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Barak
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Need Friends...
« on: Jul 20th, 2006, 9:40pm »
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Hi im Barak im not a parent but i am 16 suffering from cluster headaches and I really feel like im the only kid that has to go through school or life in general with this horrible beast i was just wondering if you knew anyone around my age i could talk to? please i really need someone to talk to im feeling pretty hopeless and ive been told that finding someone my age may help.  
 
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Re: Need Friends...
« Reply #1 on: Jul 20th, 2006, 10:07pm »
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Hi Barak,
Sadly you're not the only kid in the world, I'm not the only parent of a kid with CH either - I wish none of us had to go through this but especially not kids.
My little boy is four so he's a bit too young for you to talk to but hang in there and check back. There are other's here with kids of around your age who will be responding to you.
Tell us a bit more about you, how long you've suffered, what meds you use? How they affect you etc. Lets see if there isn't something we can do to help.
Your parents are welcome to come along too y'know.. we'll help them all we can. As a sufferer myself as well as a parent I know how tough it is from both sides of the fence.
You're not alone with this,  don't ever feel like that hon, we'll get you AND your family through this I promise.
I never make promises I can't keep either.
Wishing you pain free time
Helen
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Re: Need Friends...
« Reply #2 on: Jul 20th, 2006, 11:16pm »
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thank you Helen. Well my parents have issues and arnt around a lot anymore and i end up making all my appointments and two hour trips myself t oget things taken care of.  I suffer at night time and well ive had these headaches since i was seven and i continues to have themtill i was 13 and somehow i managed three years of remission and they have come back and they are actually twice as bad now as they were then. maybe being older has something to do with it.  right now the only thing i use is oxygen when i have it and the red bull energy drink works for me actually. not al lthe time but enough for me to keep using it. im doing research currently on different mediccines so if you have any advice i would love it. im brand new to the site and have tried topics in other places and sorry if im in the wrong place but i figured this would be a good place to try. well i hope i covered your questions. im preparing for an attack right now so im going to head out. please write back its nice talking to someone.
 
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Re: Need Friends...
« Reply #3 on: Jul 21st, 2006, 5:08am »
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Barak I'm always ready to chat hon!
I'm sorry you have so much on your plate, you're obviously a tremendously strong person and I'm in awe of how much you cope with so young - I shall look forward to seeing the man you become because you're going to be a force to be reckoned with  Smiley
 
I use O2 as my main abortive as well. Its the only abortive I will allow my son to use, it works extremely well for him and also extremely quickly. This may be because of the ClusterMasx we use. Both Jasper and I can abort a hit with O2 in under ten minutes no matter how far along it has got.. obviously as you know the sooner you get on it the better and we can abort in under five minutes if we are ready for it. If you would like one let me know.
 
Red Bull works for me too. The colder the better seems to help and drinking it fast (its truly disgusting though don't you think?!) I find chugging fizzy drinks that fast hurts to swallow, if you find the same problem you can pop a tin and leave it in the fridge open. Others say stirring a spoon of sugar into it works too but I don't have time for that - when I want it I want it NOW! Decanting it into an insulated drinks bottle works for while you're away from home too.
 
Have you tried melatonin? At your age it would generally be safe for you to try. It is particularly useful for those who get more night time hits and alot of people here have had success with it. Obviously I'd discuss ANY treatments with your doctor before commencing them as we haven't a clue about your medical history and we don't know if you have any contra-indications for it.
 
How long typically do your cycles last? This is so I know what other potential treatments to mention. Obviously all we can do is recount our experiences - none of us are doctors but most of us ARE expert patients  Wink
 
Have you ever tried any Triptan drugs? If so which ones?
 
I don't know how understanding your friends and teachers are but this letter might help. Feel free to print it off and distribute. http://www.ouch-us.org/chgeneral/colleagueletter.htm
 
As you can see it comes from the OUCH US website. Take a look. They exist purely to help us, they are us, WE are US! It's down to all of us to fight this thing and we need you too. Go along and join, its free and it could be one of the most empowering things you ever do.
 
I'll stop here for now.. but I'm by no means done! I'm just trying not to overwhelm you. We'll give you all the information and all the support you could want.. you're one of us now hon, you have a whole new family to add to your existing one  Grin
 
I'll look forward to hearing more from you!
Helen  
 
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Re: Need Friends...
« Reply #4 on: Jul 21st, 2006, 10:23am »
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Well, I am no longer 16 Shocked but I remember what it was like to be 15 and in school with this beast.  I agree with Helen about trying the melatonin.  Even if it just herlps at night, at least you will get a good nights rest and be stronger during the day.  Also, have you tried a school guidance counselor.  I know it is not "cool" to talk to them, but some are so ready to help.  Just print out the letter Helen referenced above and bring it to them.  Or maybe a coach or a friend's parent.  Good Luck and we are here if you need to talk.
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Re: Need Friends...
« Reply #5 on: Jul 21st, 2006, 11:42am »
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Hi,  
 
My son has clusters, I will send him along in just a bit. He is about your age.
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Re: Need Friends...
« Reply #6 on: Jul 21st, 2006, 1:07pm »
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Thank all of you a lot I feel better already. As for the melatonin I've been doing research im im going back to the doctors today so we will see what i can get accomplished there. As for another question If my cycles stay the same as they use to be (ive heard they can change) i will be in cycle for about 5 months Sad but remission i have no idea one. and i happend to think redbull is rather good lol i dirnk it before every concert works wonders and had no idea that someday it would be saving my life lol. well i need food before i make my way to the doctors i think i will try giving my mom that letter you gave me helen she seems to have trouble understanding or wanting to accept that i have this problem even though i have been diagnosed before but shes rarely home like i said so we'll see. thank y oufor your support and i will back back. thank you everybody PF wishes to all. oh and thanks helen i dont think i am that strong but i do what i have to keep my head in the game but that made me feel pretty good.
 
Barak
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Re: Need Friends...
« Reply #7 on: Jul 21st, 2006, 2:40pm »
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Barak honey you have to be strong when you have clusters even with the best support in the world. Trust me when I say you're phenomenal.. I don't say that often  Smiley
 
You'll find a whole family of surrogate mum's here and I'm first!
 
In fairness to your mother its an awful thing for us to accept when our kids have such a terrible affliction, I can sort of understand her wanting to stick her head in the sand.. but it's not a choice. The greatest pain I've ever had hasn't been a Kip10, its been seeing my son get hit. No parent should have to see that any more than any kid should suffer it. We bring you into the world though and it's our job to fight your corner.
Show her the letter, let her walk a mile in your shoes.
 
I'll be here all evening now waitin to see how you get on at the doctors today - Good luck!
Helen
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Re: Need Friends...
« Reply #8 on: Jul 21st, 2006, 10:51pm »
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Hey ya Barak. wave I understand what your going though. I'm 14 and though I don't suffer from CH myself, I support two and have had migrains since I was about 9 or 10. My father has had CH since I was about 7. I get the whole thing about your mom not wanting to except your problem. My mom doesn't want to believe that I might be getting clusters along with my migrains. Angry But then again no parent wants to watch their child go through any kind of pain and know that there's nothing that they can do to help them. Cry well anyways, if you ever need anyone close to your age, pm me any time. I won't always be able to reply right away but when I can I'll get back to you as soon as possible. Hope to hear from you soon.
 
Always,
Felicia  Cool
 
P.S. Don't forget to check out the main board for every day posts. You'll probably get some more repiles if you ask the people in there. Some of them really know what their talking about. Later! Smiley
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Re: Need Friends...
« Reply #9 on: Jul 22nd, 2006, 12:01am »
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Hello again! Yet again im up late. Well I went to the doctors today and i finnaly got refered to the specialist a couple hours away. I have to drive ther by myself but I dont care at this point. Do you have any advice for nailing this into my moms head. I tried asking her to take me to town today for redbull because my car was being retarted and we ended up getting into a fight because she didnt think i should try it because "it just wont work" and shes tired of me yelling and complaining all the time. i try to tell her how bad it is but she just wont believe me. I also tried to get her to come here and ask questions but that didnt go over to well either. I figured at least getting her to read some content on here would break her down, i sure as hell know it had me in tears just reading some of it but she says we will see and then goes back out to town. i dont know now im venting im sorry i didnt mean to. I have to go take an MRI and get a cardiogram becasue there is something about a possible hole in my heart and circulation issues that may be leading to the headaches theres a lot of what ifs im finding out. so i will take all roads i can to find the answer for me. right now a drug called melatonin is looking like my best bet. another thing. my pain seems to be escalating and  ithoguht it was unbearable before.... does this mean it will keep getting worse or eventually stop getting worse? well i think ive made this thing long enough for one go and ranted enough for my part. i will talk to you all later. thanks for the support. PF days for all!!!
 
Barak
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Re: Need Friends...
« Reply #10 on: Jul 22nd, 2006, 6:22am »
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Hello again Barak,
I'm so sorry you're still having difficulties explaining this to your mum. We do have a Family Services Team at OUCH US and I'm going to get them to contact you via this thread to see if they can offer any suggestions. They are lovely lovely people, Jackie is a supporter as well as a mum and Linda is a sufferer as well as a mum. Cathi is one of our most awesome supporters going so I'm sure those cluster angels will be able to come up with a strategy for you! I'm sure without a doubt that you've already read many of their posts even if you didn't realise it.
 
We're here for you to vent to any time you need it, we all do it, we all help each other out and you're no exception!
 
There has been a lot of talk about hole-in-the-heart and migraine and a condition called Patent Foramen Ovale or PFO as you know how we love to abbreviate things! I've heard conflicting reports as to whether this is a blind lead or not but it will never hurt to have it checked out. Knowing you, you'll be researching it yourself  Smiley
 
As regards it getting worse - as a Chronic I can tell you that I do get a "cycle" within my usual pattern of hits. Every 5-6 weeks I'll get a week to 10 days where my hits are both more frequent and more intense.
 
People who are episodic often report that they have a last blast from the beast before their cycle ends. Think of it as the death throes of your cycle hopefully!
I'll certainly be keeping my fingers crossed that that is what it is honey.
 
Hope you're having a great weekend, you just keep going as you are, you're an inspiration  hug
Helen
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Re: Need Friends...
« Reply #11 on: Jul 22nd, 2006, 7:51am »
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Hi Barak,
 
I started my clusters when I was 13 years old, except back then nobody knew what clusters were. I used to think I had a brain tumor or something.  
 
Lots of great folks here who can relate to your situation even though we're different ages.  
 
We all have one thing in common, .......................pain Wink
 
Helens right, all of us episodic clusterheads will "peak" in our cycle, then they start to subside and eventually go away again Wink
 
Move around the board and don't be afraid to ask any questions Cheesy
 
Hope you can get some relief soon,
 
Sean..........................................
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Re: Need Friends...
« Reply #12 on: Jul 23rd, 2006, 10:30am »
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Hi Barak! Grin
 
Check your PMs... ok?
 
 
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Re: Need Friends...
« Reply #13 on: Jul 23rd, 2006, 10:29pm »
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   Barak,  
 
   I just read your post and without even reading anyone who answered you I've got to say I admire you for stepping up and asking for help.
 
We here know all too werll what you are going through.  We can be and want to be your extended family where you can ask questions, or just talk to us about what you are going through.   I am the chair of Family Services and I have another kid on my team who will be glad to help.   He's 15  with your permission I will have him contact you.
 
Hang in there sweetie.
 
Linda Howell
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Re: Need Friends...
« Reply #14 on: Jul 23rd, 2006, 11:05pm »
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Hey, Barak.
 
sorry to here that you have CH.  My mom is a sufferer.  It's not easy watching her get hit.  One night last year, she passed out from three back to back hits.  That scared the heck out of me.  
 
Being part of family services, i want to help you by being a friend, supporter, someone you can come to.
 
My name is Dylan, and i'm 15.  If you need to talk to me about anything, just email me, ok?  What are your favorite things to do?  I'm a gamer, into drama like acting and stuff, and play the trombone.  I'm in Taekwondo, too.  
 
here's my email:  Black_heaven345@yahoo.com
 
I may not suffer, but i can understand how you may feel alone.  Just remember, you aren't.  
 
I'll be a friend who understands.
 
We're all family now, you can turn to us whenver you need us.
 
Here's to many PFDAN's.
Dylan
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Re: Need Friends...
« Reply #15 on: Jul 26th, 2006, 9:10am »
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I gave my son your my space url. He just added you last night.  
 
He is almost always up late taking with friends, so if you need him you will know where to find him.
 
Lots of love, Gena
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Re: Need Friends...
« Reply #16 on: Jul 26th, 2006, 11:33pm »
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Barak, not sure if you can get ahold of it locally, but please consider Kudzu as a possible preventative (under your doctors supervison of course).  Check out the meds section of the site to read up more on it (there are sticky threads at the top).  I used it myself last cycle and was pretty happy with it.  
 
Here's a link to Flo's (Floridian) site you can research too: http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Kudzu
 
You're not alone and we all understand here.
 
hugs,
Smileymel
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Barak
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Re: Need Friends...
« Reply #17 on: Jul 27th, 2006, 12:14am »
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thank you melissa. i looked up kudzu a while back and im still trying to get around to narrowing down all the possible medicinces to the ones im msot comfortable with and trust the most theni have to actually get to a doctor one of the very few around here who actually know what they are talking about and msot of the time it requieres me driving two hours by myself lol. but since you recomend it so well ill bump it up in my list. thank you for the advice i wish you many PF days. thank all of you for the advice i feel like [art of the family now thank you.
 
Barak
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Re: Need Friends...
« Reply #18 on: Jul 27th, 2006, 12:49am »
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Hi again, Barak.  Smiley
You should print the link that Melissa gave you, and discuss it with your dr. My only concern about kudzu, is that it contains a small amount of phyto-estrogens. These are plant based, and natural however. At your age, I'm not sure it would be a problem (as it would in younger, developing males) but it's worth discussing with your doc.  
pain free wishes, nani
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Re: Need Friends...
« Reply #19 on: Jul 28th, 2006, 1:32pm »
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Hi Barak.  
Helen had told me a bit about you, and I'm sorry you have to deal with CH in your life at such a young age. My first cycle started at 17, so I can't imagine starting younger than that.  
I added you to my myspace friends and sent you a message on there. Helen told me you are a musician as well. Been playing multiple instruments for over 26 years now, with my main instrument being lead guitar.  
 
If you ever need to talk to somebody just message me. I know how rough having CH is, and how the lack of understanding from those around you can really affect you. Just keep hanging in there and remember: music isn't just an escape, it is a gift.  Wink
 
Peace,
Carl D
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Re: Need Friends...
« Reply #20 on: Aug 31st, 2006, 8:41am »
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hey all. im sorry for being gone so long. school started for me and ive been in remission!!! well im pretty sure i am as of a couple days ago and i havnt seen helen online Sad haha so maybe ill see you on here to tell you. well yeah i started and ive been all over the place busy since then with friends and concerts and food and sleep lol. thanks to all of you for helping me through my initiation back into the CH world im sure this vacation will end maybe in a year or a month but im not worried because i know i have someone to turn to for help. if anyone readin this ever wants to talk about it or anything at all or needs help just message me or my email is putanme89@hotmail.com if yo usee any kids needin help or anything please pelase send them my way im ready to do my part for them and everyone else. well i need to go to school so i guess thats all and ill leave this thread to the mothers who need to use it. thank you alll once again your my family now whether you want me or not lol. talk to you soon!!! <333333333
 
Lots Of Love
Barak
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Re: Need Friends...
« Reply #21 on: Aug 31st, 2006, 11:41am »
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Now Barak you know I've adopted you and I'm never letting you go!
I'm delighted with your news honeybun, I've been down at my friend Lisa's for a few days so I haven't been online but I'll look for you for a chat later.
I hope your remission lasts forever!
Either way I'm proud to know you and I think you're an inspiration to us all
lots and lots of love
Helen
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Re: Need Friends...
« Reply #22 on: Sep 5th, 2006, 3:55pm »
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Hey ya B. Glad you're finally getting some relife. I know for a while there you were wondering if they'd ever stop. Anyways, I think what you're doing is great. There are a lot of parents and kids out there that need help dealing with this beast. We all try our best but some times you need some one your own age (or at least close to it) to realize you're not alone, as you may remeber Wink. You're very smart and if any one needs you're help I know you'll be there. You always have been for me. T2ul!
 
Always,
Fleicia  Cool
 
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