Hey guys. I'm Felicia and basically I'm the teenage welcome wagon. I've been a supporter since I was 7 and now, almost 10 years later, I'm here at CH.com to help teens who suffer or support some one with CH. I know it's not easy to always understand the adults here, and some times you just don't want to be talked down to. Trust me I been there. So I'm here for the Cluster "kids". It may be easier for you to talk to me than to the others. Anyways, I'm just here to help. Only thing is there's a LOT of posts to go through on here and I just don't have that kind of time. What I'm saying boils down to this: If you want, I'm here to help, listen, whatever. Leave me a message in this thread or shoot me a PM and I promise I will try to get back to you as soon as I can. This is a long fight that you're in for but you've found your way home. That's what this is and it's the first step in your survival with the beast. Welcome to all and hope you're around for a very long time.

Broken(aka Felicia)

You are a sweetheart Felicia.   The only teen aroun d here that I am aware of is here...on the CH specific  board.  He is convinced that narcotics are the way to go.   Maybe you can talk to him.

 
Quote:

OfflineX View ohioterpes's Profile Send PM to ohioterpes Send Email to ohioterpes ohioterpes CH.com Newbie Offline I Love CH.com! Posts: 11  cluster headaches and finals Dec 9th, 2008, 1:43pm     hey i am 18 and have had cluster headaches since i was in the 7th grade, i am now a freshman in college and i have just been hit with another attack. only problem is i have finals this week and reading is well you know. with me the only thing that relives my pain is opiates such as vicoden or stadol injections, fallowed by a injection of steroid and a round of oral steroids. however i am away from my nerologist and am unable to get these shots until after my exams are over and i manage to drive back home. i was woundering if anyone had tips on dealing with the pain with out being on an opiate for the pain but still be able to focus on an exam for 3-6 hours?   Back to top

Linda
 

JrBrew is 17 and a supporter - does that count?

Of course that counts Pat.   I was just assuming Felicia meant she wanted to be there for teens with CH.    My bad.


Linda

Of course JrBrew counts. I've actually talked to him a few times but have since lost touch. Tell him if he would like to talk I will gladly give out email or IM so that we can do so. And Linda I will try to talk to ohioterpes but I can't make any promises. I'm not trying to change people's minds if they don't want to be, I'm just here to make suggestions and refer them to others who know what they're talking about. Whether they listen to me or not is up to them. It's the best I can do.

Broken

Bump. Could some one please give this a sticky so I don't have to keep doing this? It won't do any good if it's 20 pages back by the time some one who needs it finds us. Thank you.

Broken

Felicia,    Only DJ or Steph can sticky  something like what you're talking about.   Being almost PC illiterate...here is what I woul;d suggest.


In the supporters board there is already a thread that is locked under Children as supporters by Margi a long time ago.

Maybe you can copy and paste your welcome wagon post to there.  At least it will be there for always.

I will keep note of it and keep adding or bumping it...Hows that?

Thanks Linda. I might post it there too but I would really like to keep it towards the top here so that those who are first coming to the site will find it asap. I think it's important that the people who are probably the most confused, scared, and alone(aka teens) when they find this site get the most help they can as quick as they can.

Broken

A bumping we will go.    ;)

Bada bump! ;D

Broken

Once again, bump.

Broken

Another shameless bump

Oliver

Hey, Im also a teen and on here (although only till January) but ive been a long time lurker since i was diagnosed about 5 years ago. Just thought id post and say im happy to lend any advice i can to anyone but especially to any UK teens who find themselves having to deal with all the problems our education system has ect.

Also in the mean time - BUMP


Luketd

Thank you Luketd. The help is apperciated. Wish I had found you a little sooner though beause it would have been nice to talk to you and so you didn't have to be quite so alone. Better late than never though I suppose! :)

Broken

Bump.

Broken

Bump.

Broken

To the top.  again. ;)

Hi Felicia,

I love your avatar.  I actually have that pinned to my bullitan board in my kitchen......found it years before ch; it holds much more signifigance since the beast invaded my head.

I'm going to talk to my daughter Katie and see if she would be interested in joining the board.  She is 18, a Sr in H.S., and not your typical teenager.

Happy New Year!!

Beth

My CH started when I was a teenager (15?), well I still am.

Fortunately now it's pain-free time (although I have other health problems). I am really happy that this stage of my education will be over in like 4 months. I always had the best marks but now it doesn't really matter how good will I write my final exams (equivalent of a-levels), I just want it to be over, as the most of my life during school was about CH...

Beth, I would be thrilled to talk to Katie if she'd like. I'm always here to help. She's more than welcome to join as you well know. And "not your typical teen" is right up my street.

Washed-out, I remember talking to you when you first signed up. I'm afraid with the switch to the new board I lost you some how but it's good to see that you're back. I'm glad that you're doing well and hope you pass your finals with flying colors. It's great to hear from you again.

Please, any one who is a teen or has a teen that has to know our beast, don't be afraid to send them to me. I'm always here to talk, listen, and give advice in any way that I can. Email and IM screen names are ready and willing to be given out for those who need them. One of my new year's resolutions is to help as many teens and "kids" as I can. Clusterkids are tough but they need support too! That's what I'm here for. Happy New Year all!

Broken

P.S. DJ or Steph, if you could please, a sticky for this thread would be greatly apperciated. I'd like for as many to find it as possible. Thank you!

This is such a wonderful thread I'm all for keeping it near the top.

;)

Minxy

:-* :-* :-* :-* :-*Just wanted to say a big thanks to those who are helping me keep this at the top because with school and work and everything I just don't always have the time to bump it. So thank you guys and once again...
BUMP! ;D

Broken

Bump  ;D

Birthday bump  :)

Hey guys, I've checked out the site a few times since the summer but finaly decided to post some stuff. Another teen clusterhead here, going on 4-5 years now, well this years ill be 20 but i definetly know what its like to be a teen with clusters so id be happy to lend support

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!

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. :)

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

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.  ;)

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

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!

Broken

Thank you DJ/Stephine! :)

Broken

I believe it was Steph.

Oliver

YEA!!!  You got a sticky!

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.

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.

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 :) this has definitely been a tough ride

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

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...

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.

Im 23 but i cosider myself a teenager also :D

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

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

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.

Kassi wrote on Oct 10^th, 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.

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.

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..?

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

Thanks for the very quick reply  :). 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.

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.

Tom I know I sound like a stroppy old bat but I have CH and my youngest son does too - I get very passionate about kids and CH potential and it IS extremely rare.
Let us know how you get on - I'll be looking in to see for updates!

Thanks
Helen

Today's GP appointment was awful (notice how I refrained from swearing).  I told my mum the night before that I wanted to get transferred to a neurologist and she told me that there was no way that she'd let me.  I quote "You'll offend Dr Watt and he is a very experienced doctor.  He says he's seen Cluster headache before".   >:( My dad is very keen for me to get off prophylaxis and onto abortive treatments.  However I'm not allowed to ask for specific things;  I told my mum that I wanted to try oxygen and explained about how it was a vaso-constrictor her response was "I'm not having big oxygen tanks around the house they'll look ugly".  Now, normally I'm not prone to violence but I swear down I've never wanted to hit her this much before.

I'm shocked about my family's response; my sister's line is "They're just headaches you hypochondriac".  My family aren't stupid.  My dad works for the NHS and so does my mother, my sister is supposedly intelligent too.  WHY WILL NO-ONE TAKE ME SERIOUSLY?!?

So I went to the GP hoping he would recommend something that didn't suck ass.  His prescription was for Sanomigran (Pizotifen) but double the does.  The average dose for migraine suffers is 1.5mg at night; cluster-heads receive typically more like 3-4.5mg a day.  My dose?  Up from 0.5mg to a massive 1mg.

I probably should have wrote this after I'd calmed down however after suffering through 2 headaches kip 6-7 I doubt I'll BE in a good mood for the rest of the 4 weeks I have to wait to see him again.  Hopefully my cycle (That is of course if I'm episodic) will end before I personally go insane and try something stupid.

Tom please DO NOT do anything stupid. We want you here, even if we can't help. Others can tell you better than I how many we've lost to this battle. Please do not make yourself another to our list.
We all understand how hard families can be. My biological mother wanted to believe that my father was just being dramatic and that my own migraines could be solved simply with being ignored. I completely get what you are going through and you aren't alone. That's what is important to remember: you are NEVER alone. I'm sure if you asked anyone here they would be more than willing to give you email, phone numbers, im, anything you need for some one to talk to.
As for the violence towards your mother, highly not advisable. It will just cause you more trouble than you are already having. But a suggestion that we always recommend is let her look at this site. Have her talk to the people here. Some one will be able to talk to her as parent to parent and explain why it is so important you see the proper professional help.
I hope that you will stick with us. I know it's hard a lot of the time but giving up is not the answer. We are here for you. All of us. That I can promise. Luck and love my friend. Keep on fighting.

~Felicia.

Tom, would you please show your parents the comments written here to date.
I am a cluster headache sufferer and I also have a son with CH. I'm english but I'm currently in New York. I'm the President of OUCH (the Organisation for the Understanding of Cluster Headaches) in the US and I'm a member of OUCH UK too.
If your parents would like to talk I would be more than happy to call if they are prepared to pm or email me a number. My email is on my profile information and you can send me a private message right here on this site.

Your parents can look at the OUCH website at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE or also the OUCH UK website. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
OUCH UK also have a helpline, it's an answerphone so if you call and leave a ring back number they will call back.

As I have stated, pain this severe needs full investigation by a headache specialist. I'm really concerned that you do not have a diagnosis based on an MRI investigation. Until you have that no one can be sure of what it is. I am NOT trying to scare you, just convey the importance of full investigation to your parents.

Pizotifen is what was being prescribed 40 years ago for CH when there wasn't anything else. There are much better, more effective drugs advocated in the BNF (British National Formulary) and I'm very surprised to hear Pizotifen is being used given that it's not very effective. It isn't a front line CH med, in fact, I wouldn't even have it in my rear guard!

Hope it helps, please let us know how you're doing. We'll wory about you otherwise

Helen Williams (just in case you or your parents want to check me out on OUCH  :) )

Thanks guys!  My mood has improved and I'm not quite as annoyed.  I had two terrible ones yesterday; one was my worst ever.  I have shown them this site and pointed out the comments recommending getting referred to a neurologist; my mum's response was:

"They're both American, our health system works differently.  We let the GPs have a go whilst the Americans have a doctor for everything."

Thanks for the help though, you two have been brilliant  :)

Also my reference to something stupid wasn't suicide, don't worry :)  I was referring to something more like that over on clusterbusters.  I don't think I'll bother though.

Thanks again guys  :)  Time for school! :(

Tom I'm not an American, I'm English and my experiences for myself and my son fall under the NHS. I have my GP who is the most wonderful GP ever in the history of the world and she has pointed out herself that GP's are supposed to treat what they can and refer stuff that is more complicated to specialists.
You don't see GP's delivering babies routinely for goodness sake!  ;D

I live in England, in Nottinghamshire, I am merely here for a visit.

Show her the OUCH UK site too - she'll see the same info on seeing a neuro there. The point is, pain of this severity HAS GOT TO BE INVESTIGATED.

I've had two of my worst ever.  I've been crying literally begging my parents to make me an appointment.  Last night they said "We don't know how bad it is but you have our sympathy".  After a bit of a nudge in the right direction they agreed that I was old enough to manage my own treatment.

:) RESULT!

I booked a doctor's appointment today;  I was given the choice of either labelling it urgent and getting in in just two days time or waiting for seven days...  My appointments on Monday, which I do feel a little guilty about but quiet frankly I consider it to be the priority above urgent.

My parents have said I can ask for whatever I want...

Sumatriptan, oxygen and neurologist here I come!

Granted this time I'm not going to ask...  If I have to I will personally sit on the chair until he agrees and/or gets me forcefully removed.  :)  Life is full of hope at the moment because there is no motivator like agony...

Print some of the most relevant stuff from the oxygen info link to the left of your screen and bring it with you for him or her to read. Your chances are a little better that you won't come off seemingly deranged.

Oxygen info is listed in your doctors BNF - he can't deny it when it's in print in his own prescribing bible!

Sumatriptan subcutaneous injections are recommended in the BNF as the best option for CH. The tablets and nasal sprays are not a recommended option for CH as they are not considered fast acting enough. If your GP suggests those he is doing so on grounds of cost which is not allowed. The injector is like an epipen so it's not really like giving yourself an injection, more like point and click!

If you need to have nasal sprays ask for Zomig or zolmitriptan. It's more effective than sumatriptan for CH and the effects last longer.

By the way, Sumatriptan is IMIGRAN in the uk. Do not say imitrex although you'll see that word used everywhere on this site.

To prescribe Oxygen he needs to fill in a HOOF for you.
That is a Home Oxygen Order Form.

He needs to tick the box for ambulatory oxygen so you get small portable cylinders and he needs to mark it as using non rebreather masks not nasal cannulas.
He should also write "Cluster Headaches" in the comments box as it helps the O2 company know what YOUR needs are.

If you need any more help on how it works in the UK let me know! There are subtle differences in med names and procedures and we want you to get it right - good luck! I'll be thinking of you on monday!

Helen

Thanks everyone!  You've all been great.  I'll get some of the oxygen information, Helen I have read the entry in the BNF although my copy is from 2003 I believe.  I noticed it said that the subQ injection wasn't recommended for under 18s.  Is this still it there?  Will it mean they won't prescribe it?  I believe Zolmitriptan as a nasal spray is also 18+ will I have a problem with that aswell?

At the very least I expect to walk away knowing I'll be getting oxygen  :) 

Everything is looking up again :)

Great Ormond Street Hospital have a clinic for paediatric headache, it's overseen by the Institute of Neurology (as kids can't be treated there) so it's the best place there is for kids with HA conditions.

I know they prescribe the injections for kids of 14 years and up with CH.

If your doctor has any problems with prescribing you have two options, ask him to call them for advice, and refer you to a neuro!

One thing to note, you need to see a headache specialist neurologist. Many neuro's specialise in different fields and you need to see a HA specialist. It's your right under NHS guidelines to see a specialist in the area of your complaint ie Headache!

Now - I don't know if you have to see a paediatric HA specialist neuro or whether you can see a neuro who treats adults. 
If you have to see a paed (or if there isn't a ha specialist neuro in your area) you have to be allowed to travel to an area where you can see one.
There is no limit on where you can travel to so you could ask to be seen at GOSH  or even the ION if you need to move out of area for treatment. (Not keeping writing out full names!!)

I hope this helps!
Helen

I have just come back from my GP appointment.  I think it went relatively well.  I asked straight out for oxygen and Sumatriptan injection.  He said he wasn't comfortable prescribing them so I asked to be referred.  I now am waiting for a phone call to tell me where and when.  He gave me some more Pizotifen and some codeine phosphate (15mg).  I doubt it'll work but I'm not bothered, I got a neurologist appointment!!!  :)

Keep phoning until the appt is set and then ring the neuro's secretary and ask for cancellations too - I'm really pleased!

I haven't received a phone call yet but as soon as I do I'll be on it.  I'm not going to let this slip from my hands when I'm so close!

I thought my cycle had ended earlier today (Not shadows for a while) and got all excited, I was gutted to realise it hadn't.

Hello there guys :) (I've never looked into this before)
I used to get boughts of cluster headaches starting very very young for only about half an hour in the morning (usually while I watched television) then I would get it for longer periods about when I was 11. Then three years later, last year I got them so bad every other day I missed so much school. My mum even had to pick me up from school and found me alone in the school bathroom pacing and screaming. It's so bad. So my trend seems to be every three years. I'm afraid I will get it again in senior year. Just knowing the trend scares me, each time is worse than before. And sometimes I feel pings of it.

First off I love the name. Totally made me smile on a very crap day.
Anyway, welcome. Glad you found the site and this thread. I hope some one here can be helpful. I understand that this is scary. Just remember that YOU are in control, not your head. And we are always here to help.
I have to ask a question though. You said when you were young they bothered you while you were watching tv, then later while you were in school. Do you were glasses and when was the last time you had your eyes examined? It seems stupid but I know when I wore glasses if I focused for to long I would start to get a migraine. While CH is nothing like a migraine it is still something to consider.
I hope some of the others can help too. They know more about the meds and such than I do. But one thing I suggest is if you haven't already, get a proper diagnosis. It can make all the difference. Best of luck and lots of love.

~Felicia.

yeah ive totally done all the mris and neurologists and none of them knew what was up. i basically self diagnosed myself from reading symptoms of it. i did wear glasses, and my vision seems alright. i don't know what caused them, they went away for three years and just came back randomly one morning last year. i got meds and i was eating them like nothing every week (almost 9 a week when its supposed to be 2 a week) and the oxygen barely did anything.

Hey Tom, where you? Did you get the neuro appt?

thecatspajamas wrote on Feb 26^th, 2010 at 9:57pm:

yeah ive totally done all the mris and neurologists and none of them knew what was up. i basically self diagnosed myself from reading symptoms of it. i did wear glasses, and my vision seems alright. i don't know what caused them, they went away for three years and just came back randomly one morning last year. i got meds and i was eating them like nothing every week (almost 9 a week when its supposed to be 2 a week) and the oxygen barely did anything.

Hmm. Well as said before you should really have a proper diagnosis. Pretty much no matter where you live there is a clusterhead within a short distance. I'm sure that some one on the board can help you find a nero or specialist that lives near you.
Also, be careful eatting pain pills. To much can be very dangerous and it can get worse if you build up a tolerence. We like you alive my friend.

~Felicia.

QnHeartMM wrote on Feb 26^th, 2010 at 11:24pm:

Hey Tom, where you? Did you get the neuro appt?

Yeah, sorry. I've been really busy, it's mock week at my school and with exams and headaches I've just forgot to update you guys.  Sorry!  I have an appointment, it's tomorrow.  I'm so unbelievably hyped up, I just keep telling myself that Monday could be the day when I get some abortive medication. 

This Pizotifen, I think I might have been a little too quick to judge it.  Sure, I get the headaches but they rarely hit a 7 now... With a higher dose who knows! 

Ok I just got back from my neuro appointment.  It was great!  I'm getting put on oxygen and verapamil.  He didn't want to prescribe sumatriptan because he said the fact it made you drowsy defeated the objective.  I'm not too bothered by that though.  He's writing to my school so if I get one in an exam I can have extra time :)

Oh and I'm having a brain scan... :)

Quote:

...the fact it made you drowsy defeated the objective.

Defeated what objective? To keep you alert and peppy, or to get rid of pain? That excuse by your doctor sounds whack to me.

Brew wrote on Mar 1^st, 2010 at 2:06pm:

Defeated what objective? To keep you alert and peppy, or to get rid of pain? That excuse by your doctor sounds whack to me.

That's what I originally thought, I think he was talking about its uses in exams...  I'm not too bothered, considering everything else went OK, I'll cope.  He's helping me to arrange to have oxygen put in at school so it shouldn't be too bad.  :)

Tom I'm thrilled that you got help. He may not be the best doctor in the business, but at least he's trying. Good luck hun.

~Felicia.

Thanks a lot guys, I'm seeing my GP again tomorrow, my neurologist is supposed to have emailed him the details but he said he would copy me in.  I have seen no such email.  I sent him a reminder a couple of days ago but who knows :(  Oh well, perhaps my GP will just take my word for it...  I'll tell you how it goes tomorrow.

Hey again, my neurologist had emailed him the details.   I'm supposed to be having an ECG on Tuesday and I'm currently looking at a very attractive box of Verapamil Tablets. The dosage of the Verapamil seems worryingly low.  My neurologist adviced starting me on 120mg yet my GP has started me on 40mg to be increased to 80mg after 7 days then up to 120mg after another 7 days.  If the 120mg dose doesn't work (I read on ouch 240mg is usually minimum) I have to wait a further 10 days before I can book an appointment then probably 6-15 days till I'll be able to see my GP.

He seems to be ignorant to the fact he's asking me to wait a whole month in agony...  Not impressed. 

Anyway, he's consulting Air Products and the local pharmacy about getting me oxygen, the only thing I know for certain is that it will be 100%, judging by the way things have been working out I'll probably end up with a nasal cannula.  However, once I get the tanks that's the main thing covered. 

I've also flat out refused to come off pizotifen or start Verapamil until I have access to oxygen.  I think that's pretty fair... 

Hope you're all coping,
All the best, Tom

Another teen with CH here. Brand new member, and have only been having CHs for about 6 months. I see alot of people have 'diagnosed cluster headaches', but I dont see the point in going to a doctor. Should I think otherwise?

YES!!!!!!!!!!!
Getting diagnosed by a doctor can be the best thing for you. If you don't really have CH, trust me hun, you DON'T want them! To modify the words of Hamlet, "Get thee to a nero!" ;D (Seriously though, get there.)

~Felicia.

My name is Jonathan. I guess I could make an estimate of saying i have delt with cluster headaches since I was 7. Im 16 now bout to turn 17. When I was young they only came every blue moon, but as I get older, they matuer. I just found out what they were. Before I knew what it was, I was having to take the pain. No one around me new what it was. Thought I was having a regular headache, and even I thought it was. Finally after I described it to my mom and she talked to an old friend who's husband is an episodic clusterhead we found out what it was. It is hard to deal with the pain. Waking up almost every morning with it. I have been in deep sleeps and it would have me go almost insane cuz i would still be in the deep sleep but I wouldnt know why my "dream world" was so painful and blurry. When I am juz asleep, not deep sleeping, it will wake me up. Sumtimes I'll get an attack at school and won't be able to pay attention. One time my teacher got onto me bout having my head down. And when I told her that my head was hurting really bad (this was before I knew what it was) and that the light and all the kids talking was making it worse, she just told me that I should have stayed at home if it was that bad. she said it like I was making it up and wasn't in that much pain but I was in pain. And these headaches come everyday almost (the occasional day off) so I couldn't just not come to school. Though with it hurting so bad, feeling like sum1 is useing an icepick on the bone on my right and sumtimes left eye, I get kinda scared of what is to come. It matures like I said. I don't want to have such the pain. But I'm happy that their is a place I can come and vent.  :-/ also for those looking for a bit of relief. this med. called caphragot (if that is how you spell it) or G.E. Ergotamine caffeine tablets. It helps a lot. Take one at the when you have a shadow.

I'm sorry it took me so long to get to you dear. It sounds like what you are dealing with is a mix of CH and mirgaines. Light and sound usually don't have the same effects with a cluster as with a migraine. My suggestion is get your self to a doctor, preferably a nero. They will hopefully be able to figure out what is going on for certain. It is always good to know what you are dealling with for sure. Lots of luck to you.

Always,
~Felicia.

Hello, everyone. At the moment, I know zilch about my problem. I have the barest amount of information, and I'm aware you cannot diagnose me over the internet. (Or in person, for that matter.)

I'm only posting this because I'm unsure. I AM getting extreme headaches, but only since about a five days ago. It happened twice so far, both times in my 3rd period class. Both times, I felt as if my head was going to burst, and I almost screamed aloud. I managed to contain it, but I had to leave the classroom. I couldn't sit still, and with my teachers permission, I left.

I'm only posting here in the hopes of relating to another teenager, or perhaps a more experienced person. I'm 16, and I have NO idea what is happening.

Well you found a place to get connected my friend. Hopefully you do not have CH though and will not have to be here long.
From the sounds of it, you most likely do not have clusters. If you have only been experiencing them for a few days then it could be (and most likely is) something else.
A few questions you need to ask yourself though:
1. Have you had any sort of headache in your past to compare these ones to?
2. What kind of stress are you under?
3. How long do they last and how intense is the pain on the Kip scale?
4. Where is the pain located mostly?
My next suggestion is start a log of the pain in a notebook. If/when you go to see a doctor(preferably a neurologist) about these headaches, that will be their first suggestion. Its always nice to be a step ahead.
Hope you find your answer quickly so you can get the relief you need. Keep in touch and keep us updated. We are here to help the best that we can.
~Felicia.

Hi, i have been having Raging headaches for about 2-3 months and been back and foward to different doctors and they have given ideas that it was my pill i was on, which we tried out but decided it wasnt this, finally the other day i was diagnosed with cluster headaches, its nice to finally know what it is that has been making me have these headaches but the doctor didnt really explain much about it to me, i have been given propranolol. Just wondering if anyone can give me an insite to this medical condition, and if anyone else has been given this medication? just a bit more about me is that i am 16 and live in the uk. any feedback would be amazing :)

Welcome to the board Amy. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. Do visit your local support group as they have more area specific advice for CH'ers:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the meds section of this board and read the post, "123 pain free days and I think I know why", it’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

As to the propronolol......not really a main stream med, indicates the doc your seeing probably isn't that up on CH, all the more reason to get a referral to a headache specialist neurologist.

You're young, if it is CH it's probably a lifetime malady. Not the end of the world but the sooner you get a handle on it the better the rest of your life goes! ;) Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Hi Felicia (and all the other clusterheads out there),
I am ecstatic that while researching I stumbled over these forums! Since registering I've been provided with so much information that sheds light on such a convoluted, medical phenomenon. It is comforting (and somewhat unfortunate) to realize that individuals amongst the globe have established a forum dedicated to those who suffer from cluster headaches.

As for my introduction; Howdy! My name is Brennon and I’m currently sixteen years old (however, will be celebrating my birthday in five days). I was not diagnosed with episodic cluster headaches until this year (had my first episode when I was thirteen years old), after previously being misdiagnosed with being dehydrated, sinusitis, seasonal allergies/migraines, and chronic paroxysmal hemicranias.

My episodes for the past, few years occurred during January/February, but until last year they started during June/July/August. My cluster headaches span out between a month and month and a half, but it only takes the onset of one to realize this period seems like eternity.

In accordance with the theory that the hypothalamus is involved with cluster headaches, I believe that my internal, biological clock has influenced their occurrence. Being that I am on summer vacation, I do have the luxury to oversleep (and sometimes I do). However, if I am not awake and engaged in some sort of stimulating activity by eight o’clock (sharp), I will have a headache either at eleven o’clock – twelve or two o’clock – three.

I have recently been prescribed four, different abortive treatments:

• 100% pure, medical oxygen (7986 liters/15 pressure/15 minutes) – Provides relief, but does not abort the headache unless additional medication is taken beforehand.
  
• ZOMIG (2.5mg) – This has been my “go – to” table since the beginning; ZOMING in combination with oxygen, I find relief within ten minutes and my headache is aborted within fifteen (it’s a godsend). I’ve had the opportunity to take the pill and dissolvable tablet, and while I’d opt for the dissolvable tablet anytime (it takes effect much quicker), I haven’t been able to attain it. The only negative aspect to ZOMIG is that there isn’t enough of it per prescription. And there isn't enough prescriptions per episode.
  
• Sumatriptan Succ (50mg Tablet) – I tried this tablet once; it took too long to take effect, and even when it did, my headache wasn’t aborted until I was able to fall asleep; maybe the dosage is too low?
  
• Sumatriptan Nasal Spray (5mg) – I tried this nasal spray twice; having not been instructed on how to use the spray the first time, I sprayed it directly into my nostril and continued to breathe through my nose afterwards (if you have ever been prescribed this you know that is a big “no – no”). A few hours later, I could not endure the pain any longer and thus, this was the first time I was admitted to a hospital because of a headache. My second attempt at the nasal spray did not prove to be any more effective than the first (fortunately I did not end up at the hospital). It took too long to take effect and the oxygen is impractical until I am able to breathe through my nose again; maybe the dosage is too low?
  

I am sorry that my introduction has been rather lengthy, but I hope it has been insightful! However, before I conclude I have four questions of my own which I hope you would consider answering.

• Regarding the “Sumatriptan Nasal Spray (5mg)”, would anyone be able to tell me how long I should refrain from breathing through my nose? I did so for fifteen minutes (just to be safe), but I was dying for oxygen afterwards. Also, does posture influence the distribution of this medication (I am aware that the best way to inhale oxygen is sitting in an upright position)? Immediately after spraying the medication through my nostril I could do nothing but lean over the sink and leak.
  
• In addition to the medications previously mentioned, I was prescribed “Prednisone” from June 28 to July 1 as an anti-inflammatory for my cluster headaches. I started at 40mg and gradually decreased by 10mg over the four day period. A couple of days ago, I realized that my back was covered in acne. At maximum, I’ve had maybe three or four pimples on my shoulders, but I was wondering if the “Prednisone” could have caused it? And if so, are there any solutions? I know this isn’t an acne related forum; however, I was prescribed “Doxycycline Hyclate (100mg)” to treat previous acne, and I am using what’s left of it (I am desperate).
  
• As for my fourth question, is there any medication (previously mentioned) that I should use sparingly? In other words, should I limit my intake of oxygen, ZOMIG, and/or sumatriptan because they could interfere with my health? I’m a little paranoid about what I put into my body, but I believe, to a certain extent, everyone is.
  

Thanks in advanced for all future responses, and I wish the best of luck to all clusterheads out there!
(I apologize for spelling/grammatical errors)

Hi,  I'm 17 - I've been suffering with CH for about 9 months now, I was first diagnosed with Paroxysmal Hemicrania - by the Nuro, the headaches became worse and with a few trips in an Ambulance to the Hospital with copious amounts of morphine, Valium, etc, I had the DR's stumped to why my "migraine" wasn't going away and why I was still in intense pain, after being told various times by a couple of the nurses to "calm down, the pain can't be that bad" (and being tempted to stab them in the eye, just to see how they would feel) my parents bumped into a Locum DR who just happened to be a Nuro, who just happened to have worked with CH's before - I now have an appointment with a specialist in London, on a high dose of Steroids and Topirimate (Has anybody had any luck with this before?). I've previously been on.... Gabapentin, Verapamil, Dyhdra-Codine, Zomig & Idometcine (excuse the spelling of those). Oh & 100% Oxygen...  The doctors are reluctant to put me on Sumpatriptain as I am currently also on Prozac.

I was also given Entonox in the Hospital and so far out of anything I've tried, that seemed to have given me the quickest pain relief...

My CH's (Cluster Headaches) began at age 11 and I was misdiagnosed for 20 years until I found this website in 1999.  So at 31 yrs old I finally realized after taking the Cluster Quiz and reading others stories that I am not alone, and began to understand what my medical condition truly is about and learn how I can help myself...thanks to this website. ;)

Middle school, high school, college years, my 20's were in many ways destroyed by CH's.  As if life was not challenging enough with homework, acne, puberty changes, peer pressure, etc.

I'm sure if I would've been properly diagnosed my education would've been better resulting in better career opportunities. 

School is extremely important as it relates to future jobs.  Relationships with family and friends suffered as a result of nobody understanding what is wrong with me, including myself.  The torture by the dragon creating undescribeable pain in my eye and skull on a daily basis, multiple times daily for weeks and months at a time, every Fall, every year took a real toll on not only my physical being, but also my emotional being.  I needed medication but no doctor was able to give me anything that worked because I was continually misdiagnosed.  Eye doctors, allergists, dentists, ear/nose/throat doctors, bloodwork, psychologists, psychiatrists, neurologists, headache specialists, CAT scan, MRIs, etc., etc.  The non-stop feeling of loneliness because no doctor could help me rid the pains and nobody else understood my explanation of my pains all led to depression and anti-social behaviors which led me to drop out of school, get expelled from school, get fired from jobs, lose friends and girlfriends, family issues, kicked off sports teams, juvenile detention, military school, jails, hospitals, created problems at dozens of doctors offices, etc., etc., etc...all because I was not properly diagnosed and I suffered alone over half my life. >:( :'(

My point of sharing a little bit of my CH story with you (the teenage sufferer) is that I personally (now age 44) truly understand what you are experiencing, as I have been your age tortured by the dragon. 

The bright side is you have plenty of resources available to help you such as the internet.  The internet did not even exist when I was a teenager. 

This website (internet) is the #1 CH resource in the world.  There is more info here than any doctor can provide.  In fact the info here on this website is how doctors learn to provide treatment to CH patients.  The people here on this site truly understand your pain and frustrations, unlike most people that don't have a clue.  If the internet were available when I was a teenager my life would be completely different today, as I would've been properly diagnosed.  So try and look at the glass as half full and be thankful you have this website filled with years and years of knowledge already put together in such a way that you can easily understand your medical condition.  It is really important that you take advantage of this website and read all you can comprehend, then read it again another time as a refresher, use the search button at the top of the screen and learn from the archives, click on the yellow tabs on the left side of your screen, ask questions in the appropriate boards and absolutely vent when you need to anytime of day or night...this is the place we call CH'ers (Clusterheads) call home away from home, welcome to Clusterville ;)

I welcome You to PM (Private Message) me if you want.

Wishing You PFDAN (Pain Free Days and Nights) ;)

-Gregg in Las Vegas

I'm now almost 35, but I had CH since I was approximately 13. It took YEARS until I was diagnosed properly, and I know exactly how young teens feel about this, and how their parents feel about it too. I know the troubles you face in school, street, club, and basically everywhere. It's not only the pain, but you got to explain to others too.

Fortunately now CH is much more well known and understood "treatment-wise not social-wise". You've got O2 and triptans.

I remember that day, one of the best of my life. :-) I was may be 16 or something, of course I have learned by then that no pain-relief medications ever work for "that thing" I got. When I was suffering in silence on the sofa, with pain driving me both crazy and half-dead, any noise would increase it, and any movement too. My mother went to buy the prescribed medicine after diagnosis, and came back to inject me with Imigran "Imitrex", and my HUGGGGGEEEEE surprise and RELIEFFF to realize the beast was gone, fully gone. I will never forget that day for the rest of my life. I am not saying that my life became easy after that point, but certainly much, much easier.

Hey,
My name is Cameron, I am from northern Indiana, a small town close to South Bend to be exact. Although I'm not a teenager, just turned 20 a few months ago so I don't know if this still counts 100 percent, I am a sophomore student in college so I guess I'm still pretty young. I was officially diagnosed with Clusters on August 8th 2012. Almost a year now and I have never met anyone who has even ever really heard of cluster headache's, other than my Spanish teacher who claims to have "those" and that they aren't "that bad, more just annoying." Not a lot of outside understanding other than from my family and those that went on the journey of trying to figure out what was wrong with me this past summer so I am glad something like this message board does exist. Even though I have no experience with things like this, I'm curious to see where it goes.

Hi! I'm Marisa. I just found this site while researching and I'm 17 almost 18 and I've been suffering since I was 14.  But I live in a small town in Maine and the first neurologist I was sent to basically just kept telling me it was migraines and I just felt like she wasn't understanding me. (where I live basically all the good neurologists won't take anyone under 18.) I had every test imaginable done and there was never anything wrong with my brain or my spine or anything. But yet I was still having such intense pain to the point where I was crying and crying. And everything the neurologist gave me did nothing. My mother also didn't think I was suffering from migraines because my sister does. And she can just take a couple of tylenol and sleep it off and she won't have another one for a month. And she also feels sick to her stomach during one. I have never felt sick during a headache. Finally we told my doctor that she just was throwing pills at me and not really trying to figure out why this was happening or what it was. So my primary doctor asked me to tell him all of my symptoms and he was going to talk to an 'adult' neurologist and find his option. I told him everything that I felt. That it was one sided, it was an intense throbbing pain, that my right eye swells and waters and my nose runs, that I wake up with them in the middle of the night. That I get no relief from them. That I was having them a few times a day and everyday for weeks at a time and then I'd go a few weeks without them and then they were back again. After telling him all of this and he talked to the neurologist he said that I had to have cluster headaches. And I'm on oxygen therapy and a few other things for pain relief until I see a specialist five hours away from where I live. I honestly never had pain like this in my head until I started having these. And I had cancer and chemo when I was 12. And I would honestly say that these headaches are 1000 times worse than anything that I had done during chemo. (some of my doctors are wondering if chemo somehow did damage to make these headaches start but there's no way to know that.) My night attacks are the worst though. I don't get any sleep. And since these headaches have started when I was 14 (which was my freshman year) I've missed SO much school. I'm struggling just to make sure I graduate this year. (If I don't find relief I don't even know how I'll survive college.) I'm going on basically three months of being out of school right now because they've been so god awful. I literally will wake up with one and be walking back and forth or rocking and crying. and telling my mom i need my oxygen tank changed. or that i need to go to ER at 4 in the morning because I can't take the pain and how exhausted I am. Lack of sleep is killing me. Last night I had such a bad night attack I woke up today with a swollen eye that looks dark and bruised like i was literally punched in the eye. It takes so much out on me. Not only me but my mom. She's up all night with me sometimes (bless her, she is amazing. she researches so much on them and tries to find different things that could possibly help.) rubbing my neck or changing my tank. Or sometimes taking me to the ER when she was to work the next morning. And I get so agitated at everything. I feel bad because I take it out on my family and my boyfriend(who has been with me since we were 14 and has been through all of this with me. Bless him also.) I also feel so depressed and down during them and it's hard. I feel like I have no life. I literally am in bed all the time because I'm in pain or because I got no sleep the night before. When my boyfriend and I do stuff together it usually involves watching movies or TV because I never feel great enough to go out and do things. When I'm feeling good though he'll take me out to eat or to the movies.
Not sure if I'm episodic or chronic yet. I have them A LOT. I had a cycle start May '13 and end July '13. But I had them back September '13 and basically have had them since. And it seems like since I was 14 and started getting them that once I get them I have them longer and longer.

But I'm soo glad I found this website! It's so helpful. It makes me feel like I'm not alone and that they're other people who understand what I'm going through. I seriously cannot wait to go to the specialist and get some sort of help because I can't take it.

I'm so glad you found us, it's a lot tougher for girls to get a CH diagnosis as the knee jerk reaction to a female with a headache is migraine!!! :D Do stick around and read everything you can on the board. Let us know how the appointment with the specialist goes. Hopefully they'll get you on a decent prevent med and send you home with a home oxygen set up! Good luck.

Joe