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   Author  Topic: Cluster Kids  (Read 1383 times)
Margi
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Cluster Kids
« on: Feb 27th, 2002, 2:55pm »
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Our Resource Team has done an excellent job of compiling information for cluster pain in kids.  Here's the link to what they've done...
 
http://www.clusterheadaches.org/resources/kids.htm
 
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Margi
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Re: Cluster Kids
« Reply #1 on: Feb 27th, 2002, 3:00pm »
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and thanks for putting this board up, DJ.  Great idea Den!
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Re: Cluster Kids
« Reply #2 on: Feb 27th, 2002, 4:02pm »
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Sure wish this was here 26 yrs ago.
 
Nice going, DJ and the rest involed.
 
..................jonny
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Re: Cluster Kids
« Reply #3 on: Feb 28th, 2002, 6:07pm »
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I am very happy to see this new room and wish to thank Margi and DJ for their hard work and concern. I also wish to thank Den for suggesting it.
 
As the mother of a son with clusters, I would like to share some of my thoughts and feelings..........
 
He is now 31 years old.  When he was in the 5th grade, he started complaining about headaches that usually occured in the morning just before school stated.
 
I took him to his Pediatrician who prescribed Periactin for his "migraines".  This med. didn't help.  The headaches came and went.
 
He began missing quite a bit of school and they accused him of using headaches as an excuse for not attending.
 
Being a single mom raising 3 alone, patience was short and so was understanding.
 
 I never saw the cluster headache symptoms.  He wasn't in the type of pain that would have connected the dots. ( He didn't complain about nausea or auras either. )  Just bad headaches.  He wasn't awakened at night.
 
At age 17, the classic symptoms appeared.
 
My advice to parents of a child that complaines of headache is...believe him/her.  Do not take their complaints lightly.  
 
Just as we have a hard time convincing our employers of the seriousness of our pain, I am afraid that some children may be experiencing more pain than we believe.
 
Perhaps clusters in some children present as migraine, and develop the classic symptoms as they mature.
 
There is so much to learn about ch.......................
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Re: Cluster Kids
« Reply #4 on: Apr 5th, 2002, 10:05am »
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Donna, you sound just like my mom.  My ch became evident at age 13-14.  Mom was also raising 3 kids.  Went to doctor, tests, etc.  No luck.  School ALSO thought i was trying to get out of school.  so much confusion and misunderstanding.  I am now 41 raising my own 3 kids.  Cluster Headaches continue to wreak havic on my life and the lives of my loved ones.  I wish my mom had a place like this back then.  I wish I had a place like this back then.  It is a blessing for us all.
Here is another thought:
I can remember (I was probably about 5 years old) laying on the end of my bed holding on to the posts SCREAMING in AGONY.  The memory is clear in my mind.  My parents thought I had ear ache.  Pain went on for about 1 hour and then fade away.  Eeery thought to think "what if it WASN'T an ear ache"...  My memory of these episodes is still so clear.  My children have had ear infections, etc.  I have NEVER seen them reflect pain to the degree I did.  
We have a long way to go.
Wishing you well,
Kim
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Re: Cluster Kids
« Reply #5 on: Apr 10th, 2002, 10:27am »
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Connor, my son (picture to the left), will fight the beast. He is now four years old....  He will scream run down the hall and then puke, cylce down and then repeat.  For him this will happen twice a year.  Mine are chronic I get mine almost weekly.
 
I am scared to have him start on meds at such a young age.....
 
--Athos
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Margi
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Re: Cluster Kids
« Reply #6 on: Apr 10th, 2002, 10:37am »
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So scary when the little guys have to go through this horrible affliction.  Poor little Connor.  I feel for you both.
 
We had another little guy here who's mom put him on a candida-free diet and she said he did experience some success in relieving his pain.  Basically, the candida diet is eating nothing white.  No flour, no sugar, no dairy.  As well, no yeast producing substances - raisins are bad for that!  Surprisingly, the flour is the most difficult to avoid, but it just might help your little guy if you can get him pointed in the right direction.
 
The candida involvement with clusters is still very much speculation at this point, but there are a number of interesting facts about how a candida overgrowth affects our general health.
 
With someone so young, using chemical meds is way too scary, in my opinion and a natural option should always be chosen first.  You may also want to look into the water treatment for him, but please check with your pediatrician first.  I'm not sure how it would aggravate young bladders, livers, kidneys.  
 
Hang in there, Athos - you're not alone with this.
 
Margi
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Re: Cluster Kids
« Reply #7 on: Apr 10th, 2002, 10:42am »
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Just a question for you, though, Athos.  You say your are chronic, but you get yours almost weekly?  Cluster headaches occur in a number of attacks per day, regardless if you are chronic or episodic.  The official definition of chronic is that you do not experience longer than a 2 week unmedicated pain free period in the space of 12 months.  
Also, I'm wondering why young Connor is vomiting...could it be migraine?  Vomiting is way more common in migraine and, although some clusterheads do report it, it's one of the determining factors in diagnosing between the two type of headaches.  Another way to tell is how long the headaches are lasting.  Clusters last, on average, of an hour or two.  Migraines can go on for days.
Just wondering and not wanting to give you the wrong kind of advice for the wrong kind of headache.
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Re: Cluster Kids
« Reply #8 on: Apr 10th, 2002, 10:42am »
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Thanks...... ------  It is one thing that I suffer, but it completly different to watch my child suffer  Cry
 
--Athos
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Re: Cluster Kids
« Reply #9 on: Apr 10th, 2002, 11:03am »
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Margi,
 
Quote:
Just a question for you, though, Athos.  You say your are chronic, but you get yours almost weekly?  Cluster headaches occur in a number of attacks per day, regardless if you are chronic or episodic.  The official definition of chronic is that you do not experience longer than a 2 week unmedicated pain free period in the space of 12 months.    

 
I get 3-4 headaches episodes 3-4 times a month I get a week break if I am lucky...   I got lucky once and had a 3 week break...  That was heaven.
 
I have not had Connor seen by a Neuro yet, just a family practice, and he was not very conclusive.
 
I have watched the way he acts, the screaming, the runnning and the rocking back and forth.  I to am sensitive to light and I vomit.  I know that those are more typical of migraines but I sat down for more than 3 hours with a neuro and discussed what mine were and they are deffinately cluster.  Some mis-informed doctors have mis-diagnosed me as migraine, or sinus trouble etc....
 
 
I would not rule out migraines for Connor since they run on both sides of my family.  I need to wait till he is a little older so that he can tell me more about them.
 
 
---Athos
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Re: Cluster Kids
« Reply #10 on: Apr 10th, 2002, 11:28am »
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Hi Again, Athos.
 
How did your doctor confirm that yours are clusters?  There is a cluster quiz in the buttons to the left here that really helps to determine for sure.  How long do your headaches last?  We are hearing more and more about doctors who are using cluster headaches as a catch-all diagnosis for head pain they can't explain.
 
I'm a migrainer, and your frequency, light sensitivity and vomiting really DO sound more like migraines of some form.  My husband is a clusterhead and he does not go through any of the symptoms I do, when he is having a cluster attack.  Light sensitivity is not an issue, no nausea and he gets hit every day, multiple times, but has total pain freedom between attacks.   To me, the the real tell-tale difference is the length of the headache.  Clusters go from no pain to horrendous pain back to no pain in the space of a couple of hours.  Migraines don't.  Migraines begin with an aura, pain escalates slowly and stays high for 12-24 hours (or more) and then gradually fades.
 
Don't get me wrong, migraines hurt like hell and totally disrupt your life too.  It's just real important to treat your head pain with appropriate meds.  What works for one doesn't necessarily work for the other.
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Re: Cluster Kids
« Reply #11 on: Apr 10th, 2002, 12:47pm »
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Margi,
 
I get 3-4 headaches in one day that last 2-3 hours each. I get these "episodes" 3-4 times a week.  The pain is always behind the left eye, it build to excrutiating in a matter of 15 min.  My left eye gets blurry and tears...  I will rock back and forth, hit myself, bang my head on the floor, scream, cry, and beg God for death or mercy.  
 
Each attack will have a cycle that the pain will increase and then decrease, increase more then decrease, so on and so on till it peaks and then drops off in the same manner.
 
The doctor that I spoke with is a Neuro from the Mayo Clinic Arizona Dr. Black and Dr. David Dodick.  Dodick is an international recognized headache doc.  They questioned my for over 3 hours and told me that I had chronic clusters....  They started when I was 18.  Only a a couple episodes a year, then they kept getting worse.
 
I know that the nausea and the light sensativity are atypical, and I am sure that is why many have mis-diagnosed me in that past.
 
Migraines have plauged my family on both sides, my mother, her father, his mother. My fathers mother etc... So far I am the only one that has the symptoms that I have described above....  They have all run and laid down in a quiet room not moving....  I could no more sit still than if someone was ripping off my fingernails.  Noise does not bother me as it does my mother when she has her migraines.
 
 
--Athos
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Re: Cluster Kids
« Reply #12 on: Apr 10th, 2002, 12:56pm »
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Yep, Athos, I'd sure say that that's clusters.
 
I just didn't interpret one of your other posts the right way and thought you meant you were only getting 3 or 4 attacks a month.
 
Have you tried oxygen as an abortive?  It may also help your son. That's one of the things that does help clusters AND migraines (until you can know for sure what he has).
 
I wish you peace and pain freedom.
 
 
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Re: Cluster Kids
« Reply #13 on: Apr 10th, 2002, 1:00pm »
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Thanks.....
 
 
--Athos
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Re: Cluster Kids
« Reply #14 on: Apr 24th, 2003, 10:46am »
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Hi I'm a mom that needs to know that kids can deal with this. If anyone wants to talk let me know. My 14 yr old daughter has had these since she was 6 years old. We deal with them the best we can but it would be nice to have others to talk to about this beast. Thanks in advance.
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My daughter has had these headaches since she was 6 yrs old. We are still learning about them and would like to know others with the same problem. Thank you!
Margi
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Re: Cluster Kids
« Reply #15 on: Apr 24th, 2003, 11:21am »
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Lizzie's Mom, I'm going to copy and paste your post into a new thread, ok?  I just don't want it to get buried under this heading.  Hope you don't mind...
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Re: Cluster Kids
« Reply #16 on: Apr 24th, 2003, 11:23am »
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I don't mind at all. Thank you very much. Smiley
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My daughter has had these headaches since she was 6 yrs old. We are still learning about them and would like to know others with the same problem. Thank you!
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Re: Cluster Kids
« Reply #17 on: May 31st, 2003, 10:18am »
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NHNI's FAQs had good advice I needed to deal w/ school.  School Nurse was constantly calling me to pick Cammie.  Took call from Pedio Neuro nurse to "communicate" that what he needed most was normalcy.  It was very frustrating, nice to have the same thing posted in plain english from another authority.
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Re: Cluster Kids
« Reply #18 on: Dec 18th, 2003, 12:15am »
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You can definitely have photsensitivity with CH.  I have it sometimes but not all of the time, maybe 1/3 of the time.
 
Intense pain from any source or cause can create nausea, and some meds can cause nausea.  I usully have some nausea with a 9-10.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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