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Teen Clusterheads Click Here! (Read 23895 times)
LeLimey
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Re: Teen Clusterheads Click Here!
Reply #50 - Feb 7th, 2010 at 3:09pm
 
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
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Re: Teen Clusterheads Click Here!
Reply #51 - Feb 9th, 2010 at 10:23am
 
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".   Angry 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.
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Felicia
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Re: Teen Clusterheads Click Here!
Reply #52 - Feb 9th, 2010 at 10:08pm
 
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.
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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
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LeLimey
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Re: Teen Clusterheads Click Here!
Reply #53 - Feb 10th, 2010 at 8:07pm
 
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 Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register or also the OUCH UK website. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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  Smiley )
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Re: Teen Clusterheads Click Here!
Reply #54 - Feb 11th, 2010 at 2:58am
 
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  Smiley

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

Thanks again guys  Smiley  Time for school! Sad
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LeLimey
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Re: Teen Clusterheads Click Here!
Reply #55 - Feb 11th, 2010 at 10:30am
 
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!  Grin

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.
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Re: Teen Clusterheads Click Here!
Reply #56 - Feb 12th, 2010 at 12:47pm
 
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.

Smiley 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.  Smiley  Life is full of hope at the moment because there is no motivator like agony...
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Re: Teen Clusterheads Click Here!
Reply #57 - Feb 12th, 2010 at 1:20pm
 
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.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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LeLimey
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Re: Teen Clusterheads Click Here!
Reply #58 - Feb 12th, 2010 at 2:04pm
 
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
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« Last Edit: Feb 12th, 2010 at 2:27pm by N/A »  
 
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Re: Teen Clusterheads Click Here!
Reply #59 - Feb 13th, 2010 at 2:37am
 
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  Smiley 

Everything is looking up again Smiley
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« Last Edit: Feb 13th, 2010 at 7:44am by Tortured  Tom »  
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LeLimey
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Re: Teen Clusterheads Click Here!
Reply #60 - Feb 14th, 2010 at 10:13pm
 
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
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Re: Teen Clusterheads Click Here!
Reply #61 - Feb 15th, 2010 at 7:10am
 
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!!!  Smiley
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LeLimey
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Re: Teen Clusterheads Click Here!
Reply #62 - Feb 16th, 2010 at 11:19am
 
Keep phoning until the appt is set and then ring the neuro's secretary and ask for cancellations too - I'm really pleased!
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Re: Teen Clusterheads Click Here!
Reply #63 - Feb 16th, 2010 at 11:45am
 
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.
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Re: Teen Clusterheads Click Here!
Reply #64 - Feb 25th, 2010 at 10:38pm
 
Hello there guys Smiley (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.
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Felicia
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Re: Teen Clusterheads Click Here!
Reply #65 - Feb 26th, 2010 at 3:35pm
 
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.
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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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Reply #66 - Feb 26th, 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.
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Re: Teen Clusterheads Click Here!
Reply #67 - Feb 26th, 2010 at 11:24pm
 
Hey Tom, where you? Did you get the neuro appt?
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Re: Teen Clusterheads Click Here!
Reply #68 - Feb 27th, 2010 at 8:29am
 
thecatspajamas wrote on Feb 26th, 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.
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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 #69 - Feb 28th, 2010 at 6:45am
 
QnHeartMM wrote on Feb 26th, 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!
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Re: Teen Clusterheads Click Here!
Reply #70 - Mar 1st, 2010 at 12:44pm
 
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 Smiley
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Re: Teen Clusterheads Click Here!
Reply #71 - Mar 1st, 2010 at 12:51pm
 
Oh and I'm having a brain scan... Smiley
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Reply #72 - Mar 1st, 2010 at 2:06pm
 
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.
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Re: Teen Clusterheads Click Here!
Reply #73 - Mar 2nd, 2010 at 2:51am
 
Brew wrote on Mar 1st, 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.  Smiley
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Felicia
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Re: Teen Clusterheads Click Here!
Reply #74 - Mar 2nd, 2010 at 11:39am
 
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.
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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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