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Supporter's Corner >> Children and Cluster's >> 14 year old daughter. . . http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1118347266 Message started by tenacious_one on Jun 9th, 2005 at 4:01pm |
Title: 14 year old daughter. . . Post by tenacious_one on Jun 9th, 2005 at 4:01pm
OK. I a, so happy that this is the first site I opened when I typed in a search for info on cluster's.
My 14 year old daughter started complaining about headache almost a year ago. My oldest (16) suffers migraine, so I was really worried that she too was having the same thing go on. But hte more she talked about them, and the symptoms I know they were differnt! I finalky took her to the eye doctor thinking it may have somethign to do with her 'lazy eye' and followed that route for quite a long time. WHen she wasn't getting any relief and the headaches were coming more often and more painful I took her to the ER on night, she told the ER doc what she was experiancing and from her explanation she could have written the clinical syptoms herself. She went straight down the line and named every symptom for a cluster. We ae waiting for a pediatric neurologist appointment but have to wait until July 6th for that appointment, we live in Alaska. . in the Matanuske Valley. About 45 minutes from the city of Anchorage, Alaska. The neurologist's are all backed up for mnthes at a time! Anwya, in the mean time she is being treated with narcotics. I am not entierly OK with this but it does offer her some relief when the pain is unbearable. I am thinking of asking the doctor to switch her from the vicodan, codiene, and fioracet, to Ultram. Can anyone tell me what is best for this pain in children? I am so desperate to help her. I want to take the pain myself! I would if I could, from both of my daughters. . . . why why why is all she askes me, why her. She told me that she would rather be dead then to go through the pain any more! I would appriciate ANY and ALL comments. Please share with me your successes and failures with helping YOUR child! Thank you, Tenacious_one |
Title: Re: 14 year old daughter. . . Post by Drk^Angel on Jun 10th, 2005 at 9:11am
Call the neurologist's office everyday, and inquire if they have had any cancellations. There can be a long wait for a first time visit with a neurologist, but like any doctor, they will get plenty of cancellations, and if you're lucky, they'll be able to squeeze you in a vacated slot. Good luck! *hugZ* Thanks.
PFDAN......................................... Drk^Angel |
Title: Re: 14 year old daughter. . . Post by tenacious_one on Jun 10th, 2005 at 3:26pm
:) 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 |
Title: Re: 14 year old daughter. . . Post by E-Double on Jun 10th, 2005 at 4:06pm
Good for you MOM!!
Some tricks that I used to use and sometimes still do are: *Wrapping a bandana tightly around my skull (be careful) *Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering it. *Going from Steam to Frigid shower. *Standing infront of A/C *Icepacks or frozen veggies on the back of the neck or eye *Tons of STRONG coffee. or Coke or REDBULL Hang in there :) |
Title: Re: 14 year old daughter. . . Post by LeLimey on Jun 10th, 2005 at 4:32pm
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 |
Title: Re: 14 year old daughter. . . Post by cazman on Jun 17th, 2005 at 10:45pm
when i have nothing i take a shower real hot beating the back of my neck till its steaming hot i run to the darkest place in my house and pack the heated area with ice its a shock at first but for me it works most of the time in all honesty some times its rare it makjes it worse like everyone is say keep trying what you read here its like building a war chest cause basically it is war with a nasty mean beast, i dont know about anyone else but aside from me being cursed with this i just found out this week my daughter also 14 yrs old has been diag with ch i know how that feels in the heart belive me i know i was feeling very guilty till my freinds here slapped some reality into me its not my fault i certianly didnt ask to be this way at least megan has someone close that totally understands
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Title: Re: 14 year old daughter. . . Post by hdido on Jul 12th, 2005 at 11:25pm
I recommend taking your daughter to a good pain clinic that has someone on staff, an anesthesiologist, who works with CH and other chronic pain patients. I also recommend insisting that all the docs involved in your daughter's treatment correspond with each other on a regular basis so that each knows what the other is doing and can coordinate treatment. Good luck and I am so sorry that someone so young has to have this horrible disease; hope that she goes into a long, long remission.
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Title: Re: 14 year old daughter. . . Post by ELINA_HALONEN on Aug 1st, 2005 at 2:45am
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 |
Title: Re: 14 year old daughter. . . Post by LeLimey on Aug 1st, 2005 at 6:13am
Hello Elina,
I'm so sorry you have to be here, we do have another member in Finland who I'm going to contact immediately in the hope she can give you some good local information as I'm hesitant to mention anything regarding meds in connection with a young girl, I think kids are best left to doctors as I'm sure you can understand. You really have my sympathy, I do so understand how hard it is for you. My little son has CH too and he is only 3. It hurts so hard to see our children in pain doesn't it? If ever you would like to talk please just send me a message okay? lots of love, I'll be thinking of you Helen |
Title: Re: 14 year old daughter. . . Post by sandie99 on Aug 1st, 2005 at 1:29pm wrote on Aug 1st, 2005 at 6:13am:
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 :) |
Title: Re: 14 year old daughter. . . Post by Out0fTheMist on Nov 15th, 2005 at 4:44pm
Hi, my daughter Sam begin CH's when she was in 1st grade. Hers are herditery (lol can't spell it). Sam is now 16 and we are still learning to deal with these headaches. The best piece of advice I can give is don't be afraid to stand up and fight for your childs rights as a human being. Too many doctors are willing to rule out CH in children due to their age. Sam has been told she's too young to suffer CH. GRRR!! The huge difference in juvenile migraines and clusters (Sam suffers from both) is that Sam can't sit still in a full blown cluster, she just wants to die.
Be prepared to argue and fight doctors, school and a society that will not listen. I am now fighting Social Security to have her listed as disabled, its very hard for me to work a full time job when I am ready to drop and run when the phone rings and it's Sam with a CH. She knows if she is at a friends house for the weekend it does not matter the time of night if she gets hit by a CH, I am on the way. In the school systems there is homebound programs (teachers come into the home), try to get your child in Special Ed under Other Health Problems. Have her IEP based around her headaches. With the "New No Child Left Behind" laws in the USA, if a child misses more than 20 days of school a year, its automatic failure. For Samantha 20 days of missing school in any school year is a given with CH's. IEP's remove this stress from you and the kids. (ps.. the doctors will fight you on this decision also). Full Steam ahead!!! As a mom who watches her child go through the pain of a CH, I know how hard it is. This is one childhood hurt we can't put a bandage on or kiss away the pain. All we can do is become the best support system and give our kids the courage and strength to fight all the odds against them. Many times I sit with Sam thru a CH, not saying a word but letting her know I am there. If she can stand the touch I rub her feet and this seems to help in keeping her calm. I have learned pressure points in the feet I never knew existed but if it helps Sam with the pain I will learn everything I can. When she's at the devil's 10 level of pain, all I can do is sit quietly and wait. That's the hardest part. Watching the child of your heart going thru so much pain that she begs you to stop it or help her die. But as her pain begins to fade away and she looks up and you watch her eyes clear from pain and she starts focusing on her surroundings again, you tell yourself I can do this for my child and you will. Blessings and love, Ruth [smiley=hug.gif] |
Title: Re: 14 year old daughter. . . Post by maffumatt on Nov 15th, 2005 at 7:35pm
Ruth you are a strong woman, and a damn fine supporter.
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Title: Re: 14 year old daughter. . . Post by Daddys_Devil on Apr 1st, 2006 at 12:04pm
I'm 14 so I can relate. I don't have ch but I do have migraines and live with 2 cluster heads myself.
From personal expericances, I find these things help the best: 1) Ice,ice,ice,ice! If that only makes it worse try heat. 2) Silence,stillness, and sleep. 3) Have a diary of her headaches to show to the doctor. Keep a recording of where it is, how bad, what causes more pain, what helps, and how long it lasts. The doctors should look at this to see any signs for ch or other headaches. 4) Be as helpful as possible but DON'T over do it! Hope this helps. Let me know how everything truns out. |
Title: Re: 14 year old daughter. . . Post by sagerats on Feb 1st, 2008 at 1:14am
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. |
Title: Re: 14 year old daughter. . . Post by nani on Feb 1st, 2008 at 1:24am
Hi sagerats. There are other headache disorders that are similar to clusters. Clusters generally last from 30 minutes to 3 hours.
The good news is that some are 100% responsive to indomethacin, which is a prescription NSAID. Have her see a neuro who specializes in headaches. In the meantime...do some research on TAC headaches, especially paroxysmal hemicrania and icepick headaches (sorry, I can't remember the exact scientific name for those). Good luck, and keep us posted. |
Title: Re: 14 year old daughter. . . Post by sagerats on Feb 1st, 2008 at 2:05am
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. |
Title: Re: 14 year old daughter. . . Post by outofcommission on Feb 3rd, 2008 at 9:45pm
hello tenacious_one glad to see you here. i was 10 when i started getting chs. i went to doctors and even the dentist. it was frustrating but mom held it together pretty good. i didn't get diagnosed until five years ago at the end of my last cycle and that was a mere suggestion from my trusty family doctor. before i went any further with it the pain stopped. i don't like putting kids on narcs. i think they mask the the pain rather than help the problem. however i am not a doctor. o2 has worked as a good abortive for me if i catch it early. any thing you try do it in moderation. try one thing and give it a week or so. o2 is pretty much universal though. it works with just about anything. i know getting a ch at school wasn't much fun. feel free to send me a pm if you have any questions or if your just upset.
johnny |
Title: Re: 14 year old daughter. . . Post by syrs842 on Apr 25th, 2008 at 11:00pm
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 |
Title: Re: 14 year old daughter. . . Post by rose on Aug 10th, 2008 at 4:03pm
I'd definately reccomend melatonin my daughter has been on it for 3 1/2 years when she first started it gave her the best sleep she'd had in months you do get used to it though so she's now on 12mg sadly she's now going through a really bad spell so doesn't seem to be as effective. It's also a natural substance found in fruit and cereals so i'm a lot more comfortable with her being on it. Some points to remember: when you first take it you're asleep very shortly after, you can get used to it so may have to increase it; also there's two types one which is a slow release (useful if you wake in pain) and one which only lasts half an hour so for maximum effect you should go straight to bed after taking it. My daughter is on 6mg of each I hope this helps and all you sufferers get some better sleep! :)
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Title: Re: 14 year old daughter. . . Post by TomM on Dec 8th, 2008 at 4:52pm
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 |
Title: Re: 14 year old daughter. . . Post by cristeenam on Jan 11th, 2009 at 3:46am
welcome, i just want to say that your daughter is lucky to have you, i was 14 when my clusters started, and no one understood or really even tried to understand, my mom said i was being dramatic. i had no clue what was wrong with me until i researched it myself when i was 24. my clusters started after i had surgery to repair a broken leg and ankle so i was given narcs for that, they didnt help much. im 31 years old now and i for the most part lived a normal life, it made me cry when i read your post, just remembering my journey with theese things, and wondering why us? school was difficult, but i did finish, and i think once she gets some good treatment and with you by her side shell be just fine. i wish you both the best
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Title: Re: 14 year old daughter. . . Post by rachel2w2 on Jan 19th, 2009 at 1:41am
Hi, My name is Rachel. I myself suffer from cluster headaches and I know firsthad how it utterly SUCKS! :-[ But your on the right path! You DO need to see a neurologist! Thats what me and my mom did, they gave me a steroids shot and some steriod pills to take for a week 7 the first day 6 the next then 5, and so on, and a bottle to take once every day for a month, I noticed results immediatly! And it turns out the the part of the brain that can [or can not] be affected by clusters is connected somehow to your 'biological clock', cluster headaches are most prominent durring the daylight savings times, spring and fall. so when you do get treatment you might need to go back in 6 months for another. kind of sad but I got treatment last fall and its coming up to spring and anxiety is slowly setting in. But I really do hope this helps! the steroid shot and the pills were what did it for me :) so good luck and I really hope that I gave you some insight! [sorry for any spelling errors.]
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