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Help, I'm new to this
« on: Nov 16th, 2003, 12:12pm »
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I have a son, 8 years old, who has been diagnosed with "migraines". He has not had a "migraine" for 4 months. We stopped watching what he ate, and he was fine. This week, he started all over again. The thing is, I am torn between what I am reading here and what I have read about migraines. My husband is a migraine sufferer. They are hereditary. We started watching again what he ate, stopped all the "bad" foods, yet still the headaches coninue. They are starting at around 9:00 am, every day like clockwork for a week now. His eye starts to water, gets puffy, and he looks like a walking zombie. He says it hurts though, but not like I am reading. He does not complain like it is killing him or stabbing or anything like that. He does seem to be in  a great deal of pain but not excruciating. He has come home from school once this week. I am terrified to send him to school tomorrow. I have given him Motrin every morning and this seems to help. Or is it just that the cluster ends. I have talked to the pediatrician, who says migrain, migraine, migraine. My question is, if they are cluster headaches, why don't they feel like stabbing pain all the time. The worst one of the day is definitely the first one and they seem to decrease in pain as they occur throughout the day. I am sorry this is so long. I just wonder if anyone else has or knows of someone with symptoms like this. I am still studying. Thanks for any help.  Kathy
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Re: Help, I'm new to this
« Reply #1 on: Nov 16th, 2003, 1:30pm »
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Hi Kathy, so sorry to hear that your little guy is hurting. Sad
I don't think we know enough about clusters in kids yet to be able to put their symptoms into a clearly defined box.  I'd sure seek a second opinion from a cluster knowledgeable neuro (there's a list over at, first menu about the map).  
I sure WOULD try him on oxygen as a preventative, though - that's the most benign of all the headache "treatments".  
Best of luck to you and your son.
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  cathy_lucas47   cybersis1965

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Re: Help, I'm new to this
« Reply #2 on: Nov 16th, 2003, 3:24pm »
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Cry...Kathy...I don't think there is anything that can rip your heart out the way a child's pain can....
Im so sorry your little chap is having to go through this kind of pain at such a young age! If you suspect your son has clusters and not migraines...or maybe worse both, then push for a correct the proper treatment is recieved...they are doctors not Gods...they are NOT always right, in fact as far as CH is concerned they are more often there diagnosis.
Mothers and learn as much as you can, print out the info and go armed back to your doctor is you think that it's clusters and not migraine...I hope that things work out for you and him...keep us posted on his progress.
Margi's right O2...
Hugs and PF vibes to you and him.
Cathy  Smiley
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Re: Help, I'm new to this
« Reply #3 on: Nov 18th, 2003, 9:40am »
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I'm here with you and would like to start a dialog with you as soon as possible.
Margi is right - the Docs just don't know how CH presents itself in children (which is why we only have a preliminary diagnosis).  I would very much like to compare notes with you - share symptomology etc....  As we have been struggling for the past year as well-- maybe I can give you a list of some questions that our doctors' are asking us and also maybe we can compare our headache charts.  Also - the kip scale to the right is good but for my 8 year old the Wong's face scale is better--more comfortable.
Also - probably like me - you have your good days and your bad days when trying to handle the pain, the situation, the anxiety and the nagging doubts about if you are truly doing everything you possibly can.  Please feel free to IM me & I will give you my Email.
With all my most ardent hopes and prayers,
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