:40pm » |
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Thank you sooo much for your reply. I almost feel like crying just from finding this board! I have never heard of "cluster headaches" before but will def. push his doctor to do more. The poor kid gets sooo bad, and you are right, after you said it I recalled he always wants to take a hot shower when he is having one, (when he can stand up). Your information is wonderful and thank you a million times! Marnie
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ExplodingEyeBall
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Re: HELP FOR CHILD
« Reply #3 on: Apr 19th, 2004, 1:42pm » |
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I'm not an expert on this subject. I am relatively new to this message board myself, but there are a couple of things you mentioned that make this sound like it is not clusters, although there are a couple of others that do.
The examples I will give are only my opinion and others here may have have a different opinion.
First of all...Yes. It does feel like an ice pick or a fire behind my eye. My explanation of it is that someone is trying to pry my eyeball out of my head.
The pain also consumes almost the entire right side of my head when it happens, although the focus of the pain is usually behind my eye or above my ear close to the temple.
This is where the similarities stop for me.
The pain with me is ALWAYS on the same side of the head.
What I have read from other people and from my own experience, CH sufferers don't usually vomit as a result of their HAs.
As far as waking up with them.. When I have them it usually happens a couple of hours after I go to sleep and they always wake me up.
Different people have their own unique ways of suffering with these and I can't diagnose your son. All I can do is try my hardest to give you some advice.
I would recommend looking at the link on this web site for the Cluster Quiz and try that. It's not scientific as far as I know but it as a really good place to start.
If you still think after the quiz that your son is suffering with clusters, you should start looking for a good neurosurgeon in your area.
If you check the 'Where we live' link at this web site, you should be able to contact someone from your area and get some advice on a good doctor.
I hope for the sake of a 12 year old child that it is not CH's. If it is, this web site is a great source of information on treatment, support, a shoulder to cry on, etc.. I know that they have accepted me with open arms here and givin me a lot of good advice.
I hope that I have helped at least a little bit.
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| « Last Edit: Apr 19th, 2004, 1:45pm by ExplodingEyeBall » |
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Just poke out my eye and get it over with!!!
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Marnie
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Re: HELP FOR CHILD
« Reply #4 on: Apr 19th, 2004, 1:48pm » |
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elploding eyeball,
Thank you so much for your post. Any information is great right now. You sound like your syptoms are alot like his, his always seems to be behind his right eye as well and he is in such pain that I think that what may be triggering the throwing up. I will check out the cluster survey and if you think of any other great info. please let me know!! Thanks!! Marnie
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notseinfeld
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Re: HELP FOR CHILD
« Reply #5 on: Apr 19th, 2004, 2:15pm » |
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Hoping you took the quiz on the left side for aid in determining whether he fits the profile or not. (In case you didn't know, we're all praying that he doesn't).
Additionally, does he have growth problems such as being particularly tall / short? Has he reached puberty?
Does he vomit every time at the end or only occasionally? Are there any triggers for the headaches?
I've got lots more questions but don't want to inundate you just yet. Please keep us informed b/c this sound rather peculiar in that it's almost a combination or part cluster, part migraine. Fingers are crossed that he's got the latter.
nots
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Marnie
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Re: HELP FOR CHILD
« Reply #6 on: Apr 19th, 2004, 2:53pm » |
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Nots,
Thanks for your reply and questions. I can tell you that he has not experienced any growth problems, he is neither overgrown or undergrown, pretty average for his age. He has not reached puberty yet, but i'm sure it is just around the corner, yipeee! (ahhhh!) He generally does not vomit everytime he has an episode. I would say out of say for example 4 serious episode (ones that totally consume him in pain for several hours) he would vomit at the end of 1 of those, maybe 2. We have not really noticed any major triggers and he has never complained of any migraine type auras. His biggest complaint is in the fact that his right eyeball and side of his face hurt more than he can stand, and he says it feels like he is being stabbed in the eye, and toward the last half of the episode he complains that his head feels like it is on fire or burning???? I feel sooo awful for him and just wish I could find something to stop it from being so bad at least. He probably has 7-9 a year at this point. Thank you so so much for any help.
Marnie
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Karla
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Re: HELP FOR CHILD
« Reply #7 on: Apr 19th, 2004, 5:31pm » |
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What you describe sounds like it could very well be clusters. However did it just start this year? Usually cycles will run from 6 weeks to several several months. Getting hit anywhere from once a day to 8 or so times a day. Having just a few frequent ha here and there doesn't really sound like a normal typical cluster pattern to me.
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Karla
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Margi
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Re: HELP FOR CHILD
« Reply #8 on: Apr 19th, 2004, 8:49pm » |
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Marnie, I answered your post over in the supporters section too.
I forgot to mention that the clusterheads I know have quite often mentioned that they did get rogue attacks in their childhoods that they usually didn't realize we clusters. I think this affliction morphs with age. It most often hits in late puberty and then changes after about age 40. The remissions increase in length but so, unfortunately do the cycles for some. I think it really is a hormonal thing - we do know (from Dr. Goadsby's research) that clusterheads have an enlarged hypothalmus - we just don't know why that causes clusters and why it does kick in and change with hormonal changes. Interesting to note that women that get clusters usually are pain free during pregnancy. Not that that helps YOU in any way, but it does underline the hormonal theory.
Anyway - again, get him some oxygen and try to limit the imitrex - imitrex really can cause stomach upset. Vomitting is usually more of a migraine thing, so I would guess that he's not tolerating the 'trex too well.
Hang in there, Marnie - you've got lots of warriors standing with you now.
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UN_SOLVED
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Re: HELP FOR CHILD
« Reply #9 on: Apr 19th, 2004, 11:53pm » |
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on Apr 19th, 2004, 2:53pm, Marnie wrote:
He probably has 7-9 a year at this point. |
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Am I reading this correctly ? He has 7 - 9 headaches per year ? If that is what you meant ... it is not clusters.
A suggestion :
Keep a diary of everything for awhile (time of awakening, foods eaten, time of sleep, activities, mental status, and of course...headaches [time, intensity, duration, what makes it better/worse, medications taken and effects, etc]. The more info - the better.) All these may help in a correct diagnosis (and treatment) weather it be clusters or not.
Goodluck and best wishes
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