Hi Tenacious_One - so sorry that you've got a child in pain.  That just breaks my heart.

When you say she could have written all the symptoms for cluster - have you taken the quiz at the left on her behalf?  Cluster is quite often misdiagnosed and it's very dangerous to take medications designed for cluster headache if, indeed, there is something else going on.  Always best to have an MRI or CT Scan to rule everything else out.  

However, if this is cluster:  first of all, you're right to not like her taking narcotics!  Narcotics traditionally don't do anything to fix clusters.  They mask the pain, sure, but that's about it - other than addicting the patient.  I'd sure try to get her off that stuff and do it soon!  There are other abortive drugs out there for cluster and, depending on her weight and general physical health, she may be old enough to try them.  Imitrex is a popular abortive and it can be administered by nasal spray or injection.  Don't waste time with the pills, they take longer to work and they are a higher concentration of the med - she probably only needs a 5mg or 20 mg spray, whereas the pills usually come in 50mg doses.  She'd probably prefer the spray though.

However, a better thing you could do for her is to get her a prescription for oxygen.  Non-rebreather mask, flow rate higher than 8 litres per minute.  It's a very effective and much safer abortive.  Your GP can prescribe it although most of them don't know that it can help cluster.  Print out the pages in the Oxygen button to the left  here and don't leave the office without a script!

Another thing you can do for her is to apply an icepack at the onset of an attack - that really helps some people.  You can even use a bag of frozen peas - they are pliable and mold to the shape of the face or back of the neck.  It will also help keep her calm during an attack.

Here's a good link to dealing with head pain in children - there may be some more suggestions in there.

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There are also preventative meds out there but I'm not sure what is safe for kids to take.  You're her best defense, Mom - read everything you can and educate yourself so you can know what to ask for at the doctor!  Cluster is very rare and, sadly, a lot of doctors are still not completely current in the different treatment regimes that are out there.

Keep us posted and sharpen your teeth - get her into a neuro fast.  No child should have to endure this pain while waiting for a doctor's appointment.  If the neuro is cluster knowledgeable at ALL, he won't make his cluster patients wait like that.  Sometimes you have to blast past the receptionists and demand better service.

Welcome and many hugs!!!!
Remember peace of mind will help you and her quite a bit and now that you found this place......

START BREATHING AGAIN and Help her  ENJOY LIFE!!!!!

This is  a great resource to know like the back of your hand...print it out and give it to your doc   
    
    
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It will present the appropriate treatments that you should seek and your doctor should know!!!      
    
***Ask for a script and if needed FIGHT fOR Oxygen...    It is extremely beneficial for us (CHer's) and without many of the isdeffects of many a medication.

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Educate your doctors!!! 
 

Does she just get them @ night or also during day?.....

If she does have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful 
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep. 

With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time. 

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not... 

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern. 
I stayed with melatonin and have had decent sleep overall. 

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression..... 

Like I said we are all different.

Here is a letter that you can give your employers, colleagues, professors, fellow students that will explain in very simple language what it is that we go through.
How CH is a misnomer!! Headache..yeah right!

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Best wishes, good luck to both of you & stay as positive as you can!!!! 

Eric

Thank you all for the response! I wasn't expecting so much so quickly! I have to say, it was so wonderful to open my mail box this mornig to see that so many of you have information that Tia's doctor is "looking into"!! I can't wait to bring her back today for her appointment and to have the information printed out for her! I am also taking the advice of calling the neuro everyday to check for cancellations. I am not one to bother people and that is what it would feel like to me to call over and over to check for a cancelation at the neuro office.
But this is differnt. . . . one of my children is suffering and I can't stand to sit back and watch her go through it ANY MORE.
When I called and asked our family doc for a RX for oxygen, she asked where I heard about this. . . so I gave her the web-site so she could see first hand where I am turning for help. I hope she checks it our. This is one place where I have found what I am looking for: Support, and help for my daughter!! Thank EACH & EVERY ONE of you!
Tis wakes up in the middle of the night (usually 3 or4 hrs after going to sleep) with a headaches that hurts enough to not only wake her but to come wake me up because the amount of pain she is in scares her!
Has anyone tried ice, or heat? We are going to start trying the other options, aside from the narc's that she has as a back up. I can't wait to get oxygen, it seems to be the most effective according to so many of you!

Again, Thank YOU very much!
Tenacious_Tonia
ps. sorry for the ypo's in the first message, and thi one! I am in a bit of a hurry! Today is the last day of school and the kids are BUSY!
tenacious_one1@hotmail.com

Hi again Tonia!
I'm the opposite to Eric.. heat is a big trigger for me and a hot steamy atmosphere like the bathroom or the kitchen is just unbearable. COLD works for me, ice packs or going outside in the night air and that works more for Jasper too. I have found redbull or coke to be a help but the ones WITH sugar.. the diet varieties did not help (and I really don't like the full on sugar ones I have to say!) Keep them as ice cold as you can get them too (or at least that is what I do)
I know where you are coming from finding it hard to make a fuss.. for me too I tend to just accept things but by heck we are tigresses when it comes to our kids aren't we?!!
Don't forget that narcs are NOT a recommended treatment for CH. Imitrex is a good abortive and my fears that it might not be suitable for someone of your daughters age pale into comparison against the worries I would have about dishing out narcs to her!! Imitrex comes in nasal sprays or injections. There is also Zomig which is another triptan which has a longer half life than imigran so you might want to speak to the doc about that one too.
Reading is your best weapon at the moment.. that and speed dial! Don't be afraid to do either okay?!
(((HUG)))
Keep us updated okay?
lots of love
Helen

Cazman I'm so sorry, I've got tears running down my face here for you and Megan. I know just what you are both going through. I feel so terribly guilty too for passing it on to my son and whilst I know I need a slap for thinking like that.. its a parent thing having guilt trips isn't it?! Jasper and David and I are about to take part in a genetic study here in the UK to try to isolate the gene for CH. They have done alot of work already but aren't there yet. It does give me hope that they will find a cure. If you ever need to vent we a re all here for you, those of us who ARE parents of kids with CH and those of us who aren't. Margi is an incredible supporter and she has some fantastic links for kids with CH which I don't have the link to on this puter. If she isn't along shortly to post it I'll find it and add it for you.
Give my love to Megan, I'm glad she has someone who can fight her corner! And a big hug to you too.. its a rough ride.
lots of love
Helen

Ps here is the link I mentioned. You might have already found it!

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HI,
We live in the midlle of Finland, in the city named Kuopio. I have almost 15-years old daughter, who`s suffering cluster. It started almost 3 years ago and I think I know what you are going through. I have fighted for her all this time. In this summer we finally get the apointment to the best neurologist in Finland. When the awfull pain cames she takes oxygen 10 liters per min, imigran injection and stesolid per. rectum. This makes no good. We have to take her to the ER every time and it means almost every single day.There she get`s more stesolid and finally haloperidiol infusion. Before this apointment  they geve her opioids and first it helpt, but then she needed it more and more and finally it didn`t helpt at all. Now she gets kortisol in big rate and it keeps the attacts away. It seems to us that nathing is going to help our daughter. The neurologists told us, that somewhere  in Europa they operate those people who has no help from medication, but here in Finland they haven`t done it yet . I hope that you get the relief from oxygen! My daughter asks you to give her love to your daugther. She tryes to be brave, but she is exhausted. She has also  bad migraine ;so as her bigbrother. GOOD LUCK to both of you and don`t give up!  Elina

Quote:

I'm the another member from Finland. Check your instant messages, Elina!

If I can help in any way, let me know.

Best wishes,
Sanna

Ruth you are a strong woman, and a damn fine supporter.

I'm very new to this website and message board and this may not be the best place to put this but my daughter is now 14 and has been suffering from cluster headaches for 4 years now.

However, according to the cluster quiz and cluster traits pages you have on this website she would not be qualified as having cluster headaches.  She was diagnosed by a Dr. and has had an MRI and other brain scans which showed nothing wrong with her brain.

My daughter's symptoms last only 15 - 30 seconds.  There is no warning, she goes from fine to on the floor in a split second, holding the part of her head that is in  pain, sobbing, and screaming.  She says it feels like someone is stabbing her in the head with a sharp, red hot poker.  They can happen in different parts of her head, some in front some on the top/back, some on the side.  She does not get sick to her stomach or have any other symptoms like I have read on this website.  She can have them 2-5 times a day for several weeks, starting out with just a couple working up to more and then tapering off again.  Then a few months with nothing. 

After a headache she is still crying and holding her head but she says it's more out of fear then actual residual pain.

We have tried several of the natural remedies I have read about on here, Magnesium seemed to help, or so we thought.  I now wonder if we just started using it near the end of a cluster, she went into remission, and she is now having another cluster. 

I've read some of the other natural options like 02 and water and so on, but these seem to be to help shorten the duration of the headache.  Hers happen so fast there is nothing you can give her in time. 

I am looking for any natural remedy I can to help her.  It can be completely startling and scary to see her fine one moment and then on her knees in the next, as I'm sure many of you know.

I look forward to reading your responses and suggestions.

Nani,

Thank you for your quick response!  I looked up the three headache types you suggested and ice pick headaches really fits.  I think now that the Dr. who diagnosed her called them cluster headaches because they come in clusters.  Several over a few weeks and then nothing for months, then another "cluster". He never mentioned ice pick headaches, but did say they could be called a flash migraine. 

At any rate, I am looking for a natural remedy.

Hi tenacious_one,

I hope your daughter is doing better. I can't imagine a child going through this pain. It's terrible and if I could I would take it all away for her. I know as a mother you must be in deep pain yourself.

When i first starting these horrific things, my neurologist gave me injections. They don't work for me anymore but they may work for your little girl. It had 3 components to it. Methotrexate, lidocaine and I'm not sure of the 3rd one. If you have a neurologist you may just ask him/her if they know about this. It may be good for her to have at least 4 or 5 months relief.
Pat

Ultram is what I was first prescribed before I was daignosed w/ CH. I still hve an Rx for Ultram as I use it for my arthritus. As I recall, it is a "fake" narcotic and not addicting like other opiates.
None the less, this does not help the CH but merely masks the pain.  Get to a nuero and then get an Rx for O2. Use the link to the left for more info.
Good luck!
TomM