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Teen Clusterheads Click Here! (Read 23890 times)
UnderTheRadar
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Re: Teen Clusterheads Click Here!
Reply #25 - Jan 6th, 2009 at 5:00pm
 
Welcome to the site!  You'll find a lot of good support and the latest information here...can you tell us a little more about yourself?  what treatments have you tried?  What works/doesn't work for you?  Glad to have you here!
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Felicia
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Re: Teen Clusterheads Click Here!
Reply #26 - Jan 6th, 2009 at 5:47pm
 
Yes welcome! Welcome home. I'm glad you found the site and I apperciate the help. Even though you're technically not going to be a teen soon, I'm still here to help as always. All new comers are always more than welcome to message me. But UnderTheRadar is right, please do tell us some more about yourself so that we can do the best we can to help.

Broken

P.S. Gizmo, thank you for the b.day bump. Smiley
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I won't let myself down even if it means I can't make you proud. Its my life I gotta do what I feel is right. No one can stop me now. This clusterhead child is gonna show the world how
Felicia They.Call.Me.Alice little_black_flame@yahoo.com  
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livin on pins
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Re: Teen Clusterheads Click Here!
Reply #27 - Jan 6th, 2009 at 11:58pm
 
Hey, I used to take verapamil but that really didn't help at all. Right now I'm taking topomax which seems to help with the intensity, and in the beginging the frequency but they soon came back to their regular times. It still helps with the intensity abit so I'm still taking it, and I also have maxalt for my "day longs". Like alot of people I've found that drinking alot of water helps, cooling my body down quickly seems to help, if I feel one coming on and I can go do some intense excersie sometimes that can abort it, but othertimes it just makes it worse. Those are the only things I can think of that make a difference at all. As for me I go to Guelph University in Guelph, Ontario, Canada, taking Bachelor of Science majoring in plant biology, grew up in Northbay On, lol not much to tell really im a pretty boring guy
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UnderTheRadar
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Re: Teen Clusterheads Click Here!
Reply #28 - Jan 7th, 2009 at 9:47pm
 
Plant biology?  then you should check out clusterbusters.com... I'm sure you'll find the science behind it very interesting!  It has saved many a clusterhead's life, including mine.  Wink
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Danielle
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Re: Teen Clusterheads Click Here!
Reply #29 - Jan 8th, 2009 at 1:36pm
 
hi im 19 so im still a teenager  untill september this year and i have been suffering from cluster headaches since i was 16 but it could of been even when i was younger but i don't really know if that was what it was then but now it is i was diagnosed last year in november as my GP sent me to hospital as he couldn't do anything for me.  just thought i would reply back to your post x
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Felicia
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Re: Teen Clusterheads Click Here!
Reply #30 - Jan 8th, 2009 at 4:26pm
 
Welcome Danielle. I'm glad you found us. I'm sorry you had to suffer so long alone and not knowing but hopefully some of the people here can help you with controlling that pain. Any questions, don't be afraid to ask!

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I won't let myself down even if it means I can't make you proud. Its my life I gotta do what I feel is right. No one can stop me now. This clusterhead child is gonna show the world how
Felicia They.Call.Me.Alice little_black_flame@yahoo.com  
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Felicia
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Re: Teen Clusterheads Click Here!
Reply #31 - Jan 11th, 2009 at 8:57am
 
Thank you DJ/Stephine! Smiley

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I won't let myself down even if it means I can't make you proud. Its my life I gotta do what I feel is right. No one can stop me now. This clusterhead child is gonna show the world how
Felicia They.Call.Me.Alice little_black_flame@yahoo.com  
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gizmo
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Re: Teen Clusterheads Click Here!
Reply #32 - Jan 11th, 2009 at 10:04am
 
I believe it was Steph.

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midwestbeth
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Re: Teen Clusterheads Click Here!
Reply #33 - Jan 15th, 2009 at 2:14pm
 
YEA!!!  You got a sticky!
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CaseyBart
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Re: Teen Clusterheads Click Here!
Reply #34 - Jun 1st, 2009 at 12:00pm
 
Hey I'm Casey. I'm 18 and was diagnosed with CH a couple months ago. I've been having these headaches for as long as I can remember but just in the past year or so they've been coming everyday in the exact same spot. That is what led me to going to the doctor. I'll be going again in about two weeks and my PCM (primary care manager) will most likely be sending me to a neurologist.
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doncey
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Re: Teen Clusterheads Click Here!
Reply #35 - Jun 2nd, 2009 at 1:04am
 
Heya Casey, pleasure to meet yaa.. Sorry to hear of your diagnoses, but I figure its the first step to managment. Ive been a suffer for 14 years, and I must say this site (and a couple others like it) are a blessing. Im still learning new things to try that you would otherwise be un aware of. Stay strong and I hope the doc's act fast in your case and get you on the right track of managment.
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Re: Teen Clusterheads Click Here!
Reply #36 - Jun 20th, 2009 at 10:46pm
 
After a year my doctor finally sent me to a neurologist and i was diagnosed with CH...i was on amitryptiline for a while, which did nothing. The beginning of the year i started getting severe headaches everyday in the same spot. No one seemed to understand how bad the pain was, but now that i've showed them this website i think they understand a little better. I just had a 20 day dose of prednisone and i'm on 1000 mg of depakote a day. Prednisone helped, but now that i'm off them my headaches are worse. I also have imitrex injections but i'm only getting 12 a month and i've used 3 already. Those work great. My doctor won't give me oxygen, and i don't really know if that works??? Thanks for your help Smiley this has definitely been a tough ride
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Felicia
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Re: Teen Clusterheads Click Here!
Reply #37 - Jul 5th, 2009 at 11:05pm
 
Hello to all those that I missed. I am still here I've just been crazy busy. But if any one needs me PLEASE pm me or email me or something. I check it as closely as daily as I can.

Casey, any news? What did the doctor say when you went back? Did they get you to a neuro? I hope so. Please let us know.

Jessica, is there a reason your doctor won't give you O2? I apologize for not getting to your post sooner. Please update when you can.

Again sorry every one. I am still here and I am watching. Always ready to help those I can.

Felicia
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I won't let myself down even if it means I can't make you proud. Its my life I gotta do what I feel is right. No one can stop me now. This clusterhead child is gonna show the world how
Felicia They.Call.Me.Alice little_black_flame@yahoo.com  
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Jessica
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Re: Teen Clusterheads Click Here!
Reply #38 - Aug 19th, 2009 at 1:15am
 
He wouldn't  give me oxygen because he's never given it before for CH. I FINALLY convinced him, but then we found out my insurance wouldn't cover it...
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Kassi
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Re: Teen Clusterheads Click Here!
Reply #39 - Oct 10th, 2009 at 3:24pm
 
Hello. I'm just another teen with CH's. I'm 18. Just wondering if anyone had any advice on how to get through to the teachers at high school when they don't believe me.
Thanks.
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Tweeg
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Re: Teen Clusterheads Click Here!
Reply #40 - Oct 18th, 2009 at 9:11am
 
Im 23 but i cosider myself a teenager also Cheesy
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Orothe
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Re: Teen Clusterheads Click Here!
Reply #41 - Nov 3rd, 2009 at 3:16am
 
Hey there. I'm 19 (20 on Nov 14th) and my specialist said I had Cluster Headaches. Though I think it's just because I fit a lot of the symptoms. I do get bad headaches quite often, even to the insane level where I can't do anything but wince and cry and wait for it to subside. Pain Meds do very little, if anything. I usually take some just on the off chance it WILL help. I did try Imitrex but that was just too expensive, and there was no way I could keep up with the amount that I'd need anyways. So I just decide to rough it and get use to the pain.

But where as people seem to have cycles, I have a low 24/7 headache. It's always there, and I don't get numb or completely use to it. Sometimes it gets better, sometimes it gets worse. My headache spikes sound like the equivalent of 'cycles'.

Anyways, I'm on Propanolol (sp?) as a preventative and it's kinda worked. My specialist has had to increase the dose a couple times but I've reached my limit. My blood pressure is low enough that he was suprised I haven't fainted yet (Which almost happened once, that's for a different time.)

Anyways.. This is my very first post, and I'm here to help more than be helped. I do know how it feels to have insane headaches where nothing will work and nobody can help and your helpless.. But I've handled my own headache since I was around 13 so I'm not really looking for any advice. I've pretty much given up and chosen to fight back with just my pain tolerance... Yay for stupid male stubbornness that shall soon be the death of me! lol
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Re: Teen Clusterheads Click Here!
Reply #42 - Nov 29th, 2009 at 4:41pm
 
Hi my name is Andi and I am new to this... i've been suffering from unexplainable headaches for about 7 or 8 years. im 17 now and my therapist says i am a walking bill board for cluster headaches. so im going to see a neurologist. i also suffer from bipolar disorder. my doctor suggests i should take lithium cause it helps with both. i,ve taken lots of different medicines. and i've heard bad things abouy lithium. the medicines i take already make me sick... i just need help with all this.

thanks
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Felicia
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Re: Teen Clusterheads Click Here!
Reply #43 - Nov 30th, 2009 at 2:38pm
 
Welcome home Andi. I posted on your thread in generals. That will give you my song and dance. If you need anything, PM me or email me or something. I'm here to help.

~Felicia.
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I won't let myself down even if it means I can't make you proud. Its my life I gotta do what I feel is right. No one can stop me now. This clusterhead child is gonna show the world how
Felicia They.Call.Me.Alice little_black_flame@yahoo.com  
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Felicia
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Re: Teen Clusterheads Click Here!
Reply #44 - Nov 30th, 2009 at 2:48pm
 
Kassi wrote on Oct 10th, 2009 at 3:24pm:
Hello. I'm just another teen with CH's. I'm 18. Just wondering if anyone had any advice on how to get through to the teachers at high school when they don't believe me.
Thanks.


I am so sorry I missed your post. But hopefully you're still around and I can help.

Teachers get a lot of crap and often don't believe it when some one is in real pain. It's part of the game they have to play. Unfortunately that makes it hard for us. The only way to get them to listen maybe getting a doctor's note, stating that these things are real and are insanely painful.

There should be a letter to co-workers/bosses/family/etc. on the left side of this page. That can work too.

I know its hard trying to function with these things but life must go on. You cannot let them rule your life. If you need help turn to the board. Usually some one if not more than one person knows exactly what you're going through and can help. We're all here to help.

For further refference if any one would like to contact me specifically and I don't get back to you in a few days on the thread, PLEASE send me a PM. I will most deffinately answer that within a day or two. Keep fighting guys! Good luck Kassi.

~Felicia.
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I won't let myself down even if it means I can't make you proud. Its my life I gotta do what I feel is right. No one can stop me now. This clusterhead child is gonna show the world how
Felicia They.Call.Me.Alice little_black_flame@yahoo.com  
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Re: Teen Clusterheads Click Here!
Reply #45 - Dec 15th, 2009 at 5:03pm
 
hey alittleconfused, ive heard alot about lithium aswell and i might have to start taking it soon too because my meds are no longer working for me and my doctor said that was the likely next step for me. All i can say is if you do decide to take it to monitor yourself carefully, keep a log book of your mood and headaches and other symptoms because its a pretty heavy drug. Sorry i couldnt be more helpful.
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Tortured  Tom
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Re: Teen Clusterheads Click Here!
Reply #46 - Feb 7th, 2010 at 5:37am
 
Hey Guys,  Cluster Kid, I like that.  I'm 16 and only just diagnosed (About 3 weeks ago).  I've been put onto Pizotifen (a drug used for prophylaxis usually in migraine) 0.5mg per night.  I swear down that I've already built up a tolerance, I know it's a very weak dosage. This Tuesday (my next appointment) I'll probably have it doubled (I like to know what will happen and pretty much plan my own treatment).

I don't see a neurologist, I see a GP (I'm British btw).  Should I be asking to get transferred?  I saw another cluster-head in the UK (Blackpool).  That's close to me.  I was wondering if he is a member..?
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Re: Teen Clusterheads Click Here!
Reply #47 - Feb 7th, 2010 at 7:52am
 
You absolutely must see a neurologist. It's inexcusable that your GP hasn't referred you as someone of your age with pain of this severity should not be treated so lightly. I'm appalled.

You need an MRI to rule out other conditions and you need an expert diagnosis as the drugs used for CH are pretty grim and I wouldn't want you having them without an accurate diagnosis.

Doctors spend an average of 5 hours learning about headache in medical school with the biggest emphasis on migraine and tension headaches. There are over 600 types of headaches and frankly, it takes a specialist to decide precisely which variety you have as many symptoms overlap.

The group of headaches clusters are a part of are called TAC's or Trigeminal Autonomic Cephalalgia's. The differences between them are very subtle and easily overlooked but mean dramatic differences in drugs used and their efficacy.

It is your right under the NHS guidelines to see a specialist in the condition you are suffering from. In your case it's "headache" or neurological and as such you need to see a headache specialist neurologist.

I know I sound like a stoppy know it all but I really can't stress this enough. It's so important and you having an MRI just can't be overlooked. It's essential.

Let us know how you get on okay?!
Helen
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Tortured  Tom
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Re: Teen Clusterheads Click Here!
Reply #48 - Feb 7th, 2010 at 8:18am
 
Thanks for the very quick reply  Smiley. I'll ask to be referred on Tuesday.  I'm glad you pointed that out, I wasn't really bothered because I didn't see a reason to be.  Thanks for pointing it out.
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Felicia
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Re: Teen Clusterheads Click Here!
Reply #49 - Feb 7th, 2010 at 12:17pm
 
Welcome Tom. I'm glad you're going to get help and have found us. But don't just ask to be transferred. DEMAND IT!! There is no choice. Helen's right. You must know that this is what you have to get the proper treatment. An incorrect diagnosis could cost a lot of time, money, and pain. The sooner you get transferred the better.
We all hope and pray that you do not have CH but if you do then there's things that can help. If you need some one to talk to, that's what I'm here for(as I'm sure you can see from other posts). There are people here that would love to help and get you as much information as you can handle and more. Trust me.
Anywho, welcome home. Keep us in the loop please. Luck and love to all.

~Felicia.
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I won't let myself down even if it means I can't make you proud. Its my life I gotta do what I feel is right. No one can stop me now. This clusterhead child is gonna show the world how
Felicia They.Call.Me.Alice little_black_flame@yahoo.com  
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