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01 Aug, 2010 - 12:17 pm

My seven year old son has cluster headaches. They have increase in pain intensity to 10 out of 10 for pain. Unbearable. He also has mitochondrial disease. He feeds with machines, may go blind and experiences neuropathis pain. Does anyone have or know of children with similar problems? It is so sad to see him go though so much pain. we are trying indomethacin and sedation. The combination takes the headaches away for a few days. However they return. We are fund raising to try and find a cure for mitochondrial disease. We arebtrying acupuncture And will also try LED ro help with the head pain. Any advice would be greatly appreciated. Thank you. Martine (toms mum).

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01 Aug, 2010 - 3:01 pm

Hi Martine, welcome to the site

Oxygen to abort an attack is probably the best idea for him, considering he's probably on other drugs. Talk to your GP about getting oxygen.

Please let us know how it goes. Age 7 is not a good age to have to deal with this!

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01 Aug, 2010 - 4:24 pm

Thank you. We will look into oxygen therapy. As Tom feeds with machines etc I will have to ensure there is no problem with introducing oxygen. I have also been told that additional oxygen may be bad for Mito sufferers. Will ask his neuro.

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02 Aug, 2010 - 5:32 pm

Sorry I cant help but my heartbreaks for you. I have children similar age and cant imagine them going thru the torture of cluster headaches.
Really hope someone can help your precious little boy xx

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02 Aug, 2010 - 5:44 pm

Hello Martine and Hello Tom
And my guess is that Tom is a real little battler along with it all.
It makes me less conscious of my own problems.
Certainly oxygen is a good starting point if he can manage it in line with his other treatments etc.
Good luck
Heather

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02 Aug, 2010 - 9:06 pm

Toms headaches are increasing - 4 today. The first at 1am. Poor boy. It is really difficult not being able to take the pain away. We are trying LED treatment as of this afternoon. Fingers crossed it will help.
Thanks for comments.

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02 Aug, 2010 - 9:25 pm

See my post on nerve root block, I have just gone a year without a CH, it dosnt hurt and I dont have too take drugs, hey it worked for me! If i can help out in any way just message.

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03 Aug, 2010 - 11:38 pm

Hi Martine, Tom,
I wish I had an answer for you! The closest thing I can suggest is check out the children's section (its within the supporters section) of clusterheadaches.com the US site. I don't like to have to send you elsewhere for info, however In america they have quite a number of children diagnosed at young ages and may be able to give you the help you require. My heart goes out to you guys, I know what its like to support an adult with CH but to have this horrific condition as an innocent child is just devastating!
If there is anything we can do to help or you just need a shoulder to cry on let us know.
Wishing you both Pain free days and sending my prayers to you!
Regards Shell
Please let us all know how you guys are doing, All the best, Goodluck!

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04 Aug, 2010 - 7:50 am

benny said:
"See my post on nerve root block, I have just gone a year without a CH, it dosnt hurt and I dont have too take drugs, hey it worked for me! If i can help out in any way just message."

Thanks I will have a look at the nerve block post. Although trying LED therapy at the moment. Time will tell. We just have to live with the pain hopefully until the LED takes effect. They say 10 days. Worth a try. Thanks, Martine.This post was edited on 05/08/2010 at 12:37 am

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04 Aug, 2010 - 7:51 am

shell said:
"Hi Martine, Tom,
I wish I had an answer for you! The closest thing I can suggest is check out the children's section (its within the supporters section) of clusterheadaches.com the US site. I don't like to have to send you elsewhere for info, however In america they have quite a number of children diagnosed at young ages and may be able to give you the help you require. My heart goes out to you guys, I know what its like to support an adult with CH but to have this horrific condition as an innocent child is just devastating!
If there is anything we can do to help or you just need a shoulder to cry on let us know.
Wishing you both Pain free days and sending my prayers to you!
Regards Shell
Please let us all know how you guys are doing, All the best, Goodluck!"

Thanks Shell,
I will have a look at the childrens section. Tom had is worst pain to date yesterday. 40 minutes of pure screaming!!!! Heart breaking. Thanks Martine.This post was edited on 05/08/2010 at 12:38 am

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09 Aug, 2010 - 10:17 pm

Hi Martine,
I have a seven year old son who is in the process of a diagnosis between CH and one of the others in the TAC group. The onset for my son has been much milder than what you are describing, but I do know that we have been exceedingly lucky in that. Can't help much - being so new to this myself - other than to offer my support. The other people here are incredibly helpful, with a wealth of knowledge. Ask any questions you have. Someone will have the answer.
Good luck
Al ;^)

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15 Aug, 2010 - 7:00 pm

Karmadog said:
"Hi Martine,
I have a seven year old son who is in the process of a diagnosis between CH and one of the others in the TAC group. The onset for my son has been much milder than what you are describing, but I do know that we have been exceedingly lucky in that. Can't help much - being so new to this myself - other than to offer my support. The other people here are incredibly helpful, with a wealth of knowledge. Ask any questions you have. Someone will have the answer.
Good luck
Al ;^)"

Thank You for your support. We are really going through a difficult time. It is also being suggested Tom may have CPH although his symptoms fit more under CH than CPH.
Good luck to your son too.
Martine.

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09 Apr, 2011 - 3:25 pm

Poor Baby boy...
I have two daughters and if this condition is genetic, i could not bear to see my babies in such pain... i really feel for you and wish you all the best helping him

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10 Apr, 2011 - 10:04 am

HI

my son suffers this and it is affeting all aspects of his life. He is 21 and lost his apprentihip and not has no motivation. I was thinking of O2 as a option for him he went to hsi GP and was advied is only for lung problems

Can you advise em where you get them.

He feels there is no future ATM and i was hoping i could find someone whom would give hip a light at the end of the tunnel such that he can change his mind set?

any input appreciated

regards

Craig

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10 Apr, 2011 - 1:26 pm

Hello Craig
Step one--you need to find a GP who has at least an understanding of what CHs are and knows that oxygen is a treatment for them. Contact BOC 1800 050 999 I am sure they can advise you of someone in your area who is a GP who can help you.
This is not a monumental problem that should stop you.
Your son needs help obviously--as you do too Craig.
Finding an understanding GP is the priority. You obviously dont live in the sticks--your function now is to find someone who is knowledgable in the are of treatment of CHs.
Your son now needs to become proactive in his own treatment.
I am only assuming that he has a clear diagnosis of CHs and this has come from a neurologist? In other words he has been investigated fully with scans and MRIs and that there is nothing other that it could be. You owe it to your son to be sure that there is no other illness or other causative.
That is enough for now.
Get on to that oxygen--there is absolutely no reason why a Doctor can no give your son a note to say that he can have oxygen unless there is a medical reason why he can not. There of course is a cost involved. Your doctor can not give your son a script as such, it is not a medicine that he is being given. Call BOC for guidance.
Come back to us for more help.
Good luck and yes you have come to the right place.
Heather

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11 Apr, 2011 - 3:19 am

Toms headaches said:
"My seven year old son has cluster headaches. They have increase in pain intensity to 10 out of 10 for pain. Unbearable. He also has mitochondrial disease. He feeds with machines, may go blind and experiences neuropathis pain. Does anyone have or know of children with similar problems? It is so sad to see him go though so much pain. we are trying indomethacin and sedation. The combination takes the headaches away for a few days. However they return. We are fund raising to try and find a cure for mitochondrial disease. We arebtrying acupuncture And will also try LED ro help with the head pain. Any advice would be greatly appreciated. Thank you. Martine (toms mum)."

hi, im 14 and ive had them for about 4 weeks now and ive started doing alot of research and this site is what ive came up with i went to my doctor last week and he told me to take nurofen -_- ive been taking it and nothing is there some sort of medication that will make me forget about it or somen like pot but not smoking it but i have smoked pot since this started and it really made me forget about it.

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11 Apr, 2011 - 11:49 am

Hi Rocketman
Sorry to hear that you have joined our lot with CHs.
Smoking pot I am sure is probably going to make you forget about them for a bit, but not going to help you in the long term! And you know being one of those old dudes (I am 64--OMG) you know I have to cut in and say -you cant do that!!!, bad for you and all that stuff; but really it will be hard to maintain and I would think pretty costly, and certainly wont stop them from coming. and puts you at risk in other areas.
Really Rocketman, what you need to do, is assuming you have parents or carers, is to return to your doctor and let him/her know that the nurofen is not working or to find another doctor to help you more. You need someone who knows about the treatment for CHs. I assure you they are out there.
Have a read up on all the stuff on the left with your parents, get them to read as well. Then make sure of the diagnosis. How did the dr diagnosis you, just from your history.
Check out the information on the oxygen. This could be helping you almost immediately.
Get you parents involved in this site as well.
Come back to us Rocketman and we will see how we can help you some more.
Heather--not quite such a Rocketwoman, bit old put still got some power left!

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13 Apr, 2011 - 12:27 pm

Hi Dusker

Would you know any doctors suitable , we live in cronulla caringbah area and his doctor said he can only prescribe O2 if he has lung cancer / problem. I alos would love to find someone whom may suffer this whom has managed to deal with it and get on with their life, if local, whom may have time to talk to him as he is very dispondent.

Thanks

Craig

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13 Apr, 2011 - 5:24 pm

Craig, I am assuming you are Rocketman's Dad?
Welcome anyway.
First of all I really cant help you with specific doctors in your area, unless they are on the medical practitioners link on the left.
Re the prescribing oxygen. You dont need to get a prescription per se.
But first of all that means to me that possibly your doctor does not have an understanding of the need for oxygen for someone with cluster headaches.
Why not trial oxygen first at a local ER room. I dont know what is local to your area, or if you can go to a hospital or not. Check the O2 treatment link on the left.
The getting of the oxygen is not a problem in reality. I suggest you contact the BOC agent in your area for some assistance. The number we have as a contact is 1800 050 999. Try them. If you do not get enough assistance from them, please come back to me. All you should need from a doctor is a "note" saying you require oxygen. Follow the guidance on the link. This will not be a prescription. It will cost you. But it is not an arm or a leg.
I feel your son, this is a very distressing illness--he does need some help, and from a GP who understands what CHs are all about. This may mean searching your area. You may need to do the old ring around first to ask if the GPs are familiar with dealing with patients with CHs before your front up to save some mileage. You do develop a front bigger that David Jones for this type of thing I can assure you!
Also not sure of how diagnosis has been ascertained. Has he been seen by a neurologist?? Who made the diagnosis and how?
Please remember we are not medicos here, just fellow sufferers just trying to lend a helping hand.
First be sure of diagnosis, second find doctor who can really help who knows what doing.
Good luck
Heather

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13 Apr, 2011 - 6:06 pm

thanks

not much time now but no My son is Ross and 21 His Gp diagnosed but i was with him when weq visited the neurologist also


rgards

Craig

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13 Apr, 2011 - 11:40 pm

Hi Craig
Sorry about that, I should have picked that up by the where from!
So seen a neurologist so diagnosis should be on the ball.
There should be no problem with getting oxygen then. Just check with BOC and check what you need and then ask the GP for that. You should be OK.
Let Ross know that there is definitely light at the end of the tunnel, we are here.
Heather

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17 May, 2011 - 9:06 pm

I just read this and I have two children myself and I cannot imagine my children going through these headaches. What a cruel amount of pain for such an innocent child, I will pray for him. How did you find out?

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